Happy 2 months Abby!

HAPPY BIRTHDAY ABBY!!! SHE’S 2 MONTHS OLD AS OF THURSDAY, THE 29TH! AND WHAT A BIRTHDAY IT WAS….!!!! A LOT HAS HAPPENED.

So get this. When Kelly came into the NICU yesterday morning, Abby wasn’t there! Her isolette was gone and had been replaced with a big girl crib. The crib is great news, but where was Abby? Another nurse decided to take her out and give her a little tour of the NICU! It’s great to know she is doing that well that she can actually get carried around for a while. Of course we love the fact that she was showing our Abby offf too. And the crib is great because now we can simply lean over and kiss her whenever we want.

To go along with her big girl crib, Abby has been upgraded to big girl diapers too. Well... she now wears the normal preemie diapers that you can buy in the store instead of the super small ones. She is swimming in them and we have to fold them down a couple of times.

And…she’s off the nasal cannula! She is breathing totally on her own and has been for the past day. Take a look at the pictures! A lot has happened to our little Abby recently and while we’re excited we’re very nervous. We want to be sure she can maintain her breathing on her own and we don’t want her to tire out.

Something she’s not doing so well on is her suck, swallow and breathe coordination when we try to breast feed and bottle feed her. The developmental therapist isn’t too nervous, but would like to see some improvement soon. We’re anxious for her to learn how take a bottle because this is something she needs to know how to do to come home.

Another big concern is Abby’s eyes. The eye doctor came by Wednesday and said her eyes were getting worse. She has ROP (Retinopathy of Prematurity). Google that if you want. Basically, she is growing abnormal blood vessels which are thought to be a result of the increased level of oxygen Abby got at the early stages of her life. She is a zone 2 and stage 2. That will make more sense if you read up on ROP. If you don’t, just know that these aren’t the worst conditions of ROP but it’s enough for the doctor to want to start seeing Abby every week. The ROP can stabilize and Abby’s vision could be relatively normal. If it doesn’t the docs can do laser surgery to kill those abnormal blood vessels. This will ruin her side vision somewhat, but the hope is that it stops the ROP before it affects the important part of version, which is the central line of sight vision. The scary part about this surgery is that it only has a 50/50 chance of working. If this doesn’t work, the ROP can continue to get worse. Since Abby is off the oxygen now and breathing on her own, we’re hoping that helps. It's basically a wait and see situation at this point.

Man, if it’s not one thing it’s another. The nurses were right….this is definitely a roller coaster. But let’s focus on the positive too. She’s in a crib, her tummy is accepting her feedings through the feeding tube well, she’s growing, and she’s breathing on her own! The suck swallow breathe coordination and obviously her eyes are what we need to pray for. We’re very worried about her eyes right now but have faith that Heavenly Father will hear all your prayers.
We appreciate each and every one.

Enjoy the pictures.

Abby news

Abby has been doing pretty well this week overall.
She is still taking mommy's milk through the tube and digesting it all. She is up to 30 cc's every 3 hours. She is about 3 lbs, 6 oz now! I got to kangaroo hold her tonight which of course was fantastic. I held her after she got her immunization shots. We were told she would be in a lot of pain and discomfort afterward but she did pretty well in the hour that followed. We hope she stays strong the night. She'll get her 2nd set of shots tomorrow and that will be it.

Abby is bottle feeding once a day with the developmental therapist. She took 5 cc's again today. That's not very much and the therapist said she would like to see Abby a bit further along given how old she is, but that's okay. She is starting to figure it out and we kind of expected this kind of stuff regarding neurological issues. It's just going to take her some time to coordinate the "suck, swallow, breathe" situation.

One thing is for sure though. She's cute. Check out her new outfit! Say some prayers for Abby's ability to take a bottle better along with everything else I always mention.

We love you all. Abby continues to reach people from all around. Both old friends and strangers alike are tuning in. That's fantastic. We appreciate your support and please chime in and say hello!

Thanks again. We love you.
Ryan and Kelly

More pics...

Weekend Abby News

Sunday June 25, 2006
I guess my previous email didn’t get through everybody. Sorry about the lag time on this update. The weekend went well. Abby is doing well. The same thing I said for Saturday. Feeds are good, spells are few and far between and the settings on the nasal cannula are low.
Read below for more details…
_________________________________

Saturday June 24, 2006
Dare I say it? There isn’t much to report! Abby is doing very well these days. She is getting harder and harder to leave that’s for sure. And it’s becoming more of a reality that we’ll actually be able to take her home. Those of you who have been through the NICU experience for a long period of time know what I’m talking about here.

