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!

Hola Friends,

Once again, my apologies for the lag time.
Abby is doing okay today, but that hasn’t always been the case. All of a sudden, she shut off regarding her feeding. She went from taking 3 bottles in one day, 2 the next, 1 the day after that to nothing. Not only that, she would freak out and scream about 10 seconds after we gave her the bottle. Was it the reflux? Was it the G Tube? We didn’t know. At her therapy appointment for her eating, Abby didn’t do well at all and Karen, the therapist was not happy to see how many steps backward Abby had taken. Abby was clearly agitated, but Kelly and I were confident that once we figured out what it was that she would do better on her feeding. There are basically 3 topics we needed to cover.
1 – Her reflux. It’s pretty bad and she is already on medication, which obviously isn’t working very well, so there was nothing we could do over the weekend. Today Kelly is going to call our Pediatrician to see if there is anything stronger we can give her.
2 – Her constipation. When Abby can’t go number 2, she gets super uncomfortable. And when was the last time you felt like eating a steak dinner when you were this way? Exactly my point. Abby has no desire to chow down when her tummy hurts like this.
3 – Her G Tube. At the sight of where the tube goes into her tummy, Abby has had some redness and irritation so she was put on an antibiotic in case it was infected. But then this weekend, we noticed some skin was raised up and puss was coming out. Oh no. We were freaking out. Was the infection getting worse? We can’t have an infection because of the shunt! If the infection spreads to the shunt, it could get into her brain and that is big time bad news. Kelly called the hospital and spoke with the on call surgeon who said to come in based on what Kelly was saying. There was a possibility that we’d have to take the G Tube out, put Abby on an IV for a stronger antibiotic and re admit her to the hospital! NO!!!! The doctor said to take Abby to the emergency room first thing Sunday Morning.

Bright and early Sunday, Kelly found ourselves going back to CHOC. We met with the surgeon Kelly spoke with the previous day and he took a look at the skin and the puss by the G Tube. “ Not to worry,” he said! It’s not infected! This is normal irritation. The puss isn’t really puss. It’s just a combination of the dampness of the skin that is forming and the bit of milk that is leaking out from her tummy. The mixture is giving the green look. (The leaking of the milk is normal for right now since the G Tube is still new) Thank Goodness. Man we were relieved. So what now? Well, he did say that the raised piece of skin can be very irritating and that he would burn it away with some black liquid junk. “Will it hurt?” we asked. “Yes. A lot.” And sure enough Abby screamed like mad and cried her big tears. All the while Kelly and I had to hold her down. The surgeon also noticed that there were some stitches still there so he took those out. He said that those could very well be a part of the cause of her irritation. One of them was a in a knot that looked like the knot you’d use on fishing string to put a fish hook on. It was huge. And if that was rubbing inside Abby’s skin? Of course that would hurt! So with that tender piece of raised skin gone and the stitches out, we were anxious to see how Abby would act.

By the time we got home, she did seem much more content and continues to do better today. Abby is taking more of a bottle now and she isn’t freaking out nearly as much. We haven’t gotten back to a full bottle yet, but I’m hoping we will soon, especially if we get some stronger reflux medicine today. Another good thing that came from our hospital visit is that she cried so much it must have shaken her tummy around because she isn’t having any trouble going poop, so that issue is now under control.

I really think that if we get this reflux under control Abby will get back on the right track.

We appreciate all the love and support that you all are STILL giving us. Thank you all for checking in. Please keep it up.

Pray that Abby’s reflux and her myriad of other issues will get better so she can do well with the bottle.

Hello From Abby Town!

Let's see...Abby has gone back to her fussy self and we're having trouble with her feeding again. She was doing quite well for a while and taking at least one full bottle every day. The past few days though she hasn't taken one. My heart aches for her as she tries and tries to eat but because she can't coordinate everything she gets really frustrated and just cries and pulls her head back and gags and everything. Kelly will try to calm her down and give her some "Abby Love" for a few minutes, but that only works sometimes. We have faith that she'll get it though and we're looking forward to starting the therapy up again soon for this. Abby had her eye appointment yesterday and everything is still looking good. We don't have to go back for a month. She can see about 6 inches in front of her and everything is still in black and white. How they know that, I have no idea.

Some other good news is that she is getting more used to sleeping at night and being up during the day. She is also pushing 6 lbs! We're hoping she gets to 6 lbs by her 4 month birthday on the 29th. Right now she's 5 lbs, 14 oz. Kelly and Abby are going to another appointment today for Abby's G Tube to make sure it's working well and that there's no infection. The infection part is huge. Remember, Abby has the shunt too, which is the tube going from her head down to her abdomen. If that gets infected and the infection travels to her brain, we're in trouble. And the G Tube is just another foreign object inside Abby that can cause infection. So we need to keep the girl healthy!

Having Abby home has been wonderful. I love to wake up to her squirming around in her crib and coming home from work to see Kelly holding her baby, fixing up a bottle in the kitchen. It's a picture I wasn't sure I'd see and I look forward to it every single day.

Please continue the prayers for Abby's feeding ability and that her shunt continues to work without infection.

All our love and then some.
Kelly and Ryan

Written Friday Morning

Finally!
Abby was kind to us last night so I actually have a bit of energy to type a few words. Well let’s see. How was the first full week of having our Abby home? It was fantastic! Sleepless? Yep. Especially for Kelly who usually let’s me sleep if Abby is fussing all night.

So here are some technical updates. Abby has been very fussy lately. We had our first appointment with our pediatrician and mentioned Abby’s fussiness to her. She confirmed Kelly’s concerns about the G Tube area being a bit irritated and maybe a little infected. She isn’t concerned that the G Tube itself is infected inside Abby, so we’re just cleaning around the skin with some peroxide. Abby’s little bum is also quite sore and red. Lately she’s been going #2 just about every time we change her diaper, which is good, but it’s not helping the rash. Our pediatrician got her some ointment for that too. And finally, Abby has pretty bad reflux. Her tummy is VERY acidic and she will all of a sudden start screaming, hunch over and ball until the reflux passes. It’s horrible because now my little angel cries REAL tears. Bless her heart. Anyway, we have some medicine for that as well and it’s working. All of the medicines seem to be kicking in which is why I think we got a decent nights rest last night. When Abby gets really hungry, she’ll really get after the pacifier and the other day, Kelly was holding her when the pacifier dropped. As Kelly went to get it, her cheek was next to Abby’s mouth so Abby got after mom’s cheek and started sucking on it and licking it! Priceless. We call it any Abby Kiss. It’s so adorable.

