Sunday, September 23, 2007

Still waiting

As far as the photos go for tonight’s post, they are going to all be of Brandon. It seems like we have taken fewer pictures of Katelyn this week. I’m sure it is just because in the last couple of days she has looked like she is worse condition. However, tonight she was looking really good. We just forgot our camera :)

Derek holding Brandon

Blake holding Brandon

That looks like a smile.

Blurry picture but cute kid.

Brandon is doing really well. One of the nurses told us it must be time for Brandon to go home because it seems like when they start getting really cute, they go home. While it is true that he is very cute, it will still be a while before he goes home. He is doing well on his nursing but it will still be quite a while before he is ready to eat completely on his own. However, he is growing well. He is now 3lbs. 8oz. I know this doesn’t sound big but when you consider how small he was at birth and what he has gone through, this sounds great. One good thing is that he is growing pretty consistently every day.

The surgeon recently looked at Brandon. He is big enough that he could operate on him but he felt it would be much better to wait until he is bigger. He is doing so well that there is no need to rush. In fact, they talked with us about the option of taking Brandon home and coming back for the operation. Who knows what will happen but as we thought it over, as good as it sounds to bring him home, it may not be that exciting if we just have to bring him back for another hospital stay. It might be better to get it all out of the way and be done. We will just have to see how things go.

They moved Brandon (and one of his roommates) into new rooms. They needed more room for other babies that were being transferred into the unit. They put him in an isolation (private) room. It is quite and kind of strange to be in this new room but there are certainly some nice things about it.

As you can tell we from our previous posts, Katelyn has struggled a lot more lately. We still don’t have any answers about what caused her seizures. We just worry about all of the things that could be wrong. It has been really hard on us emotionally. We also don’t have any idea what the plan is. The doctors are going to discuss it over the next couple of days.

Because of the combination of problems Katelyn looked bad most of this week. She was heavily sedated after her second seizure. She was retaining water and looking swollen. She was put back on the CPAP machine that covers her face and causes a little swelling in the eyes. Her lungs had too much fluid. She had a pretty bad diaper rash. And of course, we now have the seizures to worry about.

The good news is that she looked GREAT tonight. They were able to take her off of the CPAP machine yesterday. They moved her into a crib and also moved her to a new spot. She was very awake and very happy tonight. She now weighs 5lbs. 1oz. It felt like we got our baby back.

I had a strange thing happen on Friday night. I went in to visit Katelyn. She had a new nurse. She had just been screaming for a long time so the nurse gave her some medication. Unfortunately this new nurse wasn’t very familiar with Katelyn and so she gave her some medication that the doctors had determined, early on, didn’t work well for Katelyn. She was asleep when I got there but I held her for a while. She began to twitch so I alerted the doctor. He looked at her twitching and he couldn’t be sure if it was a seizure or a side effect of the medication. It seemed to be very different from the way the previous seizures where described. The other strange thing is that they lasted a lot longer than 45 min. When twitching occurs as a side effect of the medication, it usually only lasts for a couple of minutes and not as long as this one did. We don’t know what it was. It is unlikely that we will ever know.

Even with all of these problems things are looking up. Amy may be able to begin nursing her again very soon.

Tuesday, September 18, 2007

More struggles

Brandon sleeping

Derek holding Katelyn

Blake also holds Katleyn but he always seem to be done when we pull out the camera. Blake and Derek really like to hold both babies and are very loving.

Let me start by telling you how well Brandon is doing. He is growing and last night he nursed really well. Before he can go home there are three things that need to happen. His the amount of oxygen he needs must improve a little. They want to make sure his eyes don’t continue to get worse and he needs to learn to eat completely on his own (not through a tube). Notice that "have his operation" isn’t on this list. We talked to the surgeon and while they may do the operation before he goes home it isn’t a requirement. He could come back later. We may however, want to get everything taken care of before he comes home. He now meets the minimum size requirements for the operation but because he is doing so well they aren’t in a hurry to do it. The longer they wait and the bigger he is the more likely it is to go smoothly.

Now, for the latest on Katelyn: Not long ago she was doing so well and now she is really struggling. Yesterday she was headed down for an MRI and she had another seizure. The nurse noticed and brought her immediately back to the NICU. They gave her a couple of medications. The first one seemed to temporarily stop it but it didn’t stop completely. They gave her a second medication that seemed to do the trick. After she had been settled for a awhile they did the MRI. She hasn’t had another seizure since yesterday.