She is still getting her milk through that tube you see going in her nose and she is still on schedule to have the Broviac taken out on Monday, which is the central IV line that the docs were using to give her a supplemental nutrition concoction as well as any meds that she would need. Now that she is getting more and more healthy, they don’t need it anymore! Plus, the fewer foreign things in her body… the better. Oh! There is something good to report. The developmental therapist gave Abby a bottle yesterday and she did great! She took 5 cc’s on her own, she swallowed fine and she remembered to breathe during the whole thing too. In the NICU, this is known as the "Suck, Swallow, Breathe" combo. It’s very difficult for these little preemie’s to coordinate all this and the fact that Abby did so well is huge. It’s especially good news because of her brain bleeds. Remember, little Abby has a Grade 4 Brain Hemorrhage in the right side of her brain and a grade 3 in her left. There is a 90% chance she will have some serious neurological problems down the road. So when we see Abby do well on things like taking the bottle, we get extra excited! She hasn’t woken up so much in the past few nights but when we called in this morning, Jennie, her nurse said she was wide awake and looking all around. She also mentioned that her night nurse Karen said she had a great night with fewer spells than usual.

Abby is also being seen by a Chinese Medicine Doctor a few times a week. The doctor is giving her acupressure treatments and rubs her back and /or her feet and hands. The goal of all this according to Ruth, our Chinese Medicine Doctor, is to simply enhance her overall growth and healing process. It has a lot to do with brain stimulation and relaxation and with Abby’s Hydrocephalus (the fluid that gets clogged in her brain, which was caused by the brain hemorrhages) I am very excited about it all. My only concern was the cost. Call me crazy, but something was telling me that my insurance wasn’t going to cover Abby’s foot massages. Good news though… it’s free! Well, free to us. It’s all covered by a grant. So pile on the back rubs for Abby. Man… she’s spoiled already.

We thoroughly enjoy your comments on this blog site. Please keep them coming. And while there are no specific concerns for Abby regarding prayers, we ask you continue to pray. That her eyes mature in a healthy manner, that her shunt continues to work well without infection or clogging, and that if by some miracle, her Hydrocephalus will disappear and that passageway in her head may open up and drain the fluid on it’s own.

And there you have it folks. Some more pics for you to see.

The Doctor in one of them is Doctor Chamberlin… or Bishop Chamberlin as we call him. He was our Bishop in the Las Flores Ward and we are blessed to have him as a friend there. After what sounded like close to a 12 to 15 hour day, he still found time to run up to the NICU and check on little Abby. Thanks for stopping in after your long day Bishop!

Fresh New Look For Abby's Website

We thought it was time for a little makeover of little Abby's website, so, vioala! We hope all enjoy the new custom look for sweet little Abby's "virtual nursery".

Abby news

Ladies and Gentlemen!

In this corner, one of the tiniest little fighter to enter the NICU ring, is Abigail Lynn Gaya, weighing in at a whopping 3lbs 1oz!!!! Abby is doing very well these days. She is still eating well and growing and pooping. In fact, tonight they stopped giving her that supplemental nutirtion that she was getting. As long as she does well on just mommy’s milk through the weekend, they will take the broviac out of her chest on Monday! This is fantastic news. We are tired of this big tube going into her chest. I’m sure she is too.

She got blood yesterday, which really helped with her color. Mommy knew she would need one on Monday because she got a little pale and was acting a bit lethargic. We don’t want to give blood too often though because her body needs to learn how produce it on its own. To help with this, she is now getting iron each morning. She is producing some blood on her own, but she could do better. We’re told that this is common in the preemie world.

Another situation that we’ll have to keep an eye on is that she threw up three times today. We’re not too sure why and while our nurse Jessica didn’t seem too concerned she definitely wants to watch that. As you can all see from the pictures, we get to dress Abby now! This is another mini milestone because this means she is not an isolette that produces humidity. The humidity was for her skin which now is that soft, smooth baby skin. And as soon as she is able to maintain her own body temperature, she will be put into a crib. This is the part I can’t wait for. I’m tired of looking at her through the isolette. Anyway, Kelly is having a blast dressing her little girl. Even though she still swims in her clothes, Abby has a huge wardrobe already.

Last night, daddy changed her diaper when not more than 5 minutes later did she poop. Luckily mom was back from pumping her breast milk by then so daddy gave her the green light to change the poopie one. I figure there will be PLENTY of opportunities to change those in the future…why rush into it?