Speaking of hungry, Abby is starting to turn a small corner in this department. Last Tuesday, she took 3 full bottles in a row! She’s NEVER done that before. On Wednesday, she took 2 and even one for daddy. Yesterday she took one but was zonked all day. So zonked that Kelly got concerned and called our pediatrician who said not to worry. We know babies sleep and grow, but we’re on hyper alert with Abby. Especially since a lethargic Abby on top of a fever can mean that her shunt is clogged. If that happens, which we’re told there’s a very likely possibility that it will happen, it’s immediate surgery time to get it unclogged. Obviously we’ll be on the look out for this one at all times. Anyway, we’re super excited that she’s doing so much better with her feeding. Our hope is that all these ointments and medicines will help Abby with her fussiness. It has been an amazing week and like every new parent, we’re starting to get our routine down….as much as possible! Sometimes Abby likes to come in and make up her own routine and throw us off.

I’ve provided some more pics to confirm that as of today, she is still the cutest little nugget on the face of the earth. Abby is starting to make cute faces and she even breaks out a smile every once in a while. And I finally got it in a picture!

We love you. Prayers for Abby’s fussiness and continued success with eating please.

PS – That’s right. The other picture is of the FREEZER I had to buy for Kelly’s breast milk. Abby will drinking milk for days! We’ve had a ton of hurdles, heartaches and issues on this road, but clearly, Kelly’s milk coming in wasn’t one of them!

Written Tuesday Morning August 15th, 2006

As I sit and type this, Abby is right here next to me with Mommy. She is so adorable. She’s getting breakfast through the G Tube since she is so tired and didn’t want to wake up. Feeding Abby has proven to be quite the challenge. The goal is to try and feed her with a bottle each time and then give her what’s left through the G Tube. Sounds easy enough, right? Well, there’s more to it. As you can see from the picture in my previous post when she is in her swing, we rigged the giant syringe that is attached to the G Tube to the mobile above her. This is where we put the rest of her bottle in. In theory, gravity is supposed to take care of the rest. But as soon as a bit goes into our Abby’s tummy she grunts and fusses and pushes it right back up. So her milk goes in her tummy, then out, then back up the syringe, then back in her tummy. This can go on for 2 hours if we let it. We have tried to plunge the milk down with the other part of the syringe and then cap off the G Tube, but Abby doesn’t do to well with that.

We do have a pump that hooks right up to the G Tube and we can set it to give Abby her milk very slowly over a half an hour. We’re actually trying this method right now. Keep your fingers crossed that Abby tolerates this because as it stands now, it ain’t workin’! We have to feed her every 3 hours and when it takes 2 to feed her, that doesn’t leave time for much else.

So that’s the technical stuff. Now on to the good stuff. She is so much fun to have home, even with all that’s going on. I now know why every parent says their child is the cutest thing in the world, because I quite literally believe that Abby is indeed the CUTEST THING IN THE WORLD. We gave her a bath the other night, which as quite an adventure. She wasn’t too into it but it was fun nonetheless. And just this morning, we had some great daddy daughter time as she took a snooze on my chest. It’s nice when she is calm because she is very fussy a lot, so this was a treat. Along with Daddy’s chest, Abby also loves her swing. Put her in that thing and she’s out. It’s great.

The latest feeding status is that Abby is taking on average of 20 to 30 cc’s each time she accepts the bottle. I’m happy to announce she took just shy of a full bottle last night, which is 48 cc’s. We’ll take it! Baby steps! We’re on Abby Time here and that’s what I need to remember.

Thanks to everyone for helping to bring Abby home. Your continued prayers are welcomed and very much needed. Especially regarding her feeding. Please pray that Abby be able to feed 100% from the bottle for every feeding so we can get this G Tube out of her!

Love,
Ryan and Kelly

PS – I thought I’d have more time to write these updates and maybe I will in the future but right now…ha! What was I thinking? Hang in there with me. I’ll try to write them more frequently.

 

 

 

 

 

Abby's First Report from Home!

Written Friday, August 11, 2006
We’re home! And we’re exhausted! Guess who has decided to be a night owl? That’s right… our Abby didn’t sleep at ALL last night. It’s 4PM right now on Friday, and guess what? She’s sound asleep. Can’t wake her up for nothin’. I just feel bad for Kelly right now. Bless her heart; she let me sleep last night! I didn’t get the best sleep but Kelly got zip. Literally. I’d wake up every 30 minutes or so and find Kelly still holding or rocking Abby. She Maybe 15 minutes here and there. All you current parents are laughing right now I’m sure.

It was quite the day yesterday and very emotional, but it is VERY nice to be home. Kelly and I find ourselves looking around for the NICU monitors, the nurses, and where to put the diaper when we’re done with it. Should we weigh it? Where’s the temp a dot thermometer? The gauze? The chickapea wipes? Hey! Abby has no chords connected to her! Hooray!

Other than the opposite sleeping schedule, Abby is doing fantastic. She is starting to take the bottle again. The G tube is serving its purpose and anything that Abby doesn’t take from the bottle goes in that way. We’re nowhere near where we need to be yet in terms of Abby being able to feed 100% from a bottle, but not to worry. She’ll get it. Our Abby has proven that she can conquer just about anything.

As for the nursery, I have two words…. What nursery? We haven’t done anything! Remember, Kelly went on strict bed rest in the hospital at the end of March at 23 weeks. Ever since then, it’s been all about the babies. Abby sleeps in our bedroom though in a co sleeper, which is a crib with the side open and is level with our bed so Kelly can literally roll over and see Abby. It’s perfect for now. After we get somewhat settled we’ll tackle the baby room. Kelly is going to be very busy though. Abby already has a ton of appointments scheduled. 4 days a week Abby and mommy will be back up at CHOC at the developmental clinic. 3 of those days are for her feeding therapy (the whole suck, swallow, breathe thing) and 1 day a week for physical therapy for her motor skills. On top of that she’ll have her pediatrician appointments (which because of her prematurity will be quite frequent), her neurology appointments for the shunt, her G Tube appointments, her eye appointments for the ROP, and her acupressure appointments. That’s right people! We’re pullin’ out all the stops. Abby is going to have to work a lot harder to learn the basics and starting now is the best thing for her. Wow! Even just re reading that I got tired. I have no idea how momma is going to do all that… with no sleep. Actually, I’m not worried. Kelly has amazed me during this and continues to. Her commitment to Abby and her well being is off the charts.

