Carolines Diary

Carolines story ends up being one of the best outcomes a child diagnosed with PHHI (Persistent Hyperinsulinemic Hypoglycemia of Infancy also know as Congenital Hyperinsulinism) can have.

She was born June 05 and weighed 9lbs and 1 oz and 21 inches long.

We were waiting to take most of our pictures at home but unfortunately, we were not able to take Caroline home. While Lisa was getting Caroline in her going home outfit, the Nurse that had been called in to remove the ankle bracelet that makes sure babies don't go where they aren't supposed to noticed that Caroline was listless and took her vitals. Caroline was cold so the nurse took her back to warm up. Caroline had her blood sugar checked again and it was very low. At this point, things began to blur together. Caroline had several tests performed. She was put in NICU (Neo-natal Intensive Care Unit). Blood was drawn, tests were ordered. She received an IV, she had a spinal tap, etc... Our Pediatrician was at the hospital and came to discuss what as happening and what everyone was concerned about. Everything from a metabolic disorder to just a low blood sugar level. Caroline was not able to get her blood sugar level raised with the normal doses. It took 26 ml/hour of sugar water and a shot of steroids to get her blood sugars above the required 50 reading. That took approximately 11 hours. No pictures from this day, we were very nervous, upset and concerned.

6/16/2005

Morning: A very up and down day. We were able to wake up with good news regarding the blood sugar levels. Caroline was able to maintain her blood sugars in the upper 60's with the high concentration of sugar waters and steroids. As the day progressed her blood sugar readings continued to increase to 84 and 135. Caroline is only having her blood sugars checked every six hours. The doctors were starting to decrease the amount of sugar by 1 ml/hour as long as her test came in over 60. Our high sugar level was at 25 ml per hour and we were able to finish the day at 22 ml per hour. In addition to this, they are starting to give Caroline some nourishment through the IV. She is getting a little bit of fat and was started at 0.5 ml/hr on that. Mom got to hold Caroline for a long time this morning. While Mom was holding her she lost her IV tube. Lisa didn't do anything wrong, but it came out anyway. Caroline's blood sugars went down drastically for the short time the IV line was out. We are hoping for a pik line so that we can hold her again. They have tried twice, but with no success. Right now the line is in her umbilical cord. Caleb was able to come in to the hospital and visit Caroline as well just after lunch.

Afternoon: In the afternoon we received a call from the hospital that Caroline appeared to be having seizures. An EEG was ordered to check out her brain waves. Mom and Dad rushed to the hospital to see what more we could learn. We knew the seizures were being caused by the extreme fluctuations in her blood sugars, but we didn't know what that meant for Caroline. Dad had thoughts and concerns about permanent brain damage, or possibly slower development, or who knows what. Mom was upset as well. Dad did pretty good holding it together until he started talking to Caleb about why we needed to rush to the hospital. At that point, both Dad and Mom were in pretty bad shape. Lisa called our minister to come to the hospital in hopes that a prayer would calm down Mike. We were able to see the end of the EEG test.

After the EEG test, the doctors were changing shifts and were discussing Caroline while she had a seizure and decided to not wait for the results of the EEG. They started her on Phenol Barbitals immediately. They discussed with us that Caroline having seizures meant that she was having a lot of stress on her brain and it was very difficult on her, but it didn't mean brain damage or slow development or anything. It only means that she was having seizures and she would need medication to control the seizures. We will probably continue to medicate even after she has come home from the hospital, but it is not permanent. They mentioned it might need to be maintained for 3 months. We will be making a determination of when to quit the medication with a pediatric neurologist from UK at some future point.

Mom and Dad are doing much better but didn't need Caroline putting them through that.

6/17/2005

1:20 pm: We were able to see Caroline this morning. She made it through the night with 5 seizures. They were mild, but the longest was 2 minutes in length. Most of her seizures have be less than 30 seconds. By the time we got our morning update, she hadn't had a seizure in almost 2 hours. Her last seizure was at 7:40 am and she had her vitals and blood sugar taken at 9:00. Her pattern had been to have more seizures after she had been agitated by the nurses. We took her not having any after the 9:00 check as being very positive. She is scheduled for an MRI this afternoon. She had a good night and seems to be very restful. Her blood sugar was 155 today and she has the sugar reduced to 18 ml per hour.

Our pediatrician was in again today checking on us as much as on Caroline.. Our friend Carla also stopped by for a brief visit. JD and Dani were able to come in for a couple of seconds as well. However, they came when we were getting ready to talk with the Doctor and were not able to stay long so they will need to visit again this afternoon when they can visit for a little while longer.

2:45 pm: Were able to get the results of the MRI. Caroline passed with flying colors.We will probably have to do it again in a week or so, but good pictures so far.

6:30 pm: Finished our visit with Caroline before dinner. We were able to talk with Caroline's Doctor. He had news of a consultation with a pediatric neo-neurologist at UK hospital. He felt that the EEG results were not such that Caroline would need to be transferred to his care or that anything needed to be done differently as a result of his interpretation. This was very good news. Confirmed that we were in good shape with the current protocol. He did want to be involved in the decision in the future to discontinue the use of the Phenol Barbitals that are controlling her seizures. But that will be in the future and on an outpatient basis. She still hasn't had a seizure since 7:40 this morning. We also got the results of an insulin test that was taken during Caroline's intake. The insulin levels looked normal. You would not expect the results that we had with the baby of a mother with Gestational Diabetes. We are still looking for why this has happened, and we may never know, but the search continues. Caroline was peacefully sleeping and every once in a while would stretch and move. By the time we left she had her foot propped up on a pillow and Lisa thought she looked like she was waiting for a pedicure. Dad was nervous because she wasn't moving earlier today and now Dad is nervous because every time she moves he thinks she might be having a seizure. No matter what Caroline does, Dad is going to be nervous. We are hopeful that she is making progress and will be able to switch her IV line from her belly button to her hand tonight. That would be a huge step because then she would be able to be held by Mom and Dad and everyone would feel better. I hope to put up a couple of more pictures tonight.

11:20 pm WOW!!! What a night! Caroline was on fire tonight. Here are the important milestones. Her blood sugar was 84. Not enough to drop again, but well above the acceptable range of 50 and above the range of 60 when we thought they would drop her. However, considering she was at 115 or so earlier in the day, we don't want to do anything too fast. She is continuing to taper off of her hydrocortisone which is the steroid. Here is the big stuff. She was awake!!! Her eyes were focusing on her Mom and Dad. We got there at 8:00 and found her awake. Boopie (JD) and Mom were shocked. Boopie quickly got Dad in to see before she fell asleep. She stayed awake until 20 minutes till 10. Then she took a quick snooze and woke up again. The Doctor removed the oxygen tube as well as the tube going to her belly to drain out gunk (I think that is a medical term). And Mom and Dad were able to hold their little girl again for the first time in what seems like forever. We even got to feed her 3 ml of Mommy food. Many many milestones were crossed in a short time. We stayed until they kicked us out. We can only pray that tomorrow is as good.

6/18/2005

3:30 pm: We are having a good day so far. This morning they changed her Dextrose concentration from a 15% solution to a 12.5% solution at about 11:00 am. In addition to that they slowed down the drip. We are currently at 16 ml/hour. We were at 17 ml/hour on the higher concentration before. Her noon sugar reading was over 80 and her 3:00 reading was just under 80. We need to stay above 60 to continue to reduce so that is excellent.

In addition to changing her dextrose, they are continuing to feed her. She is on 5 ml of the Mommy food right now and will be moving to 10 ml as she is still progressing. Her 6:00 reading is important because a good reading will mean that her IV can be changed to her hand and we won't need to use the unstable belly button IV anymore. She will probably move to a crib as well at that point.

Caroline is very tired and hasn't been very active today. Dad worries about everything, but with the changes in the sugar that Caroline is getting, Dad is extra nervous and really wants to see her open her eyes and cry and all of the other things you expect a baby to do. But she is moving along faster that the doctors had prepared us for. We are hopeful that we can continue to progress like we have been.

10:20 pm: We had another good night. The numbers at 6:00 were good. Perfect temperature. Blood sugar of 78. They were able to remove the IV from her belly button and use the IV in her hand. She has been sleeping and still hasn't gotten upset and cried. But she was able to eat 11 ml of Mommy food and obviously wanted more. Her dextrose drip was reduced to 14 ml/hour of the 12.5% solution.

When we returned for our evening with Caroline, she was continuing to do good. Her IV in her hand had been there long enough and it was getting puffy. She now has a new IV in her scalp. It is much easier to think of it as a hair bow. Then it can almost look pretty. Her blood sugar was at 70. We were worried that the number may be low because of her puffy hand where she was getting the dextrose drip, but she was still staying above the 60 level and was able to get her drip down to 13 ml/hour. Mom got to feed Caroline 15 ml of Mommy milk. That is 1/2 an ounce. It is nice to have a different measurement for what she is eating than ml. Because she is doing so well, Caroline has been transferred to a crib and put on some pretty pink pajamas with yellow flowers and has a pink bib with bunnies. The pink hair bow finished accessorizing just right. I am tired and we need to get up early to get some work done and be back to the hospital before 9:00 am if we want to feed her.

6/19/2005 (Father's Day)

10:00 am: Had a great night. Our sugars have been holding between 80 and 100. We are continuing to reduce her dextrose. She is at 10 ml/hour of the 12.5% solution. She is at over an ounce for feeding. The doctor said everything looked great.

2:20 pm: We visited for Caroline's 12:00 feeding. She passed her blood sugar test. It was at 74 and Caroline is down to 9 ml/hour. Still on the 12.5% solution, but we anticipate moving to a 10% solution today. In addition to that, Caroline will be taken off of her Lipids as she is doing a good enough job of eating the breast milk. It was Dad's turn to feed Caroline and we are at 33 ml's. We were doing a great job of eating until we got about halfway through. At that point, Caroline didn't want any more. However, we need her to eat everything as she is getting taken off of her lipids. We were continuing to try and feed and Caroline turned blue. The nurse hurried over and got her. When Caroline was upright, she let out a monster burp. The nurse gave her some oxygen and her color quickly returned to a pretty pink. We returned to feeding and Caroline still wouldn't behave for Dad. Dad got her to give him a couple more good burps. But then she just wanted to sleep. We finally gave up on Dad finishing her bottle, and and Mom didn't have any luck either. The nurse finished feeding Caroline and she got it all down.

Dr. Walker didn't like how Caroline behaved for her Dad either. Even though it seems like she was just tired and full of air, he wants to repeat her EEG on Monday. They wanted an EEG next week anyway, but Dr. Walker wants to be sure that Caroline wasn't just being stubborn and that she isn't having any seizures that are not manifesting themselves physically.

11:15 pm: I'll start where I left off. We had a visit this afternoon from Reverend Chad and our Parish Nurse Anne Smith. We were able to get to feed Caroline again at 6:00 pm. Unfortunately, she was so tired she wouldn't eat from Mommy either. We tried every trick that the nurses in the NICU could teach us with no luck. Finally we gave up and our nurse was able to get her to eat with her experience. Caroline was certainly making things difficult on her parents. We changed to an oral dose of phenol barbitals. I think the oral dose knocked her out and made her sleep so deeply that nothing was going to make that child eat. She was positively limp. It was to the point that we called a nurse over to see if she was all right. She is a drama queen without a doubt. You would think she could give Dad a break on fathers day.

