Tuesday, May 25, 2010

Long Days

Whew, what a day! Yesterday we left the house at 5am. Unless for some strange reason Lynlee is up,usually don't know the word exists at 5am let alone being ready to walk out the door at that hour, but somehow we managed! The trip to Pittsburgh is long. It can take anywhere from 2 1/2 hours (without traffic and without stopping) to 4 hours! We always give our self 4 because we never know how traffic will be and how many times Lynlee will need to stop. She always manages to poop all over her self and outfit at least once during the trip (TMI? Maybe, but hey it's my blog! LOL)

We actually managed to get there in 3 1/2 only stopping twice. Once for a bathroom break and once to change Lynlee. (Told ya!) Our first apt was at 9:30 with the neurologist. I usually refuse to have an apt earlier than 10:30 but since he worked us in I didn't argue. He wasn't to concerned with the excess water on the brain. He said that in babies that laid in NICU that long it was normal, but he did send us for another head ultra sound to get pictures to compare that it wasn't growing, etc.

Our next appt was with Genetics at 10:30. That appt usually takes at least an hour after we see our consular, nutritionist, and then the doctor. They were of course pleased with Lynlee's levels.. They decided that we could get the ammonia tested every other week and weighed every other week since everything has been so good. This makes me happy, but nervous at the same time. I live by those levels every Monday. But at the same time I know she can't get weekly blood work her whole life and somehow I'll manage. So around Noon we finally got out of there was heading down to the lab to get blood. Since Lynlee has the port they regular lab techs can't access it, we have to get the IV team to do it. They said it would be 2 hours before they could get there? ARE YOU KIDDING ME?? Seriously? If they would get me the heparin I'm pretty sure I could do it all myself. I'm not even exaggerating on this. It's that simple and I've seen it done that many times!

Ryan and I decided we would just go get the Head Ultra Sound done while we were waiting and go from there. I really wasn't looking forward to another ultra sound though. The last one was dreadfully long and Lynlee screamed the whole time! The guy kept telling me to sing to her, and make her stop crying. Yeah, I almost slapped him for that! But this time was better. It only lasted maybe a whole 5 minutes compared to the 30 minutes before and Lynlee never cried once. This tech was good!!

To cut a very long wait short we finally got the blood drawn. After a 90 minute wait on the results (yes at Weston it takes 20, go figure) it was a 55 and we could go home. I've yet to figure out why it takes so much longer at Children's and how we always manage to get a higher number there? But a 55 isn't bad. So at 4pm we finally got on the road home.

Traffic was terrible!! We stopped once at Ryan's brothers for dinner staying a whole 45 minutes, and pulled in our driveway at 8:30 last night.. LONG DAY!

I have to say Lynlee was a jewel! She only got real fussy the last 25 minutes of the trip, and I can't blame her. I was cranky way before then! Have you ever tried to get your child to nap in a hospital? It's not easy. And when I finally did get to nap while waiting for the head ultra sound, the receptionist would not give Ryan the bracelet to put on her. So I had to carry her up. Like they were going to do the head ultra sound on me and Ryan? (See told you I got cranky!!)

So now we wait for the results of the head ultra sound. I'm hoping to hear something today. I'm staying extremely optimistic on this!

Friday, May 21, 2010

25 Things I've learned in the past 7 months

1. Love at First Sight Does Exist!

2. Doctor's don't know everything! God's plan is greater than any doctors knowledge.

3. There really is no place like home.

4. You don't know how strong you are until you have to be.

5. Family and a few close friends are all you really need in life.

6. Babies are amazing and can handle more than you think.

7. You truly are meant to be if you can be with someone 24/7 for 7 weeks and still glad to go home with them! ( I Love you Ryan!)

8. I can honestly live in sweat pants and no make up. (Can you believe that?)

9. Designer Shoes and Purses don't matter anymore, but they still are NICE!!

10. Babies are Funny!!! I know most of you think that one's crazy, but I never thought Lynlee would make me laugh SOO much!