I can’t express how happy we are right now. We want nothing more than to take Abby out and show you all. Unfortunately though, she’s still on lock down, per doctors’ orders. With her shunt and her G Tube, we need to be extra careful about any kind of infection. Please know that we’re DYING to show her to you all!!!

Thank you EVERYONE for EVERYTIHNG. So many of you have done so much. It means the world to us. Our little Abby is home. Unbelievable. At the begining, there were moments when we weren’t sure if this time would come. But it has arrived, thanks to all the love and prayers from all of you.

STAY TUNED FOR "ADVENTURES OF ABBY LYNN…. VOLUME II." HER DEVELOPMENTAL STAGE. I’ll keep writing as long as you keep reading!
Abby loves you! (We do too)

ABBY COMING HOME!!!

ABBY IS COMING HOME!!!

STAY TUNED FOR A PLAY BY PLAY OF HOW IT ALL GOES DOWN TOMORROW.

I HAVE A LOT I WANT TO SAY TO EVERYONE THERE AT CHOC BUT IT’S PRETTY LATE RIGHT NOW AND AS ALWAYS, WE’RE TIRED!


I WILL SAY THOUGH THAT I AM GRATEFUL BEYOND WORDS FOR ALL OF YOU AT CHOC FOR WHAT YOU’VE DONE FOR ABBY. WE’RE VERY SAD THAT WE WON’T BE WITH YOU GUYS EACH DAY. KELLY IS ESPECIALLY UPSET! AND THE FACT THAT WE’RE SAD TO GO, THAT WE’RE ACTUALLY A BIT SAD TO NOT BE AT THE HOSPITAL WITH YOU ALL SAYS A LOT ABOUT HOW GREAT YOU GUYS ARE. YOU HAVE ALL MADE AN INCREDIBLY DIFFiCULT EXPERIENCE A LOT EASIER TO GO THROUGH.

NOT TO WORRY THOUGH! OUR LITTLE MISS ABBY IS ALL ABOUT THE ATTENTION. KELLY WILL BE UP THERE A LOT FOR THERAPY APPOINTMENTS SO I’M SURE SHE’LL CHECK IN TO SAY HI.

ABBY IS COMING HOME.
ABBY IS COMING HOME.
ABBY IS COMING HOME.

I CAN’T BELIEVE IT.

Fingers Crossed.....Read On!

Hey Abby Fans!

I’m having technical difficulties with my email. Sorry for the lag time. I’m at work right now, so I don’t have the pics I promised. Sorry Grandma’s!

Anywho, really quickly, Abby is doing okay. She doesn’t like the G Tube, but then, who would? Before the surgery, she was doing pretty well on her feedings and starting to take about 25 cc’s or so each time she was fed by the bottle with a couple times taking the entire bottle. Now, we’re lucky to get 20 cc’s of milk down her. I am confident though that she’ll get it going and now that we have the G Tube in, all the remaining milk will go in through that. It is literally a tube that sticks out of her left side. We take the milk and put it in a giant syringe that gets placed on a machine that pushes the milk in slowly over about a half hour.
Abby will also be coming home with a heart monitor. After the surgery she has spelled a couple of times and that concerns the docs. We only need to have her hooked up when she is sleeping at night though so it’s no big deal.

And here’s the best part. If all goes well she’s coming home THURSDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!

Please keep up the prayers that everything will run smoothly, that Abby continues to get her strength back, that she doesn’t spell anymore, and that we can take our baby home on Thursday, which will be 104 days in the NICU.

I’ll get you guys those pics. I’m sorry they haven’t come through. After reading the last few postings I realize how boring they are without some cute shots of our Abby.

PS – I will always refer to her as “our” Abby because I mean to include all of you. You are all a very intricate part of her life and ability to fight. I have no doubt that your prayers and good wishes are heard.

I love you all. I love our Abby and I can’t wait for Thursday!

HAPPY 30TH BIRTHDAY, RYAN!!!

Abby's G-Tube

Hey there everyone,

Abby got her G Tube yesterday. I’ll take a picture of it and post it tonight. She did very well during the surgery and was able to come off of the breathing vent immediately. We brought her back to the NICU where she slept the rest of the day. She was in a lot of pain though and that was hard for Kelly and I to see. We called in this morning and were told that she is doing a little better and is getting a steady dose of Tylenol as well as some other pain killer which is taking the edge off.

Abby has an IV in right now and won’t get any milk for another day and a half or so. Remember, the G Tube goes in her left side to her stomach so she got poked through her stomach muscles and her stomach and all that needs to heal up before we start using it. The tube is a lot bigger than I imagined and a lot longer. The good news though is that in 4 to 6 weeks we’ll be able to replace that tube with a button looking device that only pokes out about a quarter or a half inch.

All in all, it went well. It’s just hard that she’s in pain, so please pray that she recovers quickly and with as little pain as possible.

I love you people. Please say hello via this website. Even if we don’t know you. It’s really cool to know that our Abby has touched the lives of people we haven’t met yet.
I say “yet” because I hope to meet all of you one day… and so does Abby.

Have a good weekend.

Quick Abby Update

Written 12PM on Thursday.

Kelly just called me. Abby’s eyes are fine. The fact that her left eye doesn’t dilate when light hits it is because of the scar tissue that formed during the laser surgery. It will not affect her vision at all. Also, THE LASER SURGERY SEEMS TO HAVE WORKED! Her eyes will be okay. She’ll need glasses and what not, but the likelihood of her going blind is very very small. As a result of this good news, the MRI is canceled which was ordered because the potential eye problem could be neuro related.

