Happy New Year Everybody!

Alright, so daddy’s resolution is to post more pictures more often. How’s that one? Abby is really doing some fun things lately so it shouldn’t be too hard to capture some good moments.
Abby is now 11 lbs and she is doing very well eating from the spoon. She has loved everything we’ve given her thus far which includes bananas, pears, peaches, prunes (yummy), and some others that I’m forgetting at the moment. She is actually doing a bit better from the bottle now too because the muscles she is using to eat from the spoon are getting stronger and are more able to control the thin consistency of the milk. Oh yeah! Today is the last of mommy’s milk. Can you believe that? Remember the freezer? Well it’s empty. Unbelievable. Now we’ll be feeding her formula along with her baby food.
As you know, Abby’s left arm and more specifically her left hand has had some problems. She doesn’t like to use it very much and it spends a lot of time in the closed fist position. It’s gotten better though and this past week she also got fitted for a little preemie size hand brace that will encourage her to keep her hand open.
That’s pretty much it for now! Enjoy ALL the pictures. You deserve them since you’ve been so patient.
Stay tuned as I plan to update on Sunday nights.

Have a great week.


Ryan and Kelly and Abby

HAPPY HOLIDAYS ABBY TOWN!

Written Friday Night, December 22nd, 2006

Hi Everybody,

Thanks to all of you for everything this year. Stay tuned as we're looking forward to a great 2007. Abby is sure to make more wonderful strides and of course there's the new baby thing! Since I had work off today I was able to go with Kelly and Abby to Abby's therapy appointments. I am happy to report that she is doing fantastic with her baby food. She loves to eat from the spoon. She still hates the milk from the bottle though but honestly, who cares?! I'm just excited that she is taking so well to baby food. Abby is also doing very well with her physical therapy and is progressing well.

All in all, it's a good report.

Merry Christmas everyone.

Be Good!

Ryan, Kelly and Abby

A Quick Update on Mommy

The Doctors Appointment went well on Thursday. Kelly got to see the little flutter on the screen which is the heart beat. Kelly's doctor said that Abby's little brother or sister is about the size of a grain of rice at this point. That's crazy! Something that small can make Kelly feel THAT horrible? Wow.
Anyway, I'll get some more pics up soon.

Oh yeah, the due date for Emma, Maddy and Abby was August 3rd. Take a big guess what our new baby's due date is. Yep! August 3rd.

Try that one on for size.

Written Wednesday Night, December 13th, 2006

Wooops!

Sorry to be so late on this one friends. I was, uh….well…hmmm… Okay. No good excuses come to mind at the moment. Not to worry though, as Abby is still doing pretty well. Momma now feeds Abby a mixture of milk, rice cereal and baby food twice a day and she seems to like it. Peaches, bananas and pears are the flavors. Today she did very well with the peaches flavor. She is really starting to learn how to open her mouth and seems to handle this more solid consistency a bit better than she has been able to handle her milk. In fact, her bottle feeding has taken a giant step backward. She doesn’t take anything from the bottle anymore. Sometimes not even one sip. This is called oral aversion, which is when she doesn’t want anything in her mouth. She obviously doesn’t have it too bad because she’ll eat the baby food mixture but she certainly has it when it comes to the bottle. This means that momma has to pour the milk into a syringe and push the milk through her G Tube into her stomach over about an hour and a half period. Not fun for momma considering she eats every 4 hours.
Other than that though she’s still our happy Abby! She wakes up with a huge grin on her face and is in good spirits most of the time.
As for momma, the pregnancy is kicking in. She gets hit with some nausea waves every day but thank goodness for Zofran. It works well for Kelly and definitely takes the edge off. Tomorrow is her first doctor’s visit complete with an ultrasound!

Thanks for all the love and prayers Abby Fans. It’s been a long road.

Take a look at this picture, taken just a few weeks after Abby was born. She was so tiny I could fit my wedding ring around her hand.



Now look. She can barely fit more than a few fingers through it!

WE HAVE GREAT NEWS!

Written Monday Night, December 4th, 2006

This past week has been another good one for Abby. She is doing well and continues to steal our hearts on a daily basis. She doesn't like to take naps and is very hyper. Hmmmm…that’s a shocker. We can thank momma for that one. She is starting to roll over but has trouble getting her arm out from under body at the end of the roll, so she resorts to yelling and calling out for help. She is a determined little one though and will figure it out soon. She also started to laugh last week. I haven’t heard it yet but Kelly said it was one of the most heart warming sounds she’s ever heard.
Abby did throw up quite a bit this weekend. We think it's because we have increased her feedings a bit too much. Today Kelly scaled back the amount of milk from 4 ounces to around 3 to 3 and a half and that helped a lot.