We returned for our 9:00 feeding and Caroline was more alert this time. She was able to start looking around and fighting when we took her temperature and changed her diaper. She woke up to eat and ate all 2 oz's. We had a couple of good burps also. She stayed awake for over an hour and just looked at us and seemed to focus very well. As of now we are at 5 ml/hour of the dextrose. Her sugar was at 64 on the last check. Her next reading is at 12:00 and as long as it stays above 60, they will drop her to 4 ml/hour. If she progresses this way to 3:00 and has a good reading, The dextrose will be stopped. We are hoping to breast feed tomorrow. As long as we are talking "if's", three days off the dextrose with good numbers and she can come home. The finish line has been set.

6/20/2005 (Original Due Date)

8:00 am: Caroline is not behaving this morning. Our last good sugar number was at 9:00 last night. We have dropped down to the upper 40's and low 50's. Instead of going back down to 4 we have been pumped back up to 8 ml/hour of the dextrose. We need to keep praying that she can handle this next step. Last time we were getting close Mom and Dad had a sit down and talk with Caroline and she straightened her act out. We were really disappointed to have this setback. We have been working really hard to be patient. We didn't want to rush things and get our hopes up for identifying a specific day when she might come home. When we got close enough to the finish line that we could finally get some hope, Caroline immediately started changing our plans. Our imagination is getting the better of us relating to why she is having these problems. We want her to get a good number so we can start getting some relief.

11:30 am: Good numbers. 64 on sugar. Ate good. Dialed dextrose down to 7. That's all I have time for now.

4:00 pm: The noon numbers were 51 and the 3:00 number was 56. We are still at 7. Good news for the day is that Caroline had another EEG this morning and the results were normal. We are hoping to get the results of the pediatric screening back today. This is the important test to let us know if there are any metabolic issues that could be causing her blood sugar to be wacky. If it isn't anything metabolic, we are going to be working on continuing to get the sugar under control. If it is metabolic, it could be something simple or very serious. There are about 50 tests that they screen for. I am just trying to prepare for anything. We are getting ready to go back to the hospital for the 6:00 care time.

11:25 pm: We had a good reading at 6:00 and were able to dial back the dextrose 1 more ml. We are now at 6. Caroline continues to eat well. She was able to breast feed for a couple of minutes, but got frustrated and needed to be followed up by the bottle. She had three oz's from the bottle after she finished drinking what she could on tap. We also learned the "preliminary" report for the metabolic screening tests were all normal. That is an enormous weight lifted from our minds. We have officially ruled out specific problems that could be causing her blood sugar to be acting funny. However, we knew that we might never find out and it really doesn't matter as long as she responds to the treatment. Between 6 and 9, Caroline needed to change her IV and was disconnected for a while. Even though she was not getting her full drip, she was able to maintain a 57. Not enough to dial her dextrose back, but enough considering the change of IV. We are complacent with her going slow as long as she doesn't get below 50 and we need to take a step backwards. A good night. Caroline continues to maintain and move slowly forward and Dad was able to see Caleb practice for his All Star baseball game. Even though Caleb was one of the youngest on the team, he hustled everywhere and made many outstanding plays. On one play he almost stretched completely out to make a diving catch at a fly ball Caleb was able to get his glove under it, but just had it pop out as it was hitting the ground beneath him. Even without making the catch, his effort and the fact that he came so close created thunderous applause from the stands.

We are hoping that Caroline can continue to maintain and move forward as the day goes on. Keep the prayers coming.

6/21/2005

11:15 am: This is Jerry....Mike and Lisa are busy. Caroline did not have the best of nights. Her blood sugars have regressed and they have changed the numbers to where they were a couple of days ago. The Drs are working hard to get the right combination for her and to get her leveled off and are arranging to have her transferred to UK center and we expect that to happen today some time. This is up and down a and hard on MIke and Lisa as well as everyone else. They are holding up pretty good. When they get to UK it may happen that she will be in her own room and Mike and/or Lisa will be able to stay with her. This will allow Lisa to nurse in a more normal manner. We will keep you informed as things change.

1:00 pm: This is Jerry again. We just got back from the hospital and feeding Caroline her lunch. She ate really well but the sugar numbers were not good.....first test was 41 and the confirming test was 37. Below acceptable levels. They have moved up the glucose to 8ml per hour of the 12.5% solution. The move to UK is eminent. They are just waiting for the word. They will move her via ambulance even though its only about 10 blocks. Mike and Lisa will be called and go too as well right away. They are ready. I will try to keep you up to date as I hear more.

3:30 pm: Lisa and I have just returned from Central Baptist. Caroline has been transported to UK's Children's hospital. She will be in the NICU there as well. It was more difficult that I thought seeing her leave Central Baptist. We feel like the nurses are family they have been so nice. We were very upset because she was supposed to leave that hospital and come home with us. We are hopeful that UK will be able to find some answers as to why she is having such problems regulating her sugar. UK has more resources and more specialists. We will need to get used to the new people at UK and find a routine that works there. We still need your thoughts and your prayers.

12:00 am: We have had a long day. Getting used to a University Hospital is much different. We had some very long and anxious moments. They are less concerned about making Mom and Dad feel comfortable than they are about fixing our little girl. We had some difficulty getting in to see her and that didn't help things much either. However, when we got in, she seemed to be well cared for and we think we know why we were delayed. We probably won't be getting such detailed information to pass on about what is happening with her care, but will pass on what we know. Caroline had a short visit from both a geneticist and an endocrinologist today. They are starting to do some tests on her. Her sugars were low in the beginning, but the most recent number was 58. UK is trying to stabilize her and is more concerned about keeping her above 50 than they are about getting above 60 to be able to dial her back. We are on a different treatment path now and need some test results to decide what to do next. Mom and Dad feel much better after our evening visit. Caroline was able to get dressed and make some presents in her diaper. We are starting to figure out how the UK system works and are getting a plan in our heads as to how we need to deal with things.

6/22/2005

8:30 am: This is Jerry again. I just took Mike and Lisa over to UK. They are meeting thier Pediatrician there whom is going to have to oversee the long term care Caroline is going to need and thus she wants and needs to understand what is happening. She is going to help them navagate the system a little too and communicate with the expert Drs they need to see. Over night Caroline held her own pretty well. Her temp was maintianed and the blood sugar levels were over 40 and thus in the acceptable range. They are maintaining a level that will allow them time to do some tests to determine what needs to be done. They are planning to come home for lunch but we will see how that goes at lunch time.

11:00 pm: This is Lisa. Poor Mike is really tired tonight. It's been a long day, sorry for the infrequent updates. It's a little more difficult traveling back and forth between UK. Caroline is stable and holding her own. She is able to maintain her temperature. She is still on the D 12 1/2 at a high drip of 19. Her sugars have fluctuated between 90 and 60 but well above the required 40. She begins to wake herself up before each feeding time which is wonderful. Jerry and Carol got to visit her today. Granny got to feed her! We were at the hospital at 8 am. Our pediatrician met us there and introduced us to several staff members. Dr. Bos has been a HUGE blessing to us. She checks in on us by phone several times a day and visits Caroline in person at least once a day.

There was another unsuccessful attempt at a PIK line. This is a real problem but so far her current iv is holding out. Caroline had another EEG today. (There was no apparent seizure activity but they want their own test.) We don't have the results of that yet but expect it to be normal. Tests have been run that the endocrinologist who will see her tomorrow will need. We are praying for some answers, whatever they may be. We are trying to be patient but we are all so anxious to have her home with us! A few days ago, I told Caroline about all the pretty clothes waiting for her at home. I told her the shoes alone were worth coming home for....and she immediately got a HUGE smile on her face. The nurse burst out laughing.

I had a quick visit at home with our dear friends Mark and Angie who were traveling through Lexington. Mike went to Caleb's 5:30 All Star game, I stayed with Caroline for her 6 pm feeding but left at 7 at the shift change and caught the end of Caleb's second game. We left the game and went immediately back the hospital. We missed her feeding time but were allowed to hold her. Although we don't feel like we are making any real progress right now, we are so relieved that she seems to be comfortable and stable and we went a day without any kind of crisis. We hope that tomorrow will be the beginning of a new treatment for Caroline that will get her home sooner rather than later. We love you all and feel surrounded by your love and lifted up by your prayers. We are very grateful for each of your many kindnesses.

6/23/2005

1:30 pm: We are continuing to have a stable stay at UK's Children's Hospital. We have learned the way things work there and we like the Doctors. We are trying to be at UK in the mornings as that is when the Doctors do rounds. They make it to Caroline any time between 9:30 and 10:45. We have a care time scheduled to feed her at 8:00. That takes up most of our morning.

This morning at rounds we learned that Caroline's Echo Cardiogram showed only things that are normal to find in a newborn. Her EEG was normal as well, but there were some spikes on the right side of her brain and they are going to do an ultrasound on her head to see of there is any injury. The geneticist doesn't think there is anything wrong from a genetic standpoint. We are down to waiting for the Endocrinologist as everything else has been ruled out. Her cortisol levels were a little low on their recent tests. Caroline ate really well this morning and had a little difficulty before lunch.

3:30 pm: Went to visit Caroline with Granny and Grampy. We had a good visit. Granny started feeding Caroline and Dad got to finish the job. Her sugar was at 72 and they are trying to dial her down a little bit so that her fluids aren't as high. We still haven't heard anything about the Endocrinologist visiting. Caroline ate and burped really well. It is hard on Grampy to see her hooked up to an IV and have to leave her. She really looks like we should be able to bring her home.

11:15 pm: Lisa again. We all took a break and went to Caleb's baseball game. He had quite a crowd there....Mom and Dad, Grandaddy, Granny and Grampy, Carla and Damon and Julie, Ray, Stephen and Michael Parsons. They played really well but lost by 4 points. Stephen surprised Caleb with a special gift. He had taken a photo of Caleb and Caroline from the web site and sketched it for Caleb, beautifully framed and all. Caleb was thrilled with it and has placed it next to his bed (well, his Aerobed for the time being as he loaned his room to Granny and Grampy.) When we got home from the hospital he wanted to show us where he had placed it. It was a wonderful gift and Stephen is very talented!

After the game, Mike and I got to the hospital in time for Caroline's 8 pm care time. Mom had to pump but Dad changed her outfit and her diaper.....Caroline played a little trick and peed on Dad. She ate a big dinner but refused to give us the big truck driver burps we've become accustomed to hearing. Her head ultrasound is ordered but hasn't been done yet. It is unclear if the endocrinologist saw her or not. We hope that he at least looked over her tests. The nurse said that was the important part and that he couldn't tell much from seeing Caroline in person. Jerry and Carol are leaving early in the morning and Mike is going to stay home to work in the morning and wait for the babysitter to arrive so I will have to have a list of questions for rounds in the morning. We are so pleased that she is stable and maintaining her sugar between high 60s and low 70s but we are disappointed not to have had any new information today. We will miss Granny and Grampy!

6/25/2005

7:00 am: Sorry for no update last night. Mike and I had a stressful evening. Mike met Larry and Lisa at the hospital yesterday about 3:30. They have been so good about taking Caleb to his baseball games and practices they had not gotten to see Caroline for several days. They were not allowed in for over an hour and when they did get in, a test was being started on Caroline and they were only allowed to stay for about 5 minutes. Mike returned from the hospital distraught because the UK system is so different from Central Baptist. It is more difficult for us to see a doctor and things seem to move more slowly and information seems to be contradictory at times. Our emotions and frustrations were running very high.

When we returned to the hospital after the 8 pm shift change, we were not able to hold Caroline. She was given an arterial line for the Adrenal Challenge test and they will leave that in place for the time being in order to be able to easily draw blood for labs. Mike was able to change her diaper and could hold the bottle for her but we could not actually hold her. Her sugars were up around 133 but that is because of the test they had run. We spoke to the attending on call and he said that although the test had not been studied by the endocrine people yet, the first high sugar indicates that her adrenal system is functioning normally.

