Well our prayers have paid off!

Evie's Medicaid was renewed, based on her physical therapy which requires nursing.

Also, strangely, we found out from one of her nurses that a new law starting in January will require all insurances to cover "elemental" baby formula, like Evie's Elecare. So Aetna should have no more right to deny coverage. Whoohoo!

We have also been blessed that the Baylor feeding program that Ev was due to go to in December got bumped up to October 28th, due to some extreeme hustle and bustle from some extraordinary women at Baylor's Our Children's House. They worked super-fast to get her in, just in case we lost coverage at the end of October.

So Evie has been in Baylor since that wednesday (2 weeks now). She is progressing very well and is eating from the spoon again now. As well as not spitting out her food anymore. The nurses up there just love her, she blows them kisses, and she is getting to see a few other kiddos (in-patients) from time to time as well. They anticipate her leaving just a few days shy of 4 weeks, which is excellent news and a little early.

She has coped all-in-all very well also, with the exception of a small (so far) cold and runny nose that began on Sunday. She ran a little fever Monday night at just over 102. So far, though, it has stayed down from that. She is a little fussy but mostly being very sweet. She did get her swine-flu vaccine last night and was a tough cookie.

She has learned to say "baby", "go", "binkie", and "mama". And she can now sign; dog, cat, bird, dada, mama, please, thank you, dinosaur, bunny, butterfly, baby, drink, eat, ball, and diaper change. She speaks her own language fluently though, and has an awesome version of ABCs, mostly random sounds at the same pace and tune. :-D

Thank you to all for keeping up with Evie's progress and escapades. God Bless.

(PS, our house caught fire on Sept 17th, so we are not at home much right now during re-construction, so call our cells as the home phone is temp. shut off)

I don't have a lot of time, but please pray for the following:

Evie's Medicaid to renew.
She is on RX food that is $682 a month plus $100 in thickner that our Insurance will not cover.

Evie to get Inpatient Feeding Therapy before Medicaid runs out so that she will eat real food or purees and not need so much formula.

Our Orthodic Appt to happen FAST before the Medicaid runs out. Her feet are starting to deform due to poor standing.

And her continued health despite isolation and 0 Neutrophils.


Thank you everybody for your well wishes!

Well Evie has had quite a run with the virus she came down with on June 14th.
After being admitted to Cook Children's Hospital in Fort Worth, her fever spiked at 106.3° that Sunday night, then came down gradually after that.
She eventually developed a small rash which the doctors said pretty much confirmed a viral infection. The tests they ran for a few known viruses were all negative, so we are still at a loss for what virus she may have had. Her tests for flu, swine flu, Parvo, HIV, Heb B and Heb C were all negative, so that is good news.
We were released on the 18th and she was recovering well, if not grumpily, here at home. However, her blood tests showed no Neutrophils (ZERO) since the 16th of June.

http://www.neutropenia.ca/about/index.html

Even though she had an ANC of absolute zero, they sent her home on Thursday, as our house is safer than any hospital when it comes to a bacterial infection (after all, she has never had one and she has been home one whole year as of this past Monday!).
We have been following up with Hematology every week since release, and when she still had an ANC of zero on the second week, they scheduled a Bone Marrow Biopsy (BMA) to make sure she wasn't having a bone marrow issue. Mostly it was due to my history, they wanted to be on the safe side. She had a bilateral BMA (both hips) on Friday the 3rd of July. The results showed that she has severe Auto-Immune Neutropenia. Meaning that her bone marrow is fine, and producing lots of Neutrophils, however, her own immune system is killing them as soon as they are released into her body.
It is relatively benign, and most people and children never know they have it, unless they happen to have their blood drawn or have recurring bacterial infections, which of course Evie has had none. It will usually go away in a few years.
We were told to take the normal precautions we were already taking, hand washing, moderate isolation, keep her clean, stay away from sick people. All things we did anyway since her prematurity.

