April 7th Update on Kaden

Today has been one of the emotional rollercoasters for me. It started off really good--we went to see Kaden this morning and his color was really pink and his stats were where they needed to be. He was making urine (still could make some more), and looked a little less swollen. Around two o'clock the pulmonary doctor came in to talk to us about putting a scope down his trach tube to get a look at the air sacs in his lungs and to see if she could flush out some mucus. I guess I was expecting to come back and them to tell me that they had gotten alot of mucus out of his lungs and it would help get his air sacs back open, but that was not the case. She said she did see alot of mucus--I am crushed :( I don't know if I am expecting to much, to fast, but I feel like we are so under the gun to make progress, that if it isn't made quickly that they may tell us there is nothing more they can do. Dr. Liz said no matter what we should have a "sit-down" meeting with all the doctors to discuss his condition--that in itself terrifies me. I don't know if I want to discuss it. I just want him to improve every day and I don't want to hear any negatives. They know he has lungs from the x-ray that was taken on Friday when he was born, it is just about getting it to open back up. I just feel so helpless, and am trying to stay positive, but I feel myself crumble at any news I don't consider to be an improvement. They must be letting him wake up a little bit because we can see him move his chest and his hands and feet a little. I would give anything just to be able to hold him.

The nurses and doctors here at UCSF have been nothing short of fabulous to us and Kaden. We do feel like he is getting the best care possible and they are doing all they can for him. They are very compassionate and caring people. I was also discharged today, and they had no extra room for us so Craig & I are sleeping in the waiting room tonight. At this point I would sleep on the floor if I had to--we cannot be far from the hospital and it takes to long to get here in an emergency from Fairfield.

Please, please, please continue to pray for Kaden's lungs to start working. Everything else is working, and it is so frustrating that this seems to be the only problem that he has (albeit a BIG ISSUE--functioning lungs). We really need his air sacs to start opening...

I got to change a poopy diaper!!!

I know it seems like I post alot, but I find it very therapeutic. We went up to see Kaden a little while ago and I got to change a poopy diaper--I really never thought I would get that excited about changing a diaper under any circumstance. Kaden is feeling all your prayers. He is really hanging in there and fighting hard to make baby steps in the right direction. While we were there, his doctors (Dr. Liz & Dr. Roberta) decided to try to see if it was mucus in his lungs that was causing the collapse, and IT WAS! So, after suctioning out some of it, they are now going to try and give him breathing treatments every 4 hours. This will hopefully help with being able to re-open his air sacs. Dr. Liz just left our room. She came by to talk to us on her way home. She (and everyone else) has been so great to us and Kaden. I think she has a crush on him! She said that we should be encouraged by the fact that his body is really doing quite well under the circumstances. His heart is working great, his organs are functioning well, and his brain scans have all come back clear. We just have to get over this lung tissue issue :) Here is his pic from this afternoon. You can see he is very swollen, and his little eyes and "fish lips" look so painful, but if you see any pictures of other babies on ECMO they all look the same. He is still the most beautiful thing I have ever seen...


Please continue to pray for lung functions and pee pee making. We definitely feel God with us, and Kaden is fighting so hard--he must be listening to all the "CDH Angel Babies" whispering in his ear that he can do it!!

On a side note. We got to meet the family across from Kaden's isolet. Their son, Collin, was born on Thursday with undiagnosed RCHD. He was brought here Code-3 from another hospital about 30 min. away. He has been doing well and is having his repair surgery as I type. I cannot imagine what it was like for them without any warning. They are a young couple and have a 1 year old at home as well. Please include Collin in your prayers--that he does well with the repair and has a quick recovery.

Kaden Needs LUNG PRAYERS!!!

Where is Kaden? Can you believe all this for one baby?

We got to "touch him softly" this morning :)

Daddy is VERY NERVOUS about moving any of his tubes...

I just want to give a quick update since we saw Kaden this morning. He is really retaining fluid from the ECMO, and he was peeing (the pee-pee prayers are working), but they cannot tell anything about his lungs since he has so much fluid build up. The doctors said that this is a very common occurance, but at this point his lungs are collapsed because of all the fluid and in order to see what air sacs he has developed, they have to get the fluid levels down. He looks like the Michilan Tire Man, but he is still so beautiful. Please pray specifically that his lungs start to respond to the fluid removal and that it will allow ECMO to do it's job. We will update again when we know more.