Abby is still the night owl. She was wide awake until around 12:45AM last night. Kelly and I pulled ourselves away around 11:30PM to go home.

Abby has been doing very well lately. There is no doubt that your prayers are being heard. Please continue my friends. I know I say it a lot, and there are only so many ways to say "please pray" but I do mean it. Keep them up. Some specifics this time around are that she is able to produce her own blood, that her throwing up isn’t anything to be concerned about, and that her brain and shunt continue to work in harmony together.

Have a great Friday and an even better weekend.
Kelly and I will be rockin’ out in the NICU with our little Abby Girl.

Lots of good Abby news

What’s crackin’ Abby Heads,

Abby has been doing well since Monday. She is up to 16 cc’s of milk every 3 hours, she is holding steady on the nasal cannula, and she is going #2 on her own these days which is huge. And speaking of huge, she had the monster poop of the century today. I wasn’t there to witness, but I was told it was by far her biggest one yet! But seriously, this is a good thing because I don’t want her to get dependent on the enema to go and the past few days she has proven that she can do without it. Let’s hope that continues. Abby, like her mommy is a night owl. She’s tired and sleepy all day, and then each night when we get back from our dinner break around 8PM, she is wide awake and looking all around! It’s great….well at least for now. If she remains a night owl through her teenage years, I think daddy is going to have some problems! She is also starting to breastfeed. Sometimes she does well and other she just grunts and tells mommy she ain’t interested. The developmental therapist, Karen, comes by each day and works with Abby with her legs and her shoulders and also tries to teach her to take a bottle. The funny part is that Karen comes by around 11AM each day and of course Abby the night owl, is out like a light and not very much in the mood for any kind of exercise. Kelly said that Karen tries to wake her up but it never works.

Some more good news is that Abby isn’t going to need that new valve in her shunt until AFTER she comes home, which means no more surgeries in the near future! And while that will stink when the time comes, for now we get to just look forward to her growing and getting bigger. The valve will basically control how fast the fluid drains from Abby’s head. Right now, there’s a tiny valve in there but it’s not doing as well as this next one will. And if we keep Abby too upright for too long we can literally see her head get smaller. The doc said this isn’t that important right now, but over time we will definitely want to get this under control and that is what the new valve will do.

And without further adieu, here are some of the latest shots of our little smile maker.
Love to all,
Us

Abby news

Happy Monday Friends,
My soul has been touched deeply this weekend. The service for Emma and Madelyne on Saturday was beautiful, spiritual, and of course, extremely emotional. The talks, the prayers, the music and the love that was all around was amazing. It is so nice and so comforting to see how much our girls have touched so many lives in this short time. I thank each of you that attended and I appreciate your support for my family. There is no way....NO WAY.... we could have gone through this without you guys.

Now on to our little Abby. She is growing and eating and doing well. She is on a very low setting on the nasal cannula this morning. In fact, last night, she even had it taken off! That’s right! No breathing assistance of any kind whatsoever. Nothing. Nada. Zip. The nurses wanted to see how she would do and she did pretty well. She was doing great without the cannula until around 10:30PM at which time she started spelling quite a bit. Nothing too drastic and some were self resolved, meaning she would all of a sudden remember to breathe on her own. So her nurse Jeana put the prongs of the cannula back in her nose and that light, little puff of air is all she needed. Jeana seems to think that she’ll do better today since there is typically a lot more going on in the room during the day which will keep her stimulated and remind her to breathe on her own. Her feedings are over 12 cc’s today and she is gaining around 20 to 40 grams every day. She weighs 1,310 grams which I guess is around 2 lbs, 14 oz! Not too shabby eh? Almost 3 lbs! So far it looks like good weight gain and not just water retention. She is getting these chubby little cheeks too which are ridiculously cute. We were able to get a few pictures while she was off the cannula and hopefully one of those will have a good shot of those cheeks. I’ll send it out later. The broviac (the PICC line or IV that goes in through her chest) is still in. How soon the neurosurgeon wants to put in that new valve in Abby’s shunt will determine whether or not the broviac stays in or comes out. If he doesn’t want to do this for a while, it will get taken out. I’d like to take it out…less "stuff" in Abby. The other factor regarding taking the broviac out is whether or not Abby is on "full feeds" which means that she is getting all the nutrients she needs from mommys milk and doesn’t need the supplemental nutrition we’re giving her through the broviac. She’s not up to full feeds yet, but she’s getting there. The shunt is still working well. The nurses measure her head circumference every shift and it has increased a bit but the soft spot is still soft and Abby is still doing well and acting healthy so they’re not worried.