So no worries, she is okay and feeling great. She was having a lot of PTS after the hospital stay while she was sick. She had a hard time sleeping here at home and was screaming anytime you put her down. But since the BMA, she has sort of snapped out of it. So she is back to sleeping well and being happy around the house here. She did cut her 7th tooth on June 13th, and the Hematology doc says she can see more coming. So we have more crying to come in the next few months.

Thank you to everyone who came to FTW to visit Evie and give support. And thank you to everyone for all their prayers and to God for answering them. We hope everyone is enjoying their summer and we will have more good news to come of Evie the Great. Cheers!

We woke up Sunday with Evie running a 103.2 degree fever. So we were admitted to Cook Childrens' Hospital in Fort Worth. Evie was assumed to have a virus and was given fluids and a super anitbiotic just to be safe. That night her fever spiked at 106.3 but has come down ever since. She did develope a rash yesterday which the Docs say solidifies the viral assumption. She would have gone home yesterday or even today, except her nutrafill (sp?) count has been zero for the last 2 days. So we are kind of waiting on an upward trend in those numbers.

Overall, Evie started feeling much better yest and today. She is crawling around despite the IV and started eating a little yesterday and continues to improve today as well. She did break her 2 front teeth through either Thursday of Friday of this past week. So that is fun for us, but not fun for her, and certainly not helping her attitude in the hospital this week. She is currently in isolation, to prevent the spread of her virus to the other children, but also to limit her bacterial exposure since she has no white blood cells for now.

Please keep her in you prayers, love to all!

Here are some pics from Evie's big 1st Birthday Party. Yea!!!!

It was a blast and she is doing wonderfully, at home she weighed in at 13 pounds, 13.5 oz on the 12th, her Birthday's Eve. She had a great time at her party and thanks everyone who came out to see her.

Evie can wave "hello" now and can say Da-da, although she doesn't seem to connect it Matthew just yet. She also says Bubba, and tstss, in addition to her la-las and ga-gas. Her allergy testing on Feb 2, came back as a mild allergy (2+) to Dairy, Soy, Wheat, Eggs, Fish and Nuts. So we are being very cautious on the food front right now. But she is gaining weight slowly and steadily, and she grew just over an inch this month!



Well, she liked the pineapple, anyhow.
Hey Evie, what letter does your last name start with?

Seriously, Evie.... Who's number one?

Well, a lot has been happening for us, as I imagine in all of your families this last month. We hope everyone had a great holiday season and we are excited for what this year will bring. We will try very hard to keep you all in the loop!

Evie got her first tooth on December 22 and now has two teeth broken through! (Her front bottoms) She is really enjoying the new discovery and likes to rub her thumbs back and forth over them.

She has also upgraded to showering with Mom or Dad which she enjoys much more that the cold bath that usually made her cry.

She seems to have lost interest in rolling over once she mastered it. So we are now working on Sitting Up and Spoon Feeding. She truly ate from the spoon for the first time this past Tuesday, the 6th, when she managed to get down a whole tablespoon in 20 minutes without spitting any back out. Yea Evie! We are also practicing holding a pacifier in her mouth with her hand, since she still spits it out with her toungue.

Evie is 13 pounds, so not gaining too much weight right now, but she is at least pretty steady. They have cut her blood pressure medicine in half and may remove it completely by March.

That's about it for now. She bu-bu-buhs, and ta-ta-tas away so maybe we will hear a "Da-da" soon. Thanks for following up with us and blessing to all!

Evie is just doing so great.

She now eats so much formula that she only eats 3 times a day. Also, it's time to start training her to eat solids (spoon training with thickened formula).  Evie is 12.6 pounds and 24.25 inches long and her growth curves are starting to catch up with full-term babies, rather than drop off like it was in past months.  Empress Evie can also roll over, hold her head up and, usually, return roll onto her back again.  Evie discovered her feet last month and now plays with them constantly.  Evie has also started to talk in baby babble and screeches like little babies do. It's awesome!

