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!)