Wed Update - Abby Back Home

Written Wednesday Morning, September 27th, 2006

It seems the prayers are working. Yesterday around 1:30PM we got to take Abby home! I mentioned before that she doesn’t exactly bounce back too quickly from her surgeries. I think she heard me and wanted to prove her daddy wrong. Perhaps she was also tired of all the noise in the PICU and felt bad for mommy who hadn’t gotten ANY sleep in two days. When we got home mommy and Abby went straight up stairs and fell asleep together for over 3 hours. Unfortunately, that was the last we would see of calm little Abby. The night time was a bit rough.

Once the pain meds wore off, Abby was very fussy and cried a lot. She was also very constipated and that only fueled the fire. We can only give her Tylenol every 4 hours and that just wasn’t doing the trick. Finally, in the early hours of the morning Abby seemed to settle down a bit on her own and fell asleep but the trouble didn’t stop there. As you may or may not know, we still have to hook Abby up to a heart monitor when she sleeps to make sure she is breathing. Abby has been doing great in this department and it’s only gone off once or twice since she’s been home. But last night it went off, and then it went off again, and again, and again… Abby was holding her breath a lot last night for some reason so each time that insanely loud monitor would beep, Kelly sprang out of bed to rub Abby’s back and get her to breathe. We’re hoping this
This morning Abby finally went poop (with some assistance), and we gave her some more Tylenol and that combo seemed to help. As I sit here and type this on my laptop, Abby and Mommy are finally asleep again after a very trying night.

It’s been a long 3 days. Abby will be sore for a few more days we’re told but overall everything went very well. The shunt is working well now and that fluid build up in the front part of her brain was also fixed.

Abby is very lucky to have all of you praying for her. It is evident that prayer works and I thank each of you for all of them.

Have a great Wednesday.

Ryan, Kell, and Abby

Written Monday Night, September 25th, 2006 after Abby’s third shunt was put in.

So let’s back up a bit. On Friday Abby had the MRI. What we learned from the MRI was that Abby had some fluid building up in the right front part of her brain. The question then was, "Why was it building up? Wasn’t the shunt supposed to drain this fluid out?" Good question and the answer is "yes." But this particular part of the brain was blocked. The passageways that usually allow the fluid to pass through were probably clogged. So the plan was to wait until Monday morning to determine for sure whether or not these passageways to that area were in fact clogged.

Over the weekend though, we noticed some other things. Abby was very lethargic and not eating very well and even vomiting. I’m not talking about "spitting up," I’m talking about some serious, " I feel like junk" kind of vomiting. And of course, Abby’s soft spot was getting more firm and her head even seemed a bit bigger. All these are signs of her shunt not working. The sick feeling comes from the increased pressure on her brain caused by all the accumulating fluid.
Monday morning rolled around and the first thing the neurosurgeon did was check her shunt and guess what? It was clogged too. Kelly was right all weekend. Abby was going into surgery. Our neurosurgeon had two things to consider in this surgery. One was to take out the old clogged shunt and put in a new one in and also to tap into that blocked off area where that other puddle of fluid was accumulating. He decided to actually move the shunt from the left side of her body to the right side. While this is better in the long run, it meant he had to cut Abby open to remove the old one, cut her open to put in the new one, cut her tummy again to bring the tube of the shunt down to her abdomen, and then he had to cut the top of her head to take care of that fluid build up.

The surgery took about 2 hours and everything went pretty well. Now comes the hard part. Abby is a fighter but she’s not one to just bounce back with no problems. She’ll probably be in the hospital for a few days. Please continue to pray for Abby’s recovery and pray for Kelly. It breaks my heart to watch her eyes well up when she sees our Abby in pain.

The Gaya’s.

Emergency Surgery Monday Morning. Prayers Needed Today.

From Ryan Monday morning:

I'm on my blackberry right now typing this from the hospital. Abby is being admited for emergency surgery right now. Her shunt is clogged and the fluid that its supposed to drain out is filling up in her brain. They're going to take the shunt out and put on the other side of her head. Anyway, I will give more details later but right now we just need your prayers.

Love Ryan and Kelly

Abby is going in for her MRI today at 1PM. Her neurosurgeon may or may not be available to talk to use about it when it’s over. He’s not sure what his day will unfold but we’re hoping to get some feedback today. The docs plan is to feed Abby right before the MRI so that she falls asleep with a full belly. Once she’s out, we’ll proceed with the MRI. As you all know it is imperative that she lay still. If we get some feedback today, I’ll post something tonight.

We’re not anticipating any problems, but still a prayer or two regarding Abby staying still and calm couldn’t hurt so get to it friends...

Written Monday Night, September 18, 2006

Hello all,
I hope everyone had a good weekend. Kelly’s birthday was on Friday and I am happy to say that Abby was able to give her the best gift possible. She smiled at Kelly for the first time! She has done quite a few times since too so we know it’s not a fluke.
Abby is really beginning to smile. I love it.

