Thursday, August 30, 2007

One up and one down

Katelyn sleeping after a feeding

Brandon getting some rest

Katelyn is doing well. So well in fact that they moved her down to the lower level nursery. She is working on learning how to eat. She is doing really well but she has better days than others. Sometimes she just doesn’t want to suck for very long. She is really cute and the nurses seem to fight over who gets to take care of her.

Brandon has had a set back. For the last couple of days his oxygen needs have been really erratic. One minute they are very low and a couple of minutes later they are really high. Yesterday morning they decided to run a bunch of test to see what is going on. They figured out that he has an infection. It could take a couple of days before they know the details about what kind of infection and how bad it really is but they have started him on the generic antibiotics. They could start to see an improvement in some of the numbers as soon as within 24 hours. We will keep you posted.

Also, his hematocrit was a little low so they gave him some blood last night to help him along.

Needless to say, this will set him back on his schedule for getting extubated. Infections in a little guy like Brandon can be dangerous so they will need to concentrate on getting him better before they can even consider making other changes. As we have mentioned, the doctors have warned us there will be set backs but it still is hard as a parent not to think that we are past the set backs and then when you hear something like this it can be pretty depressing.

Monday, August 27, 2007

So good it’s kind of scary

Brandon has been doing much better on his bigger tube. For the first couple of days he seemed to need a lot of rest but lately his oxygen needs have been dropping. He still is small but he has been growing well in the last couple of days. Two nights ago he put on a whopping 100 grams. The nurses assured us that with that much weight gain he was sure to loose a bit the next day. (Weights can vary depending on things such as when they filled a diaper last.) However, When they weighed him last night he gained another 40oz. The nurse said she stripped him down and tired it a couple of times and weighed him a couple of times because she didn’t believe it. He weighed 2 lbs. 5 oz. last night.

This news was a little concerning to us because in the past, rapid weight gain could mean that there are other problems but they assured us that everything seems good and they believe that this is legitimate weight gain.

The other part of good news is that because he seems to be doing so well, they will consider extubating him (taking from a ventilator to a C-Pap machine) as early as tomorrow. Also we both had a chance to hold Brandon yesterday for what I think is the third time. He really likes being held and it is difficult to put him down. We finally had to get kicked out because it was time for shift change.

Katelyn started learning to breast feed yesterday. Amy will be visiting her two times a day for a while. She has now tried to Breast feed several times and has met with varying success. She is easily distracted and it is hard to get her to eat the entire time. Katelyn is weighed before she eats and then again right after so that they can determine how much she has eaten. The good news is that on the attempt that seemed to be the most unsuccessful she still got about half a feeding on her own. (They then feed the rest to her through her tube). She has doubled her birth weight and now weighs 3lbs. 4 oz.

She is doing well enough that they have already contacted the pediatrician to have her come in and begin monitoring her progress. It certainly could still be a while before she goes home but this is a good indication that she is doing well. It is kind of scary to think about having her come home. I have gotten used to relying on monitors to know how well she is breathing and what her heart rate is. I think it will take a while before I don’t panic at everything without those monitors to let me know how she is doing.

I’ll get some more pictures up soon.

Friday, August 24, 2007

We went to see Brandon tonight and his night nurse told us that they decided to go ahead and re-intubate with the bigger tube. His air leak was up to 90% which means that he is loosing 90% of the support. So after we left they made the change and we just called his nurse and she said it went fine. Hopefully this will give him the support he needs to rest up and grow so he can breathe on his own soon.

More stuff to watch for

Blake and Derek think that the best part of thier first soccer game was the refreshments.

What? My brother's are coming to see me!

Derek kissing Katelyn

Blake kissing Katelyn

Close up of Katelyn

The boys and Katelyn

Amy holding Brandon while they switched his bed.

Close up of Brandon from when they last tried to extubate him.

Both Brandon and Katelyn had eye exams recently and they found things that will need to be monitored closely. They both have mild retinopathy of prematurity (ROP). This means that the retinal vessels have begun to grow where they shouldn’t. Babies with their level of severity usually don’t require treatment and the eye heals within the first year of life. However it is just one more thing that they will be monitoring closely and watching to see if it gets any worse. The potential problems can range from needing glasses, even as a child, to blindness (although blindness seems to be really rare and only in very severe cases).

Katelyn is doing well and she continues to have her feeding time shortened. She was scheduled to have her second of three injections to treat the hemangioma on her lip. However, when the doctor saw how small it had gotten he was very shocked. He said that this kind of progress was “off the charts” and he didn’t think that she will ever need another injection. He will continue to monitor her but it was great news.