Thanks again to EVERYONE for EVERYTHING.

We love you, but then, you already knew that.

Ryan and Kelly

HAPPY FATHER'S DAY RYAN!!!

Any man can be a father. It takes someone special to be a dad.

On behalf of all your family and friends, Happy Dad's Day, Ryan!

Abby update

Abby is doing well everybody. She had a GREAT BIG #2 and she is tolerating her feedings very welll. She is up to 7 CC's of milk every three hours. Her spells are few and far between. Mommy has been able to hold her a lot! At least several times a day. And daddy gets to hold her as well. She is a lot easier to handle these days and so we are more comfortable gettting her in and out of the isolette ourselves. The shunt is still working well and her head looks okay. When we left tonight Jeana, Abby's nurse, had Abby on her tummy and she looked so comfortable! She loves being on her tummy.

Please continue to pray that the shunt works well. I'm very concerned about this little gizmo getting clogged or something, so let's keep that one in the standard rotation if we could. And since tomorrow is a big day with Emma and Maddy's funeral service, please pray that little Abby has a steady day so mommy and daddy don't worry too much about her while they say "see you girls later" to her sisters.

Here are some pics of the little angel!
K n R

More details from Ryan

Splish Splash Abby had her first bath!

Well, kind of. We took her out her isolette AKA her condo, and put her on a little plastic platform under some heat lamps so she didn’t get cold. Then Kelly took some wash cloths, got them wet, and washed her down. She did great! She didn’t cry at all. I think she actually liked not having all those sticky things that monitor her on her body for a while. After the bath we got her dressed in a cute outfit. She is so cute with her little clothes on. By this time it was 11:30PM and she was WIDE AWAKE. It’s so hard to leave her when she’s looking all around.

She got an eye exam today. The eye doctor said what he sees is common for premie’s which is that there are some minor problems with Abby’s eyes. Kelly couldn’t get much more out of him other than the fact that her eyes will be continuously monitored. I will try to get more info on this topic later today.

Abby is still having trouble with good ole #2, so she will most likely get an enema today. The concern is that she’ll get dependent on the enema but at this point they don’t care. The poor girl just needs to go!

The shunt seems to be working well still. This is very good news. She has become a whole new baby since that was put in.

I know I’ve promised pictures, and I’m a slacker, but I’ll get some to you soon. I’m sure this doesn’t help but...SHE IS SUPER CUTE!!!!!!!!!!!!!!!!!!!!!!!!!! Heh heh.

Prayers my friends. Prayers for her eyes, her head and continued strength.

Another good day for Abby

Abby continues to recover very well from her shunt surgery. She continues to not have spells and her feeding amount has increased to 2.6cc every 3 hours. Abby's isolet had a very high humidity level and because she is doing so well the nurses have turned the humidity off. She is now sporting some very cute premie clothes; which are still a bit baggy on her. Kelly got to hold Abby again today and mother and baby always enjoy that.

I'm sure many of you wonder when Abby will be able to go home. Kelly says that the major factor in her ability to go home is when she can feed on her own (breast or bottle). Right now she has a feeding tube in her nose that the nurse injects breastmilk into every three hours. So lets continue to pray that nice, big feedings are on the horizon.

Abby doing great

Hello everyone,

Abby is still doing great! Momma got to hold her for 4 hours or so yesterday and I got to hold her for 2 hours yesterday evening kangaroo style. Kelly held her again today and she did great. She hasn’t had any spells recently AT ALL!!!

She is back on her feeds too. Only 1.4 CC’s every three hours until the end of today and then they will increase her feeds fairly rapidly to get her back to where she was.

Although Abby is doing very well, there is some bad news. We found out that the pressure valve in her neck from the shunt is only good for a little while and she will need a “big girl” valve soon. Shoot! We thought we were done with surgeries. Granted, this one is a lot less intrusive but it still requires her to go back on the ventilator and get the tube stuck back down her throat. The doctor wants to wait until she is a bit bigger though so hopefully she will get stronger in the meantime.

But for now we’re happy because she’s doing quite well with the shunt and she is receiving very little assistance from the nasal cannula.

Be good and say some prayers for continued strength for Abby, especially through the weekend. It’s obvious that weekends are usually a bad part of the week but it’s very important that this Saturday, which is the memorial service for Emma and Maddy, Abby Girl stays strong.

