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Wednesday, July 16, 2008* * * * * * * * * * * * * * * * * * * * OH MYYYYYY!!! Well God has just opened the flood gates. Caroline has started eating so much!! She wants a waffle everyday for breakfast, but she has also eaten a glazed doughnut after I convinced her to put it in her mouth. She has eaten hotdogs, a chicken nugget, chicken and noodles ( Thanks Uncle Mike- Cousin Mike-I give up), burrito, refried beans, all kinds of chips (her preference is cheese Doritos), peanut butter toast, peanut butter sandwich, sausage, pizza, Smarties, popcorn and all kinds of crackers. It seems like she is trying something new everyday. Praise God!!!! Please continue to pray that she will drink more liquids. I think she is probably eating enough calories to not have to have a tube feeding, but she is not drinking enough liquid. Caroline's speech is getting better everyday. She says new words everyday. She is working on the color words. Purple is her favorite. Her therapist says that her speech will improve as she starts eating more. Eating helps build the muscles that you use to talk. She has spent most of her life not using those muscles. Caroline's personality is really developing. She LOVES to dance and be around other kids. She loves animals especially dogs. She will point out every "wuwu" (the sound a dog makes) in sight. Thanks for your prayers!!! Saturday, June 14, 2008* * * * * * * * * * * * * * * * * * * * * I do have to apologize for not updating in so long. I was hoping to get a video to put on the web of our great news.
Two years ago the doctors basically told us, “You will just have to wait and see what Caroline can do-mentally, physically, etc.” The neurologist said she would probably have Cerebral Palsy and it would probably be the worst kind of CP. While she was still in the hospital I was awake in the middle of the night on two consecutive nights. I was reading my bible in search of what we had done wrong, the meaning of all this, answers, help, etc.
On the first night God took me to Matthew 11- Jesus told them, “ Go back and tell John what’s going on: The blind see, The lame walk, Lepers are cleansed, The deaf hear, The dead are raised, The wretched of the earth learn that God is on their side.
On the second night God took me to Luke 7- In the next two or three hours Jesus healed many from their diseases, distress and evil spirits. To many of the blind he gave the gift of sight. Then he gave his answer: ”Go back and tell John what you have just seen and heard: The blind see, The lame walk, Lepers are cleansed, The deaf hear, The dead are raised, The wretched of the earth have God’s salvation hospitality extended to them.
Coincidence?? I don’t think so. Godincidence?? Absolutely!!!! I truly felt like God was telling me that Caroline would one day walk. Well, I am proud to tell you that God is incredible, amazing and true to his word!!! We have seen a miracle right before our eyes. Caroline is now a walking girl. Praise God!!!
We have moved all our therapy to Presbyterian Hospital of Plano. So, Caroline now goes once a week to physical therapy, occupational therapy and speech therapy.
She is doing great in speech. She says so many words, but she still prefers to fuss to get you to do what she wants. That has been her learned way of communication. Bad habits are hard to break. She has started jibber jabbering. She has alot to say we just need to work on the pronunciation.
Occupational therapy is going very well. I was having a very hard time giving up control of what goes in her mouth. But I have done that now and Caroline is feeding herself. She still gets a bit messy, but she is improving everyday.
Eating is still an issue. Caroline eats (by mouth) 3 pureed meals a day. Which means the blender and I are “tight” . Then she gets one bottle of Pediasure and most of her water through the tube before we go to bed. BUT she has made a HUGE turn. I told you in February that Caroline ate 7 goldfish crackers. Well, that was all she wanted at that time. It has taken several weeks, but she will (when she feels like it ) eat graham crackers, Ritz crackers, Club crackers, hot Doritos, sour cream and onion potato chips, vanilla wafers, Fritos and sugar cookies. I can’t even begin to tell you how thankful I am that God is answering this prayer!!!!! Thursday, February 14, 2008* * * * * * * * * * * * * * * * * * * * *
I hope you have had a terrific Valentine's Day!!! We have seen another one of God's miracles today. Caroline ate AND SWALLOWED about 7 Goldfish crackers today. We are so excited!!! God is soo great. He does everything in His time. Also, Caroline is getting braver and taking more steps (without the walker) everyday. Saturday, February 2, 2008* * * * * * * * * * * * * * * * * * * * * Okay, I am finally taking the time to sit and write. We had a very crazy Christmas!!! Michael went into the hospital the Sunday before Christmas. He was in the hospital until the Thursday after Christmas. So, the kids and I did Christmas at our house. Then we went to his parents to celebrate with Randy and Penny’s family. We had a great time. The twins celebrated their 2nd birthday on January 23rd. We had a small family party at our house. We have a lot to be thankful for. Caroline loves her walker. She uses it all the time. She is very fast and very good at turning it and getting where she wants to go. She has started taking 2-3 steps on her own. It won’t be too much longer and she’ll be walking on her own. Praise God!!! Caroline is still doing speech therapy every Tuesday. She says just about anything that she WANTS to say. You usually cannot ask her to say something and expect her to do that. She does EVERYTHING when she wants to. (She has quite a temper!!!) Her latest words are: broccoli soup, apples, mine, uh-oh! (everything is uh-oh), Corban, shoes, yogurt, etc. Feeding is still very slow. I have now burned up one blender. So, I had to invest in a better quality blender. Her purees have a little texture. This past week I got her to chew up a small chip then I gave her a bite of her puree and she swallowed all of it. Technically she ate a chip. God is good!!!
Tuesday, December 25, 2007* * * * * * * * * * * * * * * * * * * * * * *
Merry Christmas I Spy… The Beauchamps - 2007 Car: We spent 12 weeks (3 times a week) taking Caroline to Plano for Vital Stim (electrical stimulation). This a pic of my old Taurus that we are finally going to trade in for a bigger vehicle. YEAH!!!! Blender: When we started Vital Stim Caroline was eating 1-2 ounces of yogurt. She now eats 8-12 ounces of pureed food three times a day and she gets one meal through the tube. Scale: Corban is off the growth chart for height at 37 inches and weighs in at 26lbs, which puts him in the greater than 98th percentile. Caroline is still working on gaining weight and trying to get on the chart, she is currently in the less than 3 percentile. She now weighs 21.8 lbs. Sign Language “more”: Corban and Caroline are learning to sign, and Claire is picking it up too. Mouth: Caroline is going to speech weekly. She is saying many words: baby, ball, Mama, Dada, Hello, Bye Bye, cracker, uh oh, Ellie, & doggie (just to name a few). Caroline walking: We got the walker about 5 weeks ago, and Caroline has decided that she is a walking girl. Corban: Corban is a great brother. He takes very good care of his sisters. T-ball, Soccer ball, Basketball, Tennis racket & Goggles (swimming): Claire has been very busy this year trying out all these sports. Sparkie: Claire is memorizing scripture weekly in the Awana Sparks program. Heritage Sign: Claire is in the first grade this year at the school where I teach part time. OU: This summer we spent a couple of weeks with Michael’s extended family for the yearly family reunion. A week of that time was spent in Broken Bow, OK. Also, Michael is a huge OU fan. Our family at the beach & NASA sign: We took a short trip to Galveston this summer. We had a great time. We stopped at the NASA space center on our way home. Three crosses: We are still very active in our church serving our Lord. Michael still teaches the 70 year old+ men and loves it. Terri is still the Cubbie co-director. Claire sings in the children’s choir. Clock: Michael has had to work a lot of overtime this year (256 hours). Cain, Watters & Associates has added 4 new entities under its umbrella for a total of 7 companies and 150 employees, all of which are supported by CWA’s IT department. Praying hands: We couldn’t even begin to tell you how grateful we are for all your prayers. We know that God is performing a miracle right before our eyes. Manger: We pray that we all will take a little time to remember what this time of celebration is all about; Spending time with family, remembering our blessings through the past year and a baby born in a lowly manger so He could one day sacrifice His life in place of ours.
Thursday, November 22, 2007 * * * * * * * * * * * * * * * * * * * * * We have soooo much to be thankful. God has been very gracious to us this year( as always). I just have a second. If you read this in next few days please say a prayer for Claire. We were up until 6:00 am in the ER with her. She has pneumonia. The doctor let her go home to recover. Pray that she doesn't have the horrible pain that she was having and that her lungs recover quickly. Have a Terrific Thanksgiving!!!! Monday, November 12, 2007 * * * * * * * * * * * * * * * * * * * * * Wow, it has been a long time since I updated. We have been busy, busy. Michael has been working 60++++ hours a week. Which leaves me doing everything else. Caroline is doing great!!! She is still eating 3 (pureed) meals a day. Plus she still has one tube feeding at 10:00pm. We also have to give her water through her button several times through out the day, because she is not drinking very much liquid. We are still working on texture. It is VERY SLOW. Please pray that Caroline will tolerate more texture and swallow it. Also, pray that she will drink more. Last Monday Caroline got a walker (borrowed) from ECI. She is doing very well with it. She uses it when she wants to and on her own terms. But she is learning to turn it when it gets stuck. She also got SMO's last week from Scottish Rite. Caroline started speech. She is doing great!! She can say lots of of words, but again our stubborn girl does it when she wants. She says Mama, Dada, nose, ear, eye, ball ball (not a typo, that's what Corban says also), hello, bye bye, Mimi, Grandad, Gigi, Papa, Ellie, cracker, and lots of other stuff I can't think of right now. I can't even begin to tell how grateful we are for your many prayers. And how grateful we are that our amazing God continues to work in our lives!!! Monday, October 1, 2007 * * * * * * * * * * * * * * * * * * * * * We finally finish Vital Stim. Yeah!!! Caroline is doing very well. She is still eating 3 meals a day. She is still eating yogurt , pudding and soup. She will eat many different kinds of soups now. This past week I have been giving her the Hearty Soup with vegetables, meat, noodles, etc (pureed of course). We are still working on texture. That is going slow!! But she is making progress. We saw the Nutritionist last week. Caroline weighs 19.6 pounds. She is still not on the chart, but her height to weight ratio is good. We also had a speech evaluation last week. Caroline will start Speech therapy twice a week in Plano. Corban & Caroline have their well visit with the Pediatrician this week. Thanks for checking on us!!! God is good!!! Monday, September 3 , 2007 * * * * * * * * * * * * * * * * * * * * * Thank you, Thank you, Thank you for your prayers. God is answering!! We have done 10 weeks of Vital Stim. We have 2 weeks left to go. Caroline is doing amazingly well!! Even her therapist is surprised by how much progress Caroline has made. Most days she eats (by mouth) three meals and then she is fed through the tube one time (around 10:00pm while she is sleeping). Here is a list of all the things she will eat so far: vanilla, key lime, & maple yogurt vanilla, banana, butterscotch & lemon pudding cream of chicken, broccoli & cheese, cream of mushroom and cheddar cheese soup (no water and 1/3 cup of rice cereal) Occasionally, I can get her to drink the drinkable yogurt or the fruit flavored V8 juice. (thickened) Also, she was picking up Corban's cup to take some small drinks. So, now she gets her own cup. Our next prayer request is that Caroline will tolerate more texture. We are working on adding texture, but she is INCREDIBLY stubborn. Our portable DVD player now has a permanent place in our kitchen. Caroline gets to watch TV while she eats. If she spits her food out we turn it off. Also, we want Caroline to begin drinking larger amounts daily. We have an appointment with the Nutritionist on Sept. 17. Hopefully we will get Caroline's diet adjusted so she is getting all the nutrients she need. Wednesday, August 15 , 2007 * * * * * * * * * * * * * * * * * * * * *
I do have some good news to share. Caroline ate her first whole meal. It was Key Lime Pie yogurt. She ate 6 ounces of yogurt. So, she didn't have to have anything through the tube. We are so thankful that God continues to work in her life!!!!! Thursday, August 2 , 2007 * * * * * * * * * * * * * * * * * * * * * Well, we went for our last session of Vital Stim and our therapist thought it would be a good idea if we did another 3-6 weeks of Vital Stim. She suggested that because Caroline didn't start eating until the last 2 weeks of VS. So, we took a week off, and we started again this week. I am please to tell you that Caroline is doing AWESOME. She takes 3-4oz of yogurt at every meal.( She normally takes 6 1/2oz of Pediasure through the tube.) YEAH GOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My new prayer request is that Caroline will start eating foods other than yogurt. I am pureeing EVERYTHING, and I am not having much luck. The concern is that at some point Caroline will get tired of yogurt. I just pray that she doesn't stop eating at that point. Tuesday, July 17 , 2007 * * * * * * * * * * * * * * * * * * * * * * * Thanks for your prayers!!! God is amazing!!! We have one more session of Vital Stim left. I think we are all ready for that to be over. Caroline has been consistently taking between 4-6 oz of yogurt a a day for the past 4 days. Today she also drank 1 3/4 oz of thickened Pediasure. I added a link at the top that has pics from our family reunion/vacation. Sunday, July 8 , 2007 * * * * * * * * * * * * * * * * * * * * * * * Wow!! I didn't realize that it had been so long since I updated. We have been VERY busy!!!!! We have been going to Plano for therapy 3 times a week. We had VBS for a week. And we spent a week with Michael's extended family in Oklahoma. Then they came and spent a few days here with us. Caroline has
completed 4 of 6 weeks of her Vital Stim. Up until yesterday I thought it was
not going very well. Caroline is not very interested in any kind of liquid.
