Monday, December 31, 2007
We got a call from the doctor shortly after my last post. He gave us the results of Katelyn’s oxygen study and she is now completely off of the oxygen. It is so much easier to move around the house now. At first it was strange to see her face without the canula attached. It was like seeing someone who you have never seen without glasses for the first time without glasses. She is as cute and feisty as ever. Her smile is very charming and she smiles often. She still isn’t growing as fast as the doctors would like but there isn’t any real cause for alarm. She is still on a handful of medications but other than that she is doing well. Of course, although she is five and a half months old, she is acting like her adjusted age of two and a half months. She seems to be doing all of the things she should be doing at her adjusted age.
We had to replace Brandon’s NG tube 6 times (3 times a piece) in the first 4 days he was home. They can last anywhere from 10-14 days, if he doesn’t pull them out. We’ve tried to really tape it down well this time and so far it has lasted a lot longer. I hope it lasts because he replacing it so often seems to really have irritated his nose. His nose was a little bloody after the last couple of tube replacements. He has also been a little congested and this affects his ability to breathe. Because of this congestion his oxygen needs have gone up a bit lately over the last couple of days. However, today we to a replacement for his tank and he seems less congested. We were able to turn down his oxygen a bit more. He is eating really well in general, much better than he has every done. He still has ups and downs and we have a while before we won’t have to use the NG tube. He certainly has a different personality than Katelyn. He seems much gentler and less feisty. You can even hear the difference in the sound of their cries.
Thursday, December 27, 2007
However, even with this happiness and excitement we feel very overwhelmed. My Birthday was on Christmas. I planned on eating cheese cake instead of a birthday cake. (I like cheesecake much better). We have one in the freezer and I still haven’t found time to take a bite. I’ll give it another shot tonight.
Christmas evening was like a scene out of a movie. It was so crazy and stressful I think you would’ve had to seen it to believe it. The afternoon went great, but by evening the boys were running around yelling and screaming. We had to wade through a sea of wrapping paper and toys. We didn’t really get that many gifts but it is amazing how much space toys and junk can take when everything is taken out of the box. A nurse showed up to help us learn how to use some of the equipment. Katelyn was crying because she was tired. Brandon was crying because he was hungry. They both needed medication. I was holding both babies trying to listen to the instructions. Amy was listening while preparing the medication. The alarms on the monitors kept going off and we had to determine which baby they where attached to. We kept tangling the massive pile of tubing and cables in knots. I think the highlight was when, as the nurse was talking over this ruckus, Amy shot me in the head with some of Brandon’s medication. I’m pretty sure that the nurse was happy to get out of there when she was done.
Brandon quickly pulled out his NG tube in the middle of the night last night so I got to place my first tube without a nurse around. It made me pretty nervous and it was even more worrisome because he pulled the tube during a feeding. This left milk in his nose that of course caused some breathing difficulties. For a while we were pretty worried. By morning he was still had noisy breathing but a quick suction took care of the problem.
It’s continued to be crazy but Amy is amazing. She is working hard to get organized. We are getting smarter and filling syringes with medication for the entire day. We are mixing large daily rationings of food for Brandon and dividing it up into feeding size proportions. Amy has made a chart to track what needs to happen and mark when it has happened. We are going to make it, but it certainly won’t be easy.
In addition to the baby responsibilities it seems like other problems keep popping up. Our garage door has become finicky and doesn’t want to open all of the time. The dish washer seems to be following the garage door’s example. We got some plastic stuck in the garbage disposal and this morning I was in the attic checking to see if our roof was leaking. Our computer also seems to by dieing. We have somehow seemed to handle all of these problems but needless to say, our house isn’t looking as clean as I would like.
Even with all of this stress, it is all worth while when we realize that we have both of our new babies home and they are doing so well. At the doctor’s appointment today he told us about his conversation with the nurse that help revive Brandon shortly after his birth. We were reminded of what bad shape he was in and how lucky we are to have him at all.
On Christmas, before the mayhem broke loose, I was planning on writing a deep and contemplative Blog post about how grateful we are. I guess I will save that post for later…
Sunday, December 23, 2007
Let me start by telling you about Katleyn. She is doing really well. We gave her the overnight room-air trial several days ago but the doctor hasn’t looked over the data that is recorded on the saturation monitor to let us know how she did. We hope that he will get a chance to evaluate it tomorrow and let us know if we can take her off of he oxygen. It was kind of strange to see her for so long without a tube stuck to her face. She is sleeping really well through the night. She sleeps very deeply and every once in a while, her apnea monitor goes off. A little stirring seems to do the trick but it makes me want to keep the monitor for a long time. Katelyn is becoming very social. She smiles a lot and she will spend long periods of time trying to talk back to us. She seems to quickly charm everyone with whom she comes in contact.