Abby was in great spirits for Kelly’s birthday as well as for most of Saturday. Her good mood took a nose dive Saturday night though. Her g tube was irritating her again (shocker), and she hadn’t been able to go poop. My poor little angel was grunting and fussing all night long. Apparently the milk of magnesium we were giving her wasn’t working. But get this. Even with all that discomfort, on Sunday morning, Abby took her first full bottle in weeks! 60 CC’s of milk, down the hatch with no real problems. She was fighting it a bit at the end, but Kelly knows how to calm her down and get her take another 10 cc’s or so if she needs to. It was so exciting. She took a full bottle tonight too so we’re hoping this becomes a trend. We would love to see Abby take a full bottle at least once a day. That would be fantastic. She was also able to go numero 2 today as well. It’s amazing how much different she is after this. She is so much happier. I want so much for her to get past this problem because it’s painful to just watch Abby grunt and cry and scream. I hate it.

Abby is starting to look around and really focus in on things. We like to lie her down under this little bridge like contraption that has a bunch of things hanging from it and some flashing lights and music. We shake all the hanging toys and she loves it. Tonight it kept her attention for quite a while. It was encouraging to see her so interested in all the toys and lights instead of looking around and not paying attention. Abby’s therapy and appointments are still going strong. Kelly has at least 1 a day and sometimes she can have three. Abby is getting an MRI soon. We’re a bit nervous because we’ll know more or less what functions of Abby’s brain have been compromised as a result of her brain hemorrhage at birth. I know it’s not going to change anything regarding our love for little Abby, but it will still be difficult to hear some hard facts. While Abby hasn’t been formally diagnosed yet, she most likely has cerebral palsy. To what extent, we have no idea. It could be as minor as her needing shoes with extra support to wheel chair dependent. But this is what all this therapy is for. With Kelly as the conductor of this Abby Train, you can be sure we’re pulling out all the stops to ensure her best possible outcome.

No matter what though, she is Abby. She is the girl that in 4 and a half short months has touched so many lives. She has a website dedicated to her that has more than 27,000 hits on it. She and her sisters are the ones that have taught a lot of us about what really matters on this planet. A good friend told me after attending the service for my girls that he had personally become a better father that day. That’s fantastic. I am eternally grateful that Heavenly Father chose me and Kelly to send Emma, Maddy and Abby to. We are blessed to have them in our lives and while we always miss Emma and Maddy, we know they live on through Abby.
I decided to rewind a bit and show some pictures of Abby’s beginning road. Remember the CPAP breathing machine? Just look at our little angel. Look at all those IV’s and wires and what not. Seeing these only confirms just how much of a miracle she really is.

Have a great day my friends. Thank you all so much for checking in. Please keep Abby in your prayers for her continued strength and continued success with her feedings.

Love,
Us

HAPPY 29TH BIRTHDAY, KELLY!!!

Written Tuesday night, September 12, 2006

Hello from Abby Town,
It’s been a rough few days with Abby again and it all stems from her G Tube. I have to say, whoever said that this G Tube was "no big deal" is nuts. The G Tube is anything but "no big deal." It has been a nightmare. The irony is that the G Tube is there as a means to feed Abby when she shuts down and doesn’t want to suck from a bottle. Although recently, she hasn’t been feeding from a bottle because her G Tube has caused so much irritation. Go figure.

On Sunday morning, we called the doctor because her G Tube was leaking a lot. And by a lot, I mean that her entire little outfit was soaked in milk that poured out over the night. Abby was also vomiting a lot on Saturday night. The G Tube is supposed to stay in the same spot but we noticed that a lot of slack was going into her tummy. To better explain, picture a straw going into a ball and the goal is to get the straw just on the inside of the ball. What you don’t want to do is push the straw too far into the ball. Well, that’s what was happening. The tube part (the straw) was being pushed too far into Abby’s tummy. This is what was causing her to vomit. The fix to this problem was to put some tape like material around the tube to keep it from sliding in and out.

Another problem that popped up again was the irritated and raised skin where the G Tube goes into Abby’s tummy The doctor burned this off again with that black liquid stuff and Abby cried and screamed like crazy. She eventually calmed down and the doctor also gave us some of this jelly like skin for us to put over her irritated area to act as protective layer.
Abby’s dose of milk of magnesia was also increased to get her poops going. She’s been having trouble here lately and that obviously has a lot to do with why Abby is so uncomfortable. Man did that stuff work!

As of today, Abby is doing much better. She is more calm, less fussy and she weighs 7 lbs!
PS - The other baby in the picture is Luke, who was Abby’s neighbor and boy friend from the NICU. Luke was born shortly after Abby and has a similar story as Abby and her sisters. Luke’s mom Laura is in the other picture. We were given the green light by our doctors to hang out since Luke is on the same lock down requirement as Abby. We’re happy to report that little Luke is doing fantastic. There was a time when Abby was bigger than him, but not anymore! Luke is polishing off 90 cc’s of milk each feeding and weighs in at around 9 lbs! Way to go Luke. It was great to see you!