Brandon seems to be doing well but we are certainly more worried about him. The tube that he is using for the ventilator is leaking. It seems to be too small for his airway but the next size up would be too big. They have adjusted his ventilator to compensate for the leak and are hoping that they will be able to try extubating him again before they have to pull his tube and re-intubate him.

The biggest thing with Brandon is that he needs to grow. They have been increasing he amount of calories in his feedings and he is tolerating it well so they went up another step today. It is hard for a baby so small and with as little muscle mass as he has to breathe. He is working hard and most likely burning a lot of calories just breathing. He is growing slowly but he is still small.

Wednesday, August 22, 2007

A step back

Overall both Brandon and Katelyn are doing well. However, Brandon has been struggling and so he was re-intubated today and placed back on the ventilator. He has been on the borderline to returning to the ventilator ever since they took him off. He has to work to hard to breath. His recent X-Rays have shown “wet lungs” and this can also make it even harder to breath. They gave him some medication and adjusted his fluids. Even thought it didn’t keep him off of the ventilator his lungs looked much better today. The deciding factor was his blood test done today. His CO2 levels where high and that is an indication that he isn’t exhaling what he should. The doctors and nurses worked hard to keep him off the ventilators, not only because it is good progress, but also because the longer he is on a ventilator the more damage can be done to his lungs. While it was disappointing it really isn’t that bad. They will give him a while to rest and grow and try again soon.

Katelyn is progressing well. They have been reducing the length of her feedings. They went from continuous to three hours of feeding and one off. Yesterday they took the next step went to 2-hour feedings. She is handling it well and they should take the next step soon. Here hemangioma seems to be responding well because it is getting smaller.

Katelyn is getting spoiled already. She loves to be held and suck on her pacifier. She also can get quite mad when anyone is bugging her. Tonight she was really mad when I was changing her diapers but then she took a bath. She LOVES taking a bath. She quiets right down and sits calmly, right up until the time when we take her out. Below is some video of Katelyn taking a tub bath. It is a large file (15M) so I would only suggest downloading it if you have a really good internet connection.

Something interesting:

We have gotten to know many of the nurses well. One of them was telling Amy some interesting stories. Occasionally a NICU parent will bring in baked good for everyone to eat. This particular nurse won’t eat them unless she knows the parents really well. That seems reasonable but the reason why shocked me. On more than one occasion the mother would announce, after the food had been eaten, that now everyone had extra anti-bodies because she had used her breast milk to bake. Really. I’m not making this stuff up.

Sunday, August 19, 2007

Extubation and a first bath.

Once again, we had a very busy weekend.

Katelyn has a lot of spunk. She also didn’t like her C-PAP mask very much. She would constantly fight it by wiggling around until it was loose. The mask spent a lot of time not hooked up correctly but she continued to do well without it. During one of Amy’s quick visits the nurse decided that enough was enough. It was time to get rid of her mask an move to simple oxygen. In addition to making fast progress we can now see her face even better. They also switched out her feeding tube today to the type that goes through her nose. It is much smaller and now she doesn’t need the tape on her lip. So today, we can see her even better. I will put up today’s pictures soon.

She has learned how to cry quite well and she loves to be held. She is already getting spoiled so we are going to have our hands full when she comes home.

Even before they switched her feeding tube she had progressed to the point where she could have her first tub bath. She really liked it. She calmed right down when she was put in the warm water. It was really fun to watch all of her reactions.

Brandon took a really big step. Once again they decided to extubate him (take him off of the ventilator and put him on C-PAP). For a moment we got to see his un taped up face again. As before, the C-PAP is much bigger but it is a big step and is much better on his lungs than the ventilator.

It has been really hard work for him. It went well, but it certainly hasn’t been easy. He has pushed it a couple of times and they he has been close to returning to the ventilator. While it wouldn’t be tragic for him to be re-intubated and go back on the ventilator they are working hard to avoid it. His lungs really need some time to heal.