11. Everyone thinks that their child is the smartest, cutest baby ever! But seriously, have you seen my child?? She so is!! Ha ha.

12. Poop is the 2nd highest topic of conversation in our house. The 1st highest? See #11.

13. If you don't take the whole seal off of a baby food container it will catch on fire in the microwave! This is in writing NO WHERE on the package!

14. Babies make people do the funniest things! I've seen strangers, grown men, dance in grocery stores. I think it's due to #11.. (hehehe)

15. Patience! I know have so much of it!

16. Things hurt me more than they do Lynlee and usually longer!

17. Tags are great! Sometimes better than the toy its self!

18. Sleep is precious.

19. Staying home on a Friday Night and being in bed by 10pm = Heaven

20. Nothing good ever comes from the Hiccups!!

21. The Itsy Bitsy Spider makes everything better (except the hiccups)

22. No matter how much pink she has on people still say "He". Are you kidding Me??

23. Some of the best toys are toys we didn't purchase. Fringes from a blanket, measuring cups, and whisk. Who would have thought??

24. Every day is a new experience for me and Lynlee.

And the last thing I've learned....

Even when the life you think you will have turns upside down, it's still worth living for!

Wednesday, May 19, 2010

We truly are blessed!

Since Lynlee has been born not one night has went by that I don't lay down and pray before I go to sleep! I pray for good ammonia the next day, for signs if the ammonia is up, for a cure or a miracle for her, for our friends, family, other UCD families, etc.. But I always, ALWAYS thank the Good Lord for all he's done for us! For the many ways he's blessed us and I'm going to be thanking him twice as hard tonight!

This is a hard blog for me to write! As I sat here with tears running down my face I realize not everyone is as blessed as we are! And Believe me I know how blessed I am. Everyday waking up in my own house with an amazing daughter I'm blessed. Blessed with how good she is doing, better than we were ever promised both physically and mentally..

I talked to Corie today. Savannah is struggling! She is on continuous dialysis for her ammonia. The IV meds aren't working any more and oh how my heart aches for her! To be that momma setting there watching your baby go through dialysis AGAIN! Those are feelings I hoped that none of us would ever have to experience again. They are waiting for a liver transplant! I pray that the perfect liver comes soon!

Today I feel blessed just to have Citrullinemia. We could be dealing with a lot worse. Yes, we could be dealing with a lot better, but today Citrullinemia doesn't suck as bad. I know Corie would love to be in my shoes today, and so would thousands of other moms and kids with a thousand other diseases!

So please feel blessed for what you have! And say a prayer for those less fortunate tonight!

Tuesday, May 18, 2010

Just another Monday

Well yesterday was like every other Monday that we've had for weeks! It's the day we go get Lynlee's ammonia checked. I dread this trip because it's a 45minute trip one way and takes about 3 hours total. Plus I have to pack up the car (well I don't have to pack it up, but I do "just in case") and usually I don't even think she needs it. But at the same time it's always a feeling of relief when we get the low number back and usually gives me peace of mind for another day.

But yesterday I was looking forward to taking her and nervous too. Lynlee had an off weekend! I wasn't THAT worried or I would have taken her to be checked but I was thinking it might be creeping up. She was up two different times Saturday Night screaming, and Sunday was really cranky! Neither of those happen very often, and as Ryan reminds me, those two have never been a sign of high ammonia! But I still worry. It's my job now!

After loading up the car which includes, mine and Ryan's hospital bag, Lynlee's bag with her toys, our formula bag, our scale bag, the main diaper bag, and Lynlee's feed bag because we have to feed her on the road one way we were set. We pull into the hospital around an hour later. We know the drill by now. Get registered, go to the lab and get the tube, go to Day Surgery so they can access her port, take the blood back to the lab and wait about 25 minutes for the results.

