It feels good to help!

I don't blog about the G-Tube much. I don't really talk about it on and day to day basis unless I'm telling Lynlee "No-No" to stop pulling it. I looked on Facebook and I've never posted a picture of it. In fact, I only have one picture of it. Why? Well one it's always covered! Unless we are traveling, getting ammonia or getting a weight check she is always in a onsie!

Another reason I don't take pictures of it is because it's just normal for me. It's something we've almost always known. I don't really know what do to do with "normal" babies without G-tubes. I don't know how to really feed them or burp them or what to do when they are gassy? Lynlee has never drank more than 50cc's (1 1/2 oz) of milk from a bottle.



(I've never posted this picture because it doesn't look like anyone is standing behind her. Ryan took the picture and I was behind her, so don't turn us in to child services!)

So when Pittsburgh called me yesterday to talk to a family about living with a G-Tube I jumped on it. I wish I had a family to talk to before we had made the decision. In fact, if we would have made the decision sooner we would have probably been home 2 weeks sooner. I called the mom as soon as I hung up the phone with Pittsburgh. I was excited about helping. I've been "helped" so much along the way from other mothers with Lynlee's disorder and I hope I can be help to someone too.

As I listened to this mom talk about how she feels like she is forcing her child to eat, how she felt she was letting her child down by not being able to feed them, and the one that hit home... How can you put your child through something to make your life easier. It felt selfish! I remember feeling all of those things, but at the end of the day Lynlee HAS to get all her formula and her meds or she will be REALLY sick. The decision made sense to us

I hope that the information I have about the G-Tube both positive and negative helps this mother make the right decision. I wanted to let her know that a G-tube is not the end of the world. It was the beginning for us. ( I stole that last line from my dad!)

A weekend away

Lynlee had her first vacation away this past weekend. We went to Beckley to stay at Aunt Pat's & Uncle Jim's lake house! It was a much needed weekend away!

We decided to get an ammonia checked on our way down. We pretty much pass the hospital, and it makes me sleep better. Ammonia... 28.. YAY!

This is only the second time I've been to a lake, and it is the most relaxing place I've found. It's so calm and quiet. Everyone even Lynlee just seems at ease and relaxed. The drive to and from the lake is about 3 hours. Lynlee never complains. I think she is used to traveling, she had her pappaw back there, and watched lots of Baby Einstein.

Lynlee went on her first boat ride and she loved it. She loved looking at the waves the boat made.

She had her first touch of sand. Of course I called our pediatric team in Pittsburgh to see what we needed to do about the sand getting around her G-Tube. We simply covered it with a bandage and away we went.

All and all the weekend was amazing, lots of relaxation and with only a pinch of unwanted excitement. We were doing a group picture when 1/4 of the family including me, Lynlee, and Ryan were on top of the boat house. A bees nest that was under the step got extremely upset with us and started attacking. Luckily the three of us was not touched but Lynlee had to be taken off the boat house by a ladder. She did great as her pappaw lowered her to the ground. Me on the other hand? Standing at the top crying like a baby. I couldn't even watch.

We had lots of laughs, lots of food, and lots of relaxation.. One of the best weekends yet!

Bare with me...

If this is the last blog that kinda/sorta makes sense please don't hold it against me. Tonight we are starting to wean Lynlee off night her continuous night feed.So for a few weeks we are going to feed her every 3 hours. I know I'm not going to get pity from most of you moms since you have got up with your child in the middle of the night. But I've never had too. I've always (well most nights) got 6 to 7 hours of sleep. I still get up to fill Lynlee's milk up but that's like 2minutes once a night. Things are about to change....

Other than that things with us has been the same. We went back to Pittsburgh last Wednesday. Other than being a long day and a two hour wait on Ammonia (blah!) it was a good day. Her ammonia was 58.

Lynlee is now clapping. It's by far the cutest thing I've ever seen! I worked with her for weeks and weeks to learn to clap. Then on day she woke up from her nap and just started clapping. We are working on Bye-Bye now.

She has to get attention every where we go. If we are in line at Wal-Mart she will grunt at the people behind us or the cashier until they pay attention to her. I wish she would do something (like squeal) to get their attention but she grunts.. LOUDLY I might add!

At her weight check today she weighted 22.13 pounds. Whew, I knew it. My hip is killing me lately!