We sat and talked with the nurse practitioner for a long time about the approach to getting him to grow. He had x-rays taken of his lungs that didn’t look great. They believe that one of the major problems is that they have been giving him more fluids than they normally would like. They need to keep a certain amount of fluids flowing through the PIC line (a deep IV) in order to keep it in. They feed Brandon his non-food nutrients through this tube. The breast milk feedings have reached a level where, in order to keep the fluid levels where they need them they would need to reduce the amount of fluids going through the PIC line lower than what they can do. So, what this confusing explanation means is that they might take out the PIC line soon, they are increasing his feedings and lowing his overall fluids. They hope that all of this action will result in it being much easier for Brandon to breath and grow. We also asked when it would be reasonable to expect to get Brandon home. Of course, no one knows, but the nurse felt like we might want to think about November or December instead of his due date in early October. We expected this but is just sounds so far away.

As of our last call tonight he was doing well and it has now been well over 24 hours since he was taken off of the ventilator.
Oh yeah, and Amy was recently asked by a doctor if she and I where related. It was a "just checking" type of question because it could effect some test results but the interesting things is that they don't always get a "no" answer from all of the parents.

Big yawn as Brandon is getting ready.

Look Mom- no tubes.

Hanging out in his new C-pap mask.

Close-up of Brandon and his new contraption.

Katelyn snuggling with her mom.

Katelyn's first bath.

She really liked it.
Crazy toungue and wet hair.

Katelyn's first outfit.

She also likes the pacifier.

Friday, August 17, 2007

Making Progress

Brandon holding Dad's finger
Katelyn with her CPAP on in her Dad's arms

Brandon in his Dady's arms


Brandon and Mom

Brandon and Mom (look at that white hair!)

The T-tube that was in Brandon's gut.

Brandon snuggled up on his belly for the first time.

Mom enjoying his contentment as much as he is

Katelyn is doing great and making good progress. She is growing and is very close to 3 lbs. She was moved to a new bed and they are even talking about taking her off of the C-pap machine soon and we will be able to see a lot more of her face. She received her first shot to help treat the hemangioma on her lip. The doctors feel confident that with a couple more weekly treatments it should go away in a couple of weeks.

It will still be a while before she comes home. Her next big challenge will be working on feeding. Right now she is being fed continuously through a tube into her intestine. The process of moving her feedings to her stomach and then from a continuous feed to regular feedings and then on to nursing can take quite a while. They said that it is often difficult for most babies to be proficient and nursing before about 36 weeks (gestation age). She is only 32.5 weeks now. It also can take much longer than that, so for now we can’t really count on any dates but we are certainly happy with her progress.

Brandon had a big couple of days. On Wednesday he had a final contrast study to see how everything was moving in his bowels. It looked good and on Friday they removed his T-tube. He seems to be doing really well. Brandon appears to be very content now that it has been removed. They want to watch him to make sure he doesn’t get an infection from that area where they removed the T-tube. Once they feel confident about that, they are going to work quickly to take him off of the ventilator. It might be possible that it will only take a couple of days before they try again. They are however slowing down on the amount they are increasing his feedings each day. Nothing to worry about but he showed some signs that made them want to move cautiously. I can’t remember what his last weight was because he goes up and down all the time but he is growing and is somewhere around 2lbs. He is doing so well that the nurse told us that she was going to ignore us during our visit while she took care of the babies that needed more attention. It was nice to hear this because for a long time, he was the baby demanding a lot of attention.

One great thing for us is that now that he has his T-tube out we were able to hold him for the first time. It was a pretty exciting event for us. He also seemed to really enjoy lying on his stomach for the first time.

Even more good news….

As I was posting this I got a call from Amy. She was holding Katelyn and her mask seemed to be bugging her. You can see why if you look at the pictures above. The nurse decided it was time to downgrade her mask to a little tube in her nose. She seems happy and we can see her face much better!

I almost forgot to mention. They have tested Brandon looking for a potential long-term problem. We got the tests back yesterday and they where all negative. Of course there is always a chance of problems but this was a big relief for us. It was a really good day.

Tuesday, August 14, 2007

Brandon's Photos

I feel obligated to post these photos because I told everyone that we took them. However, I think they are all really bad. While the disposable camera had a huge effect I can't blame everything on them. They are also taken from really bad angles. The lighting is bad and they are blurry. The worst part is that they don't show you how cute he really is. I promise. He is really cute.

Monday, August 13, 2007

One Month!

We have had several very busy days since my last post. I should post more often but I usually fall asleep before I get the chance. One big milestone is that on the 10th Brandon and Katelyn turned one month old. It is strange. On one hand it is weird that they are a month old yet so far from coming home. One the other hand, it seems like we have been driving back and forth from hospitals for about a year now.