On Sunday we got special permission to take Abby to church to give her a baby blessing. It was great to sit there in the congregation for the first time with my new family. Abby looked beautiful in her white dress and mommy was looking gorgeous as well. After the blessing Kelly got up to say a few words and she let the congregation know something that I figured we were keeping a secret for a while longer. Clearly I was wrong. It seems Kelly’s excitement has gotten the best of her. So for those of you that don’t know already, Kelly and I are pregnant! Yep. That’s right team. We’re pregnant! All on our own too with no infertility treatements. Let me tell you, this way is MUCH cheaper! How crazy is that? We’re very much at the beginning stages of it all and since Kelly had a pre term labor her first time around she is susceptible to pre term labor again. So… looks like we can continue the prayers for at least another nine months!

Have a great week everyone.


Abby's Management Team

Written Monday Night, November 27th 2006

I hope everyone had a good Thanksgiving. We sure did as we obviously have a lot to be thankful for. I am thankful first and foremost for Kelly. She is hands down the strongest, the most loving, compassionate, caring and beautiful person I know. Each day I thank God for her in my life. We are thankful for Abby, Emma and Maddy. They have taught us so much in this short time and we are thankful and proud that we are their parents. We are thankful for God and our faith that we will see Emma and Maddy again. And of course, we're thankful for our family and friends. You all have been so incredible during this and we appreciate everything.

Okay then...enough of the mushy stuff. On to the Abby Girl.

Abby has been doing well lately. Her feeding therapist has decided to let mommy feedAbby some rice cereal with a spoon and she did fantastic! Since the rice cereal is thicker than the milk, Abby has an easier time controlling it in her mouth. That doesn’t mean she doesn’t get some around her face though, as she isn't very used to the spoon and the whole opening her mouth thing. Take a look at these pics!





Abby is also doing well with her physical therapy. Below are some pics of Abby at her physical therapy appointment. Abby goes through a series of exercises with her therapist holding her on an exercise ball. The goal is to strengthen her muscles and coordination as she is forced into different positions. Another good exercise is tummy time, which is what she is doing in the other picture.







And finally, here is a shot of our little angel wrapped in her “Daddy’s little Girl” hooded towel from her bath.



We are very excited for Abby’s new feeding adventure. Our hope is that the thicker consistency with the rice cereal will really help Abby take some good steps forward with her feeding. Remember, the sooner she eats on her own, the sooner we can take her G Tube out. We don’t anticipate this to be anytime soon, but it’s still nice to see some steps in the right direction. By the way, her G tube and her shunt are still working well and don’t seem to cause Abby too much irritation at the moment.

Let’s pray that Abby’s feeding therapy continues to go well with the rice cereal, that her physical therapy continues to go well and that her g tube and shunt continue to function properly.

That is all for now friends. Thanks again for checking in. To all you silent ones, feel free to hop on and post some kind words as well. We truly enjoy all the comments.

The Gaya’s

A Good Week

Hello Abby Town,

I’m happy to report that we had a fairly uneventful week. Kelly met with the neurosurgeon on Wednesday who re confirmed that the shunt appeared to be working properly. Why it wasn’t or rather why it seemed not to be working before is anybody’s guess.
Abby had a pediatrician appointment this past week and she weighed in at 9 lbs 11 oz. Her feeding therapist said that while she may have taken a step back regarding the volume of milk she can drink, she is still progressing nicely overall regarding the quality of her sucking and swallowing. Abby’s developmental therapist is still very positive about Abby’s movements. So far everything looks great. The only bit of concern is her left arm but even that is looking a bit better.
We’re heading out to visit with Kelly’s Grandparents this holiday weekend in La Quinta. We can’t wait! I hope you all have a wonderful and safe Thanksgiving Weekend.

Enjoy the Pics. Take a look at what Abby found in the second one….her thumb!

Love,

Ryan, Kelly and Abby Lynn

A Busy Weekend

Well, it’s official. Abby is on lock down during RSV season, which stands for Respiratory Syncytial Virus. RSV season lasts until the end of March. Because Abby was on a respiratory ventilator she now has chronic lung disease and is very susceptible to RSV. If she did get it, it could turn into bronchitis and / or pneumonia and possibly kill her. Needless to say, we’re going to be extremely careful these next few months.



Thursday was Abby’s first RSV immunization shot. She’ll get one every month through March. She didn’t like it at all and spent most of Thursday sleeping. We thought she would be back to her normal happy self on Friday, but she was still very lethargic and sleepy. This is unusual for Abby. She usually takes 20 to 30 minute naps during the day but she never sleeps for an hour or two like she was on Friday. Abby was very fussy as well which is also unlike her. Kelly thought she might be getting sick so she checked her temperature but it was normal. Then Kelly checked Abby’s soft spot. It wasn’t soft at all. This was bad news because when Abby’s soft spot is full it might mean her shunt is not working. Since fussiness and sleepiness are also signs that the shunt might not be working, Kelly decided to call the hospital who transferred her to the on call neurosurgeon. She told us to bring Abby into the ER immediately, that it sounded like Abby’s shunt was indeed clogged and she would need to operate on her. This was terrible news! This meant brain surgery number 5 and her fourth shunt revision. We were told that while shunts in little ones like Abby do get clogged, Abby’s shunt seemed to get clogged more frequently than others. Great. Just what we need.