She doesn't like the bottle, the sippy cup, the straw cup, the open cup, etc.
So, please be in prayer for that. The good news is that she ate 4
tablespoons of yogurt this am for breakfast, then she ate 1/4 cup of yogurt
for lunch and she ate 1/4 cup of yogurt for dinner. WOO HOOOO!!! God is
Good!!!
We have also added some therapist since my last update. We have a physical therapist that comes to our house every other week. The Nutritionist comes every other month and the Developmental Therapist comes once a month. Caroline continues to make good progress physically. She is getting faster at "her crawl" every day. She is getting her knees under her body now, but she keeps one of her legs straight. She does get tired if she has to go very far, but she is "trying" to keep up with her brother. She pulls up on everything now, and she is cruising-slowly. Also, she claps, waves, gives five and she is starting to blow kisses. We are amazed at how gracious God has been to us. We are living with miracles everyday. Thank you checking on us and continuing to pray for us. Your prayers mean more than you will ever know!!!
Tuesday, June 5 , 2007 * * * * * * * * * * * * * * * * * * * * * * * We got some good and bad news today. Bad News: Insurance will not pay for the Pediaure. Pray that the Vital Stim will heal Caroline’s swallowing muscles. So, she will start eating completely by mouth. Great News: We saw the Neurologist today. He was very pleased with Caroline’s progress. He did not expect her to be doing as well as she is. YEAH GOD!!!! I asked him if she has or will have Cerebral Palsy. He didn’t answer that question, but he did say he thinks it is just developmental. He doesn’t want to see her again unless we have any problems. Woo Hoo!!!! Caroline is doing AWESOME physically. She is getting better at the “scootchy crawl”. She came half way down the hallway this week, and she made it to the toy room this morning. We got her some new Nikes. It has helped with her walking. She is still very unstable and doesn’t have good balance, but she is more eager to take steps with her new shoes. Vital Stim is going well. Our therapist said it would probably be a couple of weeks before we saw results. She is taking about an ounce and a half during therapy. Which is more than she has been taking. Wednesday, May 23 , 2007 * * * * * * * * * * * * * * * * * * * * * * * We have seen another miracle today. Caroline stood herself up in her crib today. PRAISE GOD!!!!!!! I put a couple of new pics on Caroline's page. She was so proud of herself. She is also getting good at the "scootchy crawl". She is very purposeful and can get where she wants to go. She is not very fast YET. I'll be chasing 2 little ones very soon. PRAISE GOD!!!!!! No complaining here. Please remember to pray for Caroline. She starts VitalStim next week (29th). Pray that this will allow Caroline to swallow so she can completely eat by mouth. Thanks for your prayers. They do make a difference. We are seeing evidence of your prayers daily. Wednesday, May 9 , 2007 * * * * * * * * * * * * * * * * * * * * * * * * WOO HOO!!!!!! Caroline got approved for VitalStim. She starts therapy May 29. PRAISE GOD!!!!! She will go to therapy three times a week for 6 weeks. Please be in prayer that VitalStim will strengthen Caroline's swallowing muscles and allow her to completely eat by mouth. We still haven't heard if insurance will cover the Pediasure. Caroline is doing GREAT!!! She is really making some great improvements. She can sit herself up from a laying position. She is starting to get a little more mobile. She is making some big steps towards crawling. She gets up on her hands and knees and rocks. Then she'll straighten her legs and lung forward. I call it her "scootchy crawl." Also, she sits and stands on her bench at her activity center. We are praising God for every little milestone. Last year at this time we didn't know if she would even be able to lift her head up by herself. Saturday, April 28 , 2007 * * * * * * * * * * * * * * * * * * * * * * * * Since we had the swallow study we have decided to see if we can get approved for Vital Stim (electrodes that they will put on Caroline's esophagus to strengthen her swallowing muscles). We did get the doctor to write a prescription, but we are now waiting for insurance to approve it. The therapy will be three days a week for six weeks. If we get approved we will start mid May. We saw the Geneticists a few weeks ago. She told us that Caroline probably has the “Caroline” Syndrome. I asked her how often geneticists were not able to find a diagnosis. She told me that geneticists are doing good if they can make a diagnosis in 2/3 of their patients. Dr. Scheurle ordered a FULL set of x-rays. They said everything looked normal except for her bell shaped chest (we already knew about that). The Developmental Pediatrician switched Caroline from formula ($2.00 a day) to Pediasure ($4.50 a day). So, we have submitted a request for insurance to cover this. We had our yearly evaluation with ECI. Caroline is making some great improvements. She holds her up (without any problems), she sits, she will stand and hold on to furniture for about 10 minutes, she waves & says “bye bye” and her personality is really starting to develop. Her therapist thinks she could be walking by this time next year. (WOW!!! GOD is Amazing!!!) Please pray that Vital Stim & Pediasure get approved through Insurance. Pray for Caroline to take more through the bottle and eat more purees. Pray for strength in Caroline's muscles as she learns transitions (sitting to standing, standing to sitting), how to crawl, & how to move her feet Praise God for the miracles that we are seeing daily We can’t even begin to express how grateful we are to God for all that He has done for Caroline!!!!! And our family!!! God didn't promise days without pain, laughter without sorrow, sun without rain, but HE did promise strength for the day, comfort for the tears & light for the way. Monday, April 2, 2007 * * * * * * * * * * * * * * * * * * * * * * Well, we had the swallow study today. For now it’s good news, although Caroline was not very cooperative. Dr. Sperry is pleased with the size of Caroline’s palate and the movement of her tongue and palate. She was given a bottle to drink and we were able to watch what she did with the fluid. It pooled under her tongue for a little while and then finally drained into her throat. It collected again at the back of her throat and the reaction to swallow was delayed a bit. Although she did aspirate a minor amount they saw nothing to prevent us from continuing the therapy we are currently doing. While this is good that there is nothing to prevent us from continuing, it is a little discouraging that we were not able to discover something new that may have allowed us to speed things along. Continue to pray for us and for Caroline as we press forward. Thank you so much for all of your prayers and e-mails. We are truly blessed to have so many people making petitions on our behalf!!!! “For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus.” Philippians 1:6 This is a quote from a book I am reading: “God, You are at work, and You are in control. And, Lord God, You know this is happening. You were there at the beginning, and you will bring everything that occurs to a conclusion that results in Your greater glory in the end.” ….. Charles Swindoll Wednesday, March 28, 2007 * * * * * * * * * * * * * * * * * * * * * * We do have some very exciting news to share. Caroline can sit by herself for an indefinite period of time!!! Praise God!!!! She has been doing this for about two weeks. And Corban is starting to walk. He is just taking a few steps now, but I expect him to be running by the end of the week. Caroline had an appointment with the Pediatrician. He was very pleased with her sitting. He was also very encouraged by her curiosity and attentiveness. She gained 2 pounds in the last month. So, she is up to 17.1 pounds. During Caroline’s therapy session (ECI) this week, the therapist said she felt like we were out of the woods for having Cerebral Palsy. PRAISE GOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It’s not completely out of my mind yet, but I know that our God can do anything!!! Please be in Prayer for Caroline next week. She is finally having the swallow study. The appointment is Monday, April 2nd at 2:00. Please pray that Caroline will cooperate. (She will swallow everything they give her.) Pray that she does not aspirate at all. Pray that if there is anything anatomically wrong that they will be able to see it. Mark 10:27 With man this is impossible, but not with God; All things are possible with God. Saturday, March 10, 2007 * * * * * * * * * * * * * * * * * * * * * * OH MY!!! It really has been a long time since I updated. We haven’t had any major appointments recently. But things are crazy as usual!!! Caroline is doing very well!!! PRAISE GOD!!!!! She is sitting up on her own for about 5 minutes. She will sit up holding on to a tall activity center for about 20- 30 minutes. She still loves to stand up. She loves to be in the exersaucer, because she can sit and stand as she pleases. Her feeding therapy is going well. (That’s what her therapist keeps telling me. Because it is easy to get discouraged with how slow things are going.) We have switched her to regular Pediasure (NOT thickened). Praise God that she has not been sick!!! So, she is drinking (out of a regular bottle) about an ounce to an ounce and a half of Strawberry Pediasure once a day. Caroline got her last synagis injections (RSV) for the season. She has gained over 2 ponds in the last 2 months. So, she is up to 16 pounds 3 ounces. YEAH GOD!!! We have scheduled her swallow study for April 2nd at 2:00. Please be in prayer for this. We are praying that she does not aspirate at all!! There are also a couple more questions we have that we would like to be answered. I am not sure if the swallow study will help answer those questions. Just pray that Dr. Sperry will be able to give us some direction. The questions are: Why does she still make the noise that she makes? (Her cry is not a normal cry.) Why does she have extra tissue under her tongue? (I have asked this before and we were told that was normal. I don’t know about you, but I don’t have “stuff” under my tongue.) " Thanks be to God for his indescribable gift!" 2 Corinthians 9:15 Monday, February 19, 2007 * * * * * * * * * * * * * * * * * * * * * * Happy Birthday Michael!!!!