I have to say that the nurses and lab techs are amazing! They all know us and know Lynlee. Lynlee doesn't even crying during the blood draw she usually just watches or talks to whoever is doing it. But yesterday we had a new lab tech. She came out and had this terrible look on her face. As soon as I saw it my heart sank, my stomach got knots, I thought I was going to be sick. A hundred things was running through my mind in those seconds she wasn't talking. It was up, I knew it was by the look on her face... And she says, and I quote "It says it's 40?!" While she had this nervous look still on her face I felt myself sigh! Thank Goodness!!!! I'm going home. I then told her that 40 was normal for us even though on their sheet it prints out a High!!

I forget they don't know what our "normal" is. So we head home!! And unpack a few bags and enjoy the rest of our day!

Thursday, May 13, 2010

So you had a bad day.....

I rarely have bad days anymore! We have so much to be thankful! So every time I feel myself getting into that slump and having a bad day I make myself feel guilty.

Crazy huh? That I won't even allow myself a bad day?

(Seriously, how could I have a bad day when I wake up to this EVERYDAY???)

However, I don't feel like I deserve to have a bad day! What could be so bad setting at home that I can't pull myself together and put a smile on face. A bad day to me would pretty much be a pity party. And believe me, I could really throw myself one of those and did a lot while we were in the hospital! What would a pity party accomplish? I'd be miserable, Lynlee would probably be miserable, and I'd make everyone around me that way. I could dwell that we've been dealt a bad hand, that none of this was supposed to be like this, etc.. But I won't and I don't!

It wouldn't change anything, and at the end of the day I've learned to accept it, and live life!! We can't live in fear, but we can't be naive about the situation either!

But Monday, Monday was a bad day and for what reason I'm not even sure of. I was feeling blah as soon as Lynlee woke me at 7am. Two cups of coffee didn't help! (And I'm a one cup a day girl!) I went to get on facebook and my status wouldn't change. And when did I start letting facebook determine my mood? But I did.. And then our water was shut off. I guess the neighborhood had a leak so we were without water. UGH! Oh, and my phone wasn't working correctly! I know I was being over dramatic with how bad my day was (and believe me I've had a lot worse), but I just couldn't shake my mood!

We took Lynlee to get her ammonia tested and it came back 47. I even felt myself thinking Ugh a 47. And believe me a 47 is great! But the past weeks we've had 20's and 30's (which is where I like it!) but a 47 is still good! We've left Pittsburgh on 65's and thought it was the best thing in the world so what is wrong with me today?!

(A 47 and she was sucking her toes!) What more could I ask for??

Then later on that night I was tired of feeling blah! I got up and walked 2 miles, and thought "enough is enough" Lynlee is home and this is week 9 of low ammonia! Somehow we've managed to where I can stay at home with her because before all of this me not working was never in the plan. Mentally or Financially for that matter, but everyday we make it work! Life can be a lot worse. So if my camera on my phone never works, if I can never post another status on facebook I will survive!

Sunday, May 9, 2010

A week of firsts.

This past week has been an extremely busy and refreshing week for Lynlee. I'm starting to get her out more, which I'm sure she loves as much as I do. I have to admit I'm scared to death of that scary world out there with nothing but germs, but I know I can't live in fear forever. The doctors have told me that I'm not doing Lynlee any favors by keeping her inside. In fact, in the long run I'm hurting her. They told me that she had to be exposed to germs because if not by the time she made it to kindergarten and she was exposed to all of that at once she would be really sick. Lynlee's immune system is not weaker than any other child, but any virus or infection could effect her ammonia level. I'm reminded constantly that I take her to a hospital and a doctors office once a week so can a grocery store really care more germs than those two places? I doubt it!

So on Tuesday with Lynlee's mommaw called me to meet her at McDonald's for breakfast I started to cringe! Could I really take her to McDonald's? It was 10:20 so it shouldn't be too busy so I done it. I loaded her up and took her. I even sat her in the high chair, but I did sanitize the whole thing first. She loved it! She is so social and just LOVES looking around and watching people!

