HAPPY HALLOWEEN!

HAPPY 6 MONTH BIRTHDAY ABBY!!!

Written Sunday night October 29th, 2006




Get this; on Friday, Kelly had her usual appointment with Abby’s developmental therapist who could not believe how well Abby was doing. She was holding her head up well, her left arm was looking better and she was kicking like crazy. She said that she’s not going to limit what we encourage Abby to do. In other words, there are no significant signs pointing to Abby having any serious disabilities at the moment so we’re going to challenge her on all fronts regarding her motor skills. How great is that?!
Remember though, she’s not out of the woods on this one and some developmental hurdles can manifest themselves later, but for now lil Abby is doing great and we’ll take it… thank you very much!
This morning I gave Abby a bath and it was so much fun. I usually assist Kelly but this time I was in the drivers seat and I had a blast. Abby loves bath time. She likes the warm water and she loves it when we lay a warm wet washcloth over her like a blanket. Her favorite, as I am sure it is for many little ones, is the water being poured over her head and going down her back.
After bath time it was time for cute outfit number 1 billion and 3, however this time, we spiced it with something new….shoes! Take a look at the picture of me and Abby for a shot of her in her first pair of kicks. Pink…of course. Mommy wouldn’t have it any other way.

As far as her eating is going, I have to report that it’s not doing so hot. She’s growing a lot faster now, which is good, but Abby’s therapists have said that this growth spurt could be why she’s taken a step backward in her eating. Her muscles, including the ones she uses to suck, swallow and breathe are growing very quickly and she has to learn how to use them again. But you know what? We’re not so caught up on this anymore. I used to really hang on to her feeding and hope each day that she would turn the corner here. Now though, it doesn’t bother me because she’s a happy baby. As long as she’s smiling and playing and continuing to grow and get strong, I’m okay with the eating challenges. I think it really bothered me before because Abby was in so much pain and it was really hard to watch her struggle over eating too. If you remember, her shunt got clogged again and she needed surgery, her constipation was really bad and irritating her, and her G Tube was getting infecting and causing a lot of pain. Abby was always crying and fussy. It was awful and for some reason I figured her learning how to eat would fix everything. Anyway, enough of that. Like I just said, Abby is a happy baby these days. It seems she really did turn a corner (knock on wood.)

Stay tuned for Halloween pictures of Abby on the 31st!

Enjoy the new photos of our little nugget.

WE LOVE YOU ALL!

SERIOUSLY!!!!!

So today was a rough one at work. But then I got home and look what I found?




Heaven on Earth!

The Latest On Abby

Written Monday Night, October 23rd, 2006

Well, the MRI we had last week went well. The area that controls the left side of Abby’s body was fine. She still favors her right side, but Abby’s developmental therapist said to hold off on doing anything for right now. She is after all, still moving her left arm, just not nearly as much. Personally, I’m a bit concerned about the whole thing, but I am confident with some therapy to encourage Abby to use her left arm, she will overcome any problems that may arise in the future.
Abby was eating very well at the beginning of last week and is getting very close to taking a full bottle. A full bottle is still 75 cc’s and Abby got up to around 70 cc's a few times last week. It usually takes Abby about an hour to finish. Some days she’s really calm and has her suck, swallow breathe coordination under control and other days it’s a real battle. She cries and grunts and squirms and throws her arms about. When that happens we just throw in the towel and finishing feeding her through her g tube. In fact the past few days this is exactly what was happening. We’re not sure why this happens either. It could be a number of reasons. This morning though she took 55 cc’s for me and 60 cc’s for Kelly this afternoon. That’s still not a full 75 cc’s I realize, but it’s a big improvement from the past few days. A couple steps forward then a couple steps backward I guess.
Abby’s developmental therapist said that she is very happy about how Abby is moving overall. She likes how her legs are kicking and she likes how strong her neck is getting. She bobbles her head all around when we hold her now as she tries to hold it up. It’s adorable. And she’s really starting to smile and coo. I can tell that she wants to laugh at the funny noises and faces I make at her, but for now she just flashes the cutest smile I’ve ever seen. I’m sure the giggles will come later.

And that’s about it for now folks. Oh….Abby is 8 lbs 8 oz! That’s a long way from 1 lb 10 oz huh? She’ll be 6 months old on the 29th. Crazy huh?

Please say some prayers for Abby’s eating. That’s the biggest topic of concern at the moment. Remember, the sooner she can eat 100% on her own, the sooner we can get that that G Tube out of her.

Have a good week everybody. We love you. Enjoy the latest pics!

Site back up and running normally

Just a note to let everyone know that the site is back in full working order after a minor technical fix was required this past week.

Written Sunday Night October 15th, 2006

Dare I apologize for taking so long again? Do I even attempt to say, "I’ll be more frequent with my updates?" Nah. We all know that’s a bunch of hot air anyway! I’m thinking once a week or so is about the norm these days. The way I see it, if I write every other day it will just be boring. Think of it as a good thing. Abby is doing better so there isn’t as much to report. Trust me though, if something happens that requires an update and an emergency request for prayers, I’ll get on it. I say this only because some have mentioned that they’ve gotten concerned after a few days of no updates for fear that my silence is due to something bad with Abby. I promise this will never be the case. I always have my blackberry with me and if need be, I’ll do an update that way. So there you have it. My official declaration that we’re scaling back to a once a week update.