Let me start by giving an update on Katelyn. Last Thursday they decided to change Katelyn to the VIP ventilator. It is similar to the Dragor that Brandon was on because it allows the baby to breath more normally. The ventilator allows the baby to breathe more on thier own. Another benefit of this ventilator is that they can more easily move the baby. This means that on her 1-month birthday Amy was able to sit in a rocking chair and hold Katelyn for the first time. I got a turn two days later.

On Friday the nurses noticed that the placement of the ventilator tube wasn’t ideal. In an attempt to better position it, they accidentally extubated her(pulled the tube out) . In the time it took to re-intubate her they noticed that she was breathing really well on her own. They even considered just putting her on a c-pap machine but decided that they had just switched her to the new ventilator and it might be too much at once.

Katelyn is a very active girl. When she gets upset she really puts up a fight. When she is on her stomach she kicks hard enough that she can actually move around her isolette. I like to think that she is crawling already. That spunk can cause trouble already. She again pulled out her ventilator tube at about midnight last night but this time they decided to leave it out and just put her on the c-pap machine. She must have been trying to give them a message because she is still doing well this morning. They just hope she doesn’t get mad soon because when she is “crying” (previously without sound) her breathing isn’t quite as good.

Brandon also has had a busy couple of days. They took him off the ventilator Friday afternoon. We got the call and rushed up to see him. We got to see his face for the first time without it being covered with tape. We also got to hear him cry for the first time. Now, I need to clarify. They often have to point out that we just heard a cry. When they have been on a ventilator for so long it is much more of a little squeak than a cry. We went up in a rush so we didn’t have our camera. We picked up a disposable camera and we hadn’t developed the pictures yet. I hope to get them developed today.

Brandon did very well. He had an x-ray that didn’t look perfect before he was removed from the ventilator. They knew it might be pushing him a little but they decided to give it a shot anyway. He did really well for about 4 hours and then he got tired. He quit breathing as well as he should and he just wasn’t exchanging gasses well enough. They put him back on the ventilator and they will let him rest and grow. They plan on trying again in about a week. They have been increasing his feedings and he is doing really well. We will just have to watch and see how well he grows and matures this week.

One day we sat and talked with Brandon’s nurse about how amazing it is that he is doing so well. She told us how she talked with the nurses that took care of Brandon for the first couple of days and they all where pretty certain that he wasn’t going to make it. While we still have a long road ahead of us, I need to remember how incredibly lucky we are that everything is going so well. Before he comes home he still needs to have the T-tube removed and two other surgeries. He needs to have a hernia fixed and have his bowls closed back up. The good news is that once he gets bigger these are not very risky surgeries. One of the major concerns will be to try and keep him infection free during all of these procedures.

Wednesday, August 8, 2007

Another good day


Monday Brandon had a “contrast study” done. In order to do the test, they needed to take him down to radiology on the first floor. They needed to put die into his system to see how well it moved through his bowls. He had trouble last time when he was moved from one room to the other. Because of this previous experience with moving Brandon, it made us pretty nervous. Amy was there and the move seemed to go very well. She was able to go into the room to find out what the results.

There often seems to be a communication problem between all of the doctors and nurses. When the Dr. first came in the room he wasn’t happy that they had gone ahead with the test that day and they also hadn’t done exactly what he wanted. However, they worked it out and the results where good. In fact they began feeding Brandon shortly after and he is up to 3ccs today. He is tolerating real feedings well and everything seems to be working.

In addition, he has been doing really well on his ventilator settings. There is even talk of removing him from the ventilator soon. I’m looking forward to seeing him for the first time without tape on his lip and hearing him cry for the first time.


Katleyn is also doing well. While she still has a significant amount of secretions, some of the other numbers are dropping and showing that she is improving. Most of all she is still really cute and Amy got to hold her for a while today. We get to lift her to weigh her and change her bedding but we haven’t had many opportunities to hold her for and extended period of time.

She is growing fast and so she is much bigger than Brandon. We talked to a nurse the other day that has 17 yr. old twins - a boy and a girl. One of the interesting things she mentioned was that the girl was bigger than the boy. As girls do, she matured first and so for a while she was a lot bigger than her twin brother. In high school he caught up but for a while he was teased because his twin sister was so much taller. This story reminded me how different and experience it will be to have a boy and girl rather than two boys.

Monday, August 6, 2007

Weekend wrap up

Both Brandon and Katelyn are doing well today.