Wednesday, February 14, 2007 * * * * * * * * * * * * * * * * * * * * * *
Happy Valentine's Day!!! We have had a rough couple of weeks. LOTS OF SICKNESS!!! Please pray that the kids will get well and stay well!! Thankfully Michael and I have not caught any of their "stuff". But because of his great LOVE for us, God, who is rich in mercy, made us alive in Christ even when we were dead in transgressions- it is by grace you have been saved. Ephesians 2:4 Monday, February 5, 2007 * * * * * * * * * * * * * * * * * * * * * * * * * Corban & Caroline had their first birthday party. We had a small party at our house. Corban loved his little cake and he ate as much as he could. Caroline was not a big fan of the cake. She was very interested in touching it, but once she got all that icing on her hand she was not too happy. She did put some in her mouth, but that was because the icing was on her thumb. She really just wanted her thumb and could care less about the cake. Corban and Caroline have both had upper respiratory infections. Then Caroline got the flu. We also took her in for a chest x-ray to make sure she did not have pneumonia. PRAISE GOD!!!!! She did not have it. Caroline has been drinking about a half an ounce to an ounce and a half of Pediasure (thickened- half nectar) for the past few weeks. We technically are not suppose to be giving her liquids because we have not had a swallow study since her surgery to determine if she aspirates. So, we were just pray that she didn’t get pneumonia. We felt like it was a risk we were willing to take, because how do you get a baby to suck on an empty bottle????? She also eats about 6-7 baby spoons of puree (baby food dessert). Just an update on Caroline’s physical therapy: We haven’t really pushed her the last few weeks because she has not been feeling well. She can sit by herself for up to 2 minutes. She holds her head up very well. She can sit assisted in her Bumbo seat or on someone’s lap for about an hour and a half. She loves to stand up. She will pull on your hands to try to pull herself up. She can stand for about 15 seconds until she needs to rest. She will do this over and over for about 10 minutes. She rolls over both ways and she has been using her arms to push herself up more and more. Her upper body is still very weak. She has really started babbling a lot. We have definitely heard Mama. We praise God for each little milestone!!!! Corban is weighing in at 24 pounds now and Caroline is almost 15 pounds. Corban finally got his first tooth about 2 weeks ago and he is now working on tooth number 3 and 4. Caroline has tons of teeth. I try not to stick my finger in her mouth too often. Her teeth are very sharp and she will bite your finger if you stick it in her mouth. Please Pray for Caroline’s trunk and upper body strength. Pray for Caroline to begin taking more from the bottle. THANK YOU so much for interceding on our behalf!!!! We have been VERY blessed to have such wonderful people at our church to step up and take care Corban and Caroline so we can attend church. Thank you Mrs. Pat, Mrs. Lisa, Mrs. Stephanie & Mr. David and all the Helping Hands!!!! Matthew 18:5. And whoever receives and welcomes one little child like this for My sake and in My name receives and accepts and welcomes Me. Tuesday, January 23, 2007 * * * * * * * * * * * * * * * * * * * * * * * * *
Happy Birthday Corban & Caroline!!!! Saturday, January 13 , 2007 * * * * * * * * * * * * * * * * * * * * * * * * We have had a very busy week! On Monday we saw Caroline’s Occupational Therapist. (We hadn’t seen her in a couple of weeks, because of the Christmas break.) She was VERY pleased with Caroline’s progress. She is holding her head up very well. She sits up on her own for about a minute. She likes to pull up and bear weight on her feet. Her knees are getting stronger. They used to buckle easier. Caroline will raise her head up while she is on her tummy for a minute or two. We are very thankful for God’s work in her life!!!! On Tuesday Caroline got her synagis injection (RSV). On Wednesday we saw Dr. Barcelo. He is very pleased with how her tongue is looking. He wants to see us again in 6 months. While we were at Dr. Barcelo’s office we talked to Dr. Sperry (Speech Pathologist). She has been doing her research. She can only find 50 cases (in the whole world, since the 1700’s) of children born with a short tongue. Most of them have other very severe anomalies that Caroline doesn’t have. We are very thankful to God for that!!!! She was also looking for cases of children with a long palate. She could not find any. WOW!!! So, we are breaking new ground. And Caroline’s case will probably be in the medical books and presented at seminars. On Thursday we went to see the Feeding Specialist. Caroline wasn’t feeling particularly well. We think she is just teething. She was drooling like crazy and running a low-grade fever. So, we are on hold for the bottle-feeding for a few days. Before this the bottle feedings have been going very well. Praise God!!! We had changed the consistency of liquid and started giving her Pediasure instead of juice. She was taking 30-45 mls (1-1 ½ oz) pretty consistently. Nothing has been consistent with the bottle feedings in the past. Thanks for continuing to check on us and pray for us!!! Please pray for Caroline to continue to take more from the bottle. Please pray for Caroline’s muscle strength to continue to improve. Friday, January 5 , 2007 * * * * * * * * * * * * * * * * * * * * * * * * There is a sweet family at our church that had a baby girl on December 9th. Her name is Traeh Renae Davis. She weighed in at 1lb 15oz and was 13 1/2 inches long. She was delivered at 26 weeks. Please remember to pray for her. She will be in the NICU for about 6 more weeks. I added the link to her website at the bottom of the page. Sunday, December 31, 2006 * * * * * * * * * * * * * * * * * * * * * * * *
We had a good a Christmas. It is now Toys R Us at our house. The kids have really enjoyed all their new toys. We want to thank you for your prayers. Caroline has made some significant improvements in her strength. Her trunk strength has improved tremendously. She can sit by herself for up to a minute. She has started being on her tummy more, using her arms to raise herself up. God is so awesome!!! Happy New Year...and May God bless your 2007 with good health, peace, prosperity, complete joy, and overflowing love! **********************************************************************
* * * * * * * * * * * * * * * * * * * * * * * * CHRISTmas Letter * * * * * * * * * * * * * * * * * * * * * * * * Wow!!! What an incredible year it has been. We could have never imagined what God had in store for us!!!! We started off the year with two new additions to our family. Corban and Caroline were born January 23rd arriving seven weeks early. Corban spent two weeks in the NICU at Lewisville Medical Center. Caroline spent 5 weeks in the NICU in Lewisville, and then she was transferred to the NICU at Plano Medical Center. After 61 days in the hospital Caroline finally came home. Corban is doing wonderfully. You would never know he was a preemie. He now weighs 22 ½ pounds. He is crawling all over the place and pulling up. He will be walking before we know it. He loves to eat, play, smile, shake his head “no”, play patty cake and get into everything. He is a very good baby, and he has a wonderful temperament. Caroline is doing well. She had a very rough start. She was born with PVL (small cysts on her brain), low muscle tone, a bell shaped rib cage, short tongue, and a long & high arched palate. She probably has some type of “syndrome”. To date they can’t figure out what it is. Because of her short tongue and long palate she was not able to take a bottle without aspirating. So, she had surgery in March to put in a g-tube. She takes all of her formula through the g-button. We go to therapy weekly to work on her oral motor skills. She likes chocolate pudding and root bear lollipop. She had surgery in September to correct her short tongue and long palate (two procedures that had never been done before). That went very well. She had a trach for 2 ½ weeks. I think that was the longest 2 ½ weeks of our lives. Caroline also sees an Occupational therapist weekly to work on building her strength. She is making good progress. She can hold her head up for about 30 minutes. Her trunk strength is improving. She LOVES to be held. She smiles, plays with toys, babbles, rolls both ways, and sits unassisted for a few seconds. Claire is doing great. She loves being a big sister. She is a great helper. In August she started Kindergarten at Heritage. She loves her new friends and her teacher. She has already learned so much. This year she has also been very busy with dance, soccer, gymnastics, church choir and Awanas. Michael is doing well. He is still working in the IT Department at Cain Watters & Associates. He is also still teaching the Senior Adult Men’s Sunday School class at Lakeland. His oldest student is 88 years old. They really keep him on his toes, but he loves it. Michael also served the last year of his three year deacon rotation and was the chairman of the Budget Committee this year. I am still teaching computers half a day at Heritage Elementary. I am so thankful that God has given me such a great job that I love going to everyday. Other than teaching I stay busy going to doctors appointments and therapy sessions. I am also enjoying co-directing Cubbies, part of the Awanas program at church. God has so richly blessed us this year. He has taken us on quite a journey. Although we still do not know the outcome, we know that He will sustain us through it all. We wish to thank all of you who have prayed for us, brought us food, watched our kids, and bought us diapers. You have truly been a testimony of God’s love. If you would like to read the full story since the twins were born you could find it at: http://www.snickerdoodles.net Our Year in Summary: 49 doctors appointments, 52 therapy sessions, 76 days in the hospital, 3 surgeries, 3800 bottles, 4600 diapers, 5000 wipes, 1 big sister, 2 sweet babies, 1 million blessings and 1 amazing God!! “For unto us is born this day, in the city of David, a Savior, which is Christ the Lord.” Luke 2:11
Merry CHRISTmas and Happy New Year!! Michael, Terri, Claire, Corban & Caroline Thursday, December 21, 2006 * * * * * * * * * * * * * * * * * * * * * * * * It has been a very busy past couple of weeks. We took everybody to the doctor last Monday. Corban and Caroline had their well visits. Claire wasn't feeling well. So, the doctor fit her in too. Clare had an ear infection and the stomach bug. Corban is doing very well. He weighs 22 1/2 pounds. He is in the 95th percentile for height for a term baby. Corban did not have RSV. Thank God!!!! He got over all his junk. But has started running a fever again this week. We are not sure if he may be getting teeth. He still doesn't have any teeth yet. Caroline also had a slight ear infection last week. She finished her antibiotics and is doing much better. We increased Caroline's calories and slightly increased the volume of formula that she is getting. This past week she has done very well. She has started picking up her head while she is on her tummy. (For as long as 30 seconds). She is having to push on her arms to do that. (Praise God!!!) She is sitting up better every day. She sat by herself for about 15 seconds for her therapist this week. " Thanks be to God for his indescribable gift!" 2 Corinthians 9:15 Have a Wonderful CHRISTmas!!!! Wednesday, December 6, 2006 * * * * * * * * * * * * * * * * * * * * * * * * Caroline had an appointment with the developmental pediatrician last week. That went well. The pediatrician was pleased with the progress Caroline is making. Her body is starting to meet some of the 6 month miles stones, but her hypotonia (muscle weakness) is holding her back: she roles over (both ways), smiles and plays with toys. Claire saw the ENT last week. She has mild hearing loss in her right ear. Her eardrum is not moving. So, she probably has fluid behind her eardrum. He wants to see Claire in February and have her ears checked again. If she is still having problems we may have do put tubes in again. Corban couldn’t be left out. I took him to the doctor yesterday. He has a slight ear infection and bronchilitis. They sent off the test for RSV. We should have the results by tomorrow. He has been a real trooper. You can’t even tell he is sick. He is still going, going going!!! Caroline’s oral therapy is still very sloooooooooooow!!! Please pray for God to give Caroline a desire to suck on the nipple. We appreciate all your prayer and for continuing to check on us!!!
For to us a child is
born Friday, November 24, 2006 * * * * * * * * * * * * * * * * * * * * * * * * We hope you had a wonderful Thanksgiving. Ours was very good. We have so much to be thankful for. We have been so blessed to see God work in our lives. Caroline’s oral therapy is going very slow!!! She is making progress (according to her therapist). She is less aversive to having the nipple in her mouth. She is much more interested in chewing on the nipple instead of sucking, because she has gotten 6 teeth in the last month and a half. She has found some new tastes that she likes: vanilla pudding and root bear lollipop. YUM!! Her physical therapy is going well. She can sit in her Bumbo seat for about 15-20 minutes at a time. (Holding her head up.) Her trunk support is improving. She is starting to sit up on her own, balancing her weight for a few seconds at a time. She does NOT like to put weight on her arms. We saw Dr. Barceló last week. He was very pleased with how Caroline’s tongue looks. It is growing with her. Caroline’s developmental pediatrician appointment got rescheduled for next week. Please continue to pray for:
“Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Jesus Christ.” 1Thessalonians 5: 16-18 Wednesday, November 15, 2006 * * * * * * * * * * * * * * * * * * * * * * * *
HAPPY BIRTHDAY TERRI !! Thursday, November 9, 2006 * * * * * * * * * * * * * * * * * * * * * * * * We started off going to therapy twice a week and now we are down to once a week. We are having to do therapy at home 2-3 times a day in addition to her physical therapy that we do 2-3 times a day as well. The oral therapy has gotten to be a struggle. I called Dr. Sperry on Monday to see if we could go ahead and do a swallow study. She doesn’t want to expose Caroline to more radiation and have her be agitated for “nothing.” She did give us a time frame. She wants to do a swallow study 2-3 months post surgery. So, we are continuing with the same therapy. Our therapy session today went VERY WELL. Praise GOD!!! For the first time she wasn’t fighting the nipple in her mouth. I hope & pray this will continue. Her physical therapy is going well also. She is getting better at holding her head up. Her trunk strength is getting better also. Her arms are very weak and she does not like to lift her head up when she is on her tummy. We have an appointment with the Developmental Pediatrician on November 15th and with Dr. Barceló on November 22nd. Saturday, October 28, 2006 * * * * * * * * * * * * * * * * * * * * * * * * It has been a very crazy week!! Caroline has had therapy three times and 1 doctor’s appointment. We did get to cancel our therapy session on Friday. Therapy is going well. There are 30 muscles in the tongue. So, Caroline is going to have to relearn to use those muscles. She is learning to stick her tongue out, to both sides and touch the roof of her mouth. She still has a tendency to retract her tongue. So, they are working on getting her to protract it. She is also working on sucking on a bottle nipple. She is getting to taste some new flavors during therapy. This week she tried sour candy, pixie stick, sweet potatoes, plums, pears and bananas. We scheduled two therapy sessions a week for the next four weeks. We saw Dr. Barceló (Craniofacial Surgeon) this week. He said everything looks good. He said when Caroline starts talking (about 18 months) we will have to look at her palate and tongue again to make sure they are the appropriate size for her. Thanks to all the people that helped with our children this week. You are awesome and an answer to prayer: Tanya, Margie, Jill, Kelly, Gigi, Papa, Mimi and Granddad. Have a great week!!! People see God every day, they just don't recognize him. ~Pearl Bailey Saturday, October 21, 2006 * * * * * * * * * * * * * * * * * * * * * * * * Caroline is doing very well. We took her No Nos off on Monday. She has been pretty happy this week. We got the results of the SMA (Spinal Muscular Atrophy) test. NORMAL. We are so thankful for God's blessings!!! We have a very busy week next week. Dr. Sperry wanted Caroline to have aggressive oral therapy. So, we will see our feeding specialist at Presby Plano. (She is awesome. She is the one who helped get our appt. with Dr. Barceló) We have three appointments this next week with her. We also have an appointment with Dr. Barceló on Wednesday. Dr. Hung wants to see Caroline next week as well. Thank you!! Thank you!!! Thank you Tanya and Margie for watching the twins this week!!! Again, God provided!! Michael’s Mom is dong well. She came home from the hospital yesterday. Please pray for Caroline and her therapy. She needs to get good at sucking. We have tried some at home. She would much rather have her thumb than a pacifier or bottle nipple. It’s not very gratifying because nothing is coming out of the pacifier or nipple. She cannot have liquids until we do another swallow study. They will not do another swallow study until she is sucking. Give thanks to the Lord and pray to him. Tell the nations what he has done. Sing to him; sing praises to him. Tell about all his miracles. Be glad that you are his; let those who seek the Lord be happy. Psalm 105:1-3 Saturday, October 14, 2006 * * * * * * * * * * * * * * * * * * * * * * * * We are home! YEAH!!! Praise God!! Caroline is doing very well. She has started making some new sounds that we haven’t heard before. We are still unsure if her cry will change. It is still sounding similar to how it did before the surgery. She seems to be happier. She will be much happier on Monday when she can take her No Nos off. I have already packed up all the equipment. I am ready to get it out of here!! We are going to spend the day out and about. The kids haven't been out together since Caroline’s surgery because there was just too much equipment to take with us. Have a GREAT Day!! Thanks for continuing to pray for us!! “This is the day the Lord has made; let us rejoice and be glad in it.” Psalm 118:24 Friday, October 13, 2006 * * * * * * * * * * * * * * * * * * * * * * * * Caroline was admitted to the hospital yesterday afternoon. Dr. Hung came in and down sized her trach. This gave her a little more room to breath around the trach. It also aloud the stoma (the hole in her neck) to begin to close. Then this morning he came in and took the smaller trach out and covered the stoma with some gauze and tape. He said it would take a few hours to close. Dr. Hung will let us go home tomorrow morning. He wants her to stay one more night for observation. Caroline is doing very well. Her oxygen sats are 99%-100% mostly. Praise God!!! Please keep Michael's Mom in your prayers. She had surgery this morning. They removed some lesions and scar tissue. The bowl had a "kink" that they fixed. Thanks Bauders and Sassers for watching our children!!! Wednesday, October 11, 2006 * * * * * * * * * * * * * * * * * * * * * * * * Dr. Sperry called this morning to let us know that we needed to wait until next week to take off Caroline’s NO NOs. She is not supposed to put her fingers in her mouth until next Monday. She can have a pacifier now. OOOOOPS!!!! Michael and I both heard him say 10 days. So, Caroline was not happy about having to put the No Nos on again. We had all our doctors’ appointments today. Dr. Barceló and Dr. Sperry are very pleased with how the tongue and palate look. YEAH GOD!! They were very positive!!!! They both seemed hopeful about the possibility of her taking a bottle by mouth and eventually getting the g-tube out. Then we saw Dr. Hung who put a scope down her nose to look at her airway. He said there was very little swelling there. He would like to take the trach out TOMORROW. YEAH GOD!!!!! We are very excited. So, we will spend at least one night in the hospital, possibly two nights. He also felt comfortable enough with her oxygen levels that we no longer have to have her on oxygen at home. She has been sating between 94%-98% throughout the day. However, they would really like for it to be 97% or higher. I’m sure they will monitor this while we are in the hospital. Thank you so much for your prayers!!! Monday, October 9, 2006 * * * * * * * * * * * * * * * * * * * * * * * * Caroline is doing pretty good. She finally got to have her hands back on Friday. I’m not sure she has taken her hands out of her mouth since Friday. The past few days she has spent most of the day off oxygen. Praise God!!! We have had a wonderful home health nurse that has come everyday. Praise God!! I called the geneticist today. They got the results of one of the test that they sent off. (I don’t even know what they were testing her for). It came back normal. PRAISE GOD!!! They are still waiting on the results of the other test (Spinal Muscular Atrophy). Please continue to pray that the test comes back normal also. We have appointments with Dr. Barceló, Dr. Sperry and Dr. Hung on Wednesday. We are praying that they will take the trach out SOON!! Wednesday, October 4, 2006 * * * * * * * * * * * * * * * * * * * * * * * * Thanks for your
prayers!!! Caroline is fever free. Praise God!!!