Tuesday evening Ryan and I decided to take Lynlee to the park. I'd been dying to put her on a swing. I know one of two things would happen. She would either Love it or Hate it. After making trips around the park waiting for our turn the swing was finally free. We sanitized the swing (of course!) and strapped her in. And she LOVED it. She swung for at least 10 minutes, and I thought she was getting cool so we left. I left there with a huge smile on my face. These were the moments that I'm so glad I can share with Lynlee, and I was so happy that Ryan came with us. Some days I feel like he misses so much so I'm thrilled when he can capture that moments with me!

Then we have today. My first Mother's Day. I have to admit I didn't think I'd be as emotional as I was. From the moment I opened my dresser and could smell Ryan's mommaw perfume. Oh, I how I miss her. Our first Mother's Day without her. Most days I'm fine, but some days I wish I had got to say good-bye. She had passed while we were in Pittsburgh and I couldn't leave Lynlee for the funeral. Not a day has went by when I don't think about her and don't wish she could have met Lynlee just once! After that it didn't take much to make the tears come. I would have moments where I just looked at Lynlee and think oh how lucky we are that she is here with us! So lucky that she is a fighter! I thank God for her everyday! Then this evening as we were watching TV about a NICU baby I just lost it, all of that just hit home.

I've always heard that you don't know what love is until you hold your child in your arms. That saying is so true! The love you have for your child is one that cannot be explained! It's truly amazing and unconditional.

Friday, May 7, 2010

Finally up to date!

The blog is finally up to date! As I sat here tonight I realize how far we've came. From the day we came home where we watched Lynlee sleep all night to watching her eat and drink. I learn something new from her everyday. She is not only strong willed, stubborn, and has one heck of a temper, but she is the most precious, beautiful and loving daughter I could ask for.

We are still going to Weston once a week for blood work, and this past week was 8 weeks with low ammonia (YAY Lynlee!)Two months ago I didn't think it was possible to go 8 weeks! We are still getting weighed weekly and they adjust her medicine accordindly. Our daily schedule is pretty much the same. She eats her cereal and fruit for breakfast and then of an evening has her veggies. She is doing so well, so much better than I had ever expected. She is taking her sippy now with no gagging, and actually wants to drink from it!

Last Friday our development therapist came to work with Lynlee. She said we were delayed with Lynlee on her tummy. She wasn't pushing herself up as much as she should be, and she wasn't bringing her toes up enough while she was on her back. She gave me a list of things to work with for the week. Yesterday she was back because after that we are upping her to twice a month so she doesn't get even further behind. And she was so pleased with Lynlee's progress. I couldn't help but smile! Yes, we have a ways to go, but Lynlee is doing so much better. It's a challenge, but hey I'm ready for it and have lots of time on my hands.

So if I have to work on tummy time all day, and her chewing on her toes I can do that! If I would need to take to Weston twice a week I would, or get her weighed daily I would. She has fought hard to be here and I will do everything to make her life nothing short of amazing! We will take our delays and hold our head up, and work on them!

Here goes nothing

I woke up the next morning so excited to try Lynlee on cereal. I still thought I was wasting my time. How would she eat when she won't take a bottle and gags when you put a sippy cup in her mouth? I wasn't even sure if she would ever eat. I've read about those kids that are so G-Tube dependent that they don't eat for years, and our feeding specialist has never sugar coated anything. She was always honest saying we only have a limited time for Lynlee to eat, and we can't miss that open window.

So I went to the grocery store and found the cereal that had the least amount of protein per serving. 16 grams = serving, and 1 gram of protein was one serving. Not to bad! I came home and here goes nothing I thought. Put it in her mouth and she ate it. She didn't gag, spit it out, nothing! It was litteraly one of my most proudest moments yet. I was SO excited. She was eating, really eating.

Lynlee proved us all wrong again, and I'm sorry for not having more faith in her!

Appointment after appointment

We were home a total of 3 days when we had to head back to Pittsburgh for a day of scheduled appointments!

The first one was our G-Tube. After waiting for what seemed like forever for just the nurse they came in told us that WE were going to change the tube. I have to admit I was a little nervous and had only seen Lynlee's hole once when she pulled it out and we had to take her to Ruby to get it put back in! ( I totally didn't blog about it because the whole thing was pretty uneventful but at the time we thought it was the end of the world I was crying, yelling at doctors, and it was fine!) But the whole concept of the tube isn't bad. Her hole isn't bad either. The site looks amazing we were actually told that Lynlee had the best G-Tube on the block. So I'll take that.