Written Thursday, September 7th, 2006

Oh man! Check out these pics. Is she cute or what? We didn’t capture it in any of our pictures, but she also had a little bracelet on! Am I just being a bias daddy or is Abby in fact as adorable as I think she is?

Abby has been doing okay this week. She has had a lot of appointments with various doctors this week and here are the updates. Her feeding therapists have been hoping to see more progress with Abby and her feeding, but she is still at her same pace as last week and there isn’t too much more we can do other than what we’re doing now. Some people have asked me exactly what goes into "feeding Abby," so let me break it down for you. I included a photo of how we hold Abby when we feed her. She is on her side and almost lying on our lap because this allows the milk to pool in her cheek before she swallows. We also put rice cereal in the milk before we give it to Abby to make it more thick, which helps Abby control it better. If we gave her milk with out the rice cereal while she was sitting up instead of lying on her side, the milk would come into Abby’s mouth way too fast and freak her out. She would gag and basically have the same sensation that she was drowning. She does gag sometimes even if she is on her side but not as much. What does happen a lot though is that Abby gets frustrated. She’s hungry and she wants to eat, yet she can’t coordinate the suck, swallow breathe thing so she starts to cry. At that point we try to calm her down and then try again. If she doesn’t calm down, we throw in the towel and put the rest of the milk in a big syringe and slowly push it into Abby’s G Tube. The whole process takes at least an hour. We remain hopeful that Abby will eventually have the stamina to take a full bottle each time she has to feed, but her feeding therapists said it’s going to take quite some time. Once again, we’re on Abby Time. Not to worry though, time is something we have plenty of. Not to mention, her mommy just happens to be the most incredible woman on the planet.

Abby’s G Tube is also getting irritated again. This time it’s due to some leakage of her milk around the G Tube hole in her side. Why is milk irritating her you ask? Because it’s partially digested milk from her tummy and it’s very acidic. The acid is literally burning her skin! We were given some cream that acts like a layer of skin and protects that area from the leaking milk so hopefully that will help. Another hurdle has been Abby’s constipation. She gets incredibly fussy and won’t sleep very well until she goes poop, but this has proven to be very difficult for her. We got the green light to give her some milk of magnesia to help things along which we’ll do tomorrow. I hope this works because when Abby finally gets everything out of her system she is an entirely new baby and so much more comfortable.

On a brighter side, she is still gaining weight. She’s at 6 lbs 14 Oz! We absolutely love having her home. Thank you to everyone who has reached out to us. We appreciate the gifts that have landed on our door step, we appreciate the dinners that have been prepared for us, and we especially appreciate your kind words on this blog site.

Love,
Mommy, daddy and Abby

Written Sunday, September 3rd, 2006

Oh my gosh! Has it really been a week since I’ve written? Oops. Sorry everybody. I have an excuse though. Every time I think about writing, I look at Abby and I just have to get my hands on her! I can’t stand it.

As of a few days ago, Abby was 6lbs 10oz! She’s getting up there. She continues to make small strides in her feeding but still not taking a full bottle. A full bottle for Abby is 60 cc’s of milk which is 2 full oz’s. A good feeding attempt for her these days is around 35 to 40 cc’s and we feed her about every 4 hours. She doesn’t do this every time but she does hit 35 to 40 at least once a day. During the nighttime though, if Abby is sleeping, we don’t even wake her up to try the bottle. We just let her sleep and hook the g tube up to her feeding pump. This is one of the few perks of the g tube and believe me, we don’t mind taking advantage of it! Although, if she’s wide awake and looking to chow down, this is not an option. Like last night for example. The little angel was WIDE awake and ready to eat. It was daddy’s turn and I’m happy to report she took 30 cc’s in about 10 minutes for me. Of course after I tried to burp her and got her ready to try again, she was already asleep. Hilarious!

What else? Oh yeah, the g tube area has been doing better ever since we went to the doctor last weekend. We are still watching it though because it can get irritated pretty easily. I’m just happy that we found a cause (or at least one cause) of Abby’s constant crying. She has been doing so much better this week and hasn’t been nearly as fussy.

She still has some pretty bad reflux though and there’s only so much we can do with this from what I’m told. The Shunt is doing well also. It’s doing it’s job and as long as it doesn’t get infected or clogged, we’ll be okay This week is a big week for appointments. Two days she has feeding therapy, one day is physical therapy, plus a G tube appointment and a neurology appointment…all this week.
Woowee! What a schedule.

So there we have it. All is well at Camp Abby for now. I am very anxious for her to progress more on her feeding though so please say some prayers on this topic for Abby. It’s important that she takes at least 1 full bottle a day.

We love you all.

Ryan and Kelly

PS – Today is bath day for Abby, which is great because she LOVES her baths now!