At the moment, the docs and nurses are still trying to coordinate Abby’s G Tube surgery. We’re trying to squeeze her in today, and it’s considered a last minute surgery so it’s hard to put it all together. Not to mention if an emergency surgery is needed from another patient, Abby gets bumped.

Say some prayers that Abby will get the G Tube in today, because the sooner that happens the sooner we can take her home. Home! HOME! HOME!!!!

Exciting Abby News

Written Wednesday Night, August 2nd 2006

Thursday has turned into a huge day. First of all, Abby’s eye exam is scheduled for 9AM. I noticed a few days ago that Abby’s pupil in her left eye doesn’t seem to constrict (get smaller) as much as her right eye when we turn on the lights or she opens her eyes. This is definitely cause for concern so we brought in Abby’s Neurosurgeon. After examining Abby he decided to order an MRI on Abby’s head so he can get a good picture of what we’re up against. We know that the left side of the brain controls the right eye and vise versa and the right side of her brain is the side that has the Grade IV brain hemorrhage so it would make sense that her left eye is having more difficulty than her right. A side bar benefit is that the neurosurgeon will be able to get a good idea for just how severe Abby’s brain hemorrhage is. Her eye doc will also be able to tell us a lot about Abby’s left tomorrow as well as how things are looking regarding the progression of the ROP.

The MRI requires Abby to be knocked out and have that horrible breathing tube stuck down her throat again. But we’re going to kill two birds with one stone here. While she’s knocked out, she’s going to get wheeled over to the operating room to get her G Tube put in. Yep…you heard right. The G Tube is going in tomorrow. So let’s recap: 9AM – Horrible, painful eye exam 10 – 11AM – breathing tube goes in, Abby gets knocked out and we get an MRI done 12 – 1PM – Abby stays knocked out, gets the G Tube put in.

After her G Tube surgery, Abby will be off her feeds for a few days and will have yet another IV put in. Once we get back up to speed on her milk feeding though, we’ll be close to going home.
We are extremely nervous for tomorrow with all that is happening but we will get a lot of answers as well. We’ll get some answers on her eyes, her brain, and get the G Tube put in. Needless to say, we’re all very anxious.

Prayers prayers prayers friends. Please! We’re almost there.
We love you
Ryan and Kelly

PS – Abby weighed in last night at exactly 5 lbs!!!!

Wed News

Written Tuesday Night August 1, 2006
It’s been a long day Abby fans, so let me make this short 'n sweet.

Abby is still doing well in every aspect except her feeding. As I’ve mentioned before, she’s getting it down, it’s just taking a while. So, we are moving forward with the G Tube. Abby was seen by the GI doc (the doc that will put the G Tube in) and her nurses are calling to get the surgery appointment scheduled. We’re told that Abby will be able to come home around 7 days after the surgery. Maybe you didn’t hear that, so I’ll say it again…ABBY WILL BE ABLE TO COME HOME!!!!!

In other news, Abby’s eye doc is coming by on Thursday to give her another update. Gggrrrreeaaaaatt…. I know she needs it, but man she hates those exams. The doc puts this prong deal in her eye to keep it open and it really hurts her. I am curious to know about the ROP (the abnormal growth of blood vessels that can damage the eye and even cause blindness if not treated). I want to be sure the laser surgery stopped the ROP from getting worse.
Tomorrow we find out when the surgery will be so stay tuned for that one.

I can’t wait to get Abby home. It’s actually becoming a reality now. I am having day dreams of the Abbypoluza Tour 2007 I plan to take her on next spring.

There are a few hurdles ahead yet, so don’t slack off on the prayers people. We need them now more than ever. We’re on the home stretch, the last lap, the back nine, inside the 5 yard line!

All our love and Abby’s too.

The Gaya Family (That’s the first time I wrote that…I like it!)

Happy 3 Months, Abby!

Written Sunday Night, July 30th, 2006

Go Abby! It’s your birthday! Go Abby! It’s your birthday!

Saturday was Abby’s 3 month birthday. And she celebrated with a nice, rather uneventful day. She is still working on her feedings and while she’s progressing slowly, she’s not where we need her to be. Kelly and I are confident that Abby will eventually be able to take a full bottle every three hours eventually because she is taking more on average each time and she is beginning to take a full bottle more frequently lately.

Our main goal though is to get her home! And that means putting in the G Tube I mentioned in my previous update. The G Tube is a tube that will literally stick out of her side and go inside to her stomach. Each time Abby doesn’t take a full bottle, we’ll give her the rest of her bottle through the G Tube. It is temporary thing too, which is good to know. How temporary is anybody’s guess. That’s Abby’s call. So this week, Kelly and I will be discussing with the docs our options about when to put the G Tube in and the details that go along with that.

I don’t have much else to report. The eye doc hasn’t come by yet to do another follow up on Abby so there’s no news there. She is looking all around and you can tell when she’s looking at you, which are all good signs.

We love our Abby and her 3 month birthday comes with joy and sadness because we also love and miss her sisters terribly. And while today was sad as we remembered Emma and Maddy, we know we’re lucky to have our Abby, each other and all of you praying for us. We love you all and yes, we still enjoy the comments so please keep them up.

Have a great Monday and enjoy the new pictures.
Ryan and Kelly

Abby news

Written Thursday Night, July 27th, 2006

Abby has been doing better with her feedings the past few days but still taking her sweet Abby Time to get adjusted to it all. She’s averaging around 20 to 25 cc’s each feed and busts out every once in while and takes a full bottle, which for her is a whopping 38 cc’s. We need her to bust out a bit more frequently though, and that’s where our super favorite Developmental Therapists, Karen and Kathy, who call Abby "a burnin’ hunk of love" come in to play. They have decided to kick Abby into high gear. She now gets bottle fed twice, then one feeding via the nose tube thing, (called a core pack), then two times from the bottle and so one. Before it was two times via the core pack and only once from the bottle.