Our next appointment was with our team of Genetics. I had been waiting for this appointment for weeks. I was hoping they would say we could start Lynlee on cereal and baby food, and they did. We can give her up to 1 gram of protein a day. I was shocked! It that it? Are you kidding me? But after we got up and started measuring it was all that bad. Genetics also said her labs looked really good, and we had a good ammonia that day 45!

Our last appointment was the head ultra sound. Our pediatrician was concerned because Lynlee's head is on the rather big size. She is in the 97th percentile on head circumference. I thought the whole thing was rather ridiculous! She is a dead ringer for her daddy at that age. Same head shape and everything so I wasn't even worried, never even thought twice about it. I guess maybe I should have because the results came back abnormal. What? Are you kidding me? was my exact words when they called? Our pediatrician wanted an MRI done and of course I refused. I called our neurologist and after a few choice words with his secretary he called me back within hours! (I told you I was a pain in the butt like that, especially when it comes to Lynlee.) And he told me that a MRI was going to be last resort and that some children have water on the brain but it's not enough to worry about. He wasn't worried so I've yet to worry about it. We go back to see him when we go back to Pittsburgh on May 24th.

Even after all of that I was still super excited to be trying cereal even though I was afraid I would be batting zero!

Thursday, May 6, 2010

No cake needed!

A week before my birthday Ryan started asking what I wanted. Just to be home I told him. I don't care what we do or what we have I just want to be at home with Lynlee on my birthday. Well two days before April 8th we woke up and Lynlee's cold had gotten much worse. She was wheezing, and it scared me to death! I know how to handle high ammonia's and what to expect but I have no idea what to do with normal baby stuff. I've freaked out over a toe nail, eyes watering, etc. I know our pediatrician thinks I'm crazy and she is right most of the time!

So I took Lynlee to the doctor. They tried giving her a breathing treatment, and said it didn't work that she would probably need steroid breathing treatments and we would have to go to Pittsburgh so they could monitor her ammonia through it all. Then they told me the bad news. They wanted me to go in ambulance! Seriously? Was it that bad, they thought yes, so I didn't argue (for once!) and we headed to the hospital! Ryan met us there and after an hour or so we headed to Pittsburgh in the back of an ambulance. Let me just say I prefer flying! Who knew how bumpy that thing really was? I'm not sure how much an EMT gets paid, but I'm willing to bet it's NOT enough!

After only getting lost once we pull in. Lynlee's ammonia came back at 29 and they gave her a breathing treatment and sent us to a room. It came back that she had a respiratory infection. They kept us two nights total and monitored her ammonia which was fine the whole time!

We were released at 6am ( I told you they were awesome like that!) on my birthday so I did get my wish after all! Not that I've ever been big on birthday's. I mean they are great and in my drinking days there was nothing better but now they are just another day. I'm so getting older! Last year I was complaining because I was half of 50 and pregnant, but this year I was just happy to be home with my family.

It's amazing how much growing up you do when you have a baby. I assume I would have grew up if Lynlee hadn't went through all this, but I don't know if I would have truly appreciated the small things, and the bigger things like I do know!

Thank you Lynlee for making me realize what we have and for making my birthday amazing!

Wednesday, May 5, 2010

The port

We arrive back at Pittsburgh on Monday March 15th. I had prayed, and prayed that we were making the right decision for Lynlee. I hated putting my daughter through another surgery, but this had to be better for her for all of us! I knew access was getting limited and the port its self might save her life. When you say it like that I know I made the right decision!