To be perfectly honest, for me, this is a double edged sword. On one hand, with each normal result of each test, we are hopeful that I did indeed have undiagnosed gestational diabetes and Caroline is just having a very hard time getting her sugars, insulin, glycogen, etc in order but will eventually be able to self regulate. On the other hand, with each normal result of the more common tests, we are so fearful that Caroline will have a more serious and unusual prognosis. Lots of scary words have been floating around out there. They will not begin dialing back Carolines sugar feeds until her sugars stabilize again from this test. It is so hard to see her in the isolette with numerous tubes and lines again. The arterial line also means she is back to being in a diaper only.

There is still concern about the volume of fluid she is receiving. She is on a saline drip now as well as the sugar to keep the arterial line open but her diapers are very, very wet and very dirty so it seems she is not doing a good job of not retaining too much fluid. They are adding calories to her breast milk feedings. There is some hope that will also help her with her sugar levels. She is eating about 4 ounces every 3 hours now so she has graduated to a big girl bottle. She was so sweet and happy yesterday morning. She smiled at me at least a dozen times. She was so alert and focused on my face I could almost imagine we were home in our own rocking chair.

Our most fervent prayer now is that she will indeed be able to self regulate. The other alternatives are far too scary to think about right now, at least for me. We are so very grateful for your love and support. The beautiful and nourishing meals we keep finding in our kitchen have helped us stay healthy and strong. Your emails, cards, messages and phone calls continue to lift us up. Your interest in and love for Caleb are one of our greatest blessings. We love you all and continue to ask for your prayers for our sweet baby girl, for wisdom for her doctors and for strength, patience and renewed hope for Mike and me. .

1:00 pm: Things are speeding up now. The attending ordered a TSH test to check on Carolines Thyroid function. He also requested a hemoglobin test on Lisa. We had thought the window of opportunity for the hemoglobin test had already passed. This is a test that would report on Lisa's blood sugar levels during the last 6 weeks of pregnancy. Although the window may have passed, it might not have. Therefore, a normal hemoglobin level won't tell us anything, but an elevated one would indicate gestational diabetes.

Caroline's sugars had dropped this morning. They had ordered her dextrose down to 16 late last night. Today, she hit a 47 and a 61 so far. We anticipate that they will be raising up her dextrose back to 17 and holding it there while they continue to run further Endocrine tests.

6/26/2005

6:30 am: There were no changes with Caroline last night. We saw her for her 8 pm care time and were able to change her diaper and give her a bottle. We still cant hold her but have to elevate her head in the isolette to give her the bottle. She is so heavy we have to take turns holding her head up! When we changed her diaper, it was the wettest I have ever seen which is good and indicates she is not retaining too much fluid. When the nurse weighed it she said it was the heaviest diaper she had ever seen in the NICUa record breaker! She is on the 17 drip of the 12 solution and they plan to hold her there while they complete other tests. We know they took blood for a liver function test and we are still waiting for the thyroid test which they should do today. We dont have the results of my hemoglobin test yet. She was resting comfortably when we left last night and her sugars had been in the 70s or 80s at each check. Caroline will be two weeks old on Monday! It is hard to believe she is still not home yet.

12:30 pm: Mike - Very uneventful morning during rounds. No new test results. No new tests ordered. No change in orders. we are in a holding pattern waiting for the Endocrinologist to read the results of the tests that have already been run.

Caroline was busy with Mom and Dad. She still has in the arterial IV, but the nurse let Lisa hold her to feed her. That is a good thing, because she is hard to prop up in her isolet to feed her. She is so heavy. She ate big ad burped well. Her first diaper was very large. Her second diaper was completely clean. Unfortunately, during the changing of the diaper, Caroline decided to make a last minute deposit and did a number 2. It got everywhere. Once Mom and Dad got that taken care of, Caroline decided to christen the new diaper with a number 1.

We are hopeful that we may be changed to a room on the floor. This had been discussed before we were even admitted. Now it is being discussed again. Give a quick prayer for that. We would be able to hold her more, take care of her more and let Caleb come and visit without restriction.

Lisa - Of course, I have to add my two cents to what Mike wrote.

Blessing number 1: Nurse Nancy let me hold Caroline for the 8 am and 11 am feedings. Caroline let out a blood curdling scream while we were adjusting her lines and wires at the 11 am feeding. It turned heads! She was impatient for her bottle. Nancy said that meant she was definitely feeling better!

Blessing number 2: Faithful Dr. Bosomworth arrived in time for rounds. We are SO grateful for Dr. Bosomworth!

Blessing number 3: We are feeling a lot more optimistic today! If you have been praying for strength and hope for Mike and me, your prayers are definitely working. If you have been praying for patience for me, my friend Carla says good luck.but it isnt going to happen!

I am praying we will move to a regular room. It would be so nice for Caleb to be able to visit. He has been so patient and sweet! I am very proud of him. He has not complained once although I know he is missing us and was so disappointed that Caroline did not come home as expected. He has spent this weekend with Larry and Lisa getting some well deserved undivided attention. One of the nurses whispered in my ear You need to be in your own room. You dont need us looking over your shoulder every minute. You need to get her in a cute outfit and enjoy her all to yourself. If we get to move to a room, I am taking every cute outfit she has received and if I have to change her every 2 hours to see her in them all I will do it! I am just dying to see her in the clothes you guys gave her.

7:00 pm: Mike and I made it the hospital for Carolines 5 pm care time. She tricked us on her diaper.again! It took three diapers this time for one change! The arterial line is gone now so we can hold and feed her easily again and shes back in a cute pink sleeper. They decided not to move her to a room until she sees the endocrinologist tomorrow. The nurse seems fairly certain they will move us to a room tomorrow but we are not holding our breath because it will be too disappointing if it doesnt happen. We know so many of the nurses now and they all take a moment to stop and check on her and check on us. She ate really well and was alert and looking at us. We are praying for good news from the endocrine doc tomorrow.

11:20 pm: We had a nice 8 pm care time. Caroline pulled her stunt with her diaper again (twice!) but we were ready for her. She didnt eat as much as she has been but still a good amount, much more than her minimum. One of the nurses who was with us a few days ago stopped by to say hello. She seemed concerned that Carolines sugars have been in the 50s and 60s. She seemed to think they ought to be higher with the glucose load she is getting through iv. I thought about it and wondered, if she is indeed beginning to self regulate could it be that she is finally producing just enough insulin to keep her sugars level with the glucose load. We were surprised that there were evening rounds tonight which gave us an opportunity to ask that question of the attending doctor and she said, yes, she could indeed be controlling her sugar which made me feel really good. That doesnt mean for sure that is what is happening but it could be. It seems to us we have about a 50/50 shot of moving to a room tomorrow.

6/28/2005

6:30 am: Yesterday was a very active day. We started out with a blood sugar of 37. After that reading, they took a lot of labs from Caroline. She took a lot of food during the day. It was a very up and down day with food. She ate anywhere from 2 1/2 oz's to 4 1/2 oz's. Her blood sugars stayed up for the rest of the day. We were able to meet with the endocrinologist. Dr. Smith said Caroline's insulin levels are elevated. She is hyperinsulenemic which means she is producing too much insulin for the other things that are happening around her. At this point we don't know why. Their term for that is idiopathic.

Dr. Smith spelled out our plan for Caroline. Plan 1 would be to start Caroline on the Hydrocortisone (steroid) again. See if that helps to elevate her insulin levels to the point where she doesn't drop below 40 again. If Caroline cannot keep her sugars up on the hydrocortisone, the next drug to try is one ot supress Caroline's production of insulin. I believe he said it was diazoxide. If neither of these treatments work, we may need to have sugury and remove a large portion of Caroline's pancreas. We will be trying to see if Caroline responds to the other drugs over the next several weeks before looking a surgery.

Caroline is doing a great job with everything except her sugars. She is eating well, maintaining her temperature and has good color and everything else a healthy baby should do. She has a bit of a tricky streak in her when it comes to changing her diaper, but Mom and Dad are dealing with that. Because she is so stable in all respects with the exception of her dextrose IV, they have moved us to a room on the floor. Either Lisa or I are required to stay with Caroline now. We are able to care more closely for Caroline and have a little more privacy and quiet. We moved to a room on the floor last night about 7pm.

Caroline started her course of Steroids last night and her sugars immediately shot up near the 130's. We are dialing her dextrose drip back with a number above 60. She did great for a little while, but this morning she had another reading of 37. We are hopeful that it was a blip and as the steroid builds up in her system she will be able to be stable and avoid hypoglycemic states. I will keep you updated on her progress today.

Here is a good website related to Congenital Hyperinsulinism. http://www.chop.edu/consumer/jsp/division/service.jsp?id=47690

12:00 pm: We had a 63 on our last sugar at 8am. We needed to change our IV as it was infiltrated. It took over an hour to get another IV started. By the time we got one in, it was almost time for our next feeding and we were still able to maintain a 48. We were concerned it would be worse. It was hard on Mom and Dad to be in the hall while they were trying to get the IV started. We are hoping for good numbers at 2pm.

10:00 pm: We had a nice day. Caroline's doctors (endocrine) called on us in the morning and afternoon. They want Caroline to wean slowly from the glucose. They will check her sugar every three hours before she eats. If her sugar is above 60 for two feedings, they will reduce her drip by 1. If her sugar is above 50 they will reduce her drip by 1/2. They want her to succeed and we are fine with their plan. So far so good, we had sugars of 92 and 63 and our drip is now at 8. Caroline lost what was left of her umbilical cord today! She weighs 10 pounds 5 ounces!!! The worst part of the day was while she was getting her new iv.

She was awake a lot of the day and wanted to play and talk. She really looked her Daddy over, up and down. Mike is going to bring her bouncey seat tomorrow to see if she likes that. Caleb got to visit twice (thanks Summer!) and fed Caroline. He is very confident with her and very, very careful. Sherri came to visit and took the laundry with her. Thanks Sherri! I am not able to get a lot of sleep (by the time we get done with our care routine it's almost time to start the next one) but it's worth it to get to be able to take care of Caroline myself. We are praying and hoping that the steroid helps her and we can go home sooner rather than later. It was nice to be together as a family again and to have friends to visit again.

6/29/2005

8:45 am: We had a decent night until 2am. At that point we had a 42 and weren't able to dial back. We are wondering why it seems to be working so well through the day and then we always seem to have a setback during the sleeping hours. Her setback at Central Baptist was during the night also. It seems kind of weird. She is doing great otherwise. She is eating well, and her sugars have been in the 70's or 80's with the occasional mid 50. We don't like 42. Lisa is exhausted. She hasn't really been able to sleep at all since we got into the room. We are going to get her to the house at some point during the day and have some uninterrupted sleep time.

9:00 am: Dr. Smith stopped in already this morning. He checked on Caroline's habits and Lisa informed him that Caroline is very sleepy at night and needs to really be coaxed to eat the proper amount. In addition to that he had noticed that before it is time for another hydrocortisone dose is when she seems to be dropping. We are going to try to change the dosage frequency from 3x per day to 4x per day. Hopefully that will help even out the swings.

11:00 am: We had a 75!!! Getting another dose of hydrocortisone now.

2:00 pm: Another good number. We have a 78 this time. We are down to 6.5 on the dextrose.

5:00 pm: BSL (Blood Sugar Level) at 64. Still rocking.

8:00 pm: BSL at 94. Caroline gets to dial down She is at 5.5 now.