We love you all.

Great news!!!

Two Words everybody…

Nasal Cannula!!!

Abby is awesome. That girl knows what she wants and doesn’t stop until she gets it. She did so well on the CPAP machine last night that they were able to take her off of it and put her on the nasal cannula. Hopefully we’ll be able to start her feedings today too.

That’s all for now…I will try and take some pics tonight of our bald little girl so you guys can see her. In the mean time, feel free to do the happy dance.

Ryan

Funeral services update

Funeral services for Emma and Madelyne will be held this coming Saturday, June 17th at 12:00PM. Please note that the location has changed. The service will be at the Church of Jesus Christ of Latter Day Saints chapel on the corner of Oso and Antonio. 26176 Antonio Parkway, Las Flores 92688.

Map Here

Abby doing great

Seriously people, our little Abby is one fiesty little lady! As it turns out, those "clamping down" spells yesterday were just Abby saying, "Hey! Take this stinkin' tube out of my throat!" I told Abby that in order for us to do that, she would have to sit still and breathe well all day. Being the good little Abby that she is, she listened to her daddy! (Something tells me I shouldn't get used to that). Anyway,she did great all day. The RT would lower her settings, and as long as she did well, she would lower the settings again a bit later. This happened all day long until finally the RT came in with a big smile on her face and said, "let's take that thing out!" Woohooo! No more Ventilator Tube! She did have to go back on the CPAP though which is the big tube across her nose and up around her head. Take a look at the collage to refesh your memory of this horrible contraption. We're not worried though because this is much better than the ventilator tube.
Abby is doing great on the CPAP in terms of her heart rate and SAT levels and all that mumbo jumbo. Hopefully by tomorrow, she will be able to go on the nasal cannula.

She hasn't been able to start on her feedings yet, but that should be coming soon. Maybe by Tuesday. And from there, as long as the shunt continues to work, which it seems to be doing fine at the moment, we'll be in good shape more or less.

I thank you all for your prayers. My testimony of the power of prayers and blessings have gone through the roof during all this. It has been incredible. I know Heavenly Father hears our collective prayers on Abby's behalf. On that note, please make sure to pray for Abby's continued strength and good lungs as well as for her shunt to work properly and to not get clogged or infected.

Have a great Monday friends.

Abby update

Hi all,
I wish I could report some great news today, but no such luck. Abby girl is not bouncing back from the surgery as quickly as we had hoped. We got in this morning to find that she was still on the ventilator. During the night she wasn't tolerating the vent very well so they couldn't go down on the settings. A few have told me they aren't too sure what all this ventilator business is all about so let me try to explain. Basically, Abby is on the ventilator to help her breathe and to "go down on the settings" means that they are reducing how much the ventilator is helping Abby. The docs will only go down on the settings when Abby shows positive signs like a good heart rate and trying to breathe on her own etc. T he goal is to keep going down on the settings of the ventilator until eventually, Abby won't need it anymore. We thought this would be today, but this wasn't the case.

Abby also got some blood today (standard after an operation), which was a good thing because she was looking a little pale. The blood made her pink and a bit more alert but she was still pretty agitated so Jennie, her nurse finally gave her some pain medication that pretty much wiped her out. This is where the big scare came in.

Since she was out like a light, Jennie and I started to move her position to her back. It's important to rotate her from side to side as well as on her back every so often, however she wasn't doing so great on her back today. Since she was so zonked we figured it would be a good time to put her on her back, because she wouldn't notice the difference anyway. Ooops. As soon as we moved her, Abby's heart rate and something else called her SAT level (blood saturation level - how much oxygen that is in her blood) dropped way down. Farther down than we have ever seen. I could tell Jennie was nervous...and she never gets nervous. Kelly ran out to look for a Respiratory Therapist. Meanwhile, Jennie had started to assist Abby's breathing with an oxygen bag that she pumps manually. They call this "bagging." So while Jennie is bagging Abby, we still can't see her chest rise! Oh man...now I'm getting nervous. By this time we had 4 nurses helping out, 2 respiratory therapists and one of the doctors came running in. Thankfully, soon after the bagging began, her chest started moving again and her heart rate came back up as well as her SAT's. So what happened? Why wasn’t the air getting into her lungs? Well...it was explained to us that she "clamped down." Great! Another term we need to figure out. What does clamping down mean? No idea. But I'll give it a shot (if one of you nurses out there is reading this, feel free to chime in on the comments section to clarify this). Basically, Abby closed off her airways. She got so perturbed that the passageways to her lungs literally clamped down. This could mean a number of things. It could mean that Abby is just not feeling well from the surgery, it could be that she’s irritated from the ventilator tube down her throat, or it could be a sign that she has some sort of infection.