Brandon is also becoming more social. It seems like getting rid of the morphine is really helping him. He also does a lot of smiling and he is very cute. While he certainly can be demanding, he seems much more calm and sweet than Katelyn. It makes me wonder what this means for our future.
Brandon’s feeding is improving but he is not any where near being able to eat full meals on his own. What this means for us is that we will have to continue to feed him through a tube until he is able to eat on his own. It also means that we will need a lot more medical equipment. For Katelyn we have oxygen tanks and the apnea monitor that tells alarms if her heart rate or breathing rate falls out of the normal range. In addition to these things, we will need a pulse oximeter (to tell us the oxygen saturation levels in his blood/how well he is breathing), a pediatric scale to measure how much he is eating when he is nursing and a pump to push down his feedings smoothly over the correct period of time. We are really just moving the NICU to our house.
In addition to equipment we also needed to get training. We needed to learn how to use all of the equipment. Amy and I also had to learn how to pass a tube down Brandon’s nose and into his stomach. We’d seen this done often and but this worried me a lot. Of course, just before we had to do learn how to do this, a nurse told us a bunch of horror stories about what can go wrong. I actually ran into some troubles on my first shot. It wasn’t because I didn’t know what I was doing so it was actually nice to run into problems with a nurse there rather than having this happen at home. It will still take me a while to totally feel at ease, but I can do it now. While we have high hopes that his eating will quickly improve when he is home, there are some advantages to using this tube. For example, we can check and see how full he is before we feed him and if he has gas, we can just pull out all of the extra air. Quick and easy burping.
I’ve learned a lot and they often joke about giving parents honorary nursing degrees after they’ve had a baby in the NICU for a certain amount of time. However, Amy has really learned an exceptional amount. She does a much better job at remembering the names of all of the medications and what they do. While I forget the name of anything I can’t spell. The other day, Amy was visiting Brandon. The nurse that was taking car of Brandon was a more experienced nurse and she often helps the other nurses. Another nurse came in the room and asked if Brandon’s nurse could help her change an ostomy bag. Brandon’s nurse was taking care of two babies and said she couldn’t but she volunteered Amy. “She knows all about ostomy bags.” Amy went to help and it turned out that she actually had some good tips and tricks that she had learned up at Primary Children’s that she was able to share. Because they don’t have a surgeon at UVRMC they don’t often have babies with an ostomy bag.
I’m often reminded that we are really lucky. I don’t think we have any idea how many bullets we have dodged. The other day when Brandon passed his hearing test one of the nurses told us how amazing it was because he had been exposed to so many antibiotics. We didn’t even know that this was a possible side effect of getting so much antibiotic exposure.
Wednesday, December 19, 2007
Brandon has officially passed Katleyn in weight. Katelyn weighed in at 8lbs. 8oz. yesterday and Brandon was 8lbs. and 9oz. a couple of days ago. It is still going to take a while to get Brandon home. I have resigned myself to the fact that it may be closer to a full six months stay in the NICU (Jan10th) before he can come home. He is doing well but with the current weaning schedule he won’t be completely off of his medication until December 23. He has shown some good progress in the last couple of days. His average intake when nursing or taking a bottle has jumped from 10-15 up to 20-35. His full feeding is around 70 ml. so he still isn’t near a full feeding but we are happy to see progress. He also isn’t consistent. He often gets tired and we have been advised not to push him and make it a bad experience.
Wednesday, December 12, 2007
I finally tricked Katelyn into taking a whole bottle. It has been a while since she has been willing to eat much from a bottle but she has been eating a lot when she is nursed. This morning I was trying the bottle without much luck. Amy was feeding Brandon so she didn’t have many options. She still resisted and finally fell asleep. She stirred about a half hour later and I tried again. She wasn’t fully awake so I don’t think she noticed it was actually a bottle. She sucked the whole thing down in a couple of minutes.
We slipped Katelyn into the hallway at UVRMC the other night to get some photos.
Tuesday, December 11, 2007
One of the big challenges we are going to have over the next 5-6 months is keeping Brandon and Katelyn healthy. We need to keep both of them out of public places and fairly isolated during this time. While this is a common recommendation for many newborns during the winter months, it’s especially important for these two little ones.
