Thursday, September 5, 2013

Congenital Adrenal Hyperplasia

For those of you who don't know yet, we spent 8 days in the hospital with Parker just days after he was born.  It was a long week, but we survived, and are doing well now.  Here is a sum-up of our experience:

Everything went well with birth and delivery, and we came home from the hospital to our new "normal" life. We went to Parker’s 2 day appointment on Monday (actually 4 days old) and he was a little low on birth weight so they needed us to bring him in the next day.  No biggie—we had to do that with Camden in waiting for my milk to come in.  But that afternoon, Parker just kept getting more and more lethargic, more than a normal newborn.  I was trying not to be bothered, thinking he was just tired, but by 10 o'clock that evening, I was worried.  I asked my mom about it, and we tried to wake him, and he would barely wake.  He was almost limp.  I was really scared.  Mom told us to go to the hospital and she’d stay with Camden.  On the way to the hospital, Mat was on the phone with the nurses line and I was in the back with Parker, trying to keep him awake, but it wasn't working.  I became frantic, unable to wake him.  I had no idea what was wrong but he wasn't crying or responding or anything.  He looked like he was going into a coma.  I started crying and screaming at him to wake up, trying to rub his feet. I was practically hysterical.  For the first time ever in our marriage, Mat yelled at me, to me calm down, and it was enough to spring me back to reality and get me to the hospital.  We got him there and they admitted us quickly (you know they are worried about the patient when they skip others and take you back). They started running all sorts of tests on him to try and wake him, taking blood, etc. etc. They did so for hours.  They kept trying to put an IV in him, but were unable to, and unable to, so they finally called in transport to do it.  after what seemed like 2 hours of listening to Parker scream as they tried to put an IV in him, they finally got one in his head.  They admitted us to the hospital at about 3 or 4 in the morning, and the next day bright and early they started running tests.  At this point, I was hopeful that at least he'd make it.  He was in good hands and if anything drastic happened to him, at least we were at the hospital.  But I can't tell you how worried and in pieces I was.  It is one thing to have a family member in the hospital in critical condition--it's very hard.  But to watch a tiny little baby struggle for life is excruciating. 
(the first day in the hospital)

Initially, they thought he had a UTI, so they started him on some medications just in case and we waited for the results.  But he was so limp that they were worried about all sorts of other things, so they ran tons of tests that first day.  We spent the next couple days just waiting on test results.  Everything came back negative, so they started back at square one and drew more blood.  But he was getting so dehydrated that it started to become impossible to draw blood. I could pump and feed him, but he didn't want to eat that much. Each time they tried to draw blood and it would take hours to get some out of him and every time they tried, he would scream the whole time, then seemed worse afterward.  He was starting to look emaciated despite us feeding him all the time. 
(after 3 days in the hospital)
(probably day 4)
The doctors had no idea what was wrong with him.  Mat and I were exhausted and in pieces.  There were times when I wondered if Parker would live through it.  Here and there I would break into tears, not knowing what to do.  By Wednesday, it felt like we’d been in the hospital for a year.  Finally, on Thursday, they rushed his state screen results and one of them came back positive. They did another test and for the first time, something actually came back positive.  Parker has a genetic disorder called Congenital Adrenal Hyperplasia.  Essentially, his body is incapable of producing Cortisol (a stress hormone) and Aldosterone, two hormones that naturally occur in the body to help regulate it on a daily basis.  When they first told us, we were heartbroken and in pieces.  “What is this?” I kept thinking. “What does this mean for him? Is it fatal? How will it affect him? Will he die from it?” All these questions kept forming in my mind.  I had no idea what this meant.  I was completely blindsided. In pieces, I called some friends to take care of Camden so that Mom could come be with us. Someone came to give blessings to all of us, and we prayed that everything would be ok.  