This happened once more around 10PM tonight right before we were going to leave. We called at midnight and she was doing fine. They did increase the amount of breaths she was getting on the ventilator from 18 to 20 per minute, and they also increased the amount of pressure that those breaths were being pushed into her lungs. Remember, we want to be going down on the settings, not up, so this was a bummer but hey, as long as she is doing okay and the settings are considered super high, I’m okay.

So for now it’s a waiting game. They will run blood tests to see if Abby is coming down with anything and they will monitor her closely to see how she does on the ventilator. Our prayer and hope is that this clamping down business isn’t more than Abby just being upset from the surgery and the ventilator tube.

I don't have any new pictures of her after her surgery but here's one just for fun. By the way, I'd like to publically thank Clint and Kelly Helton for their help on this blog site. The collage is fantastic! Thanks you two.

Surgery follow up

What's up Abby Fans,

I hope everyone had a good Friday. Kelly and I are happy to announce that today marks 5 incredible years together! Yep, our 5 year anniversary was today!
Alright then...let's get down to it...

We all know she had surgery this morning and had her shunt was put in. As I mentioned earlier today it went well. Because the doctor had to shave another part of Abby's head for the shunt, Kelly asked him to go ahead and shave the whole thing. I think she looks a lot better than the half shaved thing she had going on before, but Kelly isn't so sure. Her head circumference has already gone down significantly now that the shunt is draining all the fluid into her abdomen. From there, Abby's body will just absorb the fluid. Since there was a lot of fluid to be drained right away, her tummy area has gotten pretty big. This was expected though. The shunt tube itself is pretty visible right now. It starts behind her left hear, goes down her neck and down the left side of her chest and into her tummy. As soon as Abby gains some weight, you won't be able to see it.

Since Abby had to be put out for the surgery, she had to go back on the ventilator. Bummer. She was doing so great on the nasal cannula! But today, the RT (respiratory therapist) had already gone way down on the ventilator settings and we hope to have her off of it and back on the nasal cannula by tomorrow morning. Another surgery set back is that we had to stop Abby's feedings. This is protocol for the surgery but we're hoping she resumes her feeds tomorrow evening or by Sunday Morning. She was getting 14 CC's every 3 hours, but she will start back up with about a third of that. As long as her tummy tolerates it well, they will continue to increase her feeding amount, but after surgery it usually takes Abby a while to get back up to speed on her feeds.

Our doctor said that the next 3 months are the most critical for the shunt regarding infection. If we can make it past 3 months, then we're more or less in the clear from a shunt infection stand point. And as of right now, everything is going well. Abby is our little fighter! She now has 3 surgeries under her belt. One heart surgery and 2 brain surgeries!

Thank you all for your continued love and support. Please continue to write all your kind words on this blogsite. They mean so much to us and they're nice to read after a long day with Abby. Whoever wrote that prayer...thank you. It brought a much needed tear to my eye. And for those of you that continuously pop in to say hello, we love it. Keep doing it.

Have a great Saturday. Pray that Abby recovers quickly.

K n R

Surgery went well this morning

The surgery went as planned. Abby is stable but conked out at the moment. I will email you guys soon with more. But for now, just know the prayers are WORKING!

Ryan

Extra prayers for Abby

Today was better than the last couple. Abby didn't have nearly as many spells. Her color looks good and she actually lost weight which we were happy to see because she was retaining quite a bit of fluid lately. She is still over 2 lbs though which is great.

Friday is a big day. Abby goes into surgery at 7AM to get her shunt put in. The biggest risks are that the fluid may get infected and that the shunt gets clogged. Another bummer is that Abby will have to get that breathing tube stuck back down her throat. Last time she had the surgery for the reservoir, it took a couple of days before she was back on the nasal cannula. We are hoping she bounces back a bit sooner this time. The good part is that once the shunt is in, assuming everything goes according to plan, Abby shouldn't have any spells related to pressure in her head. The pressure also can disrupt her digestive system and this too should go away after the shunt is put in.

She needs extra special prayers tonight and tomorrow my friends.