We finally got admitted and taken to our room. They wanted to start an IV on Lynlee so she could get her meds, and fluids before surgery. After trying 4 times they finally got one in the wrist, now I know I made the right decision! Monday evening was pretty uneventful we only made at least 100 trips around the nurses station with Lynlee in her stroller :)

Tuesday surgery was scheduled for 12:15. After being pushed back a couple hours she went in. They told us surgery would last around an hour and then we could see her in recovery. By 3:30 we were in recovery with her! She looked good! So much better than I remember her looking after any of her other surgeries. She was pretty cranky and groggy the rest of the evening! By 5:30 she was back on her feeds, and ammonias were staying low.

Ammonia's stayed low through out the night, and we were released to go home!

Genetics also wanted us to get weekly ammonia's since we have the port and to get weighted weekly to keep up with the meds.. Fingers crossed!!!

Not Again?!

Oh we had high hopes for March. Hoping since they raised Lynlee's medicine her ammonia's would stay under control that things would go back to normal even though we knew we were out of the honeymoon period. The "honeymoon period" is the first 3 to 4 months of a child's life where the ammonia levels seem to be stable but from 4 to 14 months are the roughest due to all the growth spurts the children have.

March 10th was just another day here. It was nice due to the hard winter we have had. Lynlee and I went for our first walk of the season. After her 3pm feed Lynlee set up and vomited. Ryan and I packed the car and headed to Weston. Since our local hospital does not have an ammonia machine we drive 45 minutes to get results. We got there and after one hard stick in the head her level came back at 233.

We got admitted to the ER and they started an IV (in the head) and I was sure the D10was running fast enough! They scheduled life flight to come get us. I was so thankful they let me ride in the helicopter with her! My worst fear is her laying up there by herself in bed where she knows no one! So when they asked me to ride I jumped on it! 37 minutes in the air (yes, I said 37) from Weston WV to Pittsburgh PA! Ryan showed up an hour and half later!

We got there and the IV in her head had blew, actually the ER nurse blew it by trying to draw blood from it, but I'm trying not to be mean in this post! So they started an IV in her neck. By 7am the next morning that IV had blew. They started and IV in the other side! By noon that one had blown! They tried a PIC line 4 times which would not go and finally put a central line in (surgically.) After all of those and multiple tries of other IV's she was poked more than 20times. Ryan and I had made the decision to get the port put in. I could not take watching her go through this, let alone holding her, and she could not take this either. We arrived at the hospital on a Wednesday and released at midnight on Saturday night. We had to come back Monday afternoon to be admitted to get the port put in. Yes, the are awesome like that!

They did decide to put Lynlee on the highest for her weight with high hopes it would keep her ammonia level stable. If not the word liver transplant came up, and that is not what we want to hear. For all of you that doesn't know, a liver transplant would "cure" Lynlee. I use the word cure loosely since a transplant has a whole list of issues it's self!

February, the month from hell

February 2nd we go back to Pittsburgh for our scheduled appointment. Lynlee had been having issues so we thought to adjusting to the new formula or the doctors thought she might have a touch of a stomach virus. She was acting normal to big signs other than wretching which just started. We met with our team, everything looked great they said do the blood work and head home.

Around 30 minutes out of Pittsburgh I got a phone call. Lynlee's ammonia came back at 356. They were hoping it was a bad draw so take her back to the ER and they would be expecting us. The 2nd stick came back at 244, the ER was a mess over 100 patients, we waited and waited. It was my first emergency and I wasn't sure what should really be happening (you learn fast with this disorder) finally after 2hours they started D10 and then started the Ammonul (a bolus of meds that brings Lynlee's ammonia level down instantly!) By the time we had got to PICU Lynlee had got dehydrated the Doctor came out and said the ER had only been running D10 and 10ccs per hour! Are you kidding me???? So they pumped her full of fluids, put in a line we were there for 3 long days!

The following week we woke up to Lynlee's arm shaking. I freaked out took her to get an ammonia level checked it came back in the 60's. The next day it was still shaking so we called our pediatrician and she referred us to Pittsburgh to see a neurologist. On Feb, 15, 2009 we went to see the neurologist and they decided to keep us over night to do an EEG. They next morning her EEG had came back normal but her ammonia was 114. In two hours they done another stick and her ammonia was 246. We've always been told anything over 200 can cause brain damage, or death.