9:00 pm: We had a nice day. Caroline was awake for a long time this afternoon and wanted to talk and play. Mommy and Caroline are getting to know each other and like being roommates! We really enjoyed our visit with Jan.

11:00 pm: We had a rough couple of hours. Caroline only got to eat 4 oz's which is the max on her diet. After that, she wanted more and made sure we knew about it. It took about 1 1/2 hours to calm her down after eating, and then she rested for about 45 minutes before having another huge fit. She is starting to make up for all that time when she didn't make any noise. Sounded like a real baby. Unfortunately we couldn't feed her. We called in the nurse and pleaded our case and she checked with the Dr. on call and he wouldn't change the orders. When we finally got our reading we were at 52. She needed to eat more and burned up a lot of sugar being angry.

6/30/2005

7:30 am: We had a decent night. Lisa sounds like she got a little sleep last night. She really worked hard at it anyway. Numbers were never below 59. It was still more difficult to get her to eat, but she is doing much better with her current regimen. We are currently at 5 ml/hour on the 12.5% dextrose. We wonder what the doctor will want to do with our care today.

10:00 am: Our room got crowded at 9 am! Mike arrived with breakfast, Dr. Bos arrived for a visit, Dr. Smith arrived to talk to us and he brought a couple of residents with him. Dr. Smith was pleased with Caroline's numbers through the night. Changing the steroid to more frequent doses was obviously the right call. Smart doc! IF she keeps her numbers at about the same today, she would be off the iv in 24 hours. Dr. Smith would want 24 hours of observation of stable numbers without the glucose and then we could GO HOME! We would try to wean off the steroids from home. Dr. Smith also gave us permission to top off Caroline's tank with a little extra milk if she throws any more fits like last night. Everyone was smiling! Please pray for us that this last leg goes well. It was at about this place where she crashed at Central Baptist but they were dropping her more aggressively and quickly and were trying to wean from steroids at the same time. Dr. Smith says one step at a time. So far, it seems to be working. It is very hard not to get really, really excited. We'll keep you posted.

9:30 pm: We haven't been having the best afternoon. We lost our IV after the last posting. Caroline has been in the forties a couple of times and hit 37 once. Our last reading was in the 90's. We are hoping it was because of losing the IV that she is having trouble leveling out. We are still at 4.5 and are hoping that we can move down at 11 pm.

Good news is that we have moved to a larger room. Lisa has a real bed instead of a hokey couch that pulls out. Hopefully that will help her sleep some tonight.

I will post some pictures when I get time. We had several visitors today and that has been helpful.

7/1/2005

8:45 am: It has been rough since our last post. BSL at 11 pm came in at 39. Caroline was cranky until 2:00 am and Lisa didn't get any rest. Her 2 am BSL was at 72. She didn't eat very much because she is sleepy during the night. When we got to the 5 am BSL, Caroline had dropped to 20. We needed to infuse her with a high level of dextrose for a short time and have come back to a 4.5 ml/hour rate at this time. Caroline is not behaving very well. We can't seem to get the rate below 5 ml/hour without getting crazy on our sugars. This is the level she started to have a lot of trouble with at Central Baptist Hospital. We are anxious to speak with Dr. Smith to see what he thinks the next step should be. She doesn't seem to be able to keep her BSL's up on just the cortisone.

9:45 am: We have just consulted with our physician and he is now consulting with Children's Hospital of Philadelphia (CHOP). We are disappointed and frustrated. We are going to try a new plan at this point. We are starting Caroline on diazoxide with a diuretic. This is more in line with the protocol that they use for persistent hypoglycemia due to insulinemia. He also said there is a blood test to help let us know if we are dealing with a problem in the pancreas that is either focal (one bad area) or diffuse (all over the pancreas). We are discouraged and it seems like we are going to be going through this process forever. We need a good day regarding the new medications to get Caroline to the point where we can get her off of the IV. Hopefully Caroline will respond to the new medication well.

4:00 pm: We started the new medication. Our first dose was at 2:00 pm. We got to take 3 different medications. We are continuing with the hydrocortisone as well but not until 5:00 for that next dose. At 2:00 we had the Phenol Barbitals, Diazoxide, and a diuretic. I feel like we need a degree from bartending school to keep everything mixed correctly. Lisa has been doing a great job and now that we are at the weekend, I will be able to help her and give her a little relief. Our 2:00 reading was a promising 63. We are hopeful for another good number at 5:00. Jan stopped by from the church with another outstanding prayer, so we are hoping that and the medications will do the trick.

7/2/2005

12:30 pm: I haven't updated in a while because I was trying to give Lisa a spell and we have been busy with visitors. Pictures will be posted soon. We have continued to maintain our same step. One good sugar followed by a bad sugar. Our lowest number overnight was a 24. We have gone almost 48 hours since we have had 2 good numbers in a row. We need that before we are able to dial her down any more. We finally got a 100 at 8am this morning and followed that with a 54 at 11 am. That was good enough to dial her back to 4.0 on the dextrose. Unfortunately, right after that, we blew our IV again. We are in the process right now of waiting for a new IV and the normal crew is not here now. We are waiting on the "hot" nurse that will be able to get in a good line. We hate the waiting, but resources are never enough. I will do my best to get another update early this afternoon.

2:30 pm: We think we got a PICC line in. We have been trying to do that since the first day in the NICU. Phongsun is the bomb. She thinks it is in deep enough. We are waiting on XRay to come here. It has been ordered stat, but it doesn't work like it does on ER or any of those other shows.

While they were doing the PICC line, Caroline needed to be sedated, and she is still groggy and cannot eat. She hasn't eaten since 11 am and hasn't had any dextrose going in. It is almost 2:45 and we are still needing our line to be hooked up again and waiting to wake up enough to eat. Our BSL was checked at 1:30 and it was 100, but she is so sensitive that we are scared while we wait for everything to get back on a routine.

Our doctor wants us to raise her to 5 on the dextrose drip until she is able to eat. I have requested that they check the BSL again soon to make sure she isn't dropping. If we can get through this without a big crash in the BSL's, I would be happily surprised. It will be awesome if the PICC line is in deep enough to be effective without needing to change her IV line every couple of days. That would be an answered prayer, but we hope it is not a necessary one and she can get her IV removed soon.

4:15 pm: We were able to get a good reading on the PICC line. After 3 weeks we finally have a stable line. While the line was out, we checked out BSL at 3 pm and our reading was 30. But Caroline had woken up and Dad was feeding her while they were getting the blood for the BSL. We checked again after we finished eating and our BSL was back over 100. We can get our sugar up pretty well. We just can't keep it up. Shortly after getting the lunch eaten, we were able to get hooked up to the IV again. They have decided to turn her dextrose drip up to 5 because she was off it for so long, but if she has a good reading at 5 pm we could be back down to 4. It was a very stressful day and we still seem to be going 1 step forward and 1 step backward, but the PICC line is so good to have. Here is hoping that she will control her sugars and not need it as long as it can be used.

9:00 pm: Our 5 pm number was pretty good. Caroline beat 50 so we were able to dial back 1/2 to 4.5. We are back to where we started the day and we have a PICC line in. All in all, a decent day so far. The 8 pm BSL was over 60 so now we are waiting for an acceptable number at 11 pm to see if we can finish the day ahead of where we started.

Caroline and Dad have been having a battle. Dad thinks he has figured out how to keep Caroline from getting him when we are changing diapers. Dad was feeling kind of cocky until Caroline adjusted and waited until she was on Dad's lap and blew right through her diaper and outfit to get her dad. There is no defense for that play.

We have been on the Diazoxide for awhile now and are anxious to see the next several BSL's. Keep praying for us.

9:15 pm: Caroline has been awake and alert since she ate at 8. We brought her gym from home and she really likes it. She has hit the ladybug several times! We weren't sure why she was interested only in the ladybug until we realized there is a mirror on the bottom of it. She was enjoying looking at herself. We had a really nice visit with Martha and Ted and they both got to hold her. Pictures were taken so I am sure Mike will be putting them on soon. Caroline seems to like this time of night and Mike wonders if it is because we always came to the NICU at this time of night because it was quiet. Mike has done most of the work today so that I can rest. The more rest I get, the more tired I feel. How does that make sense?

7/3/2005 (It's our anniversary)

10:00 am: We had good night. Lisa was able to get some more sleep and I was able to get a good amount of sleep as well. Caroline had her challenges yesterday with getting her PICC line in, but since we worked through that issue, we have had all acceptable numbers. Her lowest reading had been 50 and most of her numbers have been above 60 or 70. We had to dial our dextrose up to 5.0 after the IV line was turned back on, but since then we have had all acceptable numbers and are currently down to 3.0. We are now in uncharted territory. They are going to start teaching us how to use the one touch machine. On Tuesday we are going to have an appointment to select a glucometer to bring home with us once we reach that point. Our doctor was very encouraged by her numbers yesterday. We are trying really hard to not talk about how good Caroline is doing in front of her. Every time we discuss the "home" word, she slides backwards. We are hopeful with her progress, but guarded with our expectations.

12:30 pm: This is what happens when we start talking good about Caroline. She has to have a bad number. We had a 28 for our 11:00 check. We were really disappointed. It has been awhile since we started with the diazoxide. We hope that this BSL is just an anomaly. We have had lots of visitors from the Church stopping by. Sherri Ball, Anne and Claire Smith, Erin, and Sara Moon have all stopped by to offer their support. Look for a lot of pictures later today.

2:00 pm: Our 2pm BSL was 71. Trying to get back on track.

5:00 pm: We got a 54 on our BSL. Caroline's rate was reduces to 2.5.

8:00 pm: This time it was a 69. Still looking good except for the morning. Caroline has been really sleepy during the last couple of feedings. I think she is saving her energy to keep us awake all evening.

7/4/2005 (Independence Day)

7:30 am: Caroline is three weeks old today! We've had a disappointing evening and over night. Caroline's sugars have begun to yo yo again with one acceptable and the next low. We are still at 2.5. Doctor Smith says that we should give it at least a week to allow the diazoxide level to build. We have been doing a lot of reading about Caroline's condition and wondered if an increased dosage would be helpful but he said we started at the max dose so that's not an option. We will give this some more time unless we hit a place, like with the hydrocortisone, where we are making no forward progress. After that there is another drug to try but it is given by injection rather than orally.

To be honest, we are very tired and try not to be discouraged but it is getting harder. Caleb will be home from Western Ky today. We miss being with him and thank all of you for helping to take care of him. I've stopped praying that Caroline will not have to have surgery but am instead praying that she will get better no matter what is required. While you are praying for Caroline, please also remember two of our neighbors here. Allison has had 5 surgeries on her heart in the last three weeks (Allison's grandfather prayed with me in the NICU waiting room that very frightening day Caroline was transferred here) and John Andrew has infantile epilepsy and they are having great difficulty controlling his seizures.

9:30 am: Our latest number for the 8 am reading was 49. She missed her goal by 1.

5:00 pm: We have continued to have passing numbers. Not enough to dial down, but not low enough to worry. Our last several reading have been in the mid to upper 40's. Unfortunately, the 5pm number was at 33. We are eating now and getting ready to recheck after we have some food.

7/5/2005

5:00 pm: (Mike and I are both writing this) We have been having a very active day. Lots of developments. Last night was a very bad night. We continued in the evening having bad numbers and they just seemed to be trending down. We felt like each number was a body blow. We were hoping for a better result and when each number came down, it was difficult to take. We were both very emotional all day and we were worn out by the end of the day and had a long night ahead of us.. During the night we fell all the way to a 16 for the BSL. Lisa and I were very upset.

