Monday, December 31, 2007

Happy New Year!

I finally got my computer running smoothly again so I can now post from home. It has been pretty crazy but we are starting to get the hang of things and I feel slightly more under control. While things are much better it is still amazing how buys it can keep us. For example, I calculated that we use somewhere in the neighborhood of 45 syringes, of various sizes, in a 24 hour period. This means that if we are too tired to wash them one night, the next night we have about 90 to clean. Needless to say we have a lot of medical supplies and they take up a lot of space.

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

Wow! This is crazy

This is my house. Take that!

We are sooo excited to have Brandon home. He has done really well. He really seems to enjoy the attention and extra stimulation. He hasn’t been out of a hospital room for almost six months. He opens his eyes really wide and looks around at everything. He really seems to enjoy the attention, both from his parents and from his brothers. He hasn’t fixed his eating problems overnight but he has done really well in general and it appears to be really good for him to be home.

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

I’ll be home for Christmas…

It’s official. Unless something goes wrong, and we know it easily could, Brandon is coming home Christmas day. It’s extra funny because my Birthday is Dec. 25th and Katelyn came home on Amy’s birthday in October. This will make Brandon’s total stay in the NICU around 5 and a half months.

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

It’s beginning to look a lot like (after) Christmas

Katelyn is doing well and Amy tells me she is quite the celebrity at the dermatologist’s office. They even took some pictures during her visit today and gave us copies. (I will scan them and post them soon.) She wore a reindeer outfit today that was pretty cute. Here lip is progressing quite well and everyone is very optimistic. We will get a monitor that measures the oxygen saturation in her blood today. She has been doing really well on her last couple of tests without oxygen so we are going to take her off of her oxygen and watch this monitor for a day. If this room air trial goes well, we will be able to take the tubing away for good.

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

Our "plan" is really a goal

I have learned in the last couple of days is that our "home by Christmas plan" is really just a goal. Brandon has been off and on for his feedings but even more troublesome is that he isn’t doing well with his morphine wean. He is getting pretty irritable and not eating well. They may have to go slower than we had hoped. It’s only been a couple of days but it certainly makes me doubt if he will be home for Christmas. Amy and I have also suspected that the morphine has a big effect on his willingness to eat. We keep hoping that once he is off of the morphine his eating will improve.

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

Danger: Keep Away

We've been bad about taking pictures this week. This will be the second post without any pictures and I promise to work harder to take more soon.

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.

Happy Birthday

Today was Brandon and Katelyn’s 5 month Birthday. (Technically it was yesterday because I’m writing this after midnight). We’ve been busy and it’s been a while since I posted.

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

Super Cute

One of the nurses took a very cute picture of Brandon the other day. We also finally got a decent picture of Katelyn smiling. She smiles a lot but he delay on the camera can makes it hard to capture in a photo.

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.

Katelyn is also doing well. She is getting much better at sleeping for long periods during the night. She also seems to sleep very deeply. This can be scary for me when I see her so asleep that it takes a lot to make her stir. When she sleeps so deeply sometimes the monitor doesn’t pick up her breathing as well and it sets off alarms. I glad we have the monitor but when it goes off, even if I can tell there isn’t a problem, it can still cause me to jump. She weighed 8 lbs. last week. Even thought this is very tiny for a baby that is almost five months old, I have to remember that she is a lot more than 4 times her birth weight. She is also gaining weight really well now. She still hates bottles.