Now if you could just pray for her oxygen level to come up. So, we can get rid of the oxygen. Home health is coming out once a day. I will make appointments for Caroline to see Dr. Hung and Dr. Barceló next week. Monday, October 2, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * Caroline did get to come home today. YEAH!! I think she is glad to be sleeping in her own bed. Please pray for us as we are a little overwhelmed by all this equipment that she came home with: oxygen & humidifier machine, Nebulizer, Pulse Ox and suction machine. Michael talked to Dr. Hung today. He said Caroline could get the trach out in 2 weeks. Also, pray for Caroline she started running a fever this evening.
Sunday, October 1, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * Caroline moved to the regular pediatric floor at 3:00am this morning. I guess they needed the bed in the PICU. Dr. Hung came in and said we could go home if home health could come out today. If they couldn’t come out today we would have to wait until tomorrow. He later realized that Caroline was still on oxygen and getting breathing treatments every 4 hours. So, they are trying to get her off the oxygen today, and she is supposed to come home tomorrow. Last week the Geneticist came up to see us. She did some blood work and sent if off for more testing. Please be in prayer that that test comes back normal. Saturday, September 30, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * The doctor came in today and said we can go home on Sun. or Mon. Pray that it is tomorrow!!! Friday, September 29, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * We want to thank you so much for your prayers. And for everyone one who adjusted their schedules to take care of our children and be at the hospital with us!!! We are very blessed to have such wonderful family and friends!!!! Caroline has had a rough couple of days. Please continue to pray for her to be comfortable. The doctors did z-plasty on her tongue. They cut the top and bottom of her tongue. Then they stitched it down so she couldn’t move it. They reconstructed her palate: taking off quite a bit of extra tissue and moving things around so everything would be in the proper place. (Her palate came down so far that it was attached to her larynx) They didn’t know how much swelling she would have and they were working very close to her airway. So, the ENT put in a temporary trach. She should have the trach for about 4 weeks. Caroline has not been very happy mainly because she cannot get to her thumb. She has NO-No’s on her arms that keep her arms straight. She has the trach in her neck and the strap that goes around her neck to keep it in. She is on a small amount of oxygen and humidity (to keep the trach moist). She is hooked up to all the monitors and has the blood pressure cuff on. They took her IV out last night, because the one she had wasn’t working anymore. After trying to get a new IV started 4 times they decided she could do without. Dr. Barcelo is very pleased with how everything looks. Dr. Sperry (the Speech Pathologist) is VERY optimistic about Caroline’s feedings. In 2 weeks we will be able to start aggressive oral motor exercises. When we feel like Caroline is using her tongue properly we will schedule another swallow study to see how she uses her tongue and where she puts the liquid she swallows. We will be able to go home as soon as Dr. Hung (the ENT) changes out Caroline’s trach for the first time. He usually waits 4-7 days to allow everything to heal before changing it. We are hoping and PRAYING for tomorrow. We praise God:
Please continue to pray
I know what I’m doing. I have it all planned out- plans to take care of you, not abandon you, plans to give you the future you HOPE for. Jeremiah 29:11 Friday, September 22, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * As many of you know Caroline is having surgery on Tuesday. They are going to lengthen her tongue and shorten & lift her palate. We had a pre-op physical yesterday. Everything looks good for surgery. On Monday Caroline will have barium x-rays to measure her tongue and palate, labs and see Dr. Barceló. We have to be at the hospital at 6:00 am Tuesday. Her surgery will start at 7:30. Dr. Hung (the ENT) will put the (temporary) trach in first. Then they will precede with the rest of the surgery. She will spend one night in the PICU and the second night we should be on a pediatric floor. If all goes well we should be able to come home on Thursday. WOW!! Please remember to pray for Caroline next week.
Praise God for everyone who has been so helpful!! Thank you for your care and prayers! We are expecting miracles!! "Before they call I will answer; while they are still speaking I will hear." Isaiah 65: 24 Thursday, September 7, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * We scheduled Caroline's Surgery for Tuesday, September 26th. Wednesday, September 6, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * Praise God!!!! We had a good appointment today with the Neurosurgeon. The doctor measured Caroline’s head, my head and Michael’s head. Then she plotted them all on a graph. Apparently Caroline has inherited her head size from her Daddy who is in the 90th percentile. J Caroline does not have hydrocephalus. YEAH GOD!!! She does have borderline ventricular enlargement. The Neurosurgeon would like to see Caroline again in 6 months to make sure her head growth is consistent. I am going to call the Craniofacial Surgeon tomorrow to schedule her surgery. "Cast your burden upon the Lord and He will sustain you." Psalm 55:22 Wednesday, August 30, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * “Praise be to the Lord, to God our Savior, who daily bears our burdens.” Psalm 68:19 We have had a good week! God has been answering our prayers!! Thanks Margie & Garnet for watching the twins!! Michael's Mom is doing better. She is out of the hospital and back watching the twins again. We have an appointment with the Pediatric Neurosurgeon scheduled for next Wednesday. We have been waiting for that appointment for several weeks. They called yesterday to let us know that they are out of network on our insurance. So, I have called the insurance company, and I am waiting for them to call me back. Pray that if we have to schedule an appointment with another Pediatric Neurosurgeon that we will not have to wait another month. (There are only 2 Pediatric Neurosurgeon groups in the Dallas area.) Also, please pray for our appointment with the Neurosurgeon. Pray that everything is normal with her brain. The Craniofacial Surgeon mentioned a shunt. (He said that is not his area of expertise. He is not saying that Caroline needs one, but he wants to have that checked before he does the other surgery.) Thanks for continuing to check on us and pray for us!! Saturday, August 19, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * We have had a good week. It was very nice to not have any doctor’s appointments this week!!! We want to thank the deacons and our church family for praying for Caroline on Sunday night. We appreciate it more than you know!!! Claire started school this week. She loves it, but it has been an adjustment. Please pray for Michael’s mom. She is in the hospital with intestinal blockage. She may be having surgery next week. Michael’s Mom watches the twins while I’m at school. So, please pray for our search to find someone to watch the twins while Michael’s Mom is ill.
Sunday, August 13, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
Happy Birthday Claire!!!
Wednesday, August 9, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * We had an appointment with Dr. Barceló, the Craniofacial Surgeon, today. After looking at the radiologist report from Caroline’s CT, Dr. Barceló would like for us to see a Neurosurgeon. The report states, “There is a borderline ventricular enlargement of the extra-axial spaces. ” In English that means a part of her brain is bigger. The doctor would like to have the Neurosurgeon check that before we continue with the mouth surgery. Once we get the “Okay” from the Neurosurgeon we are ready to have Caroline’s tongue lengthened and her palate lifted. The surgery will require Caroline to have a tracheotomy for about a month. She will probably be in the hospital for 3-4 days as long as there are no complications. Her mouth should be healed and ready to begin oral feeds after 10 days. We also saw our regular Pediatrician today for Corban and Caroline’s 6-month well exam. Corban weighs 19lbs 7 oz. He’s doing GREAT! The doctor was pleased with his progress. Caroline weighs 13 lbs 1 oz. The doctor was also pleased with the direction we are going with Caroline. We want to praise God for Claire. She is a happy, healthy big girl. She will be 5 on Sunday. She starts Kindergarten next week and God is so gracious to allow Claire to come to the school that I teach at. We want to praise God for Corban. He is a very happy, healthy little boy. He is so much fun to be around. We want to praise God for Caroline. Despite the physical limitation she has, Caroline has been very healthy. We are very thankful for the progress she is making: holding her head up by herself, rolling over, lifting her head up and smiling. We also want to praise God for Dr. Barceló, his team of Drs. and every Dr. he has referred us to so far. The ability to get an appointment with the International Craniofacial Institute and Dr. Barceló as quickly as we did in itself was a gift from God. We finally feel that we have someone who is aggressively trying to find the best treatment for Caroline and if it requires calling in another specialist he is not opposed to doing that. Please pray for the appointment with the Neurosurgeon. Pray that everything is normal!! “Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. Is anyone of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned he will be forgiven. Therefore confess your sins to each other and pray for each other so you may be healed. The prayer of a righteous man is powerful and effective.” James 5: 13-16 This Sunday night during the 6:00 pm service we will have the elders of the church pray over Caroline. All are welcome to join us.
Saturday, July 29, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * We saw the Developmental Pediatrician yesterday. It went well. The doctor started by checking Caroline’s reflexes. She still has strong reflexes (A sign of high tone in her legs). It took the doctor several tries before she could see clonis (tremor like movements) in Caroline’s legs. We have noticed that the clonis has decreases significantly. The doctor said Caroline’s brain is making the connections it needs to make for that to go away. . PRAISE GOD!! We will have to wait and see if it goes away completely. God can do anything!! The doctor showed Caroline a toy and she grabbed it, Caroline held her head up for the doctor, she picked her head up from laying down and she rolled over on her side. We have known all along that Caroline’s motor skills would be delayed. We will continue to face those challenges knowing that ultimately God is in control of when it all happens. When Caroline was in the NICU they painted a very bleak picture of Caroline’s future saying that she was at a very high risk of having Cerebral Palsy, and she would probably have the worst kind. (Cerebral Palsy is a very broad diagnosis. It is damage to the motor area of the brain. It can range from very minor difficulty with fine motor skills like writing or cutting with scissors, to wheelchair bound with involuntary movements.) Saying all this, I was pleased to hear that the doctor did not feel like Caroline would have the worst kind of CP, if she has it at all. She still told me it couldn’t be diagnosed until 1 year of age. The doctor also put Caroline back on regular calories. She has been getting extra calorie formula since birth. I guess she is finally getting a little plump. :-) It is not that we think we can do anything of lasting value by ourselves. Our only power and success come from God. –2 Corinthians 3:5
Wednesday, July 26, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * The nurse from Dr. Barcelo’s office called today. She said they had a good group of doctors that met on Monday night. They think Caroline is a good candidate to have her tongue elongated (Z Plasty). I asked about her palate. She said it is the longest palate they have ever seen. She said they typically don’t shorten palates. We set up an appointment for August 9th to discuss all this with Dr. Barcelo. We will probably schedule her surgery when we go in for this appointment. Thanks for your prayers. We are very glad to be moving forward!
Tuesday, July 25, 2006 We haven't heard from the doctor yet. Hopefully they will call tomorrow.