This weekend we are taking Lynlee to the lake for the first time. I'm super excited. I'll blog about it when we get home :)

To worry or not to worry?

I've never been one to worry! I've never worried about money, health, death, etc.. But now worry seems to be my middle name! I dream of the days when we have no worries, but I'm assuming everyone does that. If not the world would be perfect right?

Today, and yes just today tomorrow might be something new, I worry about Lynlee's development. I worry if she will ever really "want" to eat. If she will be normal all except for her diet, and meds?

We had Lynlee's physical therapy evaluations on Friday. It seems that she is about 2 months behind. I know some of you reading this is thinking what's 2 months. Part of me says the same thing that she was in the hospital on her back for 7 weeks.. That's almost 2 months. That could be the delay it's self. While most kids are getting snuggled and having tummy time we were in the hospital.. There is another part of me that still hates the word delayed. I know she is likely to have them, but that doesn't mean I'm ready to hear it. Of course, I want Lynlee to be the exception. One of the few children with UCD that does not have delays or brain damage, but don't all the mothers want that?

I try not to get worked up about it. I keep telling myself that things could be worse (and they could!!) and that God has got us this far, and we aren't giving up now.

Last week in the hospital we shared a room with the smartest little girl I've ever seen! She was crawling out her crib, walking, eating waffles and mac & cheese, talking (says words like mama,dada, stop, up,down.) She was every therapist dream. I honestly thought she was 2 years old. She was 10 months! 10 months!! Wow!
And the saddest part: Her mother did not even appreciate her advanced child! I was angry about this for days. How could a mother not even care that her child could do all of this..

I was complaining to my mom about her when she said "Stacy, she didn't have to!" And she was right. This mom never had to worry if her child would hit her milestones, eat, walk, etc..

So for all of you that has never really had to worry about all of this, be grateful! And for all of the mothers that has went through this, I'm sorry!! It sucks!

Nothing feels as good as home!

(On the car ride home!)

Oh it's so nice to be home! I almost forget how comfortable my bed really is until I'm gone a few days. Monday, Lynlee got "sick" with her disorder. As the previous blog showed I was taking Lynlee the next day (2 Mondays ago, I'm terrible at blogging!) to get checked, her ammonia came back at a 71. Since it was going down we thought we were in the clear but still watching her close.

Well Monday I took her again for our weekly check. She was showing NO signs. I was so sure that she was fine, I almost waited to later in the week. When the lab tech handed me the fold paper and I read the number 129, I almost hit the floor. I was in shock. For a few seconds I couldn't even talk. I just looked at the number 129. Are you kidding me?? Thank goodness I usually always have someone with me. So I ran out and called Pittsburgh. They wanted a repeat done to make sure it was good.

The repeat came back at 96. Pittsburgh made the call that we needed to come up, but we could drive Lynlee. I was so thankful because helicopter rides and ambulances just stress me out so much more, and since the repeat was under 100 you have just a little to play with.

We get to the ER in Pittsburgh and they rush it back. They already had her fluids ordered and another lab ready to go. Ammonia now 78. We were put on fluids, and taken to a room for the night.

I know I'm spoiled. In more ways than one but when they put us in a room with another child I complained. A LOT. I asked to be moved, etc, etc, etc. We have NEVER had to share a room with someone and I didn't want to start now. Obviously they didn't care! I was a total pain, and my loving husband didn't say a word. I was worried Lynlee would never sleep, but really she didn't seem to care. I still think sharing a room (and a bathroom!) with a total stranger where they can watch you sleep is not right!

Okay, back to what really matters. Lynlee's levels keep coming down. We stayed 2 nights total just for all the blood work and for them to monitor her. They are really cautious with her! They made some formula and medicine changes and we left yesterday on a 38! It's been a long time since we've seen a number that low!




The older Lynlee gets the harder it is to keep her busy! She hates setting/laying in her crib and after a while being in the same room. You have to really watch her because she pulls everything! Her feeding tube, her IV's, and whatever else they have on her.I'm so thankful that we weren't in ICU and we could take her out of the bed and out of the room. We've learned from the past to always keep a stroller in the car. We did lots of walking!


So another stay under our belt. It's been over 4 months since the last one. I'm hoping next time is even longer! Faith, Hope, and God will get us there!

