Thursday, April 29, 2010

Two steps up, one giant step back!.

Wow, we've been here a week, and came so far. Lynlee came off her oxygen today. She was up to her full feeds, and we can even start bottle feeding. I'd been asking for days when the catheter can come out of her neck. They keep saying just leave it in one more day.

It was Halloween, our nurse was amazing that day. She put Lynlee in an outfit, and even got her out for me to hold. I was holding Lynlee and she got super cold, started turning blue. The nurse quickly took her from me, and went to get help. Everything happened so fast. They next thing I know Ryan and I are standing in the corner of the room and they have a bag over Lynlees face breathing for her. I barely remember being rushed out to the waiting room.

Later, which felt like hours but probably just a few minutes they came to get us. Lynlee was back on the ventilator, an EKG shown that the neck catheter had migrated and poked a whole in her heart. She was going to be rushed into emergency heart surgery. I stood over her bed looking at her wondering how did we get back here? How was that tube back in her throat. She had been so strong how can she keep fighting? I remember standing by her bed praying and praying. One of the nurses holding me up because I had just lost it.

I sat in the waiting room with my mom and family while the rest of our families again made another unexpected trip to Pittsburgh. Surgery went fine, and said she would have no further complications.. My baby girl was so strong.

I had to hold my head up, even though we just started over. We had to start back to square one. Weaning off the ventilator which wasn't as easy this time. She was actually on it for 6 days this time. We had to start back at starting the feeds again, and now she was addicted to morphine. So this was going to be a long process, but at least we had our baby girl, and we can get through this!

Making some progress.

The next week was a week of first all over again.

Monday they came in and done another EEG on Lynlee. All seizure activity was gone, and was there due to high ammonia. They took the EEG leads of her head, and she cried! I cried, but I loved it! I loved hearing her cry the whole time. The guy kept apologizing for making her cry, but it was the best thing I'd ever heard.

They started her on her feeds again. Of course, it was still a waiting game. We had to make sure she accepted the food, that her levels would stay low. They kept the neck catheter in just to make sure.

We gave her her first bath that week! She was a week old and I hadn't ever wiped her off, we had missed so much, but we had our baby. I could live with that.

The week had come and gone. We had many visitors, and life was looking up again. Daily they were decreasing her Fenebar(her seizure medicine) upping her feeds, and lowing her oxygen. We were going in the right direction!!

Having Faith, gets you so far.

We arrived at Pittsburgh at 12:30am. We met with another team of doctors and signed more consent papers. I was amazed by the team there. They had faith, and a plan. They even had a backup plan. They never once promised me false hope, and I begged for it, but they promised me to do the best they could. I had to believe in them, and that God would get us through this and guide them! When we arrived they were trying to get a line in Lynlee, and the catheter for the dialysis. Babies veins are so small that it takes time, and Lynlee was so dehydrated it was almost impossible.

Around 3:15am Lynlee finally started dialysis. The ammonia level had to go from 1100 to under 200 for the dialysis to stop. Projected time 6 to 8 hours! They were taking her levels every hour.

6:45am- Her ammonia was 180. They stopped the dialysis. Only 3.5 hours, that was better than expected! Many blood transfusions were done, and for the next few days everything was a waiting game. We had to make sure her ammonia level would stay down. We knew she had Urea Cycle Disorder, but still was unsure what enzyme was missing and how manageable everything was.

Later Saturday evening we learned they had narrowed it down to one of two enzymes. Both were extremely manageable with medication and strict diet. They done a DNA test to know exactly which one.

On Sunday morning Lynlee was moving some. She had been in a coma due to the high ammonia (which Ruby was unable to tell us). She still was not awake but movement was good. They took Lynlee off the breathing machine and she did so well! Our family had decided to go home and Ryan and I had got into the Ronald McDonald house.

Sunday evening we went up to tell Lynlee good night, and for me to give her our nightly talk. I found myself praying with her everything night. I told her how strong she was, and how she was a fighter, and how God had big plans for her. This was just a bump in the road. I was washing up when Ryan was saying, Stacy get over here!!! Our nurse said, yeah she has the hiccups. Ryan said NO, Stacy hurry. I ran over not knowing what to think... And there it was our baby girl had finally opened her eyes. It has been SO long since I'd seen her eye's and at one point wasn't sure if I'd ever see them again. It was the most beautiful thing I'd ever seen, and something I will never forget. And for the first time in a while I slept some that night.

Wednesday, April 28, 2010

From bad to worse.

I have no pictures, because I refused to take them of her looking like she did, maybe in the future I'll regret that, but at the time I just couldn't bare it! I remember very little. I'm sure if was from pure exhaustion and shock!

I remember pulling in to the parking lot, rushing into the building, and finding the NICU. We were met by doctors that told us they had done a spinal tap, took blood work, and now we have to wait. They also said that Lynlee was having "seizure activity" in the helicopter and they had gave her medicine for it. We got to go see her. She was just laying there, so helpless.

The next morning we went and she had not got worse overnight, which was a good sign. I kept asking why she wasn't waking up, but never got an answer? Maybe it was from her seizure medicine they said. They done an EEG and saw "seizure activity" on it. The whole day went so fast. I remember Ryan's parents leaving to go home, and my dad and step-mom coming. My BFF Erica was there all day. Finally that evening my dad had convinced us to go grab something to eat and they would head home. At dinner my phone rang. It was Ruby. Lynlee's ammonia level came back at an extremely high number and they wanted her to by lifted to Pittsburgh.

We ran out, got back to the hospital right away. They put us in a conference room where they told us Lynlee's ammonia level was 1100, and normal was under 80. I sat there and can't remember anything else they said. I was in shock! I wasn't taking in anything, just hearing words. She would fly out in 30 minutes and we could go see her before she left.