Saturday, July 22 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * Prayer Request Please pray for our very good friends, Ken & Holly and Kate (Claire’s best friend). Holly took Kate to the doctor this week to have her hearing checked. The doctor says she has hearing loss in her right ear. Depending on the frequency, it ranges from mild to profound while her left ear is just fine. Kate is having an MRI on Monday to look at the structure of her ear to see how "God put it together." Kate will have to be sedated for the imaging. Also, Please pray for the doctors as they will meet on Monday to discuss Caroline. We had a great time at VBS this week. Caroline was is the nursery for the first time. She did great. Thanks Ms. Pat and Ms. Cindy for taking such great care of the twins!!!
Tuesday, July 18, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * Caroline had her swallow study today. I was very impressed with everybody. I really feel like God has us in a great place. The study took about 45 minutes. She had to drink Barium of different consistencies. Everything I heard today is preliminary. The doctors will meet on Monday to discuss what we need to do. The radiologist and both speech pathologist think that Caroline’s palate is long and thin. At times it’s touching the back of her tongue. This is probably what is causing her to make the noise that she makes. I asked if the palate could be shortened. Dr. Sperry said they would have to discuss it, because they didn’t want to take away something that she may need in the future. They were very encouraged that she is using the muscles in her tongue and trying very hard to get the liquid out of the bottle. Dr. Sperry felt like Caroline would probably be a good candidate to lengthen her tongue. The bad news is that she aspirated every liquid that they gave her. They were very surprised that she has not gotten sick (pneumonia). So, for now she is not going to take any formula by mouth. I will have to do some oral exercises with her. Please pray that God will give the doctors wisdom as they meet to discuss what is best for Caroline. Thanks for continuing to pray for us. It means sooooo much to us!!!! Trust in the Lord with all your heart. Never rely on what you think you know. Remember the Lord in everything you do, and he will show you the right way. Proverbs 3:5-6
Wednesday, July 12, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * Carline had her CT scan this morning and it went well. This afternoon we saw Dr. Barcelo (the Craniofacial Surgeon) and Dr. Sperry (The Speech Pathologist). After reviewing the scan Dr. Barcelo believes she has an underdeveloped tongue (We’ve heard this before.) He said he had not seen anything like it before. (Again, we’ve heard this before.) So, they scheduled another swallow study (A procedure where they offer Caroline different bottles with different consistencies of liquid during an x-ray to see how she uses her tongue and what she does with the liquid.) The swallow study is scheduled for July 18th. A group of Medical City doctors has a conference scheduled for July 24th where they meet together to discuss different cases. Caroline will be one of the patients they will discuss. Dr. Barcelo did say surgery to elongate her tongue could be an option in about 3 months. This wasn’t exactly the news we were hoping for today, but we do know that God is in control. He knows exactly what is going on with Caroline and he loves her more than we ever could. “And if God cares so wonderfully for flowers that are here today and gone tomorrow, won’t he more surely care for you?” Matthew 6:30 Thursday, July 6, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * The doctor’s office called yesterday to set up the Craniofacial CT. We scheduled it for Wednesday the 12th. We also made an appointment on Wednesday with Dr. Barcelo, the Craniofacial Surgeon, to discuss the CT. Please continue to pray for Caroline’s feedings. They are not going well. She is loosing her eagerness to take a bottle. She has gotten to where she just swallows what I squeeze into her mouth. (She is not always happy about that.)
Saturday, July 1, 2006 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * It has been a busy couple of weeks. Last week we left on Tuesday to spend a few days in Broken Bow, Oklahoma with family. We had a great time. Thanks, Aunt Lila, for having all 29 ½ of us at your house. Then we had family come stay at our house. We dedicated the twins on Sunday. Mike (Michael’s cousin) sang, “The Fingerprints of God.” He did a GREAT job!!!! Thanks, Mike!!
This week I thought we had an appointment with the Developmental Pediatrician. I got to their office and found out that the appointment is July 28th instead of June 28th. So, we will see them next month. Yesterday we spent the morning at Medical City. We saw an Otolaryngologist. He looked in her mouth and put a scope down her nose. Then we saw the Craniofacial Surgeon and the Speech Pathologist. All three doctors agree that they think Caroline’s feeding problems all have to do with her tongue. They think there may be a cyst under her tongue that is making her retract her tongue and pull her jaw back The Craniofacial Surgeon doesn’t think her chin is recessed. The three doctors are going to meet with the Radiologist to review Caroline’s MRI. The Surgeon said he would get back with us in 2 or 3 days. He feels like if something needs to be done, now is the time. He also is going to schedule a Craniofacial CT. We were very encouraged after leaving the doctor, because we feel like they will be able to do something to help. Yeah God!!
Please continue to pray for
Caroline's feedings. She is taking about 1 1/2 to 2 ounces
2-3 times a day.
The Lord
himself goes before you and will be with you; he will
never leave you nor forsake you. Do not be afraid; do not
be discouraged. Deuteronomy 31:8
Thank you so much for all the encouraging notes you have left in the guest book. They mean so much to us!!
Monday, June 19, 2006 * * * * * * * * * * * * * * * * * *** * * * * * * * * Praise God!!!!!!!!!!! Caroline’s CT Scan was normal. (Except for the PVL) Thanks for your prayers. God is Great! PRAYER REQUEST There is a little girl that we have been praying for the past few months. Her name is Ruthie. She was born March 1st. Her parents are facing some difficult decisions this week. Please pray for wisdom, direction and peace. http://www.carepages.com/ServeCarePage?cpn=BabyRuthie&uniq=276350&extrefid=tlcupdate (You will probably want to copy & paste this address into your browser. Other wise it will come up in this window on our webpage.) Thanks for taking a few minutes to pray for Baby Ruthie and her parents, Susie & Kyle. (For those of you that go to Lakeland, Susie is Mistie Parks' cousin)
Friday, June 16, 2006* * * * * * * * * * * * * * * * * * * * * * * * * * * * ** * * * Thank you so much for your prayers. We definitely felt and saw God working in our lives today!! When the anesthesiologist called last night he let Caroline have her regular feedings until 3:00am and Pedialyte until 6:00am. So, Caroline wasn’t very much off of her feeding schedule, and she wasn’t any more fussy than she normally is. I was able to stay with her while they put her to sleep, which took about 2 minutes. The CT took about 5 minutes. They brought her out, and I held her until she was fully awake (about 15 minutes). It went very smoothly. Thanks God!!! We don’t know the results of the test yet. I think our Pediatrician will call us next week. Yesterday we went to see our feeding specialist, Robin (She is so wonderful!!). We switched to a different bottle again. Caroline took about an ounce and half for Robin. We will start trying to feed Caroline 3 times a day with a bottle for 45 minutes instead of 30 minutes. We’re trying to keep Caroline interested in the bottle to avoid oral aversion. While we were at the feeding specialist I told Robin that I had made an appointment with the Craniofacial Surgeon, but our appointment wasn’t until August. Long story short…. She made some calls and got us into Dr. Barcelo (who is in the group that worked on the Egyptian twins). I had already called this group, and they are out of network, but they are going to work with us on this. Our appointment is for June 30th. Thanks God!!!! “God can do anything, you know----far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us. Glory to God in the Church! Glory to God in the Messiah, in Jesus! Glory down all generations! Glory through all millennia, Oh, yes! “ Ephesians 3:20-21 (The Message)
Tuesday, June 13, 2006 **********************************
Caroline has an appointment on Friday at 9:00am to have a CT scan done of her head. She will have to have anesthesia for this. And she won’t be able to have anything after midnight on Thursday.
Please pray that the results of the test are normal. Pray that Caroline does well going for more than 9 hours without food. Pray for the doctors and nurses that care for her. Pray for us as we care for her and try to make her comfortable during this time.
I called the Craniofacial Surgeon today. Their next available appointment is August 21st. They put us on a waiting list in case they get a cancellation. Also, the lady I talked to said she would talk to the doctor to see if we needed to get in earlier. Please pray that an appointment will open up soon. Corban had his 4-month check up tonight. He is doing Great!! He weighs 16 lb 13 oz. He is in the 75th percentile for height and weight (for a normal 4 month old who was not premature). He is sleeping about 8-10 hours at night. YEAH!!!! Also, he is starting to get his first tooth. He rolls from his tummy to his back and his back to his tummy. YEAH GOD!!! Caroline went in also to have the circumference of her head measured. It grew another inch. So, our pediatrician wants her to have to have a CT scan or sonogram this week (they will call tomorrow to schedule). Caroline is still having a lot of trouble taking her bottle. She only takes about an ounce twice a day. This has been very frustrating for all of us. She is starting to loose her eagerness to take the bottle. Which can lead to oral aversion. We talked to our pediatrician about seeing a Craniofacial Surgeon to see if there is a “structural” reason she is not able to take the bottle. He thought it would be a good idea. I will call and schedule that appt. tomorrow. Caroline has an appointment with the feeding specialist on Thursday. We also saw the Gastroenterologist last week. He gave us permission to be a little more flexible with Caroline’s feeding. We increased the time between feeding to 4 hours. We are going to shorten her feedings (currently 30 min). We have been so careful with her feedings, because we were worried that we might hurt if we fed her too much, too often or in too short of time. He said she will let us know if something is not right and we just change it the next time. That has a huge relief!! Caroline has started lifting her head up better while she is on her tummy. She is also getting better control of her head while she is sitting up. She is very attentive to people and her surroundings. YEAH GOD!! Please pray for Caroline’s feedings. Pray that when Caroline has the CT Scan or sonogram that everything will be normal. Thank you for continuing to pray for us!!!! Mark 10:27 With man this is impossible, but not with God; All things are possible with God.
Thursday, June 1, 2006* * * * * * * * * * * * * * * * * * * * * * * * * * * * * Last week Corban and Caroline had an appointment with Scottish Rite. Because they were breech and Caroline’s leg came down the birth canal they were at risk for hip dislocation. They both had their hips x-rayed and they did a sonogram on Caroline’s hips. Everything looked good. PRAISE GOD!!! After seeing the feeding specialist on May 19th we have been feeding Caroline twice a day with the bottle. She had been taking about half an ounce for us. (Not really the improvement we were hoping for) So, we saw the Feeding Specialist/ Occupational Therapist again last Friday. She switched Caroline to a different nipple. On Friday she took about an ounce and half for the OT. She has been taking about an ounce for us. We would like for her to take 85ml (almost 3 oz) from the bottle. Please continue to pray for her feedings!! On Tuesday we saw the geneticist. The geneticist feels like Caroline has something “structural” wrong. She doesn’t want to do anything at this time. She wants to let Caroline grow a little and see her back in 6 months. Caroline also had her 4-month checkup on Tuesday. She got her immunizations. The doctor increased her feedings. Caroline’s head size increased significantly. The doctor wants to see her back in 2 weeks to measure again. Please pray that everything is normal with that. We continue to trust that the Lord is in control!! Monday, May 22, 2006 *********************************
Thank you so much for continuing to pray for Caroline. We are seeing God work.
Caroline had a good appointment with the Feeding Specialist/ Occupational Therapist last Friday. The therapist is very good, and she is very good with Caroline. Caroline took a little over an ounce on Friday. The therapist felt like that was a very good start. It will take a while to build up her endurance. She is starting to use muscles that she hasn’t used in a while. The therapist had a lot of great ideas to help Caroline with her feedings and she wants us to try giving her the bottle 2 to 3 times a day. Most kids who have a g-tube and the Nissen need to be distracted while they’re eating. So, Caroline gets to watch Baby Einstein while she eats. When we are feeding her we need to hold her in a more side ways position to help protect her airway. Caroline also has to have her formula thickened. So, we are working to find what consistency of liquid works best for her.
Please continue to pray for Caroline’s feedings as she learns to coordinate sucking, swallowing & breathing.
You, Lord, give perfect peace to those who keep their purpose firm and put their trust in you. Isaiah 26:3
Tuesday, May 16, 2006 *********************************
We had a rough weekend. Michael had an upper respiratory infection, nausea & vomiting. He wasn’t able to eat. So, his blood sugar got over 500. He spent 2 days in ICU at the hospital while I was at home taking care of all three kids.
I took Corban to the doctor on Monday. He weighs 14lbs 11oz & he also has a cold.
My mom and I took Caroline to the neurologist today. The appointment went well. She weighs 9lbs 4 oz. The doctor felt like a lot of what is happening right now with Caroline is related to the PVL (cysts in her brain) i.e. clinched fists, crossed legs, clonis (small tremors). He said some of this could be worked out with therapy. Caroline is easily startled and doesn’t like to be moved. The doctor said she has an immature nervous system and she should grow out of that in the next 6 months. The doctor could not tell us if he thought she would have CP. He said it couldn’t be diagnosed until the age of 2, but he felt like if she did have CP it would probably only affect her legs. That could be treated with medicine and therapy and she may possibly have to wear braces. He also felt like the PVL will not affect her cognition. Because of the location of the PVL the doctor does not think she is having seizures.