By the morning we were still having problems with controlling our sugars. Dr. Smith came in this morning and was not able to make us feel more encouraged about her reaction to the diazoxide. We all agreed that this wasn't working. We decided that it was time to start using octreotide and see if there was success with that drug. While we were waiting for all of those orders to be changed, we were able to meet the other endocrinologist, Dr. Lamanik (sorry, but I think I am spelling that very wrong). He is going to coordinate with CHOP (Children's Hospital of Philadelphia). He said after further research into the octreotide, he and Dr. Smith did not feel it would help Caroline. We all decided he would contact CHOP and ask for guidance about any other treatment options but we all felt a transfer to CHOP for surgery was coming.

He ordered her glucose drip raised to 10 to keep her stable which was an enormous relief to us. The 16 number during the night was very frightening. We didn't want to risk seizures again. So we began mentally preparing ourselves for a transfer to Philadelphia and surgery for Caroline. After we got our heads around it, we felt better about it. If Caroline has a focal problem, only one small area of her pancreas, her prognosis would be very good for a full recovery with no further medical care needed, including medications. If Caroline has a diffuse problem, the entire pancreas would be removed and she would essentially be diabetic and would need insulin injections. Obviously, we are praying for focal.

Just as soon as we started making mental plans for surgery in Philadelphia, Dr. Laminik called and said after speaking with CHOP, they have experienced more success with the octreotide than we thought. They have had a 50-50 success rate with octreotide in infants who did not respond to the diaxozide. We are starting the octreotide at 6 pm tonight. This is given by injection three times a day but to save Caroline being "stuck" over and over again, she is getting a port in her right thigh that they can put it through. We are NOT getting our hopes up but we should know by Friday or possibly Monday if it is working. We are really still expecting surgery but we will give this a try. By the time we know if it is working, Caroline will be one month old!

On our first visit to UK's NICU I saw a birthday card on one of the baby's cribs that said Happy One Month Birthday. I remember thinking how awful that he had been there a month. Our church family is having a prayer service for Caroline at 12:30 on Wednesday. Please, if you are able, lift Caroline up in prayer at that time wherever you are. Caleb is home from Western Ky where he had a grand time at the "cabin" and visiting his great-grandmother, aunt, uncle and cousins in Fulton and is enjoying a sleepover at the Parson's tonight. We expect Jerry and Carol sometime tomorrow.

Caleb starts an All Star tourney on Friday and is very excited to get a jersey with his name on the back. At some point, Caleb will likely go to Minnesota with Jerry and Carol so that he can enjoy his cousins! He had such a good time last year. Becky is keeping the store running, thank you Becky! Thank you everyone for your prayers, your phone calls, cards, emails, visits, food, everything you have done to care for us. You have all been so generous with us. I feel infinitely blessed to know you all. And FYI, if you ever need a peach pie, you should ask Sara Moon to bake it. Wow!!!!

7/7/2005

4:00 pm: We have been on the ocreotide now for a couple of days. The initial dosage was at the low end. It did work initially, but it quickly failed. Last night we had a 31, and later we had a number in the 50's. Dr. Lomanick considers it a failure to fall below 60. We have upped Carolines drip rate and continued with the Octreotide treatment. When he visited this morning, Dr. Lomanick upped the dosage. However, we are not trying to dial back on the dextrose until it has had some time to work. He will be visiting this afternoon to change the orders and see if we can have success at the higher dosage. None of us believe this will be successful, but we need to try it before we look at a surgical option.

Granny and Grampy have been a big help. We are getting things in order back at the house. We are trying to get cars ready for a trip to Philadelphia. We are happy that Caleb gets the chance to wake up in his own bed again for the first time in a while. Caleb is going to a Lexington Legends minor league baseball game tonight with the Browns to help celebrate Sheldon's 6th birthday. He is booked solid with all-star baseball games in the near term, and will most likely be heading to Minnesota to visit with his cousins when Lisa and I need to go to Philadelphia. I hope we don't have to stay there so long that he learns how to talk funny. I am getting back to getting some work done and we are getting a routine that helps us get more sleep. Thanks for the prayers and support. We love everyone that has been so helpful to us.

10:00 pm: We were getting ready to start our next attempt to dial the dextrose down and on our first check we failed by getting a 50. We now have to wait to talk to the doctor tomorrow. We may be going to Philadelphia as early as Monday if that is what makes sense. We are pretty much resigned to the fact that it will take surgery to get Caroline able to manage her blood sugars.

7/8/2005

3:30 pm: We are waiting to hear back from CHOP. Dr. Lomanick has a call in saying that we need to go there, but he hasn't heard back yet. They have worked out everything at UK to make the transfer smooth. We still need to arrange transportation for Caroline and have a Dr. to transfer Caroline's care to. We are playing a waiting game to see what the next step is.

9:15 pm: We have heard from CHOP. They will accept us as a surgical candidate. However, they need to duplicate some administrative paperwork and confirm that our Insurance policy will cover her. We will most likely not be able to go to CHOP until Wednesday. We are just trying to maintain good numbers until then. We have stopped the Diazoxide and the Diuretic. We are calling neurology to see if we can stop the Phenol Barbital. We are in the process of stopping the hydrocortisone as well. We will be down to the IV dextrose drip and the Octreotide to maintain until we get to CHOP.

7/9/2005

10:15 am: We had another night of lows. Noting dangerous, but not at passing levels either. We would rather see 60's and 70's than 40's and 50's. We are going to start the diazoxide and diuretic again. We anticipate having labs drawn tomorrow morning for the genetic testing. Caleb's all-star team won their game last night 11-3 and news is Caleb had a great game playing 1st base the whole time. Both Grampy and Grandaddy were talking about how much fun the other one had and how proud the other one was. I heard a lot about Caleb possibly getting a big head, but I think it is the grand parents that are having the most difficulty keeping the buttons from popping off of their chests.

10:00 pm: Numbers have been decent since we started the diazoxide again. We have been able to keep above 60 even if just barely. The combination of the diazoxide, octreotide and dextrose drip seem to be able to keep her in stable condition. We are in a routine and waiting for the week to start again. We will be having blood drawn tomorrow for the genetic testing. We are still waiting to hear back from CHOP. We assume we won't hear anything until Monday. Caleb is playing well on his all star team. They had a tough game this morning against the team from West Virginia. There was one bad inning and they scored six runs. But our team fought back and lost by one run in the end. Our game tonight against Harrodsburg looked much sharper and we won 16-6. Caleb had a big hit and did a great job at 1st base. He and his teammate from the Astros both got a game ball.

7/11/2005

11:00 am: Just a short note this morning. I need to get some work done today. Dr. Bosomworth is back with us. She was on vacation in Canada. It was good to see her again. Caroline has had numbers all above 80 since we changed her cocktail yesterday about noon. We drew blood from Lisa, Caroline and myself this morning. We have visited with Dr. Lomanick. We are waiting on a consult from neurology to see if we can stop the phenol barbital. Caroline has a rash, and we think it is an allergic reaction to the phenol barbital. She doesn't really need it, but the staff here is trying to be careful about weaning her off. Granny is going to babysit today and I am working. Lisa is going to find some new clothes for Caroline to go to Philadelphia with (bigger) and return some of the clothes that she is too big for. Mary Katherine and LeighAnn will be helping Lisa.

7:30 pm: We have a plan now. We have talked with Lauren who is the nurse practitioner at CHOP. We know what the plan is now. I am going to try to summarize for everyone.

1. We fly to CHOP on Thursday.

2. They monitor Caroline for 24 hours.

3. They will perform a fasting study to verify that Caroline wasn't miraculously cured on the flight to Philadelphia.

4. They will wean her off of her medications over the weekend.

5. On Monday (now changed to Wednesday) Caroline will have a PET scan. Results of this will tell us if Caroline has a focal or diffuse issue.

6. On Friday, Caroline will have surgery.

7. Recovery time for Caroline if everything goes perfect will be 2 weeks.

Our earliest time to return home will be on August the 3rd. That may not be a realistic date, but it would be if everything is perfect from start to finish. We are not used to things going perfect. But you never know.

7/13/2005

6:00 pm: Caroline turned 1 month old today. Caleb and Granny and Grampy planned a birthday party for Caroline and Lisa. Lisa will likely be in Philadelphia during her birthday and Caleb wanted a chance to celebrate it with his Mom. Lisa got a red rose and Caroline got a pink carnation. Caleb was very sweet. Caroline had a low number last night. She got down in the 30's again. We have increased her dextrose drip to the max she should have of the 12.5% solution. If we have any further troubles, we will need to use 15%.

Lisa and Caroline are traveling on the air ambulance tomorrow to Philadelphia. I am going to try to beat them there by flying commercially. We are very nervous about the transport, but we know this is the best thing for Caroline. We are hopeful about our next stop on this journey to helping Caroline find a way to control her sugars.

AS WE GET READY TO TRAVEL TO ANOTHER CITY, I NEEDED TO SAY A HEART FELT THANK YOU TO EVERYONE IN OUR LEXINGTON FAMILY. YOU DON'T KNOW HOW MUCH YOU KINDNESS HAS MEANT TO OUR FAMILY.

Another thank you to Evan and the Floods for taking care of our house while we are away.

10:30 pm: Dear Family (I consider you all family now....the care you have shown us the last month could only come from family), What a month we have had! When Caroline was admitted to NICU at Central Baptist and they told us it might take a week or so for her to straighten her sugars out it sounded like an eternity to me to wait to bring her home. And now here we are one month later and headed to a third hospital. We would not have been able to stand it, had it not been for your many kindnesses and I am not sure how we will ever be able to thank you for all that you have done for us.

Tomorrow morning will feel very strange, I am sure. Caleb and Granny leave early in the morning on a flight to Minnesota, Jerry will drop Mike off at the airport in Louisville for his flight to Philadelphia and then continue on his way home by car and Caroline and I will wait for the CHOP transport team to pick us up at UK. I am trying not to be too apprehensive about tomorrow and I know that your prayers are helping enormously. Please keep them coming. Please remember Caleb in your prayers as well. He has been such a sweet boy through all of this and has never complained. He could not get enough of holding Caroline tonight saying that it would be two weeks before he could see her again. I am so grateful that he can go with Granny and Grampy and have fun with his cousins, aunts and uncles but I hate it that we have to be apart. I pray every day that he will not have to start school without all of us home.

Caleb has an angel pin he was given at Nana Pat's service. Grampy took him shopping today and he found two more angel pins, one for me and one for Caroline. Mine has my birth stone and "diamonds". He was VERY proud and wants us to wear them every day while we are separated. My suitcase is bulging with all the sweet little clothes you have showered on Caroline. The nurses here say she is the best dressed baby they have ever had. Caleb also asked to take with him a few of the photos Granny Dani took the first few days of Caroline's life....we told him to pick the ones he wanted and when all was said and done, he decided he had to take them all. It was very hard to say good bye to Caleb and Granny and Grampy tonight.

We know now that Caroline's pet scan will be on Wednesday and her surgery on Friday. We hope we can keep the web site updated. The hospital does not have wireless but there surely will be a Starbuck's nearby. Caroline with be in the NICU so we will not be able to stay with her, as we have done here. Mike says he is so grateful for our time on the "floor" here because it gave us an opportunity to get to know Caroline. She is a sweet baby, very cuddly and loves to be held. Her hair has gotten very blonde and very long in back. We are so anxious to bring her home so that she can properly meet all of you! We love you and we thank you with all our hearts. Lisa

7/14/2005 (Arrival at CHOP)

10:30 pm: Michael left UK about 8:30 to make his way to Louisville and the airport. The transport team picked Lisa and Caroline up about 10:30. Caroline was low when the CHOP nurse checked her prior to leaving the room so they waited for me to feed her before we left. Grandaddy, Carla, Sherri and Dr. Bos were there to see us off and went with us all the way to the ambulance. Caroline was in a car seat that was strapped to a gurney. At the airport we boarded a Lear jet for the flight to Philly. It was a very smooth flight with just a few bumps at the end and Caroline was apparently unimpressed as she slept the whole way.

