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!

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!

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!

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!

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!

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.

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!