We felt like all of this was good news. We are very thankful that our Lord is answering our prayers!!!!
We have decided to wait to schedule an appointment at the Mayo Clinic. If she starts to have more signs of CP then we will schedule an appointment.
Thank you so much for all your prayers!!!!!
Tuesday, May 10, 2006 *********************************
We have had a a busy last few weeks
Please pray for the bottle feedings. We continue to try different bottles, nipples, etc. but so far we are not having much luck. We do see some improvement in Caroline from when we brought her home, however it is still too early to know exactly what her future will hold. All we can do is trust in Him who does know the future and has planned it before she was even born. We continue to covet your prayers and are very thankful for all of your support over the last few months.
Our love to you all, --Michael, Terri, Claire, Caroline and Corban.
Tuesday, April 18, 2006 ********************************* We have had a good week. Caroline got her Sinigis shot (the RSV shot) last Tuesday and she did very well. We saw the surgeon on Thursday and he said her g-button site looked very good. He went ahead and scheduled her for the button on Monday. Up until that point she had a tube that came out of her stomach. They replaced that tube with a button that is flush with her skin, it looks like an air mattress valve. Now we just plug her feeding tube directly into that valve so that it is unnoticeable when she is not feeding. ECI (Early Childhood Intervention) will come to our house on Thursday to assess Caroline. Then we will be able to begin the different therapies that they recommend. Terri has also called several of the specialists today to set up some of Caroline's appointments. We will let you know as these dates get closer.
We are so thankful for all of your prayers for Caroline and our family. We have also been enjoying the meals that many of you have graciously provided for us. Please continue in your prayers for Caroline and for us as well. We continue to get up at night every three hours to feed. We have found that we can usually get it done and get back in bed quicker if we both get up to do it. Corban will some times last a little longer than every three hours at night and with Caroline it is just a matter of refilling her bag with formula, so we switch who we are going to feed each evening. The thought of being able to sleep more than three hours at a time seems like a dream. We know that it will get better with time.
Our Love to You All, Michael, Terri, Claire, Caroline and Corban.
First, we want to say how very blessed we are to have such wonderful family, friends, and co-workers. You have been so amazing. We can’t tell you how much we have appreciated your cards, calls, gifts, dinners, money, gift cards and mostly your PRAYERS!! Your generosity is overwhelming!!!
The last 2 weeks have been very busy. We want to praise God that Caroline is finally home!! She is doing pretty well. She has good days and bad (fussy) days. Most of them have been good and we thank God for that.
Corban is doing great. We took him to the doctor last week and his up to 11 pounds 6 oz. He’s had a little infection (Thrush), but he is getting over that.
We have taken Caroline to the doctor twice since she has been home.
Many of you have asked how you can specifically pray for
Caroline:
· Pray for Caroline’s bottle feedings. Pray that she would relax her tongue and she would be able to coordinate sucking and swallowing.· Pray that Caroline would be less irritable. She usually fusses any time you move her. · Pray for the development of her mouth. · Pray that God would heal her Periventricular Leukomalacia (PVL), the cysts in her brain. · Pray for her muscle tone. She has decreased muscle tone in her stomach and neck. She has increased muscle tone in her arms and legs. · Pray for Caroline’s motor development. · Pray for the doctors and therapist that we will be working with; Neurologist, Geneticist, Gastroenterologist, Developmental Specialist, Surgeon, Pediatrician, Physical Therapist, Occupational Therapist, Speech Therapist and Nutritionist · Pray that Caroline does not have, nor develops Cerebral Palsy · Pray for us as we care for all three of our blessings that God has given to us.
Someone once said, “I know that God will not give me more than I can handle. I just wish He did not have so much confidence in me.”
Once again, we do appreciate so much all that you have done for us. It is amazing that some people choose to go through life without the support of God, an amazing church, a loving family and good friends. We do not know what we would do if we had to do this on our own.
Do not be anxious for anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. Philippians 4:6.
But thanks be to God, who always leads us in His triumph in Christ, and manifests through us the sweet aroma of the knowledge of Him in every place. II Corinthians 2:14.
Friday, March 24, 2006 *********************************
It is late tonight, but I wanted to give you all an update. After spending 69 days going back and forth to the hospital, we are all home!! We arrived at home today with Caroline around 6:45pm. She and Corban are getting reacquainted and Claire is getting to see her up close for the first time. This is only the 2nd time she has gotten to see her since she was born. We are looking forward to getting up tomorrow and not having to get ready to go to the hospital.
We brought her home today with only her feeding pump and a suction machine for her secretions, if we need it. So far we have not needed to use the suction machine today. She has been a little fussy tonight, so it is looking like we still have a long road ahead of us. We have Drs. appointments to make, spread out over the next 4 months. The home health care people are supposed to be calling us and coming out 6 times in the next two weeks to do in home evaluations. After the two weeks it will be up to our pediatrician to determine how often they will need to come out to see us.
It is late, so I will cut it short and fill you in on how things are going later. We are just happy to all be at home for now. Please continue to pray for Caroline. Pray that her bottle feedings will begin to pick up in volume and that she will become well adjusted to being home and not so fussy.
I have posted some pictures from today on each of the kids pages.
Thank you so much for all of your prayers so far. We love you all!
--Michael, Terri, Claire, Caroline & Corban
Friday, March 17, 2006 ********************************
Sorry that I have not updated in a while. This has been an extremely busy and tough week. It seems like Monday the Drs. decided to aggressively test and rule out as much as they could. Caroline has been very fussy this past week. They thought that she might be having seizures, so they set up to do an EEG on her brain. This test was scheduled for Tuesday and they had the Neurologist read the results. The Neurologist was a partner of the one we had talked to earlier, so it was a different "set of eyes". The results showed that she was not having seizures, however after looking at Caroline's chart and giving her an exam of his own, he has determined that Caroline is at high risk for developing Cerebral Palsy and is already showing some signs.
This news, obviously, has been hard for us. There has been many moments of tears, doubts and worries about the unknown. We know that God is still in control and we are in no way accepting defeat. Please pray with us for Caroline. We know that He can still perform miracles.
I also asked if they would do another sonogram, just to make sure that there has not been any changes. While we know that her cysts were already present before she was born, I wanted to make sure that there had been no additional damage, since she was not breathing when she was born, due to the prolapsed cord. They did this test this morning, but we have not heard the results yet.
Terri talked to the Geneticist yesterday. She basically told her that so far every test that they have done has come back normal and that we need to go on with life and treat her like we would Corban. We will have to take life one day at a time.
We started bottle feedings yesterday, a little ahead of schedule. I fed her a bottle today and she took it with no problem. They are still only feeding her about 10ccs with the bottle and giving her the rest through her G-tube. Terri prayed that today would be a positive one for Caroline and that is exactly what it was. Her nurse even said that today was a good day.
Pray for Terri and I, that we will keep our strength. Monday will be our 8th week visiting the hospital. I have worked 52 hours (so far) this week, as well as going to the hospital every night. This week was the hardest yet and I was not able to be home very much for Terri. Next week should not be so hard, we just had a lot going on at work.
Our love to you all, -- Michael, Terri, Claire, Caroline and Corban
Saturday, March 11, 2006 ********************************
I am sure you have been waiting to hear how our "Cares Conference" went on Friday afternoon. We sat down with the NICU Dr., the Hospital's Social Worker, and the Charge Nurse. I will do my best to give you an idea of what was said. Basically, one of the main concerns is the cysts on her brain. While we do not know the extent of the issues these may cause, they feel that they are contributing to some of her problems now. The second concern is that we have been told that the Geneticist is stumped. While she feels that there are some cellular concerns, she cannot come up with anything that she can put a name on. She is still waiting on the results of some tests that she had ordered. We still have not met with her, we were told that she will not usually meet with parents until she has something to tell them. Lastly, we have the feeding issue. The surgery has appeared to go very well. She was taken off the ventilator this morning and she has done great. She is still on the nasal canula, but she should be able to come off of it soon. The surgeon was able to reaffirm that she does have "tissue issues". He had a little trouble when he sewed her up with it trying to pull loose. He also remarked on the lack of muscle tone in her stomach and that her diaphragm was very thin, so much so that he could see her heart through it.
We are still on track to bring her home. They are going to give her continuous feedings for at least 10 days. Then they will start her on the Bolus feedings. Once she is back up to taking what she should be eating based on her weight we will be able to come home.
Today has been tough here. There have been tears shed, but we remain positive that none of this is beyond our Heavenly Father who loves Caroline more than we ever could. That does not keep the enemy from sneaking in and taking his shots at us though. The unknown, fear, doubt, worry, all formidable foes from the enemy. Continue to pray for us and for Caroline HOPE. We put our HOPE in you oh Lord.
There is surely a future HOPE for you, and your HOPE will not be cut off. Jeremiah 32:27 - The Message
Our love to you all, Michael, Terri, Claire, Caroline & Corban
Thursday, March 9, 2006 ********************************
Just a little update to let you know how the last couple of days have been. They have been giving Caroline pain medicine to try to keep her comfortable. They took her off of the ventilator on Wednesday around 4:30pm. She did pretty well off of it. Her blood oxygen level was staying pretty normal, but she seemed kind of congested and her breathing seemed a little labored. They finally put her back on the vent about 11:30pm that night. She has been on it all day today and the Dr. said that they would probably pull it tomorrow. They just want to keep her as comfortable as possible and give her plenty of time to get her strength back. She did pretty well today. She was a little more alert than yesterday. They still were giving her pain medicine when she seemed uncomfortable. Tomorrow will probably be the day that she starts making progress towards recovery, please pray with us as she goes through this process. Once she gets back to taking her full feedings, we should be able to go home.
We have a "Cares Conference" scheduled for tomorrow at 3:30pm with the Drs. Basically, they are going to come together and sit down with us and go over Caroline's overall progress and what we might expect in the future. We are not sure if a Dr. from each department is going to be there or if the NICU Drs. are just going to go over what the other departments have found. They told us the goal of the conference is to get Terri and I on the same page as everyone else. Our request is that you pray for us during that time and that God will give everyone wisdom and understanding of what His will is for Caroline. We know that only time will answer some questions, but hopefully we will be able to at least see the road that will lie before us, even if we will not be able to see where that road may lead to.
Thank you for your faithfulness to pray for us and Caroline. We have seen God at work over the last few weeks, and we are certain that He is not finished yet. We believe that in the end Caroline will be Happy, Healthy and Whole.
There is a young lady from our church who left for Romania today. She will be there for 20 days on a mission trip. She sent out an e-mail this past week excited about how God was blessing her and providing for her trip. In her message she had the following paragraph that we have taken and applied to the journey that we are on. Thank you Christin!
Friends, please don't be afraid to pray big prayers. If there's anything I'm learning it's that God's not afraid to show up in big ways. Many times we are afraid to pray for big things because our faith is so small, but we must remember that our God isn't small. And He loves delighting His children by answering our prayers with more of Himself than we knew to ask for. Praise Him for this!
God Bless you all, Michael, Terri, Claire, Caroline & Corban.
Tuesday, March 7, 2006 ********************************
Caroline's surgery went well today. The Dr. was very pleased with the outcome. He said she probably lost only one drop of blood. He put the G tube in, and did the fundoplication (Nissen) to fix the reflux problem. When he looked at her yesterday he noticed that she had a small hernia. So he made his incision today for the Nissen so that he could take care of it when he got ready to sew her up. When we saw her after the surgery she was resting comfortably. They intubated her for the surgery, so she will be on the ventilator at least through the night. The Dr. said they would take her off as soon as she started breathing on her own comfortably. She will be on IV nourishment for a couple of days before they slowly start introducing fluid back into the stomach. We could be looking at bringing her home in as little as 10 days. It just depends on her progress as she gets back to taking her feedings.
Thank you again for your prayers for Caroline.
--Michael, Terri, Claire, Caroline and Corban
Monday, March 6, 2006 ********************************
Just a short update to let you know about tomorrow. Caroline's surgery has been scheduled for 3:30pm. Since she is not considered an emergency patient, there is a possibility that she could be bumped to later. Terri and I went to a meeting tonight hosted by the hospital for parents with children in the NICU. A couple of the nurses from the unit help organize these meetings, that are held every two weeks. They usually have some parents of former NICU patients come in and tell their story and answer questions from parents. The nurses helped answer questions as well. After the meeting both nurses talked to us about the surgery tomorrow and they could not stop talking about how good the Dr. that is doing Caroline's surgery is. He is the head of a group of Pediatric Surgeons and all they do is travel to all of the hospitals in the Metroplex. She said that he has done thousands of these surgeries. One said that if their child needed surgery that they would have no second thoughts about who they would want to do it. She mentioned that he even prays over every child before he does the surgery, she did not know of any other Dr. that did that.