We’re stepping it up for two reasons. 1 – To help our Abby Girl get the show on the road. 2 - We’re running out of time and we’re running out of reasons to tell the insurance company that we need to keep her in the NICU. See, Abby is doing pretty well in every aspect except for feeding. Unfortunately, there is a way around the feeding problem and if her feeding issues are the only thing standing in the way of Abby going home, the insurance company will push for the docs to use it. That "way around it" is called a G tube, which is a gastric feeding tube that gets placed in Abby’s side and she is fed via this tube. Many have asked, "why not just send her home with that tube that goes in her nose since that’s how she gets her milk now?" Good question… The problem with that though is that she can pull that out and once it’s out, you can’t just shove those things back in and hope all is well. You have to get an x ray done to make sure it’s placed in the belly and not the lungs. I don’t have an x ray machine lying around my house and unless you guys do and can roll that puppy on over, that option is out. So yeah, it’s on to the G tube. Kelly and I were really hoping that with all Abby’s been through, she would be G tube free but it’s not looking that way. And frankly, we’re really warming up to the idea because we know we would get to take her home sooner. Besides, the G tube is a temporary fix and when she becomes too tired or fussy to take the bottle, we can use the G tube as a back up plan to get her the necessary milk she need. Many many little ones go home on G tubes and many live with them and are doing great. And again, if it gets our Abby home sooner, I’m all about it.

So there it is friends. G Tubes. Google that one for yet more higher learning if you want. I can’t wait to get Abby home. She is indeed a burnin’ hunk of love and I adore her more than words can describe.

We love you all!
Us

PS – To Karen, Laura, Jennie and Jeana, Abby’s primary nurses whom we think the world of…we miss you guys! We’re back in room 210 these days so hurry up and get back to work!

Abby update

Written Tuesday night, July 22, 2006

Okay okay!
So I lag. Yeah yeah, I’m sorry.
Anywho, let’s move onto Little Miss Magic. On Sunday, she continued to recover well from her shunt surgery and the same goes for Monday. The neuro team came down to check on Abby’s new shunt which is working wonderfully. She is doing okay on her feeding, which is now the biggest item on the list o' things for our Abby Girl. As you all know, she needs to be up to full feeds in order to come home, which means she needs to be able to feed from a bottle every 3 hours. Right now, we’re only giving her a bottle 3 times during the day and once in the middle of the night, or 4 times every 24 hour period. A "full feed" is 38 cc’s of milk. Last week Abby took a full bottle a couple times but spent most of her efforts only taking around 15 cc’s. Today, she took the full bottle in the morning, 20 cc’s at 2PM and 24 cc’s at 8PM! So, that’s definitely a step up. It’s not the full 38 cc’s but she is improving.

She is now back in the "feeder grower" room too, which is where they send the low maintenance babies. Abby is low maintenance! Nice huh? Let’s see, what else? Oh yeah, her eyes. Still nothing new and we’re not sure when the eye doc will come back to give her another exam. It probably will not be until next week. As of the last eye exam, the laser surgery was doing what they had hoped.

To all of you guys that we’ve met at CHOC, we love you all. The love and care that Abby has received there has been unbelievable. Thanks to each of you for all that you do and continue to do. I know we’re not out of the woods yet but Abby is getting closer to coming home. It’s actually starting to become a reality lately. We’re hoping she’ll get home in a few weeks, but we need all your good thoughts and prayers to get her there. Specifically, please keep her feeding situation and her eyes in your prayers.

Take care everybody.

Kelly and Ryan

Weekend Abby Update

Written Saturday night:

We got up this morning thinking it would be another good day with Abby. Boy were we wrong. We immediately noticed that Abby’s soft spot was a bit more full than normal. In fact, we noticed this the night before, but the doctor said it was still soft and felt fine. Kelly knew something was up though. Abby was lethargic and she had been pretty fussy the past couple of days, which are all signs that pressure is building up in her head. So we got the neurosurgeon that was on call this weekend to come down to have a look. At this point, Abby’s soft spot was even more full than the morning and after the doc tried unsuccessfully to pull fluid from the shunt by poking a needle in it and pulling back on a syringe, she determined that it was indeed clogged and needed to be changed. And just like that, Abby was headed down to the O.R. for brain surgery number 3. Nurses were running around, getting the mobile isolette ready to take Abby down in, preparing the paper work, making phone calls, and in about an hour, we were off to the O.R. Kelly and I couldn’t believe it. Our Abby was going into surgery…again. And that meant the breathing tube went back down her throat. We were scared for this because the last time Abby had a shunt put in, she took forever to come off the ventilator after the surgery. How long would it take this time? How would Abby recover? We’d just have to wait and see. After an hour or so, the neurosurgeon came out to greet us in the waiting room. The surgery went well and sure enough, Abby’s shunt got clogged, which is pretty common in the shunt world. The good news was that Abby was already off the ventilator and breathing on her own by the time we went in to see her after the surgery.

We got her back to the NICU and she was already doing better. With the pressure off her head, she wasn’t as fussy and she even started back on her full feeds at 9PM. We just called (12AM) and she is doing well. She’s comfortable and sleeping.

We’re hoping Abby has a better Sunday and gets back up on her bottle feeding. She’s our little fighter, our little Million Dollar Baby. Her strength and resilience is unbelievable.

As for me and Kelly, it was another emotional day. The roller coaster ride continues. I will say though, Abby has her sisters and her Father in Heaven in her corner. It’s not every day that a last minute surgery can happen as fast as it did today and on a weekend no less. A lot of people had to be in the right place at the right time to get Abby the attention she needed. Our thanks to all of those involved today and of course to our Heavenly Father.

Keep the prayers up that Abby continues to have a speedy recovery from the surgery, for her eyes, and for her ability to eat from the bottle.

And finally, SHE’S 4 LBS 8 OZ’S!!!!! Nothing can stop our Abby!
Enjoy the pics

Abby update

Good Morning Abby Heads,

So, where did I leave off? Wednesday huh? Okay then, here we go.