Ryan, dad, and myself went back. Lynlee had been put on a ventilator, and all I could do was wipe the slobber from her lips. I bent down and told her how strong she was, and we were going to get through this! The doctor came in, and I asked if she was going to be okay. I was begging for something to hold onto. She looked me in the eye and said "No, she's not going to be okay. I doubt she makes the trip there. When she gets there she will go on hemodialysis and babies NEVER survive that. And if by chance she survives those two she will not be able to manage the disorder." What do you say? What do you do when every once of hope just got taken away from you?

The flight team came in. Jerome and Donna. I still remember them walking through the door (and I still see them some when we are in Pittsburgh) They called Pittsburgh, and handed me the phone. "Your daughter is very sick, do you understand that?" That was the first words I heard. And then I gave permission for them to do everything they had to do. I don't remember hearing anything they said just saying yes, please save her life!

We hadn't showered or slept in days. We ran to Ryan's brothers to take a quick shower and get our head together before making the trip. I stood in the shower and prayed and prayed and prayed. That was the first time I had prayed in a long time. As tears ran down my cheeks and water over my head I asked God to please save my daughter. And I promised I would be a better person, I would change my ways, if he would just take care of her!

We got ready and headed for Pittsburgh chasing another helicopter!

Tuesday, April 27, 2010

This isn't happening

The next two days after Lynlee's birth were a blur. I remember getting very little sleep, having lots of visitors and wanting more than anything to take my little girl home. I hated the hospital bed, and couldn't wait to get home and get into a routine!

Thursday had finally came we could go home. It was all so soon. We had a really rough night Wednesday night. Lynlee was so cranky. The only way she would sleep is if we held her on our chest. Around 11pm or midnight she ate and that was it. The nurse came in around 3am and took her for her hearing test. I told them she wasn't eating well. They said give her time. The doctor came in at 7am. I again told them she hasn't ate. They thought the night nurse had gave Lynlee a bottle and was having trouble wanting to latch on. To keep trying.

We were discharged and ready to go, but Lynlee had to eat one more time. Finally around noon I picked her up again to try to make her eat and noticed she was having trouble breathing! We called the nurse in immediately. They took her to have the doctor look at her. Around an hour later the doctor came back in. Lynlee was fading fast and they were life flighting her to Ruby. I remember just sobbing. Ryan holding me up in the bed! How was this happening??

The flight team and came in for us to sign paper work and told us they thought she had either a viral infection or meningitis. They put her in the incubator and we kissed her goodbye.

We got out to our car and chased the helicopter. It all had to get better.

Where it all began...

It was a Monday. October 19th 2009. I got up at went in to work. Was I really going to have to work another week? One ultra sound said Lynlee was supposed to enter this world on the 16th while the other said the 19th. I know my daughter would be stubborn, how could she not be? She would come join us when she was good and ready.

I actually remember the day like it was yesterday. I went into work, actually waddled into work was more like it. I done everything I needed to do and straighted everything up just in case today was the day. At 4pm I finally went home. Kristie, my loving sister, insisted we go out for Mexican because she just knew it would make me go into labor. So after work we headed to the Mexican restaurant. We had a nice meal, I even remember what I had, how weird is that. Mexico City!! Anyways, we came home and Lexi (my niece) was over looking at the babies room. It was time for her to go home so she sat down beside me and whispered into my belly "Lynlee you can come out now!" We all laughed about it and I sent her home.

Around 10pm I went to the bathroom and felt something? Did my water just break? Hmm, I always thought it would be more like a gush, but okay I'll take it. I went in and told Ryan so we called the doctor. She told me to come in and they would check things out. So I changed clothes, we called the family and was on our way. The whole thing was really calm, way to calm. Around 15 miles out I was just chatting away and OH. MY. GOSH my water just broke. LIKE REALLY BROKE.. All over the car.. GREAT!!! So there was my huge gush of water, and no one tells you but it's not one gush it's like 50, over and over and over.. Or at least mine was..

We get to the hospital around 10:30 or 11. I was dilated to 3 1/2. Walk they said do lots of walking. So I walked and walked and walked. I was wishing I had chosen a bigger hospital at this point because the same 3 hallways were getting old.

10/20/2009.. 2am- my legs started shaking uncontrollably so the doctor was like well I guess we better check you. They said I was dilated to 8. Yay, but I was off to walking again. No pain at all. No contractions, nothing. ( I know I'm one of those that most people hate!)

3am- I was finally dilated to 10. You can push if you need to. I didn't ever feel that I needed to they just told me to push after my legs started shaking, still no contractions, no nothing. But I pushed and pushed and pushed.

4:28am- I finally met my beautiful baby girl. She was amazing. 7lbs, 21inches. AMAZING!! Welcome to the world Lynlee Rhea Arbogast

I done it! I'm finally blogging!

Well I've finally done it. Started a blog. I've thought about doing this for weeks now. I only talked myself out of it a million times. I kept telling myself what would I blog about? My life isn't anything exciting and I can't imagine even two people wanting to read about it. Then this morning I was trying to recall something that happened just months ago. I couldn't remember all the details, and I don't want that for Lynlee. I want to be able to tell her EVERYTHING that she went through. She is so strong, and has made my life so complete I can't imagine being able to just remember bits and pieces of it. It's not fair to her. She has fought so hard to be in this crazy life the least I can do is try my best to remember every little detail of her childhood. So I'm sorry if I'm boring to some, if that's the case then don't read it. I'm doing this for my daughter, and hopefully a lot of other families that will learn something from everything we've been through.

I'm sure the next few post will all be past events. I want to put them down so I don't forget more than I already have.