So back to the PICU we went. Each stay is about the same. The first night is doing the bolus of meds to bring the ammonia down. The 2nd day is starting the feds with her meds by IV. The 3rd day is doing the feeds with meds in them (like we do at home) and usually after 8 hours we can go home if ammonia's are still low. So that was another week stay.

Let me just say February was a really rough month for us!

The Blog

I'm one of those people that Google EVERYTHING! So when Lynlee started having trouble (or so we thought) adjusting from breastmilk to formula I was googling every angle of it. Was she really have a hard time adjusting? Was it something with her G-Tube, etc?? So one page lead to another page and so on and then I found it. The blog, the blog that was honestly changed my life!

I honestly don't know what I was expecting Lynlee to look like when she was 2 or 3. Like I've said before we've never been gaurnteed anything with her. All of her development has always been "well just have to wait and see what she does." and honestly that stinks! In the back of your mind you know there is a chance (50%) that she has brain damage and is going to be less than "normal." So when I stumbled on this blog and found Corrigan I cried.. There he was a normal 2 year old. He didn't look like he had Citrullinemia he looked normal!

I started reading this blog, and reading, and reading. I can't even tell you the hope that this woman brought to me. Not only had she been throught what we've been throught but she is an amazing writer. Someone that inspires me and 70% of the reason I'm blogging now! I finally got up the nerve to send her a comment, and the next day she had emailed me. It was the start of a wonderful friendship. When Lynlee's ammonia goes up she is one of the first people I want to let know for two reasons. 1. We have the same faith in God, and 2, she knows what I'm going through and gives me words to get through. I'll never forget the last time. I was in the ER when I read her post, and she said. Stacy, you CAN do this again.. and she was right. We done it again, even though at the time I wasn't sure if I could go through it one more time!

Mindy, Thank you for the every thing your brought to me! The faith, the hope, the friendship!! As bad as this sucks I'm so glad I have you to go through it with!

Nothing too exciting just Christmas :)

December was a crazy month for us. After all we had just got home and Christmas two weeks away. We had so many visitors (which was good!) it had been so long since we'd seen family and friends. We finally settled into a routine and the days came and went pretty easy. Everything was so new and exciting, and it was Lynlee's first Christmas! With all of the families we actually had 3 Christmas's, but life was good.

The New Year came and I remember making resolutions, but for the life of me I can't remember a one and it's only May. So I'm guessing I didn't keep them! haha. We had many doctors appts and everything was going so good. We started having birth to three come in. We've never been guaranteed much with Lynlee just been told the statics. 50% of kids with UCD have brain damage, and 80% have a development delay. Yes, I'm hoping we are the 20% that has none but I have to be realistic. Lynlee already suffers a small delay just from being in the hospital for 7 weeks, and refuses to take a bottle which is the beginning of all eating. So yes we have our work cut out for us but I'm okay with that. I love a challenge!!

Oh how I wish I would have started this blog at day one because I don't remember much more from those months, but nothing exciting in our lives is always a good thing!

Monday, May 3, 2010

Home Sweet Home

For 7 weeks I had dreamed of this day, prayed for this day to come and when it did I was scared to death! Yes, I was extremely excited, but scared. As bad as the hospital was it was all we had ever knew. It was our safety net per say. The nurses and the doctors had become our family, and our support system. Most days they were the only people other than Ryan that I had even seen. I knew I couldn't stay there forever, but it was still hard to leave!

So we loaded our Focus, and yes it was packed to the top. We had already donated all the food and anything else to the Ronald McDonald house (our home away from home) and donated all of Lynlee's blankets and clothes to the Children's home. I still had things on my lap the whole way home, but I didn't care!

We were discharged by noon on Wednesday December 9th, 2009. We didn't make one stop, we just drove the 3 hours straight. I honestly don't think I looked out the window once, I started at Lynlee the whole way home. I didn't even look out when Ryan told me we were back in West Virginia. Wow, it had been so long. The whole month of November I hadn't even been in our state. We had missed so much. Fall, Halloween, Thanksgiving, the first snow, birthdays, etc. But we were coming home, and it never felt so good!