Wednesday was a good day for Abby. She was doing great with her bottle feeding. She was alert and looking around and things were peachy. Kelly and I went to dinner and came back at 8PM sharp because Kelly gets to bottle feed her now at that time. But we were stopped in our tracks! Abby’s nurse, Jamie told us the Eye Doctor was coming by in a half an hour to check her eyes. What??? Why so soon? No clue. But he was coming so we held off on the bottle feed and waited for Mr. Eye Doc to show up. Of course now we’re nervous. Did the laser surgery work? Will Abby be able to see down the road? Our minds were racing. And because this guy was late, Jamie had to put drops in Abby’s eyes to dilate them twice! The drops don’t hurt, they just kind of blur her vision apparently. Anyway, Mr. Tardy Eye Doc strolls in close to 9PM as opposed to 8:30PM and does the eye exam. It’s a horrible situation. A couple nurses held Abby still while the doc put this clamp thing to keep Abby’s eyes open. Kelly and I were across the room and could barely stand it to hear her cry and scream. But it was over after about 5 minutes and the eye doc was happy to report that so far, everything looked good. He gave the following analogy; "The laser surgery’s job is to block the forming of any more blood vessels, like a wall of sand bags blocks rain in a storm. You stack up the sand bags and hope that the stack is enough to do the job. We’re hoping that the laser surgery is enough to do the job with Abby’s eyes, and block those blood vessels and keep them from growing." So with that, he said he’d be following up with Abby next week as well as the week after that. While each eye appointment will give us a better idea for how well the surgery worked, we won’t know for sure if she’s out of the woods for about a MONTH! What stinks is that Abby doesn’t do well after these eye exams. She was NOT in the mood to take a bottle at all after the exam. And that clamp thing irritates her eyes so they get swollen. It’s a pretty bad deal all around so we’re not looking forward to these eye exams in the weeks to come. It’s a necessary evil though I suppose.

Alright, so on to some good news. Abby seems to be responding well to the vital stim treatment to help her feed from a bottle. Even though she hasn’t taken as many cc’s of milk in the past few attempts, her quality of bottle feeding has been a lot better. She’s more calm, she’s awake, and she swallows the milk better after she gets it in her mouth. The developmental therapists have increased her bottle feeding attempts each day to give her more opportunities to learn. It will take a while they said, but she is making some good progress.

We’re definitely on Abby Time here. We can only go home when she can feed from the bottle 100% and only Abby will tell us when that will be.

One thing is for sure though, she’s more cute than she was yesterday and I’m sure she’ll be even more irresistible tomorrow than she is today.

Have a good weekend everyone,
Ryan and Kelly

Wednesday update

We have great news to report this morning friends.
For the past 2 nights, Abby has taken her full bottle! 37 cc’s both nights. And last night she did it without spilling a drop. As you all know from my last report, she is going through that vital stimulation or "vital stim" therapy and it is most definitely helping. Each morning, 2 little pads that are connected by a wire to a remote control get taped below Abby’s chin on her neck. Twice a day, the remote is turned on, and little electric waves stimulate Abby’s sucking muscles during her feeding. Ironically, she doesn’t do so hot when the vital stim device is actually on. The therapists are pretty sure it’s annoying her, but also know that it is working. For example, yesterday she only took around 15 cc’s from the bottle each time she was feeding while the vital stim was on. But it’s no coincidence that she’s all of a sudden taking a full bottle at night, so even though the vital stim is bugging her right now, we’re okay with that because it is teaching her to use those muscles.

Some more good news is that Abby now weighs 4lbs 2 oz’s! She’s doing great in that department. Her spells are still very few and far between. A few a day at the most. It’s a good day! Now if we can just get some news on her eyes! I hate waiting on that one. Kelly and I are so anxious to know if that surgery worked or not! But for now, we’ll take the good news on the feeding and continue to pray along with you guys that the eye surgery worked and her eyes are okay.

And lastly, today is MY mom’s birthday. HAPPY BIRTHDAY GRANDMA PAMMIE!
Tons of love,

Ryan and Kelly

Abby update

Hi Team,

Not much to report today. Abby was out like a light for the entire day. She didn't really wake up this evening either. She did okay on her suck swallow breathe coordination today but not fabulous. I will say that she's making progress though. While she still isn't taking the full 35 cc's from the bottle, her average has increased quite a bit. At first she was taking between 5 to 10cc's and the occasional 15. Now she's taking around 10 to 15 with the occasional account's. She'll get it. She's just on what I now officially call "Abby Time."

We still don't know if an eye doc is going to come by later this week or next week to examine Abby's eyes, but will be sure to let you all know when that happens.

Prayers for the eyes and her ability to feed from the bottle please. Lots and lots of them...!
We love you all.
I'll get some more pics up soon.
R n K

Sunday Night

Hello my friends,

As I sit here and type this update from my Blackberry, Kelly has our little girl in her arms. Its quite a sight! Abby is doing well today. Her eyes aren't nearly as swollen from the eye surgery and she is opening them up and looking around again. We won't know if the surgery worked for a couple of weeks though, which is frustrating for everyone. That's alright though because we have plenty to work on in the mean time, which brings me to her eating situation.

As we know, Abby's suck, swallow, breathe coordination is coming along slowly. She is now on a treatment called vital stimulation or "vital stim." The developmental therapist places little elctrode pads on her neck below her chin. These pads are connected to a remote control device with wires which send small electronic waves to stimulate the muscles Abby needs to use to swallow. So far it seems to be working pretty well. And today she took 16 cc's of milk with mommy holding her. That's a personal best for mom so she was excited about that.
Abby is growing a ton too. She is almost 4lbs!

That's pretty much it for now. The two topics of interest are her eyes and her eating. Please keep these issues in your prayers.

I know I've said this a few times but I need to say it again. Kelly and I are so touched at just how many of you check in on our baby girl. We got another glimpse of how far reaching the story of our three girls has been. We are lucky to have all of you and appreciate each and every kind thought and prayer.

All our love,
Ryan and Kelly

Abby news

Hola amigos,

A quick update because I’m pooped.

I left off on Tuesday night. So on Wednesday Morning Abby’s eyes still looked like Rocky’s after he fought that Russian dude in Rocky IV. She was very agitated and fussy just about the entire day. It was difficult for Kelly to see our little Abby Girl so uncomfortable. In fact, she even threw up so much that it came out of her nose and gave Kelly this wide eyed look that screamed “help me!” It was heart breaking. By the evening though, she got a little better and we were finally able to pull ourselves away around 11:30PM.

Today she made some more progress. Her eyes aren’t as swollen any more, she is a bit more calm and less agitated and overall, seems to be more comfortable. She doesn’t like to open her eyes though. She tries, realizes it still hurts to open them, cries a bit, then shuts them.

