Close to home

We spent the weekend at the Ronald McDonald House near Primary Children’s in SLC. It turned out to be very helpful. Amy was nursing Brandon 4 times a day and taking care of Katelyn in between. We had big plans to do a lot of fun stuff when we were up in Salt Lake but we were busier than we expected. However, we did get a chance to go to the children’s museum. The Ronald McDonald house is great. The rooms were pretty modest but they had a lot of entertainment. They had big screen TV’s on every floor, a game room in the basement, movies to check out and watch, free passes to the zoo and museums, They had a large kitchen with a completely stocked refrigerator and every evening a new group came in and cooked dinner. It made our life much easier last weekend.

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.

Thanksgiving 911

I posted to the blog in the morning but the rest of the day didn’t go so smooth...

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.

Happy Thanksgiving

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.

Brandon:

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

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.

Right now we can't seem to get enough sleep. Here are a couple of sleeping pictures.

Even better

Things continue to improve with Brandon. I let so much time go by between posts that I have to go back and remember what happened.

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.

He continued to improve and he had some really good days but his recovery still wasn’t as fast as we hoped. He lost a lot of the extra fluid and he started looking and acting like Brandon again.

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.

A Happy, Happy Birthday

You can see the scar from his latest surgery.

Holding Brandon, even while he was on the ventilator.

Brandon and Katelyn turned 4 months old on the 10th. It was a good day. It’s still weird to have babies that are four months old but are only 1 month older than full-term.

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.

Give me some of that Popcorn!

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.

Getting better

Brandon's latest room - he's been moved a lot.

Yes. I know what all of it does.


This was taken a couple of days ago. He was even more swollen at one point than this. Notice his new scar on his left side. This is where they removed the air. It's small and should heal well.

Until today, we haven't been able to hold him for three weeks.

This is Derek visiting in the hospital on Halloween. He wore a costume to the hospital several times, even before Halloween.

Notice the Batman costume that Derek and Blake made for Brandon. We just laid it on him.

vThe boys on Halloween night.

A moment without a nasal canula. We replaced it soon after. The doctors are hopeful that, over time, her lip will completely heal.

Wating in the car.

Getting some energy out on top of the parking structure at the hospital.

View from the top of the parking garage.

Katelyn from above.

The last couple of weeks have been really hard. Brandon has been very sick and recovering slowly from the surgery. The actual surgery seemed to go well but he got an infection and it really affected him. His lungs have also had a lot of problems. Because he has been on a ventilator for so long they are pretty damaged and he is feeling the effects.

Today he is doing much better. Amy was able to hold him for the first time since his operation. A couple of days ago they switched him to a different ventilator and he really seems to be doing better. He still has moments when his oxygen needs jump up but in general they have drastically improved. His eye exam last week was great. The doctor said that he has fully healed and the operation was a 100% success. I don’t have a picture of him today but his swelling has gone down a lot in the last couple of days. We are also once again really excited about pee and poo. Brandon has been doing both well. They have begun feeding him (through a tube) again and he seems to like it.

We will have to be cautious not to go too fast because his bowls may need time to adjust. This is particularly true because the two pieces that were re-connected where very different sizes.

Over the last week we have a lot of scary moments. At one point they thought that they had found a second air pocket outside of his lungs. They also had a positive test for a yeast infection in his blood. This would have been a very big deal because it would have been very be hard to fight and could spread all over. However, the microbiologist that was working on his culture noticed that a second baby had tested positive for the same thing on the same day. She wasn’t confident that he actually had the infection. She was worried that he had been through so much and that this would prompt all kinds of other tests. Because of this, she through out the tests and started over. So far it has all been negative. Even more importantly Brandon seems to be improving.

We still want Brandon to loose weight because he has been so bloated. As of yesterday he weighed 3270 grams (7lbs. 3oz.). He’s bigger than his sister but the hard part is knowing how big he really is under all of the excess fluid.

We are constantly reminded that despite all of the challenges that Brandon has had, he continues to fight through all of it. I’m confident that the prayers of friends, family and even strangers have played a big part. One of the nurse practitioners had a special request. She asked if we would say a couple of prayers to help her know how to best treat Brandon.

Katelyn is doing well. I would hope that she would grow faster but she has been healthy. The biggest problem she has is that she doesn’t like to lay in her crib. She likes to be held. She seems to have a tough time lying flat after she has eaten but I also think this has turned into being very spoiled. She will sleep great in our arms but through a fit if we put her down. This is making for some very long nights. She is also getting a little fussy and not wanting to take her bottle. I’ll have to be more vigilant and make sure we can continue to give her a bottle.

She is still on a low amount of oxygen and also on a monitor. However, she loves to ride in the car and she does well on trips to the hospital. We have been told not to take her into public places, or have many visitors to our home for six months. Because of this we often take her in the car when we go see Brandon. We leave her in the car and take turns visiting Brandon.