This week Abby has continued to turn that corner. She is still eating well for the most part. She’s taking in anywhere from 50 to 60 cc’s each time. Her full feed is still 70 cc’s and she hasn’t gotten to that yet, but like I said last time, the quality of her suck, swallow, breathe coordination is so much better these days. Abby is also very content when she’s awake. Just this morning Abby and I woke up together and she smiled and played for about 2 hours. I was in heaven. It’s such a blessing and an answer to our prayers to watch Abby enjoy herself and not be in any pain.

Our main concern right now is the left side of Abby’s body. Ever since her surgery we have noticed that her left arm has been more quiet than normal. While her right arm springs about, her left arm will sit there motionless. It’s not that she can’t move it though. For example if I hold it up and move it around and then let go she’ll continue to move it herself. Or if I hold her in the crook of my left arm so her right arm is pressed against my body and the only usable arm is her left, she’ll use it then too. But if she’s just lying down and kicking and moving like babies do, her left arm just sits there. I watched all day today and it has actually been a bit better but it was enough of a concern last week for Kelly to make an unannounced visit to Abby’s neurosurgeons office. By the way, catching our neurosurgeon without an appointment can be really difficult depending on his surgery schedule and what not. However Kelly got right in to see him, which was very lucky. He didn’t seem to be too freaked out, but he didn’t want to take any chances so he ordered an MRI. We’re not sure when that will be but we’re thinking sometime this week.

Last weekend I was talking to a friend of mine who said, " I call Abby Abbycadabra, because she’s magic." I thought that was great and I have to say, I agree. She IS magic. She is constantly amazing us. I’m sure she will continue to do so as the she answers the big questions in the future. How well will she walk and talk etc…? I’m looking forward to all of it.
Thank you all for checking in. There are quite a few of you from out of state, most of whom Kelly and I haven’t even met. I am truly honored and blessed to have you all praying and caring for my baby girls well being.

Have a fantastic week friends.

PS - Kelly has a busy week this week so please keep her in your prayers as well as Abby. A pediatrician appointment, a neuro appointment, 3 feeding appointments and a physical therapy appointment. She gets weighed this week too! She's in the 8 lb range and hopefully pushing 9 lbs. Stay tuned

Written October 9th, 2006
Kelly and I have often asked when our Abby will catch a break. If it’s not one thing it’s another. So far Abby has been mostly uncomfortable with some short moments of calm and comfort. When will it be the other way around? When will Abby be comfortable most of the time with the occasional moments of fussiness?
Well, we’re hoping that time has come! Abby is doing a lot better these days. She seems to be getting used to her G Tube and she is eating a lot better as well. A full bottle is 70 cc’s. She averages about 40 cc’s every time we feed her from the bottle and she occasionally takes around 50 to 55 cc’s. We’re still not at a "full bottle" yet, but this is a lot better than a week ago. Last week she wouldn’t take the bottle at all.
People have asked for a picture of the G Tube so here it is. What she has now is actually called a Mickey Button. The tube you see actually comes off of that the other part when we’re not using it. It’s nice because Abby doesn’t have a tube hanging off of her all the time. An issue of concern right now is Abby’s ability to go poop. We’ve tried to help her out in this area with milk of magnesia as well as with some suppositories but to no avail. It’s important her little system learns how to move things along on its own. We don’t want Abby to get too dependent on our assistance.

Abby is smiling a little bit more and more each day. It’s a lot of fun to watch. Okay, sometimes it’s because she’s tired or she’s got some gas, but that’s alright. She is still as cute as can be. She is even cooing a bit. Sometimes she surprises herself with the sounds she makes. We’re hoping that this is a true corner that Abby is turning and not just a good few days. This week is filled with many more doctors appointments for Abby and mommy. Keep the prayers coming that this is indeed a new chapter for Abby and that she will begin to take at least one "full bottle" each day. That’s the goal for now. One full bottle a day.

Have a wonderful day everybody.
PS – Sorry to be such a slacker….again.

Hey everybody,

I don’t have much time but I know everyone is concerned about lil’ Abby Girl so here we go.

Abby is doing much better these past 2 days. She responded very well to some treatment with her feeding therapist and took 40 cc’s. A full bottle is 65 cc’s these days but that’s still better than where she was at last week. She’s not nearly as fussy either. She’s still fussy and has her issues, but its nothing compared to last week.

So rest easy for the moment and keep checking in! I hope to send the email out that she’s back to taking at least one full bottle every day soon.

Prayers for her ability to eat and comfort.

We love you all.

Happy October Friends,

Well, I wish I had some great news but unfortunately Abby is sick. What’s worse is that she got it from me. All our precautions and hand washing didn’t seem to help. It hasn’t gotten much worse but it hasn’t gotten any better either. She is very stuffed up and she has a bit of cough. This, on top of her surgery last week has turned Abby into a very unhappy little baby. Last night was a rough one for sure. I know all you other parents out there can attest that there aren’t too many things worse than your baby screaming hysterically and you have absolutely no clue as to why. The helplessness we felt last night was horrible. Is her G Tube irritated again? Is the shunt working properly? Is she constipated again? Is it because she’s sick? Can we give her anything? On top of Abby’s extreme fussiness and crying lately, her feeding has taken a huge step backward. After her first suck from the bottle Abby will freak out and start screaming uncontrollably and it will take a long time to calm her down. Again, we have no idea why. Kelly has a feeding therapy appointment with Abby today and we’re hoping we’ll get some feedback as to what could be happening.

Thanks to you all for checking in and please keep our little Abby in your prayers. She’s been through so much and it’s her turn to feel better.

We love you all.

 

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!

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.