As of right now they still don’t have an explanation. I learned something interesting. If they don’t find an explanation, then these seizures will be considered to be epileptic seizures. Not knowing the exact cause is the definition of epilepsy. The good news is that the doctors say that most babies outgrow seizures. They could be a lot of different causes. They have checked for many of the scary possibilities and everything has come back negative. Today they are focusing their efforts and checking for a virus. They are going to do another lumbar puncture and are working on a bunch of cultures.

Katelyn also received a very needed blood transfusion yesterday. She has been very heavily sedated because of the siezures. Since she has been sedated she has also had a lot of problems breathing. She seems to be retaining water and it is clouding her lungs. They have given her medication to help her get rid of the water. They also have moved her back to the C-Pap machine and they continue to test her. There is a chance that if she doesn’t improve they might have to re-intubate her.

Right now they attribute the breathing problems to the amount of sedation she has needed. It just seems like we are moving backwards really quickly. While I know that things could turn back around quickly, it is very scary and causes a lot of stress to her mom and dad. Please remember her in your prayers and we will keep you updated.

Monday, September 17, 2007

No solid news

The nurses gave us a 2 month Birthday surprise for Katelyn. They took these pictures and had them ready when we came in. I have to give them an A for effort but ... the lighting isn’t great, she has her eyes closed often and the purple outfit is a little strange against the orange blanket. However, the concept is cute enough that I decided to post these pictures

There isn’t a lot to report. Today Katelyn will have a bunch more tests run. She will have an MRI and an EKG. It will take quite a while to get the results back from these tests. The good news is that she continues to do well and not show any more signs of problems. She keeps nursing and eating record amounts. (They can tell how much she gets by weighing her before and after feeding.)

Brandon is also doing well. They are working hard to get him off of as many medications as possible. He is growing and should be at 1500 grams within a day or two. We will still need to talk with surgery to see what the plans are for his next operation. In any case, he is doing well.

Sunday, September 16, 2007

A couple of bad days

The post below is a little misleading. I chose to post it anyway and just follow-up quickly with the latest news. I was actually finishing up the post Friday morning when we got a disturbing call from the hospital. Katleyn had a seizure. It lasted for a long time (almost 20 min.) They moved her back to the high level unit and ran a bunch of tests on her.

As of right now we don’t have any good explanation on what caused it. The good news is that they checked many of the potentially serious causes and they haven’t found anything yet. They did a CT and didn’t see any hemorrhaging in the brain or signs of a stroke. They ran a lot of other tests that have all come back without any answers. For about 24 hours after the seizure, she was also put on a BRAINZ monitor. The doctors didn’t see any obvious problems but the doctor who officially reads the data won’t be in until Monday afternoon.

Needless to say it was very disturbing to us. Things seemed to be going so well. We have asked a lot of questions but we don’t feel like we have a lot of answers yet. We have gotten used to seeing a lot of tubes and monitors on our babies but having probes attached to her head was a little hard. They have been removed now so it makes us feel more comfortable holding her. The good news is that in general she is still acting like herself. She was a little tired on Friday because of the anti-seizer medication but other than that, Amy has been able to continue feeding her and she seems to be doing well. We will update you when we know more.

As if this news weren’t disheartening enough tonight when we checked in on Brandon we got some more alarming news. He had accidentally been given 10 times the amount of Adavan (not sure of the spelling) than he should have received. They realized it immediately and where watching him closely. The nurse explained that they had a medication that would reverse the effects but it was much better not to give it if it wasn’t needed. One of the biggest things to watch was his breathing. A dose that was too large could even cause him to stop breathing.

I just called and he seemed to be doing really well. It has been well over an hour now and he is showing no signs of problems. They are going to continue to watch him very closely but the fact he wasn’t having any problems yet was a very good sign.

This is just what we needed…. more to worry about.

I will try and get some more pictures up soon. Oh and by the way Brandon is about 3 lbs. 1 oz. I will have to check on Katelyn again but I think she is around 4 lbs.

Saturday, September 15, 2007

Continual Progression

This week has been a little crazy. Amy has been on a very busy baby-feeding schedule.