Here is Daddy with Kaden this morning. All of you who know Craig, knows that he is the "king of jingles". He sings "Kaden Kuehl is Kung-Fu-Fighting" to him and it does make me giggle--I think Kaden likes it too since he has heard it over the last 9 mos:)

Update on Kaden

Just wanted to give everybody an update on Kaden. He is holding his own on ECMO. The Doctors and nurses are constantly keeping his stats where they should be. He is a very sick boy, but they say he is doing as well as a severe CDH baby and we just have to take it day by day to see how he improves. We got to see his little feet and toes wiggle at us this morning when we were visiting him. Grandma Debbie, Grandma Mary and Sissy (Jessica) came to visit today. Please pray for Jessica, too. She is having such a hard time with all of this. I think it is hard to really deal with when you are 16 years old and I know that she feels like she doesn't have anyone (her friends)who can understand what we are going thru. She is an emotional mess, too, not sleeping and crying at the drop of a hat. I feel some sort of guilt for putting my children thru this, it is not suppose to be this way.

It is amazing how it is the little things that make our day--just seeing any movement from him. We were told today by the doctors that the valve in Kaden's heart was closing (the valve that normally closes at 2 days old) but because his lungs are so small, it was making his O2 levels drop and making his heart work harder. I don't know if we mentioned before, but Kaden is only on the lung bypass ECMO. They felt his heart was strong and did not need to be bypassed. They gave him a drug to re-open the valve and his stats almost immediately improved. We are just in the waiting game to see how much of his lung tissue has viable air sacs. If he does not have enough air sacs, there is not alot they can do for him. For right now, we are really praying for his little body to continue to make urine (his urination has slowed down a bit since most of the blood is going to his brain and lungs and not the other organs in his body) and that the lung tissue that he does have will "relax" and start to oxygenate his blood. Like Kellie (Carter's Mommy) said, I feel like ECMO, at this point is a safety net. We do not expect him to have any drastic changes while on ECMO these first few days.

I know everyone is praying for us. We feel your support and appreciate all the comments. We are finding great comfort in your CDH stories, and are going back and reading the blogs of all the babies that were on ECMO. It helps us stay focused on remaining positive and believeing that Kaden can beat this. I know he knows how much we love him and want him to get better.

Mommy putting aquaphor on my lips.

Update and some pics

This is Kaden yesterday afternoon when his stats were good--Before ECMO

This is this morning after he was on ECMO

We just got done visiting Kaden in the NICU. He looks sooo good compared to when we saw his last night BEFORE the ECMO. Our little man gave us quite the scare, but we came to realize that the problem with the ECMO procedure was not Kaden's. He was doing very well until the trach tube came out/got clogged. Then his little heart just could not withstand the lack of oxygen. But, we are only looking forward and not back. He is doing really well right now, they are pleased with his levels and are actually going to try weaning his off the paralytic drug. Which means we may get to see his eyes :) The brain scan machine show normal brain activity, so I am putting that out of my mind as well. He is going to be getting an ultrasound of his head everyday now that he is on the ECMO to check for bleeds on his brain. I was actually surprised how swollen he wasn't, but his nurses say he is peeing ALOT. I do expect him to get puffy, but as for now he still looks alot like he did yesterday.

I cannot explain to everyone what it feels like to be told that your son is probably going to pass away and they need you right now. I was almost in a catatonic state--I didn't cry the whole way to the NICU--I felt God with me and knew that I could not change anything that was happening. But when we got there and he was being stabilized I just tried to take a deep breath and told God that I didn't want Kaden to suffer in any way, and if his plan was to take him than just let me hold him and let him go peacefully. So I am praying that this is God's way of telling us that Kaden is meant to be here. We are so proud of how hard he is fighting and know that he is not ready to give up, so we will not give up either.

We feel your prayers and appreciate all your support. I am usually the "blog stalker" but forgive me for being a little MIA for the next few days. We are reading your comments--we read them together out loud and try to make it thru without crying. We have come to realize that Kaden & God are in control and instead of taking it day-by-day, we take it minute-by-minute. We love you all and our prayers are still with your little ones and families. Please continue to pray for our Kaden.

The worst night of our lives

i apologize for the short post, and not alot of details, but we are so physically and emoitionally exhausted that I really don't feel like writing alot. Kaden had a really bad night, and it was decided that it would be best for him to go on ECMO at midnight. During the proceedure, his trach tube came out and they had a really hard time getting it back in because the canulas for the ECMO machine were already in place. The nurse came and woke us up (after about 1 hour of sleep) to come up to the NICU because they didn't think that Kaden was going to make it--his heart had stopped, and the were doing chest compressions and giving him drugs to try to restart his heart. I went up there feeling like this was the end of our journey, but by the time we got there, his heart was beating on it's own again and they were stabalizing him. They are now not sure if the whole ordeal caused any damage to his brain, but they had brought in a brain scan machine that measures brain activity before we left, and said that his brain activity looked normal. So at 3am Craig & I got into bed and we slept unitl about 10am. We are on our way to the NICU to see him, the nurse said he was still stable. I will try and keep everyone posted as much as I can and your words of encouragement are definately getting us thru the day. I know I don't even need to say it, but please pray that Kaden can be that "miracle baby" and astound us all.