Once we landed a CHOP ambulance brought us to the hospital and whisked us to NICU where they were waiting for us. I stayed with Caroline for her admission....weighing, measuring, examining and lots of questions for Lisa. Most impressive was that within one hour I had met the Charge Nurse, Nurse Manager, two endocrine docs and the attending neonatologist. After they got Caroline settled and I fed her, I snuck outside the NICU doors to call Mike. His train was just getting in to the station so he could not talk long. He was going straight to Ronald McDonald house to get us registered and drop off his luggage and then would meet me at the hospital.

I was talking to JD on the phone, said something about Caroline and a woman who was walking past stopped and asked "Are you Mrs. Maas?" She was the nurse practitioner we have been talking with over the phone and said when she heard a Southern accent and the name Caroline she was sure it must be me. She told me she was coming to see me and Caroline and that Dr. Stanley, the top dog, was meeting us also. I was really blown away to meet the entire team so quickly upon our arrival.

The NICU nurses are awesome and of course, think Caroline is the cutest baby ever. It is so comforting that they know exactly how Caroline's condition works and what to do and what not to do and when to do it! Because Caroline missed a dose of Octreotide and got off her eating schedule, her sugars were bouncing all over the place (they check her every hour for the time being) and I was really glad she was in the the NICU with a nurse all to her self (for now). There is a small family lounge inside the NICU (where you can use your cell phone) and there is a large family center outside the NICU with computers, tv and rooms where you can grab a nap!

Mike got to the NICU in time to feed Caroline and then we grabbed a sandwich and walked to RM House to drop off my suitcase and pick up clothes for Caroline. We caught the shuttle and were in time to feed Caroline again and kiss her good night. The nurse promised to give her a good bath and change her clothes IF we would go home and get some sleep. The RM House is beautiful....a restored mansion that is like a mini Biltmore. We have a large room. There is a huge kitchen, a patio with grills, a beautiful garden and lots of common rooms for relaxing. Everyone has gone out of their way to make us comfortable.

Mike and I just walked home (about 10 minutes) and are getting unpacked and settled in for the evening. We have an appointment to meet with Caroline's team at 9 am. They plan to do the fasting study tomorrow (they will take her off the glucose and monitor her sugars very closely to see how quickly she drops and take their own labs while she is low. Then they will give her glucagon to get her sugars back up and montior her response to that.) Thank you for all the prayers! They helped! I won't say it wasn't stressful but it was much better than I had feared. RM House has wireless in the common rooms so I think we will be able to keep the web site updated as time permits. I took pictures of the transport and I am sure Mike will try to get them on here tomorrow. At this point, we still expect the Pet Scan on Wed and surgery on Friday but they have warned us the Pet Scan can be tricky and try to remain flexible....there is a potential for delay. I love you all! Feel good that we are in the best place to get help for Caroline.

7/15/2005

4:30 pm: It's amazing what a good nights sleep can do for you! Someone asked if the bed was comfortable. Select Comfort donates Sleep Number beds to RM Houses...it was very comfortable! I think we got about 7 hours in....maybe a little less for me as I was up once to pump. Our room is so large that I have a very comfortable "pumping station" with all the supplies set out, the pump plugged in and ready to go and a big cushy easy chair to sit in. It's a far cry from perching on the toilet in the bathroom at UK.

CHOP docs and nurses are very supportive of breast feeding so now, instead of feeding Caroline a minimum by bottle and then trying to nurse, we nurse Caroline until she quits and then feed her by bottle. They have a good scale and we weigh her first, then nurse, then weigh her again and it will tell you how much milk she got while nursing. Caroline is supposed to have a minimum of 60 ccs. The first time we nursed she had taken 16 ccs before she quit so we have some work to do. She did take the rest by bottle.

The next time we tried Mike and I used the scale without the help of the nurse and we did something wrong so it didn't work. We'll try again later. The baby next to Caroline had a crisis and it was very hectic and very scary so after we fed her we decided it was a good time for a break and return to RM House. (By the way, this is the original or first RM House. I didn't know that!)

We met with the nurse practitioner this morning and she reviewed every aspect of HI (Hyperinsulinism) with us...they even have color handouts! We have homework to read tonight. We ran out of time so we met with her again this afternoon to talk more specifically about surgery and recovery. Caroline will have a cat scan on Tuesday. It provides an overlay for the pet scan. The pet scan will be on Wednesday. They will know by 10 am if they were able to produce the floradopa. If they are able then we will walk with Caroline through an underground tunnel to the adult hospital for the scan. She will receive general anesthesia and the scan will take 2-3 hours. We won't have the results until very late in the day or the next morning. As long as they are able to do the pet scan she will be able to have the surgery on Friday.

It became even more clear to us after talking with the NP that the best outcome for Caroline would be a focal lesion in a part of the pancreas other than the head. Please, please focus your prayers on a safe surgery for her and for a focal lesion in the body or tail of the pancreas. Of 37 babies with a focal lesion, 31 were "cured", 6 required medical therapy. Of 20 babies that were diffuse, 3 were cured or controlled, 15 required medical therapy and 2 died from other complications.

They keep saying that if Caroline is diffuse she might need a feeding tube in her stomach for safety reasons (if she were low so we could feed her quickly OR to get her through the night without having to wake her to feed her.) I asked Laura exactly what the tube would look like and what it would entail. She said she would show me a baby with a tube on Monday. Please pray for me on that too....that seems very scary to me. I know I shouldn't be greedy but I just can't help but hope for focal/cured. Cured or controlled is defined by being able to go 12 hours without eating with acceptable blood sugar levels and without meds. Carol D. left me a message that she would give blood for Caroline's surgery. Mike has that blood type that is a universal donor so he is going in the morning to give his blood. Caroline really does like her Daddy to get stuck! We also are going to give more blood for a research protocol here at CHOP.

This morning they began lowering Caroline's iv glucose for the fasting study. What a little puss she is! As soon as we want her to go low she stubbornly maintains high blood sugars. They are now dropping her by 3 every hour so we guess by the time we get back for her dinner she will have gone low enough for them to take their labs and give her the glucagon. That's about it! I expect we won't update until tomorrow. Love to you all!

11:00 pm: We went back to the hospital at 8:30 tonight to feed Caroline and say good night. We fully expected she would have gone low at 6 or 7 pm (having been off the iv for an hour or so) but as always, Caroline never behaves as expected. When we left at 10 pm she was still maintaining her sugars having been off the iv for 4 hours. She is still getting the octreotide but remember, at UK, she went low many times a day while on it AND the glucose iv. We still expect her to go low, perhaps late in the night but it's a mystery why she is behaving so differently than she did at UK. She did nurse for a few minutes but only took 10 ccs and had to finish with a bottle. We need to be at the hospital early so Mike can get the paperwork for his blood donation.

The nurses had put Caroline in the watermelon outfit from Auntie Carla and once again, a nurse said she was the best dressed baby in the NICU (and they have only seen two outfits). We only change her clothes once a day now to help prevent any infection in her PIC line which would delay us from coming home. The NP told us that they have been wanting to make a video about HI to send to other hospitals to help doctors and families understand the condition better. Laura asked if we would be their video family and we agreed so as Boopie said, Caroline is going to be a movie star. They want to film Caroline's procedures and surgery and interview us on film about our experience.

We were comforted by something Mike witnessed when the baby next to Caroline was in crisis (I was sitting with my back to the commotion around his bed). It was a very intense situation with at least 20 or so doctors and nurses around his bed. Caroline's nurse went to the foot of his bed, bowed her head and clasped her hands and prayed for him for some time. He came back to the NICU while we were visiting tonight so I hope he is doing better. You cannot ask about other babies but I am sure his mother would appreciate prayers for him as well, I think his name is Daniel.

We are home again and looking forward to another good night's sleep. I know that we will never be able to pass by another donation box for Ronald McDonald House ever again without emptying our pockets, having been so graciously taken in here! We love you all and will keep you posted as we are able. (Be sure to scroll up to see the transport photos and photos of Caleb, Caroline and Katie Kunze that Mike added above. Katie gave Caroline one of her own baby dresses the night before we left UK!)

7/16/2005

8:30 pm: Caroline was stubborn about giving us a low blood sugar until 3:00 am last night. We couldn't believe she went so long without a dextrose drip before she dipped low enough to get the labs that were needed. They were able to get the labs, but then Caroline continued to have good blood sugars after the labs were drawn without a dextrose drip. The only medication she was receiving was the Octreotide and she continued to have good numbers until 6:00 pm this evening. Caroline was off the dextrose drip for exactly 24 hours before she crashed the second time. They have now added the dextrose drip back at 8.0 ml/hour of the D15. It seems like she wants to always be mysterious. Whatever we think she is going to do, she does the opposite.

Caroline will have a fairly low key day tomorrow. We are back in maintain a good BSL mode for her and we are now fully expecting her to start yo-yo'ing around. I assume she will do that because now we want her to be stable.

David, Heather and Big Dave stopped by today and we had a nice visit. They were able to see little (big) Caroline and were nice enough to bring some supplies. With the extension cords and water we now have enough electricity and enough to drink.

We are turning in to bed early tonight. We hope to have a good night sleep and get started again tomorrow.

7/17/2005

10:30 pm: Happy Birthday Mommy!

Caroline is 5 weeks old tomorrow and Im not telling how old I am today. We went to the hospital early to feed and visit with Caroline. She had gone low again in the night and her drip rate was up to 18 but we expected that so it was not alarming. The nurses suggested we leave and go for brunch at the White Dog Caf but they could not agree upon which street it was on or even which direction to go.so we went wandering and found it by accident. It was great food and a very nice atmosphere and we enjoyed it a lot. They had four bathrooms.one for pointers, one for setters and one for Republicans and one for Democrats! Ha! We went back to the hospital for lunch and I did her sugar check for the first time. Well, I stuck her heel and Maron, the nurse, did everything else. Caroline was sleepy and we needed to do laundry so we came back to RMH and played arcade games in the Teen Center while the laundry was in. I am not very good at Ms. PacMan and Mike is far too competitive!

I was talking to another guest here this morning. She is here to take classes on caring for her grandson who she is finally going to get take home. He is one year, 4 months old and has been here since birth. She got a pinched nerve as soon as she arrived here and can hardly walk and is in great pain and was trying to get a wheelchair so she could make it to the classes. She went to the emergency room and they told her to stay off her feet but she cant really do that. I cant imagine waiting that long to take a baby home and then get sick yourself. Please pray for her, I forgot to ask her grandsons name, she kept calling him the baby. And I met another grandma in the kitchen who would appreciate prayers for her week old granddaughter, Dana, who is having heart surgery.

We went back the hospital for dinner time and this time I did her heel stick from start to finish. The hardest part is finding a place to do it because they check her every hour. Her little heels are just raw. We think tomorrow we will have the cat scan but it might be on Tuesday.

We had a great time yesterday with my sister Heather, her husband Dave and my brother David. Everyone got to visit with Caroline and we had a really nice lunch together and then hauled all the supplies they brought to us (and fun presents too!) back to RM House and then back to the hospital for more visiting.