Abby also did some bottle feeding today. She took 13 cc’s in the morning and 16 cc’s with mom in the afternoon. As an FYI, a “full feed” for her is 35 cc’s, so she has a long way to go, but we’re getting there. Her spells were pretty much nonexistent as well which is a good thing.

Attached is a picture of her after the surgery with the CPAP back on. And the other one I just took tonight after we tucked her in.

I have to say, holding my little 3lb and 14 oz baby is the most peaceful thing I’ve ever done. My favorite is holding her so her head is on my shoulder and I can hear her take her little preemie breaths. It makes me melt. I’ll have to remember this when she’s 2, running around the house and screaming like a maniac!

Have a good weekend friends.

Eye Surgery Report

Tuesday, July 11th, 2006 – Eye surgery day.

It’s 1AM and Kelly and I just got home. The surgery started at 2PM and went well. We won’t know if the surgery was a success or not for a couple of weeks.

After the surgery is a different story. Abby was under so much anesthesia that she started to spell a lot. She wasn’t remembering to breathe on her own. They were pretty bad spells too. The nurses had to “bag” her quite a few times to get her heart rate back up. Finally, Abby was given some anti-narcotic medicine, which literally reverses the affects the anesthesia was having on Abby. Abby went from being free of pain and knocked out, to in a lot of pain and wide awake immediately. It was crazy. This was obviously better than her spelling but it was terrible to hear her scream. To make matters worse, the anti narcotic medicine didn’t really work. She only lasted a short while with her heart rate up, so the docs put her back on the CPAP ventilator to help her breathe. Not the little nasal cannula, the big CPAP. Abby hates the CPAP! She was miserable.

Kelly finally put her finger in her mouth to serve as a pacifier and it worked to soothe her for the time being. She stayed on the CPAP machine until 10PM. Abby had an IV put in to get some nutrients during the surgery and the nurse was able to take that out around 11PM and she started feeding again around 11:30PM. Only 10 cc’s of milk to start with, but she’ll be back to full feeds (34 cc’s) by tomorrow afternoon.

When we left, Abby seemed relatively calm and getting back to normal. Her eyes are very puffy and blood shot and have a lot of goop coming out of them. She looks like she just went 12 rounds in a boxing ring. Let’s hope the surgery worked. We do NOT want to do that again.

Thanks everybody for your positive thoughts and prayers.

Abby Scheduled for Eye Surgery Today at 2 PM

Update as of Monday night July 10, 2006

Alright Abby Fans,

Abby's eye surgery is at 2PM today, Tuesday. Prayers people. Pray like crazy. We’re told it’s going to take a few hours so it’s a big waiting game. I hope the eye doc will be able to tell us what his gut feeling is afterward and how he thinks she’ll turn out, but I’m assuming he’ll give me the old, “we’ll just have to wait and see” line. Gggggreeeaaaaatt!!!!! Another “wait and see!” Sweet. Super. Okay, so anywho, on to some good news. Abby woke up at 2AM Monday morning, chomping on her fingers, smacking her lips around and looking for food. So her nurse grabbed a bottle and decided to try bottle feeding her. She took 20 cc’s! A new Abby record. Her previous was 15 cc’s by the way. And she did great coordinating her suck, swallow breathe stuff too. Way to go Abby. But the nurses were right about this bottle feeding being a roller coaster too. At 11AM that same morning, she only took 2 cc’s. Then at 5PM she took around 13 cc’s mommy feeding her. Mommy was super excited that she was able to do this. Why you ask? Well, feeding a preemie is a bit of an art. Abby has to be held in a specific way, at a specific angle and straight so her tiny airway doesn’t get kinked, you have to watch her closely to see if she’s breathing, if she’s not, you have to pull back on the bottle to give her room to breathe, but don’t pull the nipple out of her mouth if you can help it, and on and on…. I’m supposed to give it a shot too some time this week too. We’ll see how that goes. So that’s all great stuff. She hardly spells throughout the day now and she poops like nobody’s business. She gets pretty backed up though and she spends a lot of the time grunting and even starts crying because she’s so uncomfortable. It’s heartbreaking to hear, but then all of a sudden, after her tummy has calmed down, she just falls right back to sleep. The bummer is that tomorrow, she’ll stop her feedings, go back on an IV, go through this horrible, irritating and painful eye surgery, and only after she recovers will we be able to get her back on the feeding schedule. We’re making such great strides lately and it’s so upsetting to know we have to put it all on hold. You gotta do what you gotta do though and Abby’s eyesight is obviously the most important thing on the list right now. We love you guys. Shoot some good positive thoughts and prayers to our Abby tomorrow.
PS – The Cow Outfit is back!

Abby news

Abby’s eyes are getting worse. The ROP or Retinopathy of Prematurity is basically abnormal blood vessels that form in Abby’s eyes. Sometimes these blood vessels just stop growing and no treatment is needed, but in Abby’s case they continue to grow and are getting bigger. If this continues, Abby can go blind. The treatment is laser surgery that will kill these abnormal blood vessels. The eye doctor says this works 3 out of 4 times. Abby will lose some of her peripheral vision from the surgery but it will preserve her central line of sight vision. The surgery will happen sometime this week. We’re not sure exactly when. Abby will have to stop her feeding and have an IV put in for some supplemental nutrition fluids after she recovers from the surgery. Thankfully, she won’t have to have the breathing tube put back in her throat, but this is definitely a big step backward.

Abby is also continuing to have a bit of trouble with her suck, swallow, breathe coordination. She is picking it up, but very very slowly. The developmental therapist has increased Abby’s bottle feeding attempts so she gets more practice. She is taking a bottle twice during the day shift, and once at night. On a positive note, Abby is still gaining weight each day, she is still breathing on her own and she’s getting cuter every minute. We really need everyone’s prayers…again, to get through this eye surgery. Kelly and I are both very worried about the whole thing.