They both have a weakened immune system and very damaged lungs (that hopefully will get better over time). A common cold could put them back in the hospital and even has the potential to be fatal. We have seen what a standard infection can do to them and it is pretty scary. We all wash our hands often and we have a lot of antibacterial lotion all over the house. The boys know it as “magic soap”.
One of the most difficult things is to explain this to everyone is that they need to keep their distance. We often have to fend off strangers. It is pretty amazing how much attention a baby can attract when we take her somewhere like a doctor’s appointment or anywhere public. Everyone wants to see and even strangers want to touch the blankets and some even want to hold her hand. We are working on ways to tactfully ask them to stay away without sounding mean.
It's even harder with family and friends. Brandon and Katelyn are both so cute and we really want to show them off but we know it is much wiser to wait. It’s even harder to find a way to tell a good friend or neighbor to keep their distance. We’ve been considering making a sing to put on her car seat that says “Danger: Keep Away” but I’m not sure how effective it will be. We noticed that a common tactic used by the nurses in the hospital was to write notes as if they are from the baby when they want to leave directions for everyone else. This way it seems a little friendlier than the nurses telling them to stay away or not to wake them when they are sleeping. We might try that too and see if it works.
Katelyn is doing well. She is growing and become more and more active all of the time. She still hasn’t changed her mind on the bottle. She won’t have a thing to do with it, but it doesn’t mean that I won’t quit. Every once in a while she surprises me and takes a lot but it has been a while since she has done that. She has learned to sleep through the night on some nights so our sleep is getting a little better. She has had several dermatologist appointments and both the doctors reassured us that her hemagioma will most likely go away on it’s own and even if it does leave a little scaring, it won’t be anything that can’t be fixed.
Brandon is very healthy and he is also doing well. His main challenge is eating. He had nursed a little before his operation, but after a month of not nursing it was like starting over again and he didn’t take off as quickly as we had hoped. A full feeding for Brandon would be somewhere between 60 and 70. Both nursing and with the bottle he has been doing as poorly as 4-15. He just gets tired and quits or seems to have no interest. After trying to give him a bottle or nurse for more than a half hour we just have to quit and let him be fed through a tube.
The good news is that in the last couple of days he seems to be improving. In fact, tonight he took a record 47! This isn’t even close to a full feeding but at least he is going the right direction. Amy talked with the doctors and nurses about how soon we can get him home. Because of the fear of withdrawal, they need to wean his morphine very slowly. The current weaning schedule will be complete in 10-15 days depending on how he reacts. He may not be eating well enough at that point but we are going to start learning how to insert the tube and remove the tube so that we can take him home even if he isn’t completely ready to eat on his own. With this in mind, we have a good chance of having him home for Christmas. Katelyn came home on Amy’s birthday and Brandon may come home on my birthday.
We feel like Brandon just needs to be home. His head is getting flat and he really needs a chance to roll around and lift his head more often. While the nurses are great, there is only so much they can do to help with his normal development. There is also the fear of him getting sick while in the hospital. We have learned that hospitals are rather dangerous places and getting sick could be very dangerous for both Brandon and Katleyn.
We now have a plan for getting Brandon home!
Tuesday, December 4, 2007
Brandon is doing well in back at UVRMC. The best thing is that his oxygen has been able to be reduced quite a bit. Yesterday, the results from his Blood-Gas test were the best they had ever been. This means that he is breathing well and in particular' exhaling the carbon monoxide well. We have continued to work on getting Brandon to nurse. He hasn’t done a stellar job. He does OK at times but he also has feedings where he doesn’t eat much. There are a lot different things that can play a part in his progress. They are still finishing weaning him from his pain medications. This can take a while and can often cause difficulties in nursing. The nurses also believe that some of the noises in the NICU may cause a distraction so they moved him to a private room to see if it would help. Amy continues to nurse him four times a day. While this is still difficult, it is certainly much better now that he is close to home.
Thursday, November 29, 2007
We have been talking about it for a while but it is finally real. On Monday they did an echocardiogram on Brandon and determined that he was doing well enough to send him back to Utah Valley. It took a while to figure out all of the details but Tuesday morning we packed him up and he was back-transported via ambulance. The great part is that as they wheeled him to the ambulance we all were able to meet in the hall. We got a chance to take our first family picture with all of us in one place. This alone was almost worth the transfer. It was hard to leave behind so many nurses and doctors who have loved and cared for Brandon. The nice thing is that returning to UVRMC is a lot like going home. We felt very welcome. Even the security guards remember who we are and asked how Katelyn was doing.