4 months

Yesterday was 4 months since Lynlee's ammonia had been high. 4 months is amazing when you think we were in the hospital every 2 weeks for 6 weeks. But yesterday morning 4 months seems all too short.

Lynlee was up at 6:30 throwing up. It's not extremely unusual for her to be throwing up, she is always gagging her self these days. From the moment she woke up she just didn't look right to me. I put it off as teething. She has been up the past couple nights, and probably just not as rested.

While she was eating her 9:00am feed she threw up again. Not a lot, just a little which again isn't unusual. She sometimes will throw up if it doesn't settle right, or if you flush her line out too fast etc. But by this time I was watching her closely. Probably a little too close because I become paranoid!

When she threw up after her noon feed I told Ryan it was time to go. She was now throwing up after every feed and she just didn't look right, and wasn't really playful. However, she wasn't sleepy which is usually one of the first symptoms of high ammonia.

I couldn't not know, and would never forgive myself if I let all these "signs" go by and I did nothing.. So we packed up the car and went to the ER to get Lynlee tested.

I don't know if I'll ever be able to explain that feeling driving to the hospital. I usually leave the house fine. Well as fine as can be. I'm just in the motions of getting everything in the car. Then as we drive, I get sick. Nautious. The closer we get to the hospital the sicker I get and Ryan and I never talk. We don't say more than we have to. I'm assuming he has all those terrible thoughts going through his mind too, and there is really no need to say them out loud.

So we get to the ER get the ammonia it was 75. 75, what a bitter sweet number. Yes, I was happy that it wasn't a 200, but 75 made me want to cry. They discharged us and I called Pittsburgh. The doctor said something is up. Lynlee is fighting something in her body (my guess it's the cold she has from the teething)and her ammonia will either go up or down. When she had her respirtory infection her ammonia did go up to 72 and was back down in the 50's not even 4 hours later. So it's not impossible. He said just to watch her closely, if she became sleepy, cranky or just different get her to Pittsburgh ASAP. Don't go to the local hospital and get an ammonia, and wait for a transport just drive there.

I'm taking her in the morning (unless something would happen this afternoon, which I have FAITH that it won't) to get another ammonia. She seems to be feeling better today. Her eyes don't look as bad as yesterday and she is a lot more playful.

I'm hoping we go atleast 4 more months before I feel that "feeling" again. That not knowing feeling is the worst part of it. I hate this disorder and I'm still praying for that cure or miracle for my baby!

A little bit of everything!

(It was so cute, I couldn't NOT take this picture!)

I don't have a lot to say about one specific topic, but I have lots of little updates:

First and Foremost Lynlee has 2 teeth! Yes, two bottom teeth! They came in last week, and oh what a week it was! My child that has slept through the night since 5 weeks of age (due to the G-Tube) was now waking up 2 to 3 (and sometimes more)times a night. Not fun. But we made it.

We've been trying to say the word No. She is getting really bad at pulling at her G-Tube which I know is just days away from her really pulling it out before I can stop her. So we strictly say NO. And Every single times she looks up at us, and shakes her head no and smiles! I don't think anyone has ever got through this without smiling or laughing. And I know that is a huge mistake, but really what do you do??

Lynlee still isn't crawling. I think she is probably to heavy to crawl, but she is now rolling from every angle in our living room. And she also scoots on her back. I hate it! I know it's good for her to figure out ways to get there but I'm so afraid she is going to rub off that hair on her head that we just got in. Purely Selfish reason, but I can't help it!!


(Lynlee in action going across the living room)

We had our scheduled visit at Pittsburgh yesterday. Lynlee got a bigger Mic-Key button put in. And in the past 24 hours it hasn't leaked. I'm super excited about this! Our Genetics appt went well. They were pleased, and ran blood work. Ammonia came back at 52. I'm not even dwelling on the 52 since I always complain about it being higher and taking longer there. You get the point by now!

They called today and adjusted her formula just a little bit. I'm supposed to be giving her 1 gram of protein a day by mouth. They wanted me to increase it to 2, but I just don't feel comfortable by doing that. Some days she will eat 2 to 3 times a day and get her 1gram, but there are others she won't eat any food. I'm not sure she is ever hungry? She eats 3 1/2 ounces every 3 hours and then gets fed all through the night. So I went to store today and bought some baby food with more protein in it so in the case that she doesn't eat very much she will still be getting close to 1gram.