Please pray that the surgery will go well and be a success.
Take care, Us

Abby update

Yo!
Abby Girl is doing well today. She didn’t have hardly any spells today and she made some great progress on her suck, swallow, breathe coordination. She took 15 cc’s from the bottle today and didn’t spell once during her feed! To back up a bit, she was only taking 5 to 10 cc’s before and she would spell a lot during the whole ordeal. She spells because when she sucks on the bottle, her mouth fills up with milk and she gags on it because she’s not sure what to do with it. Eventually she’ll either swallow it or spit it out. When she can’t coordinate everything, she gets stressed out and we’re told she feels like she’s drowning. How horrible is that? This is why we’re so glad that she is finally making progress on this. And as I mentioned before, Abby feeding on her bottle is a pre requisite to her coming home!

Tomorrow is Abby’s eye exam. This is another topic we’re anxious about. Our hope is that the ROP hasn’t gotten worse. There is a possibility that the ROP can cause Abby to go blind. She is a stage 2, grade 2 right now, which isn’t "that bad" from what we’re told. It is common that the ROP will stop on it’s own and Abby’s eyes will continue to grow. If the ROP doesn’t stop, there is a laser surgery that will happen but that only has a 50/50 chance of working.

Other than that, Abby is doing really well. Her shunt is working well. She is gaining weight and her tummy and kidneys and heart and lungs and everything else are working well. Oh! She’s back in her old room! She actually moved back there the SAME day she was moved to the quite, not so sick room I mentioned a few days ago. As it turns out, she wasn’t THAT healthy. Hilarious. It’s not a big deal. Abby is still having a few spells a day, and apparently to be back in the "feeder / grower room" Abby has to be pretty much spell free. That particular day she was quite fussy and had a lot of spells. We’re happy about it though because we like all the parents in her old room and enjoy it there more.

As promised here are some more pictures.

We love ALL OF YOU. POP IN TO SAY HELLO ON THE SITE!!! IT'S STILL SOMETHING WE VERY MUCH LOOK FORWARD TO.

Message Board Down. Another Version Coming Soon

Just a note to let everyone know that the website that hosted the message board isn't working for some unknown reason. So, over the next day or two I'll be setting up a new message board. It'll be up and running shortly, so check back again soon and please post away when it's back up!

-"the webmaster"

Abby news

Hey Team,

Sorry for the lag time here!
I’m at work right now so I don’t have too much time to ramble on like I usually do. Abby is doing well for the most part. We don’t have any further information on her eyes but she is getting an exam some time today or tomorrow. We’re really hoping that the ROP hasn’t gotten worse. Also, she isn’t really progressing on her suck swallow breathe coordination too well. This is also very important because she needs to get this down in order to come home. Her spells are doing better though so that’s good news. She spells a few times a day on her own and when we’re trying to feed her with a bottle but that’s it. What else what else…. Oh yeah. Abby is still gaining weight and digesting mommy's milk well through the feeding tube in her nose. She does have some reflux from time to time though still and we’re hoping that these little spit up episodes remain as few and far between as possible.

Everybody asks when she’s coming home. The general answer is that preemies usually go home around their original due date, which for Abby, Emma and Maddy was August 4th. Abby has a lot to accomplish from then until now though so we need your prayers. Specifically, her suck, swallow breathe coordination. And while her brain bleed outcome and eyes won’t determine when she comes home, those are two good topics to pray about as well.

Abby’s story continues to reach a lot of people and touch many hearts which in turn touches ours. We’re over the 2 month mark in the hospital now and Kelly has been there all day, everyday until we leave around 11PM or so. She is amazing. Abby knows her mommy so well and it warms my heart when Kelly comes back in the room and starts to talk because Abby will more than likely open her eyes and look for her. That is, unless she’s totally out and snoozing. Stamina my friends. It’s called stamina, and Kelly has tons of it. She is my amazing wife and I love her more than I can possibly explain.

Stay tuned for some awesome Abby Pics with her 4th of July outfit that a friend of mine from work bought for her. She’s way too small for it, but it’s still super cute. We even paraded her around the NICU to show her off. Needless to say, she was a hit.

Happy 4th Abby

Happy 4th of July weekend friends. Kelly and I are here at Camp Abby in the NICU where not too much is going on, which is a good thing. She is still in her big girl crib, she is maintaining her temperature well and she is still accepting her feedings well through the feeding tube down her nose. She is having some reflux though after her feedings. It’s not that big of a deal for a full size baby to spit up most of the time, but for Abby, when she spits up, it’s a big deal simply because she needs EVERY CALORIE we give her. Yesterday she did well with this and didn’t spit up once. She is still around 3 and a half lbs, and maybe even a little bit more.

I haven’t spoken too much about her shunt lately and somebody asked me how that was going. It’s working very well and there haven’t been any problems with it. The shunts job as a reminder is to drain the CSF, or Cerebral Spinal Fluid that gets produced in Abby’s brain to her abdomen. Abby’s brain bleed at birth has blocked the passageways that allow the CSF to leave the brain area to the spine, which is why the shunt is there. Without it, her head would blow up like a balloon with all the CSF. The shunt is still very visible in the back of her head but as she grows older and grows some hair it won’t be noticeable. I still pray that someday, somehow, someway, Abby won’t need the shunt at all anymore. That would be quite a miracle!

Abby is still working on the suck, swallow, breathe coordination this weekend. She is doing a bit better than previous attempts but there is still a lot of room to grow in this regard. I am happy though that there are moments when she does coordinate it all, so I am hopeful that she will get it down soon.

We just called in this morning to check on Abby to find that she has been moved to another room in the NICU. We were super bummed! Not cool man. We have become friends with the parents of Luke who is right next to Abby, we know all the nurses there and quite frankly Abby is the life of the party these days. Now we’re back in the quiet part of the NICU. The good news is that she is back there because she’s doing well and they need Abby’s old spot for a more critical baby. But still, we’ve become very close to everyone and very used to that room so we’re sad to leave. Yeah yeah, look at the bright side…she’s healthy enough to even leave that room so we should be happy and blah blah blah. I know, I got it! And I'm sure we'll get used to it.

So to recap:
Temperature = good
Eating = good
Growing = good
Shunt Function = good
Breast Feeding = okay, could still be better.
Cute scale = OFF THE STINKIN’ CHARTS!!!!!! CHECK HER OUT.
We love you guys.

Have a SAFE AND FUN 4th of July! We’ll gladly let this one pass us by as we cuddle with our Abby and look forward to next year and getting out and about with all of you.