Katelyn continues to have a lot of secretions. She is doing well clinically and doesn’t show many signs of problems but they have restarted her antibiotics just in case. Amy had a long talk with the doctor about what lies ahead. The big challenge of the next month will be getting both baby’s lungs strong. It will just take time and they will try a lot of different approaches. Katelyn now weighs 2 lbs 9 oz.

Brandon was doing really well on the new ventilator. However, last night he had a bad incident. His blood pressure dropped. His oxygen needs shot up to 100% and they even needed to “bag” him. (They had to hand squeeze the air into his lungs because the ventilator didn’t cut it.) He returned to normal pretty quickly and did well the rest of the night but this all sounded very scary to us. We went up this morning to be there when the doctors did their rounds. When we walked in his oxygen needs were down to 25. He has never been this good. As we talked to the doctors they could take guesses at what happened in the night, but of course they didn’t know for sure. They seemed to believe that everything was good before and everything was good after so they thought it was an isolated incident. They assume it was something like getting mucus stuck in his airway. He did seem to be doing really well. They also had given him albuterol to help clear up his airways and it seemed to be really effective. They are going to watch him close but he actually seems to be doing great now. Brandon weighs 1 lb 13 oz. today.

An interesting note about the sensitivity of the monitors: Amy was taking Brandon’s temperature by placing a thermometer in his armpit. Of course he doesn’t like this much and started wiggling so she had to hold his arm still. Just the pressure of Amy holding his arm close to his body set off alarms because his lung wasn’t expanding enough.
Both Brandon and Katelyn have needed a lot of blood over this first month. They even began to get transfusions before their were born. Because they also needed a lot of tests done, a lot of blood was taken from them. They don’t have a lot of blood to start with so just taking blood for tests often meant that it needed to be replaced. Up until recently Brandon had to be typed every three days in order to make sure that his blood type matched perfectly with the donor blood. They have stopped this now but it still seems ridiculous to take a good amount of blood to determine his blood type every three days. The intresting part is that, until recently, it kept changing everyday. Not the main blood type, but the antibodies would change

Saturday, August 4, 2007

How are they today?

Only the pink bows stay in her hair very long. Amy thinks it is because she likes pink. Just an interesting note: when everyone sees these guys for the first time they are shocked at how small they are (particularly Brandon). They say that the pictures don’t really show how small they really are.

Today is a good day.

Katelyn continues to do well. The doctors feel good about her steroid treatment and her oxygen needs seem to stay low. She has a good grip and loves to hang on to her mom's finger. She also has spend a lot of time with her eyes open and she loves to suck on her pacifier. Her hair seems to grow fast. I keep telling her to put her growing efforts elsewhere but she doesn't seem to listen.

We went up to the hospital on Friday morning to be there for rounds. The doctors discussed the switch to the new ventilator for Brandon. We felt good about it but we were still a little apprehensive. They switched him over after lunch and things seemed to go well. Shortly after the switch his oxygen needs dropped even lower than they where on the other ventilator. However there was one short period that evening when his oxygen needs jumped to 100% then came back down. When we called the hospital in the middle of the night he had also jumped back to 100%. The good news is that they figured out that when they suctioned him and cleared everything out he quickly dropped down again. So Today is oxygen needs are lower than they have been for a long time and he is now doing well on a ventilator that allows him to do more breathing on his own. It is much more like normal breathing.

We also learned that the plan is to do a “contrast” test on Brandon on Monday. They will put a dye into his T tube (in his stomach) and they can see how well things are moving. If everything looks clear they can remove the T tube from his stomach and he might be able to begin feedings soon. This is a big step for a little guy with so many bowl troubles.

Friday, August 3, 2007

Thank You

We would like to thank everyone for all the help we have received. Our neighbors, friends and family have done so much and I don’t think we will ever be able to repay everyone.

We also know that many of you want to help and you may feel like you haven’t been able to do much. You have helped more than you realize. I’m confident that Brandon and Katelyn are doing as well as they are because of your prayers. We have felt the direct effects and this has been exactly what we needed. There are so many people who have been praying intensely for our babies that it would be difficult for us to thank everyone personally. I feel like thanking you namelessly over a blog is so inadequate when compared to the amount of help you have given us but I want everyone to know that it has been working. It may not feel like you have helped much but you have.

Thursday, August 2, 2007

Blake and Derek

Blake and Derek seem to be handling things pretty well. We work hard to make sure that we spend good time with them and we explain what is going on. They also have been very interested in visiting Brandon and Katelyn. Our family visits have been fun.