Thank you again for praying with us, --Michael, Terri, Clarie, Caroline & Corban
Saturday, March 4, 2006 ********************************
We have a prayer request to add. Caroline is still being very fussy during her feedings. Originally, they thought it was the acid reflux. They have been giving her Prevacid and have even upped the dosage. She still has times where she is fussy. Just to rule out all possibilities they decided to take her off breastmilk and have Terri get off milk products. They are going to give her a couple of feedings with Pediasure and an already digested type of formula in the meantime. Tomorrow, after Terri has been off dairy products for 24 hours they will start her back on the breastmilk. Please join us in praying for the doctors to find out what is causing her this pain and how to get the pain stopped.
--Michael, Terri, Clarie, Caroline & Corban
Friday, March 3, 2006 ********************************
Well this has been a full week of tests and we have a lot to update. Caroline had a Upper GI done on Tuesday, the results of that came back with everything normal and where they are supposed to be. (Praise) They did the swallow test and determined that Caroline does reflux. They tried giving her formula in several different consistencies and several different nipples. They were able to determine that when she took a normal bottle that she did reflux and aspirated the liquid into her lungs. They said that her suck ability was not as good as it could be. When they tried her on the "Nectar" consistency she did not aspirate. She does not have the whole Suck, Swallow, Breathe motion down. Basically when she takes the bottle the liquid does not go down the esophagus. The flap that is supposed to close when you swallow is also delayed, allowing the liquid to get into her lungs. She also is not showing any signs of choking when this happens. They have come up with a therapy that they are going to work with her on in order to get her to the point of being able to take the bottle. They have started her back on some bottle feedings, 5 - 10 ccs twice a day. They are also going to do a therapy session just before the feedings. Basically they will put an electrode under her tongue and on her cheek and give her some electrical treatment in order to stimulate these muscles.
On Thursday the Geneticist saw Caroline. She was glad that the 2nd Newborn Screening had been done and she ordered some more testing. One of the tests she ordered was a bone scan for Dwarfism. That scan has come back already and it was negative. (Praise) We also received the results of the 2nd Newborn Screening today. It also came back stating that "Screening results negative, no evidence of any of the above disorders." (35 differnt disorders) (PRAISE!!!!!)
The Neurologist came by and looked at Caroline and her MRI from Lewisville. He sat down and talked to me about what he saw. Basically he reaffirmed what we already knew. Caroline has the two cysts in the frontal lobe. He said that they were in a "good place". They occurred when there was a decreased blood flow while she was still in the womb. The incident did not happen during birth. The fact that they could see the cysts on her 2nd day of birth indicated that the incident at least happened 1 to 2 weeks before birth. Many of you know that for several weeks before Terri delivered that her OBGYN was concerned about the extra fluid around Caroline and the lack of fluid around Corban. The Neurologist said that this could be an indicator that Caroline was having difficulties swallowing the fluid as far back as then. Which is another indicator that these cysts could be part of the problem with the muscle development issues with her mouth and throat that we are seeing today. He said these cysts are "Static" in that they are not going to get any worse than they are right now. In fact he said that she could develop out of them. He said he would follow up with her 2 - 3 months after she was released from the hospital.
We heard from the Pediatric Surgeon today, and he is planning on doing the g-button and fundoplication (tightening of the flap allowing the reflux to happen) most likely on Tuesday (Monday was not completely ruled out). We have been told that he is considered one of the best Pediatric Surgeons in Dallas, so we feel somewhat comforted that she will be in good hands.
We finally feel that we are accomplishing something in trying to get the best care for Caroline. While the feeding tube is not the ideal step for us, we are at peace about the process. We know that it is not permanent.
Corban had his circumcision today. We were not able to get it scheduled before he was released from the hospital. That was a trying time for us. I held his pacifer in his mouth and stroked his head as the Dr. did the procedure. Man am I a wuss. He is doing o.k., and I think I will be o.k. as well :-|
Thank you so much for your prayers. God is truly at work, and as you read through these updates I think His hand in Caroline and Corban's life is very evident. You may have noticed that we are spelling Corban's name with an "a" instead of an "i". We got his name from Mark 7:11. In this verse Jesus is talking to the Pharisees and the teachers of the law. He is getting on to them about setting aside the commands of God in order to observe their own traditions. The religious leaders were not allowing the people to take care of their parents who were getting older. They expected the people to give their money to the Church instead of taking care of their family. In verse 11 it says "But you say that if a man says to his father or mother: 'Whatever help you might have received from me is Corban' (that is, a gift devoted to God).... Truly that is what our two little precious ones are, Gifts, that we have devoted to God.
Our Love, Michael, Terri, Claire, Caroline and Corban
PS. Thank you to those who have signed the guestbook and sent us notes of encouragement. Your thoughts and prayers are truly a blessing to us.
Tuesday, February 28, 2006 ********************************
Sorry we have not updated in the last couple of days, but we have been pretty busy. Caroline was moved Monday to the Medical Center of Plano. While this has made it a little more difficult in terms of coordinating our day we feel a lot better about her progress. They have done an upper GI in preparation for putting the feeding (G) tube directly into her stomach, and they have a scheduled a swallow test for tomorrow at 11:00am. This test will allow them to see exactly what happens when she takes the bottle. After the results of these two tests, they will schedule the surgery for the stomach tube. We are praying specifically for the swallow test. It is still our belief that her problem is not in the ability to take the bottle, but the acid reflux that results after her taking the bottle. We discussed this with the Drs. in Lewisville and they stopped the bottle feedings Sunday. She is now fed solely through the feeding tube, but even during and after those feedings she gets very agitated. Not knowing what it will take to stop the reflux we are praying that the G tube( the more permanent feeding tube) will not be necessary. We are putting our trust in God and we know that He has the best plan for Caroline. We just want her to be comfortable.
They have also scheduled a Neurologist to review the MRI of her cysts. A Geneticist will see her tomorrow and either schedule some blood tests of her own or wait for the results of the 2nd newborn screening. We were told that they will probably not do the Muscle Biopsy until she is at least 6 months old because the test really does not reveal anything until they reach that age.
Corban is doing great. Still eating every 3 hours and usually sleeping when not eating. He weighed 7 lbs 3 oz on the 15th. He had gained 1 lb 3 oz in one week. The Dr. said he was doing great so he did not need to see him until his 2 month checkup. Caroline weighed 5 lbs 12 oz on Sunday so she is slowly gaining some weight.
We do have some updated pictures and I will try to get them added soon.
Then God's Message came again to Jeremiah: Stay alert! I am God, the God of everything living. Is there anything I can't do? Jeremiah 32:27 - The Message
Thank you for your prayers,
Michael, Terri, Claire, Caroline & Corban
Saturday, February 25, 2006 ********************************
We had our meeting today with the head NICU Dr. We basically went over all of the issues that we currently see with Caroline. First of all there are still some concerns with her feedings. Sometimes she will take the bottle relatively well, and then at the next bottle feeding she may have a real hard time getting just half of it down. At this point we think it could still be issues with the reflux. The Dr. believes that the muscular issues with her mouth, stomach and possibly her throat, could also be playing a part. Secondly, we still have the two cysts on the frontal lobe of her brain. It is not uncommon for cysts like these to cause weakness in the arms or legs. A co-worker of mine had a friend whose daughter had a cyst like this at birth and it affected her ability to focus her eyes. At 6 months they did surgery to drain the fluid in the cyst and it immediately fixed her eye problem. While we are just speculating, it does not seem to far out to think that maybe these cysts could be contributing to Caroline's muscular issues.
Suggestions from the Dr.: He suggested that we think about putting a feeding tube directly into her stomach. This would serve several purposes. First of all it would require Caroline being transferred to a different facility. Probably Medical Center of Plano or Medical City Dallas. While they are putting in the stomach tube they can go in and "tighten" the valve that is allowing the stomach acid to reflux back into her throat. Also, while she is there, they could do a muscle biopsy to see if it can give them an idea of what is going on with the different issues she is having with her muscles, and a radiologist could look at the MRI of the cysts and see if they need to do anything about them at this point. Once they have done everything that may help us get some answers, then she would be transferred back to Lewisville. The Dr. felt like we could bring Caroline home within 10 days of the surgery as long as the healing went well. We would also need to be trained in how to care for her under these circumstances, and how to give her feedings.
Prayer Concerns: Pray that we would have a clear yes or no from God about what we should do concerning the feeding tube. Pray for the pain that Caroline seems to be experiencing during her feedings. Right now we are not unconvinced that this is what could be holding her back from taking her bottle. When we first start the feedings she has no problems. Then at some point it just seems like she is in pain, her heart rate goes up, her face gets red and she attempts her cry with no sound. Pray specifically that those making the decisions for her care would see what we are seeing. A few of the nurses seem to be thinking along the same lines as us. Pray for the outstanding Newborn Screening.
We thank you all for you faithfulness to stand in the gap with us during this time.
Our Love, Michael, Terri, Claire, Caroline & Corban
Thursday, February 23, 2006 -- PM REPORT -- AN UPDATE TO THIS MORNING *******
But thanks be to God, who always leads us in triumphal procession in Christ and through us spreads everywhere the fragrance of the knowledge of him. 2 Corinthians 2:13
We wanted to share with you God's answer to your prayers. Caroline took her bottle today at 12:00pm with the nurse and she took 37ccs leaving only 5ccs. This evening at 5:45pm, I fed her and she took the entire bottle in 20 minutes! Her heart rate never elevated during the entire feeding and her breathing dipped only minimally. After the bottle her Oxygen saturation did dip periodically, but not enough to require any oxygen. We truly believe that this is a direct answer to our prayers lifted up just this morning.
The head NICU Dr. talked to Terri this morning and he said he wanted to set up an appointment for us this Saturday at 10:00am to go over the plan for Caroline. Although he never mentioned anything, Terri felt like he was going to propose sending Caroline home with a feeding tube. We feel strongly, after today, that this will not be necessary. We do not want to do anything to jeopardize her health in any way, so pray with us that after today the Dr's will see her improvement and that we will not be forced to make that decision.
I know I have said it again and again throughout these updates, but we truly are thankful for all of your prayers. We believe that God is hearing our petitions and by His grace and mercy he is answering them. Please continue to pray for the feedings, that her heart rate will continue to remain calm, she will be able to take the required amount, and that her breathing will continue to get stronger. Pray that the results of the 2nd newborn screening will come back normal. Pray that her tongue and the muscles in her mouth will develop normally. Pray for the muscles in her stomach, as this has not resolved itself. Finally, pray that the acid reflux will subside and that she will find her voice.
Michael, Terri, Claire, Caroline & Corban
Thursday, February 23, 2006 -- AM REPORT *****************
Dr. Bauer, the ENT, came yesterday and did the bronchial scope on Caroline. This revealed that, although she has some signs of acid reflux, everything looks intact and working correctly. He did state that everything in her throat looked swollen due to the reflux, but they would start her on some Prevacid and that should clear up. We still do not know if this is the cause of her not being very vocal or not, but he did feel with the swelling and the feeding tube down her throat, that it could be a factor. As far as her tongue and the issues with the lack of development of the muscles in the floor of her mouth, only time will tell. There was not much else that he could do for us, so he has turned us back over to the NICU Drs.
They also had a speech therapist come yesterday and do one of her feedings, so they could determine if there was any therapy we could be doing to help with the bottle feedings. She only took 21ccs of her 46ccs for them. We have not heard any results of their findings. We feel that the acid reflux could be playing a part in her feedings not going smoothly, as well. There is also concern about her heart rate continuing to be elevated, and her breathing becoming shallow towards the end of each bottle feeding. At this point, if we could get these feedings down, we feel that they would let us go home.
We thank you so much for your concern and prayers. We continue to see God at work as we get the results from each test. Please continue to pray for her feedings, the results of the 2nd newborn screening, and the issues with her tongue and mouth.
We Truly are in His Hands, --Michael, Terri, Claire, Caroline & Corban
Monday, February 20, 2006 *********************************
Caroline had her MRI this afternoon around 12:30pm. It took about 2 1/2 hours. The ENT called me at 7:00pm this evening with the results. The MRI showed no indications of a cystic mass. It did reveal that her tongue is very small and that the muscles in the "floor" of her mouth are underdeveloped. He stated that he could not give me a reason or cause for this. I asked if he knew what course of action we were looking at and he replied that he had seen many children with oversized or large tongues, but he had never seen any with tongues that were to small. He is going to take his findings with him back to Medical City Dallas and consult with other specialists there. He is also still concerned about her lack of voice, so he is coming back on Wednesday evening with a camera that they will put down her nose so they could look at the back of her throat and voice box.
Once again we really do not have any answers, or a course of action. We know that God has chosen the path that lies before us, so we can rest in the fact that He will be there to lead and guide us. We covet your prayers for Caroline, the Drs. that care for her, and any decisions that we may have to make concerning her care. We take comfort in the words of God in Jeremiah to Judah.