Anyway, Kelly brought Abby in and the neurosurgeon ran two tests to confirm the shunt was clogged. First, she stuck a needle in the shunt and then pulled back on it with a tiny syringe but no fluid came out. 99.9% of the time this means the shunt is clogged. At that point the doctor told us that it looked like Abby would be going into emergency surgery. She had the nurses start an IV line on Abby and call down to the OR to get everything ready. The second test was a CT scan to check the ventricles. If the shunt was clogged, the ventricles, which are the areas where the fluid accumulates would be more full than normal. But guess what? The ventricles WEREN’T overflowing with fluid as we had anticipated. Huh? So the shunt WAS working? Then why was the shunt tube empty? Why was Abby’s soft spot feeling full? Why was Abby so lethargic? We didn’t get any definitive answers. The neurosurgeon wasn’t convinced that Abby’s symptoms weren’t caused by something other than the shunt but she wasn’t convinced that they were. Either way, Abby WASN’T going into surgery! Yeah! But we couldn’t leave just yet. The neurosurgeon wanted to observe Abby for a while to make sure everything was alright. We spent the night at the hospital Friday night and stayed there all day on Saturday. Abby tolerated her feedings all night and all day and her soft spot started feeling a bit more soft as well. At around 4:00PM on Saturday we were discharged.

And there you have it. Ever since we got her home on Saturday Abby has been doing pretty good. She is still sleeping more than usual but when she is awake she is back to the happy little Abby we’re used to. So the doctor told us to stay on high alert and call immediately with any changes. We see the neurosurgeon early this week for a follow up visit and will keep you posted. But for now, we’re happy to be home.

Please pray that Abby’s shunt will continue to work well and that she will stay strong.

We love you all.

WRITTEN MONDAY NIGHT NOV 6TH 2006

Okay, we’re back. My apologies for taking so long again, but this time I have a good excuse. Seriously! Kelly and I had the opportunity to head out to La Quinta with Abby to attend the wedding of some our close friends this past weekend Abby didn’t attend of course, but luckily for us La Quinta is also where Abby’s Great Grandma and Great Grandpa live who were more than happy to watch her for the evening. I’m happy to report that Abby did very well with them. To our newly married friends Rolf and Dana, congratulations you two. Thanks for giving us an excuse to get away for a bit. Even though we packed enough stuff to be gone for years, it was worth it. I’m sure as parents we’ll get better at the packing thing. Please say we will. This past weekend was ridiculous. You would have thought we were moving across the country. No joke.

Anywho, on to the update…

Abby had another eye appointment with her new Pediatric Optomologist last week. He concluded that her eyes looked good for now. He does want to see her again in 6 months though since she had such extensive laser surgery to stop the ROP (Retinopathy of Prematurity) from spreading. Feel free to google ROP for more details.
Abby’s physical therapist has recommended that Abby has another day of therapy called occupational therapy each week, which involves the development of her fine motor skills such as reaching, holding onto objects etc. Her left arm is still pretty limp and doesn’t do much and this therapy will help with that. By the way, I don’t think I’ve mentioned just how much we LOVE Abby’s therapists. There are 3 total. Her feeding therapist and occupational therapist are twin sisters. We met them while still in the NICU and they’ve been part of the journey ever since. Abby’s physical therapist came highly recommended by those two while Abby was in the NICU as well. Of course Kelly and Abby fell in love with all of them instantly. Thank you ladies for all that you do for our little nugget, or better known with you guys as “ our burnin’ hunk of love.”
Abby is still having trouble taking a bottle. A full feed is now up to 90 cc’s. Today she took 70 cc’s which is great, but did horrible every other time. Oh well. Our goal right now is to simply give Abby the opportunity to try and when she gets frustrated or tired, we’re done. The last thing we want to do is force her to eat because she’ll get oral aversion, which means she won’t allow anything in her mouth. That is a much more difficult problem to tackle according to Abby’s feeding therapist, which is why we’re so careful not to push anything. So when Abby says she’s done, we listen. Already bossin’ us around! Nice huh? And like I mentioned in a previous entry, Abby is happy these days so this whole eating thing doesn’t bother us quite as much as it did, simply because it clearly isn’t bothering her. Keep Abby in your prayers for success in these therapy sessions with her feeding and her motor skills.
We haven’t done much in the way of pics this past week but I do think some pretty darn cute ones will be coming up shortly.

Have a fantastic week everyone.

Ryan and Kelly.

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.