One of the things that both hospitals offer is a class for the siblings of NICU patients. They spend about an hour doing crafts. They also spend time explaining all of the equipment and tubing that is often around the babies. One method they use is giving them a homemade doll. They can color these dolls. They put monitors on the dolls and explain to the kids how they work.

This is a photo of the dolls that our boys made. If you notice they choose to put the face on the backside so the hospital gowns open in the front. And of course, they have also chosen to make them anatomically correct with thier markers. Seeing Katelyn has also brought to their attention the differences between boys and girls. All of this may sound typical of a 4 year old but for those of you who don’t know our boys well; they like to talk to everyone. This means that all of the nurses and workers at the hospital get to see and hear about their dolls and they get to know if their “baby” is a boy or a girl. I guess we need to work on teaching them when it is appropriate to talk about stuff like that.

Today’s update:

A close up of Brandon. Notice how good his coloring looks. The room is a little dark and we hate using the flash too often because it always startles him so we haven’t put up too many good photos of Brandon.

Katelyn is getting big. She is almost 2 lbs 7 oz. The doctors were concerned about putting Katelyn on a big dose of steroids because of all of the potential side effects. However, after a lot of consulting, they learned that the recommended dose was rather small. They also realized that the hemangioma only became apparent and began to darken after they changed the steriods they were giving her for something else. It was a little different steroid than the dermatologist would normally have recommended but everyone feels comfortable putting her back on same thing that seemed to be working previously. Most likely the steroid treatment will need to last for a long time, up to a year.

The pediatric dermatologist is hard to get an appointment with. The doctor suggested that we call and arrange and appointment when Katelyn is taken off of the ventilator because it is typically about 1 month after that time that babies can go home. This was interesting news to us because we had never heard this estimate.

Brandon isn’t growing much. It isn’t incredibly alarming but the doctors are going to see if they can give him a little better nutrition. It sounds like he won’t begin feedings until after they have removed the t tube from his stomach. We need to talk to the surgeons to see how long they think this it will take until he is ready. By the way, the surgeons have been really happy with his progress.

We also learned that they are going to move Brandon back to the Dragor ventilator. This slightly alarmed us because it hasn’t been successful the last two times. The Doctor took the time to explain that he believes that the other attempts where complicated by other problems, like infections. He also explained that he is concerned about damage that may be caused to his lungs because he has been on the oscillator for so long. With this explanation it sounds like a logical step. It will be a big step in the right direction. They are going to try it tomorrow morning so everyone cross your fingers and say a little prayer.

Three weeks and two days - Update

Katelyn is doing well. In fact she has done remarkably well with her feedings. It is uncommon for a baby as premature as she is to get to full feedings so quickly and without any setbacks. She is growing and is over two pounds now. She is till fighting the last bit of her pneumonia. She has a bunch of extra secretions and they have done a couple of deep tracheal suctions to help clear her out. They have also switched to a new ventilator (a Jet) that is better at clearing everything out. She has an occasional swing on her oxygen needs, but for the most part, her settings are really low.

The new development with Katelyn is that we have discovered that she has an hemangioma on her lip. At first it looked like she had a bruised lip but it has been getting darker. As I understand it, they are caused by a large collection of blood vessels in concentrated area. They are fairly common, especially in premature babies. The dermatologist looked at Katelyn. Just like everything seems to be, there are no definitive answers. It could go away or it could get bigger. They typically grow in the first year and then shrink. The standard numbers are at 3 years 30% are gone. At 5 years 50% are gone and at 7 years 70% are gone. Katelyn's is a little concerning because it seems to be growing now and it is on her lip where she could bite it when she eats. It sounds like they may give her some steroids to help keep it from growing too big. She is already taking the steriods for other stuff, so it may just be that she needs a larger dose.

Brandon is also doing well. He had a bad spell where is oxygen needs went up. For a while he was hovering around 70%. They had been weaning him from the nitric oxide. They couldn’t see any more pulmonary hypertension. However, because his lungs have been a little hazy and because he has so many tubes and things going on around his abdomen, the echos haven't been as easy to see everything as they would like, so they have been cautious. He came off the nitric oxide completely and his latest echocardiogram looked good. It is common for oxygen needs to increase after discontinuing nitric oxide. However, Brandon was still higher than we wanted him to be when he was at 70%. He dropped some and hung out at around 50% yesterday. They gave him another drug to help and he dropped last night into the low 40’s.
The good news is that he is looking really good. They are also weaning him a bit from his pain medication so is more alert more often. He looks so much better.