Wednesday, November 28, 2007
Amy went to feed Brandon up in Salt Lake. She had taken care of a lot of the Thanksgiving Day preparation but I was left to finish up. Amy left a glass pan full of the stuffing sitting on the stove waiting to be cooked in the oven. I turned on the stove to boil water for the potatoes but I accidentally turned on the wrong burner. I don’t know if you know this or not but, when heated on a burner, those things explode. This was quite a pain to clean up but that still wasn’t the most eventful part of the day.
Just as we were getting ready to eat Thanksgiving dinner, Amy came down the stairs and noticed that the water used to humidify Katelyn’s oxygen had been turned over. Amy turned it back but didn’t think much of it. The problem is that she carried Katelyn from upstairs to downstairs. We put Katelyn in her swing and began to get ready to eat. Gravity took over the water that was sitting in the tube began to drown her. Luckily Amy was paying attention and noticed her gasping for air and flailing around. By the time we ripped off her cannula she a lot of water had gone down her nose. I instantly turned her upside down and tried to get the water to come out. After a couple of seconds it was apparent that she wasn’t breathing. Amy went to call 911 while I kept trying to get the water out.
She kept getting worse and she began to turn very blue. It was VERY, VERY scary. I knew they couldn’t get there in time. After somewhere between 30 seconds to a minute she began to regain color and seem to begin breathing again. Luckily she never passed out and I didn’t have to actually start breathing for her. Once she seemed to have cleared most of the water, we grabed a new, dry cannula and cranked up her oxygen. By the time the paramedics arrived she was doing pretty well. They stayed and monitored her for a while and everything seemed good. They didn't take her away, but they suggested we call her doctor and get her checked out. We made several calls and everyone just said to watch her closely.
After dinner she seemed to have developed a pig-like grunt when she breathed. She also seemed to have trouble nursing. We were on our way up to Salt Lake so we quickly packed everything up and took her directly to Primary Children’s emergency room. When we got to the emergency room she was really squeaking when she breathed. She needed her oxygen turned up and her chest X-ray was a little fuzzy. It was hard for them to know if the X-ray was a problem. Because she has lung problems they didn’t have any idea what normal was for her. The decided it would be best to admit her overnight.
Amy spent the night with her. She ran back and forth all night between feeding Brandon and Katelyn. By morning she was doing so well that they had taken her completely off of oxygen for 10 hours and she was doing fine. They released her by the afternoon.. However, our pediatrician was fearful of taking her off of the oxygen at home, because her oxygen needs could still fluctuate quite a bit. Her grunting remained for a couple of days.
One funny note is that when Katelyn was being admitted, the doctor stopped Amy as she explained Katelyn’s situation and asked her what her medical background was. The nurse explained that she was just a NICU mom. We know just enough to be dangerous.
Thursday, November 22, 2007
Now that I have a little time off work, I’m getting around to writing for this blog. I have good intentions everyday but I’m always too tired to write when I actually get a chance. These chances usually come in the middle of the night or early in the morning before the boys wake up. I hope you can forgive my spelling errors and the rambling nature of this blog. I can at least use the excuse of sleep depravation.
Overall, Brandon has done really well. His oxygen needs have continued to improve (he needs less and less). The weaning of his nitric oxide went really well. He certainly seems to be past his infection and has recovered well from the surgery. The next big step is to get him eating on his own. The doctors have said that as soon as he is off his nitric oxide and stable they can begin to consider transporting him back to the hospital near us. The trick is that he will have to be doing well and this stability might mean that he is close to coming home. We will have to convince our insurance to pay for a back transport. I anticipate that this may not be easy to do. If he is doing really well they might feel he is to close to going home and even push to send him home while he is still eating through a tube and not back transport him.
Brandon’s nursing has been off and on. He has done well a couple of times and poorly a couple of times. We knew that we should expect this but it still feels discouraging. Yesterday the occupational therapist (the person who works with babies to get them to nurse and take a bottle) suggested that we start heavily into bottle-feeding. This is one area where the two hospitals differ greatly. UVRMC has a procedure they follow that focuses on breast-feeding when possible. At Primary Children’s Hospital they seem to do the opposite and focus on bottle feedings. It makes sense when you think about the type of problems that they deal with at each different hospital. However, there are many reasons why it is really important for Brandon to nurse. After talking it over with the nurses, Amy decided that the best thing for Brandon would be to move up to nursing him multiple times in a one day. We hope it will be for a short period but, if this is the big thing that will help get Brandon home, it will be worth it. She nursed him twice for the first time yesterday. It is good I have some time off so I can help out over the next couple of days. We might even try and stay ner the hospital this weekend. So much for a relaxed Thanksgiving weekend.