Ryan

Supplement to previous post

From Ryan at 3:30PM Wednesday:

Abby is doing better at the moment. She got 6 more CC’s tapped from her head and they also suctioned her nose. The combo of these has her feeling much better. Phew!

Wednesday Abby Status

From Ryan this afternoon:

Hi everybody,

Here’s the rough news:

Abby had a rough day yesterday. She was having a ton of spells so they tapped her head and pulled 11 CC’s of fluid out. That’s a lot. Still though, she continued to have the spells and her head circumference didn’t go down much. Plus, her fontanel which is her soft spot started to feel a bit full even after the tap. This supposed to feel soft again since we took some fluid but it doesn’t. The fact that her spells continued is cause for concern because this means the spells could be caused by something else, like maybe another infection. She just got through those other ones and now there’s a possibility for more. So the nurses pulled some blood from her to do a full work up and check for all kinds of things. She was also looking a bit puffy, not like the good weight gain we want to see. That means she’s retaining fluid. She has been given the Lassex to help her pee and an enema to help her poo but not much was moving. That was the story during the afternoon…

Here’s some positive news:

When I got there around 5PM, her spells slowed down a bit and by the time we left she wasn’t having too many. Maybe a couple an hour which is a lot better than before.

At 3AM we called Karen, our nurse (whom we love by the way) and she gave us the good news that she did the ole number 2 like there was no tomorrow. She peed a lot as well. And she immediately started to act less lethargic and seemed quite a bit more comfortable. Was her constipation the cause for the spells and not the fluid in her head? We don’t know. It seems like it for now.

Some more news is that the Neurosurgeon came to look at her and decided that we should put the shunt in sooner rather than later. So, on Friday our Abby is going to have yet another and very serious surgery. We’re looking at this as a good thing because if all goes well this is the last foreseeable surgery that she will need for a while. We know there is an incredibly long road yet and are aware of all the variables with Abby, but we remain hopeful that this will be all she will need from a surgery stand point for at least a while. The concerns of this surgery are infection of the spinal fluid during the surgery and blockage of the shunt after it’s in. If the fluid gets infected there is a good chance for even more brain damage. If it gets blocked and the shunt can’t transfer the fluid out of her brain, we obviously have to take it out immediately. By the way, the official name of what is going on with Abby’s head is Hyrocephalus. In the mean time, click on this link to learn more. It really explains it well for us common folk.

Hycrocephalus

So…here we go again. My Goodness. Abby is such a fighter. I appreciate every single prayer that is offered on her behalf. Keep them coming this week.

Love,

Ryan and Kelly

Abby update

Abby is doing pretty well these days. She is still on the nasal cannula and doing okay. She still has her spells every hour or so, and they're still 3 to 5 spells in a row. Some take quite a lot of assistance from us to get her breathing again (rubbing her back, flicking her feet, lifting her up) and some she "self resolves" or just remembers to breathe on her own. If she continues to spell this often, she will get her head tapped again tomorrow to pull some fluid out. She tends to need it every 3 days or so and the last time it was done was last Saturday.

Both Kelly and I got to Kangaroo her today. Kelly had her for over 3 hours. I had her for only an hour and half this evening. It is so much fun to hold her. It is hands down the highlight of our day.

She is gaining a ton of weight. The docs are actually concerned that she's gaining a bit too much too quickly and think she might be retaining fluid. She was given some Lassex which makes her pee like crazy. She was also given an enema and was able poop finally. Even after all this, she still weighs 2lbs and 8 ounces!!! She will be looked at closely on this issue to ensure the weight gain is positive weight and not just fluid build up. Personally, I think she looks great. She used to have these wrinkley little bird legs and now they're puffy and chubby, just like a normal new born, only 5 times smaller!

Abby had her first visit with the developmental therapist today. Kelly said she was very nice and she was pleased at how Abby was doing given her brain bleed and all. We learned a few things to start doing with Abby and the therapist plans to stop by each day to check in on her.

I've attached a few pics for your viewing pleasure. The picture with the tube blowing smoke in her face is my favorite. The smoke is a kind of lung medication and it's basically a steroid that she inhales to improve her lungs. I don't know why, but she cracked a smile right when I took the picture and as you can see it's super cute. The other picture is when she was on my chest. She put her own finger in her mouth.. that wasn't staged. Another favorite. Okay, who am I kidding? They're all my favorite.

We love you all and hope everyone has a great day.
Abby's spells are picking up as I mentioned. Say some prayers she stays strong and doesn't have too many.