7:00 am – Katelyn
11:00 am - Brandon (in SLC)
1:00 pm - Katelyn
7:00 pm - Katelyn
11: pm - Brandon (in SLC)
(1:00 am -bottle feeding for Katelyn – done by the nurses)

This has meant that her day starts at about 6:15 and we get home from Salt Lake about 12:45. And as you can see, there isn’t much time for taking naps. Both babies eat every three hours but part of the difficulty in scheduling is that they don’t want to do a nursing or bottle feeding back to back. They prefer to do a feeding through the tube in-between.

The good news is that things keep changing because they are both progressing. We just got a phone call from the pediatrician a couple of minutes ago. He is going to add a second bottle-feeding to her schedule. This may not sound like it will help the schedule much at first, but when we did the math we noticed that, because the schedule is now full for Katelyn we are forced to do three nursing/bottle feedings in a row. This will give Amy much for flexibility.

Katelyn is doing well and it seems like it might not be too long before we can bring her home. She just needs to continue to progress on her feedings. Most likely she will still need oxygen when she comes home.

Brandon is doing really well in his open crib. He continues to grow steadily and is always more and more alert. He really likes to be held and we certainly like to hold him. He did however have an eye exam and his eyes progressed to one step worse. However the doctor said that even thought they got worse there were signs of them getting better. He isn’t at the point where they would consider lazar surgery and the doctor seemed hopeful that they could still improve on their own.

Sunday, September 9, 2007

Happy Birthday

Derek Holding Katelyn. He is very gentle and he loves to hold her.

Another shot of Derek and Katelyn.

Brandon in a hat.

Mom and Dad holding Brandon.

Today Brandon and Katleyn are two months old. It’s weird to have two kids that are both two months old but yet we've spent so little time with them, compared to most parents with two month old babies. In some ways it feels like we have been traveling back and forth from hospitals for a year now but it still is strange to have babies this age that havn’t been home yet. I’m still not used to the idea that I now have four kids.

Katelyn’s big step this week is that the doctors added a fourth feeding. This fourth feeding was her first bottle feeding. The doctors also wanted to space these feeding out so that she alternates being feed through a tube and eating on her own. (They can regulate the amount of milk she is getting every feeding much better through the tube than they can we she nurses.) What this means is that we have much less flexibility in the times we need to be at the hospital. Amy needs to be at there to feed Katelyn three times a day but they have to be spaced out properly. This means that she is there at 7:00 am,1:00 pm, 7:00 pm and then the bottle feeding happens again at 1:00 am. She then needs to fit a trip up to Salt Lake to feed Brandon once a day. This can easily be over a three hour trip.

The exciting thing for me is that I got to give Katelyn her first bottle. That sounds easy but I wasn’t as good at it as I expected. The nurse didn’t seem to agree with me but I think all the problems were with the bottle and not me. After all, I couldn’t be that bad, could I. The milk seemed to flow out of the nipple pretty fast. I sprayed milk all over her face just by lifting the bottle to her mouth. I then needed to tilt the bottle down when she wasn’t sucking and tilt it up when she began to suck. It came out so fast that she dribbled a lot of it down her chin. The nurse kept telling me it was typical of a baby’s first bottle. They still need to learn how to drink out of a bottle even if they have been nursing for a while. However, I still felt responsible for the messy job. I’m sure my feeling of responsibility was also enhanced because the nurse kept correcting me when I wouldn’t tilt the bottle at the right times. In the end she ate well and she was very happy and content.

Katelyn has been very fussy after feedings. Well, fussy is an understatement. She screams. The doctors have reduced and then discontinued her vitamins. They have also given her a couple of different medication to help with gas. Amy has been put on a strict diet. So far something has seemed to help but she certainly isn’t content all of the time yet. However, her she has improved so it doesn’t seem to get in the way of a good feeding like it has in the past.

In addition to getting to the point where Katleyn is eating well we need to do several things before she can come home. Amy will need to spend a couple of 12 hour periods at the hospital making sure that she can feed Katelyn “on demand” and that everything goes well. In addition, just before she goes home we will need to spend a 12 hour (or 24 – I can’t remember) “rooming in” at the hospital to make sure that we know how to use all of the monitors and equipment and we can take care of her without any help.

Brandon took a big step this week. They moved him to a crib. There was a little bit of debate because some of the nurses felt he was still a little small to be in a crib. However the doctor was insistent. They started by turning off the warming of the isolette and watched is temperature. They also watched his growth. He did really well and he constantly grew over a period of a couple of days. Because he was doing so well they moved him to a crib. He seems to be doing really well and he looks good. One of the interesting things is that Katelyn is still in her isolette. It is turned off and she is maintaining her body temperature but she isn’t in a crib yet. They won’t move her until she gets a little bigger but she is still a lot bigger than Brandon.