We talked to Caleb on the phone. He went camping with his cousins this weekend. He told me he went white water rafting and nearly drowned but his cousin Ricky saved him. Im not sure what that was all about and the less I know likely the better it is. He is going to a Twins game with Grampy and tennis camp with his cousin next week. The week after that he is going to VBS with his cousin. He sounds like he is having a wonderful time.

There was a special blessing at church today for Larry and our friends Carol and Julie who are coming to see us this week. Thank you, Jan, so much for arranging that! It means a great deal to us. We are looking forward to seeing friends and family next week.

We love you all.

7/18/2005

6:00 pm: Another day of waiting. Caroline is holding her own, waiting for the cat scan that we now assume will be tomorrow (we waited for it today but it never happened), her petscan on Wed and her surgery on Friday. I ran into an endocrine attending in the elevator and he told me another HI baby is coming from Hawaii. I asked how old the baby is and he said about the same age as Caroline but their insurance would not initially allow the baby to come to CHOP so this baby has all ready had one surgery in Hawaii. It reminded me to be thankful for the blessing that our insurance company did not try to make us go to Cincinnatti. We hope to meet the other family when they arrive.

Mike and I have found a haven in the Connelly Family Center on the 8th floor. It is a quiet, comfortable lounge, library, kitchen and laundry area. Mike was able to put in what he said he felt was a full day's work but be close enough to come regularly to the 2nd floor to visit Caroline. I found several books to read and alternated my time today between sitting with Caroline in the NICU and sitting quietly in "Connelly" as everyone calls it here. And we were able to do Caroline's laundry while we were there. The lactation consultant came to help me try to nurse Caroline but despite all her tricks we didn't have much luck. We'll keep trying but it is discouraging, I have to admit. Caroline will need to be sedated for the cat scan but we don't anticipate any problems with that. We miss you all but everyone here has been very kind and we are thankful for that. Hugs and kisses from Caroline!!!

7/20/2005

6:00 pm: I'm sorry about the lack of updates. We thought they were posting ok but found out they were not. Our friends, Carol and Julie arrived this morning. We all visited with Caroline then "met" with our Lexington friends at Mom's Group via two speaker phones! At 11 we walked with Caroline to the adult hospital for her pet scan. Caroline had general anesthesia and a breathing tube. It was possible that she might have to keep the breathing tube after the pet scan but we were hoping she would not not have to have that. They also said she might be hoarse. The pet scan lasted several hours so we had lunch and then went back the NICU to wait. Caroline came back awake and without a breathing tube. She seemed to be hungry so we tried to feed her but she got sick right away. We decided that it would be best to let her sleep to recover.

Carol and Julie took us to a wonderful grocery store for some supplies and we are going to go to dinner and then back to the hospital. We called to see if they had results of the pet scan. Laura said nothing stood out (which we were hoping for) but that it was too early to determine focal or diffuse. I am disappointed. We should know something tomorrow. Please pray for focal. It seems less likely now.

7/21/2005

10:45 pm: It's been a long day! We received news around lunch time that Caroline does have a diffuse diagnosis. Julie and Carol had foregone a planned day of sightseeing to wait on the results with us and then did not feel like going sightseeing. They got lunch for us and sat in a very small room the entire day to be with us when we were not with Caroline. Caroline has her surgery tomorrow at 11. If you are able to pray for Caroline at 11 or anytime during the day we would be very grateful. We expect the surgery to last between 3 and 8 hours long.

When Caroline comes out of surgery she will have an epidural for pain control. She may also have other pain medications through an iv. She will have a g tube (in her stomach) that will allow emergency infusions of dextrose, if necessary. It will be at least 5 days before she is able to eat again. She will receive nutrients through an iv. Once Caroline is able to tolerate feeds, she will be gradually worked up to normal feed amounts over three days (1/3, 2/3 and finally full feeds).

Once Caroline is able to have full feeds for a couple of days they will do another fasting study to see if she able to maintain normal blood sugar levels. It is unlikely that Caroline will be able to do that without some sort of medicine for support. If her sugars are low they will try octreotide. If her sugars are high they will try insulin. After that, it will be a process of trial and error to find the right combination. If Caroline remains low and cannot maintain blood sugar levels with octreotide she will have to have a second surgery. We ask for prayers that Caroline will not have to have two surgeries. It would be a miracle if she did not require any meds but while you are praying, what can it hurt to pray for miracle?

Julie and Carol have been of enormous and immeasurable support to both Mike and me. JD and Dani arrived in the early afternoon and Larry and Lisa arrived in the late evening. We all had dinner together. Heather and David will come tomorrow night after they finish work. Jerry and Carol remain in MN taking outstanding care of Caleb. We met the new family from Hawaii and would ask for your prayers for them. They have had a long and heartbreaking road to reach CHOP. Their daughter, Annika, has had two surgeries in Hawaii. Insurance issues kept them from coming to CHOP immediately. Unfortunately, Annika had 98% of her HEALTHY pancreas removed in Hawaii leaving only 2% but that 2% contains her focal lesion.

Her parents, Duc and Amy, are so proud of Annika and we felt connected with them immediately. Annika has the same chubby cheeks as Caroline. She is precious with dark head of hair. She has been through so much in her short life and must have a tremendous will to have weathered it so well, same for her parents. They will have a petscan on Monday and surgery on Thursday. They have been on the same rollercoaster ride we have been on.....time and time again thinking Annika's sugar issues would stabilize and they could go home. Annika is about 2 weeks older than Caroline.

We have great confidence in Caroline's surgeon, Dr. Adzick, who we met today. Please pray for him and his skilled hands to help Caroline and Annika. They will be filming Caroline's surgery and us in the waiting room. Dr. Adzick said the dvd will be distributed to children's hospitals, pediatric endocrines and families of HI babies. There is no way we will be able to make it home before Caleb's school starts but we hope we will be home shortly after the school year begins. Caleb is hanging in there and apparently is doing great in his tennis lessons. We love you all and thank you again for your cards, phone calls, messages, emails and prayers.

7/22/2004 (Day of Surgery)

10:00 pm: Praise God!!! I asked you to pray for a miracle....and you did....a lot of people have been praying for a miracle. God listened. We were surprised and ELATED to learn that Caroline had a focal lesion in the tail of her pancreas. The PET scan showed something in the tail that needed to be explored, and when our surgeon looked at the tail, he could see and feel the bad area. He was able to remove it and get a good cross section to verify that there were no tentacles leading out from the focal area. Once again, the PET scan was successful in showing the affected area, but it was mis-interpreted by the team as they continue to learn from this amazing technology. I'm not sure it was even really misinterpreted because they did see it on the pet scan and mentioned it and obviously checked it first, but they really did not hold hope that it was a focal lesion.

Caroline want into surgery today at 1:30 pm. We heard at 2 that Caroline had no trouble going under the general anesthesia and that the epidural had been placed. We then received an update from the nurse at 3 pm. When she came out for that update, we learned that they had gotten out some biopsies to be read by pathology and that Caroline was doing well. I (Mike) decided to walk down to NICU and give a report to the nurses and visit with the other family that was in with the HI baby. While I was walking past the OR area, I saw the nurse coordinator Susan with the film crew in the hallway. I inquired how things were going inside. She said that Dr. Adzik would be coming out soon with an update. Dr. Adzik called us (Mike and Lisa) out to a separate room from the OR waiting room, and explained that he had extraordinary news....extraordinarily good news!

He said there was a focal lesion in the tail of the pancreas. He was able to successfully remove it and verify that there were no tentacles going out from the focal area. Because it was in the tail of the pancreas, he didn't have to remove more than 5% of her pancreas and it wasn't in an area that was tricky because it didn't attach to anything else. The head and the body of the pancreas are much trickier than the tail and also the LEAST likely place for the lesion to be. And Caroline's was in the very tip of the end of the tail.....amazing! Maybe it was diffuse at some point....maybe you all just prayed and prayed and prayed away all but that little piece in the tail. Dr Adzik felt confident that they were able to find the source of the problem and the biopsies from the rest of her pancreas showed normal beta cells. He felt her prognosis for a full recovery/cure were excellent. We couldn't have hoped for a better result. He said it was the best possible outcome for the surgery.

When Dr. Adzik was leaving and offered to shake my hand, I had to give him a big bear hug. I don't think he minded, but if he did, I can only say he is lucky I didn't kiss him on the lips. I thought of that before I restrained myself. Lisa and I are so relieved. We feel like we are floating on air and have huge smiles across our face. We celebrated over dinner with our family and friends and went back to the hospital to say goodnight to Caroline. She was feeling like you would expect her to after a major surgery, but before we left they had upped her medication and she seemed to be doing better. She was definitely in some pain and it was difficult to see but we have full confidence in the staff to keep her as pain free as possible while still being safe.

I'm afraid we completely disrupted the OR waiting room when we told everyone else and when we reentered the NICU we made quite a commotion with lots of hugs and smiles and cheers from the nurses and the doctors gathered there. The film crew was also smiling ear to ear and by the way, it is completely possible to forget they are there! Only once was I jarred by their presence...when we got on the elevator to go to surgery from the 2nd floor (with them filming as the doors closed) and when the doors opened on the 4th floor there they were...apparently having run up the stairs to beat us. Dani had told us before we spoke to Dr. Adzik that the film crew had come out of the OR and said the surgery was over but we had told her we were sure she was mistaken because they had just done the first biopsy and usually they have to do many before they confirm the diagnosis...and that's all before the actual removal of the pancreas begins.

Mike said that he had decided that despite Caroline's diagnosis of diffuse that God had answered our prayers in the form of so many people to love us and support us and help us. We were looking forward to bringing Caroline home, no matter what the circumstances....and we were able to look forward to that because of the love and support you have showered on us.

Thank you all for your prayers and thoughts. Thank you all for your help. Thank God for helping us all through this. Thank the fabulous treatment we have received all along the way. Thank God for the hyperinsulinism center at CHOP which wouldn't have existed had we had these challenges with Caleb.

We were told they now think that some SIDS deaths are HI babies who begin sleeping through the night and have extremely low sugars for the first time. We can't wait to get home to personally thank Barbara (the nurse at Central Baptist who stopped Caroline from going home) for getting us started along the path to what we expect will be a full recovery and a blessed life for a special baby that doesn't know how many people already care for her.

7/23/2005

11:00 pm: We had another good day today. Caroline was seen by the attending endocrinologist, the chief of surgery that performed her operation, and several other doctors. Everyone was very pleased with her progress. The attending endocrinologist said her BSL's were ideal and called Caroline "Groovy". The surgeon, Dr. Adzik, was thrilled as well. The only problem we had today was managing the pain. Caroline's epidural didn't work, and she didn't respond to the morphine. However, they found another drug that worked very well on her and she was comfortable most of the day.

Now we are in the NICU until Caroline can eat on her own. The normal time to be able to eat on her own would be 7-10 days. However, Caroline's drainage from her NG tube is less than expected and has already changed colors from green to yellow. We are waiting for Caroline's drainage to change in color from green to yellow to clear and for her to poop. After that we can start feeding and bring her up to a normal feeding schedule within 3 days. We are hopeful that Caroline will be able to beat their schedule. She is now on the drip that includes proteins, lipids, amino acids and dextrose. She has a good amount of dextrose going in, but it isn't more than they give a normal baby recovering from surgery. Her GIR is 8.5 for the dextrose. She will be on that until she can eat on her own.

We are looking forward to another good day tomorrow. We are still worried as babies often have good numbers for a couple of days after surgery due to the stress of the surgery and then they crash. We aren't letting our guard down until we cross that hurdle. We don't expect a bump along the way but want to be prepared if it does happen. If everything goes well tomorrow, Caroline will have little pain and good sugar numbers. Keep praying.