It's all so good...  Happy times.

Evie can also vote. :-)

Hello All!

Evie is doing much better lately. She rolled over for the first time on election night and has been rolling more and more ever since. She first rolled from her back onto her stomach and is working on learning to roll from her belly to her back.

She is still 23" long but is around 11 lbs and a few ounces, although she is still quite small and very thin. She still wears some of her newborn clothes, as well as 0-3 mos now. And some of her footed PJs are 6-9 mos! :-D

Thanks for keeping Evie in your prayers!

We still have not received any word on the reults from her test at Cook Children's. Maybe tomorrow.

Generaly, the first question each new doctor asks after learning that Evie is a micro-preemie is: "Did she have any (cerebral) hemorrhaging?" And when I fire back "No", wondering if they see something in Evie that precipitates that question, they hastely replay: "For a 23 weeker, she's a miracle." As unrattling as these moments sometimes are, I do see a flip side to the situation. Over time, these little occurances have come to engender a true sense of just how lucky we are as a family. I am sure you've noticed me relishing in my genuiene apprication of our good fortune when Evie's being cute, such as sleeping or staring at something, totally entranced like a cat's random stare. At those moments, I am counting our lucky stars.
However, in another way, I am mindful not to boast too much as I'm all too aware of how many families there are that are not so lucky. Five months of walking past the Labor & Delievery waiting room daily, if not multiple times in a day, profoundly drove that lesson home. Most days I'd catch a hurried father in scrubs busting into the waiting area pronouncing the sex and weight of their child as the family applauded and cheered in reply, some jumping up and down in glee. Honestly, it hurt to watch even though every one of them deserved that blessing. And when my walk past them ended at Evie's side, where I'd watch as she fought the odds stacked against her, I'd wonder how unaware I might have been of others in the past. Not too long ago, we become one of those unlucky families with the loss of our oh so dear Victory. It was then that we discovered we were far from being alone.

We were not able to get the paper work faxed in time. Therefore, Evie's entry was disqualified. Please forgive us and thank you for your vote. That's what matter's most.

Evie was discharged today at noon. Birdi says the doctor will review the data collected in the study and get back to her in seven days. I asked if Evie cried when they removed the wire from her throat, the IV from her arm as well as the cuffs and Birdi replied "of course". How Evie put up with all this amazes me. What a blessing to have such a little trooper. If I had been in her place, I would've done much worse. It must have been torture for Evie to not suck her thumb for 24 hours.
Birdi seems discouraged that none of Evie's difficuties in eatting were observed in the 24 hour study and that all this sacrifice may be for nothing gained. I remain hopefully as I know the data should at least confirm what meds should help Evie eat and rest and therefore grow.
The photo is of the wonderful sunset view from Evie's fourth floor window.

I pulled duty on the feeds and cleaning while we stayed there last night. My brother Mike pick me up at 4 AM so I could go to work which was very nice of him. I fed Evie every three hours and she never ate her allotted four ounces within the half hour limit set by the doctor. Evie usually eats close to eight ounces at home but barely did half that here in the hospital. The first two nursing shifts showed great customer service and were attentive.

Grandparents Brian and Donna drove out to visit Evie.

The photo is of Evie's window from the view of the front entrance. It was such a beautiful day.

Evie ate a little more than three ounces and is now sleeping sound. That's not a lot to eat but at least she's got something in her tummy. Her stomach has stopped growling and her gas is dying down so I think she is getting comfortable. I'm sure her IV is helping her feel better as well. Her reflux shows her pH level peaking out at 7.6 when she lays down after eatting.

Evie is up and stinking the room up as her stomach is awfully bothered. It's taking them forever to get her food ready so Birdi has gone to the car to get it herself. This hospital is not too big so not to much of a walk like Presby of Dallas was.