Brandon is also beginning to nurse but he is still just practicing. He doesn’t get enough milk to be considered a feeding but he is showing good sings of learning to suck. We have got to hold him a lot more since he has been taken off the ventilator. He loves to be held and we can’t wait to get a chance to spoil him.

His eyes stayed the same this week. The doctors are quick to tell us that this isn’t a guarantee that they won’t get worse later but for now this is really good news.

Tuesday, September 4, 2007

New Doctors?

Tonight when we went to visit Brandon we found two new doctors ...

Both Brandon and Katelyn are doing well tonight.

Monday, September 3, 2007

Everything is moving fast – even if it's really slow

Having such premature babies in the hospital is a long and slow process however, at times, things seem to move fast. A lot has happened since I last updated.

I will start with Katelyn. She has been growing and learning to eat. She had her second eye exam and her eyes hadn’t changed. This is good enough news that the doctor didn’t plan on coming back for a couple of weeks. We did get a call a couple of days ago from the doctor who told us that Katelyn wasn’t looking good and her oxygen needs were swinging quite a bit. As we know, this can be a sign of infection so they ran some tests. It turned out that her hematacrit was very low (26). They ended up giving her some blood and now she is looking good and doing great. The boys even got a chance to hold her this weekend. They were very gentle and very, very excited. They are going to be great big brothers. Derek always announced himself on his visits by saying “Hi Katlyn. It’s me, Derek.” I have put some links to video of the boys holding Katelyn. Again they are big files so I suggest that you only click on the links if you have a good Internet connection. 4.7M - Brandon immediately after extubation 11.8M - Blake holding Katelyn 16.2M - Derek holding Katelyn

Katelyn’s care has been turned over to a pediatrician and she is no longer seen by a neonatologist. She is doing great on her feedings. Amy is going to begin to nurse her three times a day, starting today. While this is great progress for Katelyn she isn’t a fast eater because she needs a lot of breaks so these feedings take a lot of time. This means even more trips to the hospital until Katelyn comes home. The other news, that produces a mix of excitement and fear, is that they are already talking about the possibility of sending Katelyn home in a couple of weeks.

Her last weight was 3 lbs 11 oz.

Last time I posted we learned that Brandon had an infection. Because of the devastating effects that Brandon’s past infections had on his progress, this news seemed very disheartening. The good news is that they caught it very early and he responded very well to the antibiotics. His oxygen needs have been good and he was looking really good. He has been growing a ton. His weight today was 2lbs. 15 oz.. It has been surprising to us how fast he can put on weight. We even got to hold him a couple more times this week. Over the weekend, we talked to one of the doctors and asked about how soon we could possibly extubate Brandon again. He hesitated to give us a prediction, especially because a new doctor would come on this week. However, we forced him into telling us it might be a week or two.

Brandon’s ventilator has been alarming a lot. He still has a leak. It is much better than the previous leak but he certainly hasn’t been getting all of the benefits of the ventilator. This means that it is hard to tell the amount of oxygen he really needs because his current setting is higher than what he is actually getting. This morning at rounds was one of those times when things seemed to move fast. The doctor looked at the leak and saw how stable he had been. They discussed it for a moment and decided they might as well extubate him today. They asked when his next feeding would be. It scheduled for about an hour. They didn’t want to feed him close to the time of extubation so they decided that if they put off his feeding by 15-30 minutes that they could extubate him right then. In about a half hour he was off the ventilator and seeming to do great. He really seemed happy and it seemed to us like it was much less effort for him to breath. We will continue to check and see how he is doing but we are very optimistic this time.

He is much bigger than he was last time he was extubated. In fact a couple of days ago his tube was re-taped to his mouth. We noticed that this new taping job squeezed his cheeks together and we thought it made him look like he had chubby cheeks. The funny thing is that today, when they took of the tape he actually did have chubby cheeks. He looks very cute without the tape on his face.

Brandon also had another eye exam. His news wasn’t as good as Katlelyn’s. His eyes are a little worse. He still isn’t in the danger zone but the problem is that the problem is progressing. They will check him again in a couple of days and see how his eyes are doing.