Then, on Friday, when they were trying to draw blood, they were unable.  They had exhausted all of his veins. He was too dehydrated.  It was heart-breaking.  I literally had to leave the room every time they tried and would just cry as he cried.  If they couldn't draw blood, they couldn't see how much medication to give him to make him better. They finally decided that their only option was to do a central line, a port directly to his heart that would allow them to draw blood and give fluid easily (despite being dangerous). At this point, it was our only option. 

We had the whole family informed at this point and that day the Richard's family all decided to fast for Parker.  Tiff’s family was at the Zoo and their boys all fasted throughout the entire day.  And you know what?  We had our own miracle that day.  As they took Parker in to put in his central line, they informed us that the procedure would be difficult because he was so small and so dehydrated so they expected it to take a couple hours at least.  We left the room and went back to our room and just waited.  Within 40 minutes, one of the nurses came back in and informed us that they were done.  She said something like this: “Everything went perfectly.  You know, it was funny. The surgeon went in for the first attempt, and it just went right in, and he said, “Wow, that was fast. I’ve never had it go that fast before in all the years I've been practicing.” It was truly a miracle.  Is there any doubt that Heavenly Father heard the fast and prayers of his Aunts and Uncles and cousins that day? that he accepted the fast by his cousins ranging from 8-12, and through their perfect faith, He guided the hand of that doctor? Not in my mind there isn’t--I have no doubt that is exactly what happened.  I cannot tell you the relief we felt at this point. No more pokes, no more prods, no more screaming.  At this point, they were able to get blood easily, and give fluids and medication easily.

Before this procedure they had moved us to the PICU, and we met with the endocrinologist to give us more information on CAH.  This was the first time I had felt peace the whole week.  He gave us tons of information and helped us see that helping Parker deal with this disorder would be manageable, and that Parker would be able to live a long and healthy life as long as he took his medication. He'll take medication for the rest of his life, but it will be manageable and shouldn't affect him as long as he's vigilant with it. 

Once the central line was in, things started looking up.  Mom told Mat and I to go spend some time with Camden, and when we got back, they had removed the EEG from his head, and the old IV, and they had bathed him and scrubbed him clean.  They gave him his first doses of medication and by the time we got back (it was probably 3 hours), he looked fantastic.  I practically cried when I saw him.  It was a night and day difference.  Mat stayed the night that night and Mom and I went home to get some rest—Mat would just feed him from the milk that I had already pumped and then I would pump at home and bring it in.  The next morning when I got there, Mat told me that he, Mat, had slept through the night as well, and the nurses took care of Parker.  When Mat woke up the next morning, he went to the fridge to get a bottle to feed Parker and all the milk was gone.  Confused, he asked the nurses where it was, and they replied, "Parker ate it all in the night. And some formula." They went on to tell Mat that they rarely had little babies that were transient (Parker's central line didn't need to be connected to anything but him) so they kept him at the nurses desk the whole night and just held him and fed him and rocked him all night. Apparently they bathed him and scrubbed him clean again, and just gave him tons and tons of love. They took turns holding him all night. When Mat told me this, I burst into tears of gratitude, for the love that they had shown my little baby, and for how well he was doing.  It was a complete turnaround, and answer to so many prayers.
(after 1 day on the medication, and a night with the wonderful nurses)

From there, Parker just kept getting better and better. He was able to start nursing again, and he was more alert and moving around.  They moved us back to the main floor and by Tuesday we were able to go home.  We felt relieved. 
(the day before we left, I think)

Since then, we've spent the first few months of his life getting used to medications and taking care of him. We've had a few hiccups here and there, but we are starting to get the hang of things.  He is an angel, and we are so grateful to have him in our family.  I thought that when I had Camden, I better understood what our Heavenly Father feels for us, as His children.  But this whole experience has taught me even more the love that Heavenly Father REALLY has for us.  It is endless--he would do anything for us. I love Parker so much and am so glad that he's mine. 

Parker just started smiling recently, and I cherish every, single smile, and look forward to every, single one I'll see for the rest of my life. :)