Wednesday, April 1, 2009
1 April- We have very exciting news... Carolione is now double her birth weight!!! Wait, that's not the best part...She has taken her full bottle the last 24 feedings!!! That's still not it...Today she passed her car seat test!!! Okay, we've left you hanging long enough...The most exciting news is that she is scheduled for discharge this coming Sunday April 5th!!! Doctors and nurses are now flooding us with information and new papers to sign. Caroline will be released with all of the current monitors she is on and her oxygen support as well. Kel and I are still trying to get over the nerves of learning to deal with these things at home but we are still very excited to have our baby home with us. She will also come home with a new style of brace for her hips and legs to keep improving there and we already have many appointments set up with various physical, occupational, and respiratory therapists for follow-ups. We are so thankful for all of your prayers along the way but please don't stop now. There are still many difficult days ahead as she fights to catch up with her actual age. Doctors tell us that developmentally this could take up to three years. We remain faithful and confident she will grow into a beautiful and intelligent little girl. Please also pray for Kel and I as we try to make final arrangements for her homecoming as well. Today we learned some of her prescriptions she needs may not be covered by insurance and some cost as much as $200. Also after picking out an awesome car seat/stroller combo we have learned it may need to be returned because another brand may fit our vehicles more safely for her needs. Finally, we will be sure to update at least one more time when she makes it home but that may be it for the Baby B blog site for a bit as we adjust to life at home as a new family.
Sunday, March 29, 2009
29 March- We are very sorry for the time in between updates. Caroline is up to 6 lbs 6.8 ounces and smiles more everyday. There are hints that the heart murmur may still be there but doctors aren't too concerned at this point. Her reflux has not improved and may even be worse which is making it difficult for her to finish feedings. They are changing the medicine she is on to see if that makes a difference. They tried to ween her off the oxygen support again this weekend but with no luck. It is now very likely she will be on oxygen support when she is discharged. While we want her to have the support she needs, Kel and I are a little nervous about the stresses of monitoring this when she comes home. Her hip/leg braces seem to be working but they will remain on for awhile longer. Her latest lung x-ray still shows the one lung will not fully deflate but there is no plan for corrective surgery at this point. Please keep praying as we are beginning to see light at the end of the tunnel.
Friday, March 20, 2009
20 March- Caroline has been growing faster than we can keep up with. She is now up to 5 lbs 10.4 ounces. There is a down side to her growth rate in that her bone marrow is still developing and can't keep up producing enough blood. She is scheduled to have her third transfusion in the next few days. The nurses made some changes today with her bottle feeding and she took an entire bottle in only 25 minutes. That is probably her 6th or 7th entire bottle so far but the others took close to an hour. She is now attempting to bottle feed at least every other feeding and sometimes more. Her physical therapist has been checking up on her and decided Caroline would benefit from hip straps which wrap around her lower back, then her legs, and are attached to boots on her feet. The purpose is to keep her feet, legs, and hips all in a good line. Hopefully we will see the benefits of this therapy when it comes time for Caroline to start crawling and then walking. She finally had her second vision test and the results showed that while the vessels in her eyes are still very premature, there is no reason for concern and her sight seems to be getting better as she grows. They decided not to schedule her next hearing test until they remove her from her oxygen support. Somehow the flow can throw off the readings. Lastly, we learned today that the murmur in her heart has returned but doctors and nurses are confident that the upcoming transfusion will fix this problem. Please pray that the transfusion improves all of the things they say it can and pray for her continued improvement with bottle feeding. Every full feeding she takes is one step closer to home.
Friday, March 13, 2009
13 March- Caroline had an upper GI test very early this morning. The results showed that she has moderate to severe reflux and has now been put on Zantac and Mylanta. While we knew she had some signs of reflux, this level was surprising because she really doesn't act like it bothers her. Doctors say that some babies are just tougher than others and it's apparent Caroline is one of the tough ones. When Kel and I spoke to the doctor he explained what each of the medicines do and said there was a chance Caroline would be sent home on both. The good news is that while most babies with this much reflux stop wanting to eat, Caroline is continuing to improve with her bottle feedings and is now trying at least three times a day. She is now up to 4 lbs 14.8 ounces and will likely cross the 5 pound mark this weekend. Her hearing test will need to be redone as the results were inconclusive and we still don't have the results from her vision test so continue to pray for both of those as well.
Wednesday, March 11, 2009
11 March- Kel and I are such proud parents this week. When Kel arrived at the hospital on Monday Caroline had been placed in an open crib and her nasal cannula had been removed. These were two huge steps accomplished over night. The new bed just makes her look like such a big girl which is becoming more and more true since tonight she weighed in at 4lbs 12.3 ounces. Caroline made it almost 24 hours without any oxygen support. Unfortunately she did wear herself out trying to breathe completely on her own and the doctors decided to put the cannula back in her nose. She has shown definite signs of progress with less and less oxygen desaturations. The bottle feedings are improving with each try and they are now allowing her to eat from a bottle each time she shows interest. Today was the first day where she ate from a bottle during two different feedings. Some of the signs of reflux are still there but are not bad enough to cause serious concern. Please pray that this remains a small issue. Also, we just learned she will be getting her first hearing and vision tests very soon so pray for good results there as well. Thanks for your continued support, we love you all.
Sunday, March 8, 2009
8 March 09- First of all, we want to thank all of you who have been praying diligently since our last post. Caroline has shown definite signs of improvement. The doctors are going to keep checking on the lung x-rays to watch the lung they've been concerned about but we have no reason to think it is getting worse. They are confident the medication she is on will fix the bacteria problems in her intestines and the changes in her oxygen flow/concentration led to the best week so far in terms of numbers of oxygen desaturations. While she still shows lots of signs of reflux the doctors were comfortable enough to bump her food levels up and we have actually been trying bottle feeding once a day for the past four days. Caroline struggles but is learning quickly. She is now up to 4 lbs 6 ounces. Please keep praying that the progress continues as they will continue to challenge her with new things until she is ready to come home.
Monday, March 2, 2009
2 March- Lots of prayers are needed for lots of different issues that our family has faced in the last week or so. It started late last week when Caroline showed signs of discomfort and even pain. There were also certain signs of reflux. After many tests they made the decision to take the added calories out of her food and to cut back on the amount of food they were giving her. Thankfully the discomfort slowly decreased but sadly so did Caroline's weight. For three days straight she either lost or stayed the same weight in a time when it is essential that she grow and develop. Other signs of reflux have continued along with other signs of struggles with her lungs and breathing. X-Rays have shown some over inflation in her right lung that is not fully deflating when she exhales. Doctors are hopeful that this will fix itself with time but if not it could be serious enough to require surgery. Her flow rate on the nasal cannula has been up since I wrote last but Caroline has still shown signs of desaturation in her oxygen levels. With the high flow doctors determined there was too much air building up in her abdomen so they've decided to set the oxygen rate to 100% instead of the 25% she's been averaging, but take the flow down to .01 liters rather than 4. As if these issues aren't enough to keep Kel and I's heads spinning, they have also detected a high level of bad bacteria in her intestines and have placed her on some antibiotics to help clear that up. For Kel and I the multitude of recent hurdles have brought on added stress and exhaustion. We love each other and our daughter so much but this situation has brought new challenges. While all of this may seem scary to everyone, there is comfort knowing that her doctors are still very pleased with her overall progress and are confident that many of these issues will be resolved. Please pray for our daughter and our family as a whole.