7/25/2005

6:00 pm: We had another boring day in the NICU. Caroline's numbers were in the perfect range. Her range for the day was between the high 70's to the low 100's. They want her numbers between 70 and 110. We get nervous when the numbers get close to 70, but the endocrinologists were not disturbed at all. We met another attending endocrinologist this morning. He said he wanted to meet the famous Caroline. He also wanted us to recount everything, down to the last detail, that had happened from the day of the PET scan to getting the good news after the surgery. He wanted to get a sense of the drama of the day and it was evident that he was excited with us and was so glad it was all captured on film.

Lisa was worried because Caroline had a 70 something and pointed it out to Laura, the NP, who said "Will you stop???? That is normal!" Then Lisa pointed out that Caroline was still on an iv with glucose and again "Will you stop???? That's normal too!" We are having a hard time understanding what is normal...we had the abnormal thing down cold! Caroline loves her crib soother with the bluebirds. She kicked and waved her arms, smiled and seemed fascinated by it. We hope maybe to get to feed her tomorrow. She doesn't have the nasal gastric tube anymore and the iv in her hand is gone. She still has a pik line in her hand and a back up iv in her foot.

Mike and I are scheduled to take our classes tomorrow.....how to use the glucometer, how to give an injection of glucagon (for emergencies) and baby CPR. They had to trim a little of her hair for the scalp iv (that she no longer has) but had saved it for us and put it on a little card labeled Caroline's first hair cut and the date. She does have a little bald spot there now! I think her blonde hair is getting a little darker in the front but still very blonde in the back. Oh, and she was out of the hospital gown and back in to clothes today.

Everyone continues to say how lucky we were that Caroline didn't go home. Everyone marvels with the fact that Caroline didn't need more of her pancreas removed. Even with a focal issue, it is extraordinary to have so little removed. We still cannot believe how the lord has watched over us the entire time. From the prayer and care of our friends and family, to the miracle during the surgery. Lisa and I truly believe that the lord has been so very kind to us.

We don't quite feel out of the woods yet. We have been so close so many times that we cannot let our guard down completely. We will not be able to feel completely easy about Caroline until we are on a plane going home. We miss Julie and Carol and our family but are looking forward to seeing Caleb soon. Annika had her pet scan today. I saw her Dad and he said she came back awake and without a breathing tube and it sounded like she was doing well. Our other friends in the NICU, Amelia, Wesley and Arrianna all seemed to be doing well! Wesley got to sit in his bouncey seat and Arrianna gets to go home in the next few days. Amelia was enjoying her parents undivided attention. I'm sure their parents would be grateful for prayers for them.

7/27/2005

10:00 pm: I don't like to say "boring" like Mike but we had another very good day. Caroline's numbers were fine. When we got to the NICU I stopped dead in my tracks because I could not see Caroline in her crib...it was very weird! She was in the little car seat/go cart thing in an effort to help her poop (she has to poop before she can eat). The nurse, Beth, told us that the more we could handle her and move her around the better. The dressing was off her incision and my goodness, it is not bad at all! Beth told us if we want to remember it, we should take a picture because she thinks it will be mostly gone in a month or so...no scar! I couldn't believe it.

We played with her until lunchtime and she was rather cranky because she was hungry. We were really excited when we got back from lunch to find out she pooped! We waited and waited for the doc to say we could feed her. At 3:30 we had to take our class....4:30...still waiting! Finally at 5:45 we got permission to feed her one ounce of milk. If she didn't throw up and was able to eat another ounce at 9 then they would turn her iv fluids down by 1/3. She did great at both feedings but was still cranky because she was still hungry. They will turn down her iv fluids at 10 pm and begin checking sugars hourly again at 10:30.

Tomorrow she can eat two ounces every three hours and if she doesn't throw up the first two they will reduce her iv fluids by another 1/3. The next day, 3 ounces and turn the iv fluids off. If she maintains sugars without the iv fluids on Friday for 24 hours they will move her from the NICU to the floor where she will be IV FREE for the first time in over 6 weeks. We will feed on demand for 3 or 4 days, still checking sugars.

Then Caroline will have an 18 hour fasting study with no feedings and no iv fluids. If Caroline maintains her sugars during the fasting study, they will declare her cured and send us home with no need for a glucometer or glucagon. If she can't make it 18 hours, they will see how she does and as long as it's a reasonable length of time they will come up with a plan and still send us home with a follow up fasting study in 6 months and would expect at that time that she would be able to maintain sugars. We need to avoid any line infections or anything silly that would hold us up. Can you believe it???? Please pray for Caroline to maintain sugars for the next week. We had a nice celebratory meal at the White Dog (thank you John and Debbie for the gift certificate...so thoughtful!)

Yesterday was fun. Austin, Pam and Stephanie Mayer came for a visit....we had a great time. They brought a big bag of goodies with them (chocolate, lotions, magazines...) but the most exciting was the FUZZY PINK POODLE SHAPED PURSE for Caroline. It made a huge hit in the NICU with the nurses, moms and even one Dad. We enjoyed our visit with them very much. Mike's brother Steve was here yesterday too! .They had a Christmas in July party at Ronald McDonald House with Santa and gifts...we were at the hospital all evening and missed the party but when we got home there was a package in our room marked for Baby Caroline...a little quilt...handmade! I couldn't believe it.

Our friend Amelia has had to have a lot of tests today, prayers for her and her parents would be welcome. They had a long, nerve wracking day. Annika has her surgery early in the morning. Prayers for her please. Two more HI babies are on their way to CHOP. I don't know their names and situations but prayers for them too please. Two babies from our room in the NICU went home today. It was wonderful to watch their families....so much joy!

8/2/2005

11:00 pm: This was the day we were all waiting for. Caroline had her fast today. They were expecting her to go at least 12 hours and react properly on her blood tests to verify that she behaved like a child with a normal pancreas instead of an HI child. When I asked what would be the most unusual thing for Caroline to do so I could be prepared for what to expect, Laura talked about something that was sort of undesirable. They Laura said it would be really really unusual if Caroline made it through the whole fast without dropping below 70. That is what I prepared myself for.

Caroline didn't disappoint. Lisa had some challenges with Caroline between midnight and 6:00 am. Caroline was hungry and wanted to eat. Finally Lisa got Caroline in bed with her for a while and that seemed to calm her for awhile. Caleb and I tried to do our best today to keep Caroline happy and help Lisa get a nap or two because she was up all night. Caroline had a hard time hanging out with Lisa because she kept wanting what Lisa had. We think she could smell it. About the only way I could calm Caroline was to keep moving and keep a pacifier in her mouth. But I knew that this fast was going to last the whole day since that would be so unusual. So we kept moving.

At the end of the fast, Caroline refused to give any more blood for their tests. The doctors and nurses tried every way they could to get blood and Caroline would not cooperate. You need to put something into Caroline if you want anything to come out. Salt water isn't enough. In the end, they gave up on getting any blood from her and we declared ourselves victorious. They still get to take her blood sugars for a couple of hours, but we are out of there tomorrow morning. We plan to be leaving on Thursday and have already gotten the tickets. We can't wait to get home.

8/5/2005

5:00 pm: Hello from LEXINGTON! (More specifically hello from HOME!)

Sorry we havent been able to update. RMH changed their internet service and we had no way to post updates to the web site and also, as we approached discharge, things got busier and busier. On Wednesday about lunch time Caroline was officially discharged. Mike and Caleb came to the hospital early that morning and collected our belongings so they could get them back to RMH on the shuttle. I stayed with Caroline for all the last visits from the doctors.they asked all sorts of important medical questions like what is she going to wear today? and Can we see her with the hat on?

When Mike and Caleb returned we were discharged with instructions to see Dr. Bos in one week, a pediatric surgeon for a final check in one month and fill our prescription for Carolines reflux (not uncommon after surgery but as she didnt have it before she should only have to take the meds for about a month). We put Caroline in the Snugli that Jerry brought to us from MN and grabbed a bus to the Liberty Bell. We enjoyed seeing a bit of history and Caleb was fascinated with the Liberty Bell. Caroline spent her first night away from the hospital at RMH.

We had to get up very early on Thursday morning. The final taping for Carolines HI dvd began at 8 am. We were not finished until almost noon. We had to have a very fast lunch and returned to RMH to finish checking out of our room. A volunteer kindly drove us to the train station in their van. On the way there, he told us that one mom was at the RMH for a full year. She was from the Ukraine and spoke no English when she arrived. Knowing how difficult it was for us to go to Philadelphia, I could not imagine walking in her shoes. It is a very important ministry they provide and we hope that we are able to give back just a little at the RMH here in Lexington. If you have a RMH in your area, it is a very worthy cause if you have a few hours for volunteering. I cant remember exactly their slogan but something along the lines of This is the house that cooks the meals, that sleeps the people, that dries the tearsthis is the house that love built. I know I am leaving out part of it. They really did that for us and so much more.

We arrived home after a delayed flight at approximately 1 am. Larry picked us up at the airport in Louisville. Caroline did great on the flight and was a good traveler just like her big brother. We arrived home to a clean house, fresh food in the fridge, homemade bread and homegrown tomatoes on the counter, beautiful fresh flowers (zinnias.my favorite!) AND a beautifully manicured and completely weed free garden! It seems about 20 or so gardening angels met in my garden before we came home and spent several hourss tidying up the very neglected garden.even replanting the pots on the front porch. I just couldnt even imagine that the friends who have all ready given so much time and attention to us would make the time to weed the garden but they did and it was a wonderful homecoming gift.

Mike put Caroline in the crib that Jerry and Carol made for Caleb. He said she stretched once, stretched twice, stretched a third time and then went to sleep. It really did seem like she knew she was home and could go to sleep without fear of being awakened in an hour to someone sticking her heel! We gave her a bath today which she really seemed to enjoy and washed away all the sticky residue on her hands and feet that was left from the tape that held her ivs and monitor leads. When we were done, the only evidence of her long hospitalization was her incision which looks really great. All the doctors and nurses say it should heal quickly and she should be able to wear a bikini! (Which I think is great but her Daddy is not so crazy about.)

We have a lot of catching up to do at home and work but are looking forward to finding a routine that works for us. Caleb starts school on Aug. 15 and fall baseball will start shortly after that. I hope Caroline enjoys baseball games because she will attend a lot of them!

Mike and I have talked at length about how we can possibly repay all the kindnesses paid to us. We finally realized that we will never be able to do it and that to say thank you is vastly inadequate! We are truly overwhelmed by your concern for Caroline and for us and know that your many prayers were heard and answered. Caroline is cured. They told us to throw out our glucometer because there is no reason to check Carolines sugarsever! We decided to keep it though. Caleb plans to do his science fair project on some aspect of blood sugars this year.

We hope that we will never take our good fortune for granted and that we will always remember never to be too busy to pass on some of the good works that you showered on us. We have felt so loved and cared for by you all. You fed us (and what beautiful meals you made), did our laundry, opened your homes to Caleb, cheered at his baseball games when we could not, ran our errands, brought all sorts of survival items to the hospital and beautiful gifts for Caroline and Caleb, sent loving words of encouragement by mail, email and phone messages, sat in small hospital rooms to be with us, cried with us and laughed with us, answered your telephones when we called early in the morning or late at night, mowed the yard, planted flowers and tended our garden, cleaned our house and prayed for us and with us. You put your busy lives on hold to reach out and care for us and we are eternally grateful.

Thank you Mike and Lisa For Sharing Caroline's HI Journey Our prayers will forever be with you and your family.

http://www.lexingtonantiqueexchange.com/Caroline/Caroline2.htm