That night I guarantee you Lynlee got so much more sleep that Ryan and I did. I think I might have got 2 hours sleep. Besides standing over her bed and staring at her, I stared at her in the monitor we had too. But day light came, and our life was going to be great, it was going to be normal!

Saturday, May 1, 2010

Meeting Miss Savannah

7 weeks in NICU we saw many babies come and many go. We usually knew when a new baby was on our side. I remember seeing this certain baby come in. Ryan and I were really on cloud nine at the point because we were days from going home. Every time I walked by this new baby I saw the machine. It was the dialysis machine that we had the first night, and the same lady that was doing it. Never once did I think that baby had a Urea Cycle Disorder also.

I'll never forget the day we meet Savannah. It was Monday December 7th, 2009. We were two days from going home. Lynlee was doing her famous car seat test. In Pittsburgh they won't let you go home until the baby sits in the car seat the length of the ride home to make sure they don't stop breathing. So Lynlee was sitting (actually screaming) in car seat for 2 1/2 LONG hours. Yes she slept some, yes she chilled some, but the majority she screamed! At one point Ryan had the car seat swinging it to make movement! So I'll admit I was just a little relieved when the nurse came to get me.

The nurse explained to me that there was a family that she would like me to meet. It seems the baby down the hall had almost the same disorder as Lynlee. Of course, I jumped at the chance of meeting someone else with this rear condition! I walked down the hall, walked in the room and saw them. Saw Savannah. Oh I had forget what that feeling felt like. To see your baby laying there so helpless looking so sick, and the smell. (all of my UCD mom's will know what I'm talking about!) I just wanted to cry, but I couldn't. I couldn't scare these poor people to death. I was there to give them HOPE. Oh how I wished someone would have been there for us to give hope, to let us know that everything was going to be all right because they had been through it. So I finally pulled myself together. Gave Corie and her husband a huge hug and we talked. I told them everything we had been through, and that this was not the end of the world. Yes, it was going to be a struggle, but it would be okay. We exchanged numbers, addresses, emails, and we left. I couldn't bare look at Savannah again because I was afraid I would lose it.

I went back into our room Thanking the good Lord for my screaming daughter! Thanking him for how far we came and I finally knew why we had been there for 7 weeks. We could finally give someone else the hope, the faith that we did not have when we first got there. We had made life long friends from this day, and we would get through this together!

Days, Weeks, Months......

Well the next 5 1/2 weeks were pretty much the same. Days, ran into weeks, which ran into a month. We were there everyday from 7-8am until 10-11pm (sometimes later) each night. Most nights Ryan would have to make me leave just to get a few hours of sleep. We took every thing one day at a time. Some days were so hard! Some days I cried from the moment we got up until the moment I finally got to sleep. Thank the Lord for Ryan! I honestly don't know how I would have survived without him. He was my strength. He literally took care of me for 7 weeks. He made sure I ate everyday, made sure I slept, and most importantly he never let me give up or lose faith! (Thanks honey, I love you!)
I kept a journal for Lynlee of everything. From "the plan" that we got everyday in rounds to every single ammonia level ever taken. I can proudly say in 7 weeks we only missed rounds once and that was because they started super early one day! We had to get weaned off the oxygen, weaned off the morphine, and weaned off the Fenebar.
On Nov. 13th Lynlee's central line got E-Coli in it. So that was 14 more days of antibiotic. So we worked on feeding. Oh how I prayed Lynlee one day would take all her bottle. She would have good days and have bad ones. However, even her good days she never took a full bottle. So on Dec 2nd Lynlee was off antibiotics and the only thing that was keeping us was her not eating so we made the decision to get her G-Tube put in. I prayed, prayed, and prayed that I was making the right decision and to look back I know I had. I didn't really have a choice then, and even 6 months later we still don't have a choice. It's my daughters life line, her only chance of survival!