Yesterday they took Brandon completely off the nitric oxide and unfortunately his oxygen needs increased quite a bit. Last night they put him back on the smallest amount and his needs seemed to have dropped. We will have to see what the doctors say today. They intentionally wean babies slowly because getting babies off of the last little bit can be hard. I hope this just means he needs a couple of days for Brandon to adjust on very low amounts and then they can take him off completely without any side effects.
Katelyn is also doing well. One of our big challenges with Katelyn is to get her to grow faster. Also, in about the last two weeks she has decided that she doesn’t like bottles. We had been very careful to make sure we bottle fed her well, as per the instructions from the hospital. One of the purposes of the careful bottle feedings techniques was to make sure she didn’t have a bad experience. While she never was a stellar bottle feeder she seemed to take a turn for the worse. We even went back to the occupational therapist at UVRMC and she said we were doing everything right. We have been trying her suggestions with little luck. We have more ideas and we are going to try different bottles and nipples. She really needs to take a bottle, especially with Brandon nursing twice a day. The bottle-feeding responsibility has fallen to and I wont give up!
We are still concerned about her lip. We are going to take her in to the specialist at Primary Children’s in a couple of days. It will be nice to get another opinion and hopefully be reassured that we can eventually make sure her lip heals completely. She still isn’t doing well enough to be taken off the oxygen. We will test her again next week.
Friday, November 16, 2007
Everything hasn’t been completely smooth since the last post. A couple of days ago they found a blood clot attached to his central line. This is the line that was surgically placed in his chest and goes to his heart. It is used to easily administer several medications and treatments. A blood clot that comes loose and travels through his system could be very dangerous. The problem is that they needed that line for a couple more days to finish giving him some medications he needed. The doctors decided to keep the line and give Brandon medication to keep the clot from growing.
Well, today they took out the line. It went well and ever since he has had a great day. We need to remember that his progress may slow down, or even back up again, but they were able to significantly reduce the flow of his oxygen today and he seems to be doing great. We now are looking forward to the time when Amy can begin to feed him again.
Katelyn is doing well. She isn’t growing as much as we would hope but there aren’t any real problems. We are going to take her back to the dermatologist to have her look at Katelyn’s lip and make sure that everything is healing correctly. She is however, remarkably cute and very loved by her entire family.
Monday, November 12, 2007
The week before his 4-month mark, Brandon saw a lot of changes to his ventilator. At first so many changes really concerned us but, after a little digging, we learned that it was more a difference of opinions among the doctors that were caring for Brandon than it was a sign of a major problem.
On the night of the 9th they decided that Brandon was ready and they extubated him. He is now off the ventilator. For the most part he has done well since being taken off the ventilator. However there have been some ups and downs. Because he has spent so much time on a ventilator his lungs are pretty damaged. He has pulmonary hypertension and it causes a lot of problems with his breathing. The interesting thing about his lung condition is no one knows what long-term effects it will have. Lungs grow and develop for up to 12 years so there is a lot of time to heal. However, Brandon has a pretty severe case of chronic lung disease. I still feel confident that he will make a good recovery but it is likely that he will experience a lot of asthma like symptoms and be very susceptible to pneumonia. The doctors just say he probably won’t ever be a long distance runner, but I think that has a lot more to do with the genes his dad gave him.
Considering all of the potential problems these babies could have had, I consider ourselves really blessed. I also believe that all your prayers have had a big impact. I have high hopes for Brandon and Katleyn’s future. I joke about Brandon being a star football player because he is turning out to be a pretty big looking kid. Because of everything I have seen him conquer, while I understand that his lungs would make this a surprising outcome, I believe it is still possible.
Katelyn continues to do well and she continues to keep us up in the night. She seems to have a lot of problem with reflux and gas so she doesn’t sleep well after eating. She seems to do OK if she is held upright. As you can imagine this leads to some long nights.
Blake and Derek have done really well with Katleyn home. They don’t show any signs of jealousy and they are great big brothers. They rush to see what is wrong any time she cries. They love to help. They are very gentle and love to give her hugs and kisses. They often tell us how cute she is and how much they love her. They too are anxious to bring Brandon home. It is now even harder because it is RSV season, so they have closed the NICU at Primary Children’s to siblings.