Love,
Kelly and Ryan

A great Saturday

Saturday was officially our first good Saturday.
We arrived around 10:30AM to find out that Abby just had her head tapped and had 8 CC's of spinal fluid taken from her head through the reservoir. Before this, she was spelling quite a bit. While spells can be caused by a lot of things, it does seem that in this case, Abby was having her spells because of the increased pressure on her brain. Shortly after the tapping, she was clearly relaxed again.

So! Daddy got to kangaroo hold Abby for the 1st time! It was fantastic. She was very comfortable and so was Daddy. They sat together for close to three hours (remember, kangaroo holding is skin to skin with little Abby right on Daddy's chest!).

Abby is up to 10 CC's of breast milk every three hours. Today they're increasing her calorie intake as well in order to help her gain weight! We'll let you all know what she weighs in at later. I tend to have these little eye opener kind of thoughts during this experience and one is that I never thought that my baby would be so small that I would have to drop down to using the gram measuring scale instead of pounds and ounces. But that's okay because she is so increadibly cute at this size and I can hardly stand it.

We still and will always have Abby's head to be concerned with. I spoke with the neurosurgeon yesterday, and Abby will definitely need a shunt. A shunt is a tube that goes from her brain to her stomach that will drain the spinal fluid. This will eventually take place of the reservoir. We just need to wait until Abby is good and healthy before she gets it in. We're anxious for this so Abby's head doesn't build up like it did yesterday and cause some discomfort. The shunt will allow her brain to consistently pass the fluid out of her brain without this build up.

So... all in all, your prayers are working wonderfully. Keep them up. Pray for continued strength, weight gain, and of course toss in a request for a miracle regarding her little head.

Our love to all. We're off to the hospital! Have a great Sunday.
Kelly and Ryan

P.S. In the picture, the bracelet on her arm is daddy's wedding ring!

Another good day

Alright! Another good day for Abby folks. She is doing great on the nasal cannula and the cultures are still negative for the infections! Mommy got to Kangaroo hold her today, which for those of you that don't know is holding Abby on mommy's bare skin chest. I t's a toss up as to who was enjoying it more.

She still had her spells today but towards the end of the day they seemed to slow down a bit. She likes to have 3 to 5 in a row. She'll stop breathing, Kelly will rub her back and stimulate her a bit, then her heart rate will pick up again, only to drop down. Then it's up and down a few times until she finally decides to breathe. This is typical preemie behavior as we've been told, however, we are looking forward to these slowing down a bit because they always make us a bit nervous.

So get this, she smiles! Well... not on purpose anyway, but she does make this smiling face. It is absolutely adorable. Kelly asked about this and the nurses said that she does this when she....well...when she's farting! Let's just say that our Abby was smiling a ton today. Tonight she had yet another good poop and she got some new blood too. She always feels better after each of these.

Something else to be excited about is Kelly's meeting with a member of the Developmental Team on Monday. We're not really sure what this is all about exactly, so we'll keep you posted.
We've taken a few nice steps forward in a row these past few days, but the weekends haven't been kind to us since this all began. Please pray that we have a good weekend and that Abby continues to be strong and hang in there!

Love,
Kelly and Ryan

Abby update

Hola,

Well let's see. Thursday was a good day in many respects. Abby is still on the nasal cannula and her repiratory system seems to be doing well. We went up on her feeds to 6.8 CCs from 5 CC's of milk every three hours. Her little tummy does pretty well sometimes and then other times decides it doesn't want to digest anything. Abby has a yellowish tube going down her nose...that's her feeding tube. So before Abby's nurse gives her the milk through that tube, she'll take a syringe, connects it to the tube and pulls back on it to see if there is anything in her belly. If there's a bunch of milk still in her tummy, they'll hold off on feeding her. But for the most part she's doing pretty well. And yes, she had another poop today! Neither the yeast nor the bacteria cultures have come back positive so we're starting to feel more confident that they're gone. Abby also had an eye exam today. T he eye doc just wanted to come see her and get her on his rotation and start watching her, but for now, the consesus was that she has premature eyes and he'll be back in two weeks. Okay! Thanks for stopping by! After that, Abby got a visit from the neurosurgeon and he pulled out 8 CC's of fluid from her head. We're hoping that helps her spells, which has been the only downfall today. She's having quite a few of them. It is possible that the pressure that builds up in her head from the fluid can cause these. As of Thursday night, she seemed to be doing better.

That's all for now Abby Fans. Love you guys.
Have a good weekend!