I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you Hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. Jeremiah 29: 11-13
We Love You All, Michael, Terri, Claire, Caroline & Corban
Saturday, February 18, 2006 *********************************
The ENT saw Caroline today and discovered what appears to be a cyst under her tongue. They are going to schedule an MRI to look at it and get a better picture. They will have to sedate Caroline to do the MRI. Most likely they will have to surgically remove the cyst as well. While this all appears to be treatable, it is just one more thing to add. The ENT will also come back on Monday with a camera that he will put down her nose to view the back of her throat and her vocal chords. Once again we ask that you pray with us through this entire process. We know that this is all in our Heavenly Father's hands.
They may do the MRI today, we are not sure. Caroline's nurse said that she would call us as soon as she knows something. We will keep you updated as well.
Thank you again for your prayers, Michael, Terri, Claire, Caroline & Corban
Thursday, February 16, 2006 *********************************
Here's what I'm saying:
Ask and you'll get; Seek and you'll find; Knock and the door will open.
Don't bargain with God. Be direct. Ask for what you need. Luke 11:9-10 - The Message
We came to you last night and asked for you to pray specifically for Caroline's feedings and her breathing during the feeding process. Today they did not start her first bottle until 3:00pm. They began with the special bottle and nipple as they have done in the past and it was having the same effect, not much progress. The Nurse Practitioner (a different one from yesterday) decided to see what would happen if they just gave her a regular bottle and nipple, and she finished the entire bottle in 20 minutes. PRAISE THE LORD! We want to join with you all in celebrating with our God and this answer to our prayers. We can not express what it means to us to know that you are all praying for us. Her nurse today also told us that she heard Caroline cry out today, her first time to hear Caroline cry. We will take that as a praise as well.
We still ask for your prayers for the blood test results and the exam by the ENT Dr. We will keep you posted as things progress.
All Our Love, Michael, Terri, Claire, Caroline & Corban
Wednesday, February 15, 2006 *******************************
We wanted to give you an update on where we are at this time, and to ask you for some specific prayers for Caroline.
They did start the bottle feedings for her on Monday. Right now they are only trying the bottle two times a day, for 10 minutes each time. They want her to be comfortable with it and try not to over work her. The first feeding went ok and she took about 10ccs. That evening she took about the same. Yesterday the feedings went about the same as well, she took about 12ccs in the morning. Last night they let me feed her and she took about 10ccs again. I mentioned to the nurse that it looked like it was going to be a slow process, to which she replied "Yes, it could be." She evidently let the Nurse Practitioner know that I was asking questions, because she came in shortly and went over everything they were looking at at this time. They feel that her tongue is on the short end of average and this could be causing some issues with her getting enough suction to get the milk out. They are using a special nipple to work with her on this. Also, because it is taking her so much effort, her breathing can get labored so that they have to bump up the oxygen flow to the nasal canula. She said she did not know how long they were going to give her before they determined that she was not going to be able to bottle feed. I asked what the alternatives were and she said that she could possible go home with a stomach tube and we would feed her through the tube using a pump, like they are currently doing in the hospital.
Now, this particular Nurse Practitioner has never been overly optimistic, and we have not actually spoken to one of the Drs. about the feedings, so this is all preliminary. We do want to ask you to begin praying specifically about Caroline's feedings. Pray that these will begin to go well, that she will begin to make progress and that her breathing would not be as labored during this process. Also, they are still probably going to call in an ENT to look at her throat and her vocal cords to make sure that everything looks ok, so please pray for this as well.
We should be sending off the bloodwork for the more extensive newborn screening this week. We do not expect the results from this for a couple or weeks.
Corban is continuing to do great. Eating and/or sleeping most of the time. Claire is loving being the big sister. She and Corban have bonded well together. Terri and I are keeping up at the moment. Our parents and friends are a big part of helping us be able to take care of Corban and Claire, and still being able to go to the hospital to see Caroline. Just continue to pray for us, that we do not let ourselves get discouraged. We know Who the Great Physician is.
Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let you requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your hearts and you minds in Christ Jesus. Philippians 4: 6-7
Saturday, February 11, 2006 *********************************
“On Him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.” 2 Corinthians 1:10-11
Thank you so much for your prayers!!!
Caroline’s chromosome test came back normal. PRAISE GOD!!
Caroline moved to a big girl bed (an open crib) on Friday night. She is doing very well off the c-pap. She is on the nasal canula breathing room air. They are slowly decreasing the saturation. She will start bottle feedings on Monday. We’re not sure if they are still planning to have the ENT look at her. The x-ray on her hands came back fine also.
When Caroline was born her stomach was distended and her ribs were bell shaped. At the time they told us that her ribs could have been shaped that way because of how she was positioned in the womb. They said that could work it self out. They also told us that her stomach could be enlarged because her stomach muscles have not developed enough and as her muscles get stronger that will pull her tummy in. The doctors are exploring all possible reasons for the distended stomach and the bell shaped ribs. This was the reason they did the chromosome test. They are now sending off another newborn screening to check for additional metabolic disorders.
Please pray that the newborn screening will come back normal also. Pray that Caroline’s feedings go well.
Thursday, February 9, 2006 **********************************
Corban (6 lbs - .04 oz) has been home for three nights now and is doing extremely well. We are so blessed. He is a very "easy" baby. He only cries when he is hungry. He is eating every three hours pretty much like clockwork. We took him to the Pediatrician yesterday, Wednesday, and the Dr. was very impressed with his progress. He said he was doing outstanding considering what he had been through. Praise the Lord!
Caroline (4 lbs - 9 oz) was taken off the C-Pap completely today. She is now only on the nasal canula. They are going to see how well she does, but we are praying that she will not have to go back on the C-Pap. Her cries are still very faint so they want an ENT (Ear, Nose, Throat Dr.) to look at her before they start bottle feedings, just to make sure everything looks good. They are also going to do an X-ray on her hands, there is some concern about her thumbs possibly being double jointed. They have done a full body scan and that came back with no concerns. Still no word on the chromosome test so we are still praying for favorable results.
We want to thank you all for your prayers and notes of encouragement. Terri and I are holding up ok, it just takes a lot of coordinating and the days do not seem long enough to get everything done. Claire LOVES being the big sister and has even decided that we can keep "the boy". She has still not gotten to see Caroline yet, but hopefully that will happen soon.
We Love You All --Michael, Terri, Claire, Caroline & Corban
Monday, February 6, 2006 ***********************************
Corban got to come home today!! He is doing great. Praise God!!! Claire was so excited when we came home with Corban. She got to hold him. She also got to show him off to her friends Kate and Beth.
Caroline is continuing to make good progress. On Friday they took the C-pap off twice for 45 min. On Saturday they took the c-pap off for 30 min. every 6 hours. On Sunday they took the c-pap off for 3 hours every 12 hours. Today they took the c-pap off 3 times for 3 hours. Once she gets completely off the c-pap they will be able to start bottle feedings. We are still waiting for some chromosome test results that should be back later this week.
Please continue to pray for Caroline’s lungs. Pray that the test results will be normal.
Thursday, February 2, 2006 **********************************
Thank you so much for your prayers. We are seeing God work everyday.
I just wanted to give you a quick update.
Caroline She is still on the c-pap (the oxygen tube that goes in her nose to her lungs) She is on the lowest setting. They are going to try to take it off in the next day or two. The Dr. said not to be surprised if they had to put her back on c-pap. Her lungs may not be developed enough yet. She weighs 4lb 4oz now. (It is normal to lose weight) She was taken off the IV early in the week. She was under a Billy light for jaundice, but she is off that also. She still has the feeding tube. She is up to 40cc's per feeding. As soon as she gets the c-pap out she can start taking bottles. We got the results of the brain scan. It shows that she has two small cysts in the frontal lobe of the brain caused by a lack of oxygen. At this time they do not know if it will effect her at all. The Dr. said there have been people who have had the whole frontal lobe removed and function normally. We will probably have to see a neurologist when she gets out of the hospital.
Corban He weighs 5lb 10 oz. So, he is back to his birth weight. He moved to a big boy bed ( an open crib). They have taken out the IV, the nasal canula (oxygen) and the billy light. So, all he has now is the feeding tube and the monitors. He is taking 25 cc's per feeding. At two of the feeding he takes a bottle. He will have to take a bottle at all 8 feedings in 15 minutes each before he can come home. Today he took his bottle in 5 min.
We are taking Claire to see Corban today. Now that he is off of everything we can take him to the NICU door and Claire can look through the window and see him. She is very excited.
Please continue to pray for Caroline's lungs. Pray that Caroline will do well with the bottle feedings. Pray that Corban continues to make good progress with his feedings.
"Give thanks to the Lord, for he is good." Psalm 136:1
Saturday, January 28, 2006 **********************************
Wow!! What a week.
I want to thank you all so much for all your calls, cards and e-mails and mostly for your Prayers.
For those of you that we haven't talked to I'll give you an update. I went to the doctor on Monday for my regular bi-weekly appointment. I had a sonogram and every thing looked good. Corban's fluid was up a little. My blood pressure was high. The Dr. put me on semi-bed rest. I wasn't going to be able to go back to work.
I left the doctor's office at 11:20 am and drove myself home. When I got home I really started feeling bad and feeling a lot of pressure. At 11:40 am I called Michael's mom and asked her to take me back to the hospital, because I thought I was in labor. Before she could get to my house my water broke. We got back to the hospital at 12:10 pm. As soon as they put me on the monitor we realized my contractions were very close together. They checked me and I was dilated to an 8 and Caroline's foot and cord were already coming down the birth canal. She was laying on her cord and her heart rate had dropped. This is when they got in a big hurry. They took me in for an emergency c-section. Michael got to the hospital about 12:20 pm. He was at the hospital for the birth, but he wasn't able to go in while the babies were being born.
Caroline Hope was born at 12:28 pm on Monday, January 23, 2006. She weighed 4lb 15oz. She was 17 1/2 inches long.
Corban Dane was born at 12:30 pm He weighed 5lb 10oz. He was 19 inches long.
We are so thankful for the precious gifts God has given us and that He has been there every step of the way.
They immediately put Caroline on a ventilator and Corban was not. After a few hours they put Corban on a ventilator as well. Caroline came off the vent. on Tuesday and they put her on c-pap ( the oxygen tubes that go down the nose) Corban came off the vent. on Wed. and they put him on a c-pap also. They were both on IV fluids until Thurs. Caroline started being tube fed on Thurs. She has a tube that goes directly to her stomach that they put milk or formula into. She started taking 4cc's every three hours and now she is up to 12 cc's. Corban just started being tube fed on Friday. Today he is up to 10cc's. The nurse told me this morning that once they get up to 30 cc's at a feeding they will start substituting bottle feedings for tube feedings.
When Caroline was born they said she had an enlarged liver and spleen and her ribs are "bell shaped". All of the tests have come back that everything is normal with her liver and spleen. They did a brain scan and found that she has small cysts in her brain. They think this may have been caused from a lack of oxygen at some point during the pregnancy. The doctor said that the cysts are so small that other parts of the brain could compensate for this, or they could disappear altogether. They have run more tests and we should know more later next week.
Corban started having such a hard time breathing, they also did some tests on him. They did a sonogram on his heart. There is a small valve in every baby's heart that is normally open when the baby is in utero that closes once the baby is born. At the time his valve was slightly open, but has now closed. His heart looks good. There are no heart problems. PRAISE GOD!!!
Claire is doing good. She spent the week going to school in the am and spending time with her grandparents in the afternoon and night. She is glad to be home, but is always wanting to know where we are going next. She has not gotten to see the twins. She is NOT happy about that. Once Corban and Caroline are a little more stable we will be able to take them to the NICU waiting room window for her to see.
Michael is doing good. He was off part of this week and went back on Thurs. He will take off more time once the babies come home.
I'm doing good. I got to come home on Thursday. Recovering from an up and down c-section is a little harder than an across c-section. I can't do house work for 2 weeks (darn) and I can't drive for 10 days.
Ellie (the dog) is glad to have part of us home. She didn't know what to do being here all by herself for the week.
We are not sure when Corban and Caroline will get to come home. At first they had told us a general rule is that most babies need to stay until the 35 weeks (gestation). That could be more or less for each individual baby. Next Saturday would be 35 weeks for Corban and Caroline.
Our biggest job now is coordinating which way everybody is going. My mom comes by and picks Claire and I up in the am and we take Claire to school. Then we spend the morning at the hospital with Corban and Caroline. Then we pick Claire up from school at 12:00 pm and I spend the afternoon with her. When Michael gets off work we go back to the hospital. The NICU is closed from 6:30-7:30. So, we come home to eat dinner. Then Michael goes back to the hospital while I get Claire ready for bed.
We are so thankful to have grandparents and such great friends who have helped watch Claire while we have been at the hospital!
Please pray for Corban and Caroline. Pray for Caroline's brain and ribs. Pray that Corban and Caroline continue to grow stronger each day. Pray specifically for their lungs. Pray that their feeding will continue to go well. Pray for the doctors and nurses that are caring for Corban and Caroline.
We covet your prayers. Terri
" Thanks be to God for his indescribable gift!" 2 Corinthians 9:15 |