Progress at Last

Look at me go...i am a blogging machine tonight! I wanted to let everyone know how well Ava is doing, and how thankful we are for everyone's prayers and fasting. So she is now at 4lbs 4 oz, and is eating 70% of her food orally. The fortifier that we add to the breastmilk in order to bulk up her calories was changed, and I guess it tasted pretty nasty, cause she refused to eat it. She needed the nasty stuff though, cause it really helped her diarrhea situation, and consequently her sore bum rash situation. But she is now changed back to a more palatable fortifier, and is doing great.

The doctors even started talking today about our plan to go home...it is really coming. I am guessing it will be within the week.

Also, the geneticist spoke to us today, and, as we expected, he is having a difficult time diagnosing her. The best indicators for syndromes become more apparent as children develop, so really this will be a discovery process, and we probably will not have answers for months or even years. But she will have another eye exam and a hearing exam very soon, so that will be helpful to us as we prepare for life at home. You can see her little eye open in the pictures, and she is doing a lot better trying to open the other eye. She really is looking great, and is becoming more and more alert and active. She makes me laugh all the time, and has such a big personality for such a little girl.

She is also acquiring quite the fan club--nurses come all the time just to say hello and to check up on her, even when they arent working! it is so cute to see...I bet they have parties at night, cause sometimes she is so tired and dirty, I cant imagine what she has been doing! but I am glad that she is having more of a social life than I am!

Mr Monk, my best friend...

So I have grown very fond of Mr Adrian Monk, despite his many personality flaws; we have spent many a night together...and i didnt mean that to sound sketchy, so let me explain. Since little Ava is not able to breastfeed still, i am pumping for 20-30 min every two or three hours. Mr Monk has been such a loyal friend, and he almost makes waking up at 3 am enjoyable. I think I am starting to become a little more OCD, and I know the theme song by heart--and now everytime I hear the sound of my pump, the theme song comes to mind...behavioral conditioning. Anyhow, a big thank you to Tony Shalhoub for making me laugh out loud in the dead of night while painfully attaching myself to the merciless pump.

Bath Time!

oh my goodness...I just wrote this ridiculously long post, and then I lost it...this is stupid. Well, I will now give you the reader's digest version, which you would have probably preferred anyways.

So Mom and I were giving Ava a bath on Thursday when Dad surprised us by stopping by as well. It was a regular party! So Dad became the photographer, Mom the official baby holder, and I washed her as quickly as I could because she sometimes has little patience for anything that does not involve food, her binki, or snuggling. Looking at the pictures, I am always surprised at how little she is. When I am holding her she doesnt seem that small, but in pictures or when she is held by someone else, I am reminded at how tiny she is. So yes, that is her we are washing, not a toy doll. And I am an amateur, so sorry about the sideways pictures and the subsequent crick in your neck...

Sleep over Party

So tonight Wade and I get to have a sleepover with little Avalee at the hospital. We get to stay in a rather small, but private room for 24 hours to get a little taste for how things will be once we go home.

We are planning on having a party, and getting no sleep--between the eternal beeping of her oxygen monitor, the constant changing of her diaper (she still has terrible diarrhea, poops constantly, and has a terrible rash on her bum), feeding her every three hours, and my pumping every three hours...there is not going to be much time inbetween.

So Ava will be on oxygen until she has corrective heart surgery, which will be in about six months. I dont know how I am going to make it through; just think of an alarm clock going off randomly all day and all night, but this alarm clock is hooked up to your child, and affects her health...if the oxygen gets too low, she turns purple, and doesnt get enough oxygen to her brain, and if the oxygen levels get too high, her already strained heart has to pump against more pressure. Wish us luck.

This little sleep over is also going to be a kind of trial run for Ava to see if she can orally take all her food. Having different nurses all the time is kind of problematic when she is trying to learn how to take a bottle, so we are going to try to provide a little consistency to see if that will help her valiant efforts. There is talk that if she isnt able to orally take her food, then we will be looking at some kind of a tube feeding system for when we go home. So needless to say, we hope that her little body can manage this trial run okay.

She is gaining weight though, which is great; she is now a few grams within four pounds. We appreciate everyone who has been praying and fasting so dilligently for her. I wish that I could talk to and see more of you, all the people who support us and love us, but until we can do that, know that we really appreciate all of your efforts to help our family.

It is funny how one minute I can feel completely content with the situation, and a few minutes later feel overwhelmed...Just thinking about the demands that are going to be on our family, and the wondering why this poor little girl has to endure so many things, and the feeling of being so young and unprepared for this experience has been a trial of faith.

But then in some ways, it doesnt really seem like a test of faith at all, because it feels like God is right beside me, and, if I remember, has been from the beginning of this. When we first learned that she had a heart problem at around 28 weeks, I felt a prompting that told me to buckle myself in, and prepare for something hard ahead. It was a reassuring, though very somber feeling, and it did not try to sugar coat what was going to be ahead. I have felt that same feeling come back again and again.

It reminds me of when I was a little girl and split my head open on the food storage room door. Dad took me to go get it sewed up and he held my hand as the pain got worse and worse from the doctor stitching it up. I just clenched his hand and held on. Dad didnt try to minimize the pain by telling me it would go away or anything, he just let me clench his hand, and he was there for whatever I needed. I feel like my Heavenly Father is there in that same way, not pretending like this experience is going to be easy, and not trying to minimize it, but always staying by my side for anything that I might need. How I have appreciated that feeling, though I have not always appreciated the painful experience accompanying it. It's funny how I feel as vulnerable and young as i did getting my head stitched up as a small girl; I need that hand to hold, and that strength standing beside me.

I have had a lot of ponderings as I have gone through this experience with Wade and Avalee, and all of you who have supported us. Though this is enough ponderings for now, feel warned that this blog may be filled with all my thoughts and questions as we continue this difficult, but equally sweet, journey.

Love to you all. I wish I could spend time with each one of you, but until then, know of our love.

Avalee Grace

Well, here is our blog...I have never blogged before, so what to say exactly, I am not sure. Wish me luck.

So Avalee Grace got here on Oct 5 @ 3:40 pm after I was sent to U of U hospital for an emergency C section. She was born at 3 lbs and11 oz, and was 15 3/4 in. I just cried when I got to hold her for the first time; I wasnt prepared for how much love I would feel for this tiny little person.

The entire pregnancy was rather complicated and filled with many unknowns about the condition of the baby. And now that she is here, the situation is still much the same: complicated and filled with unknowns.

We knew from early on that she had a heart condition called "Tetralogy of Fallot", which simply means that she has four different heart defects that run together. Her case is not very severe, but it certainly complicates matters. The cardiologists plan to operate when she is 6 months old.

Little Avalee has manifested some other anomolies: she had some quite violent spasms, which would cause her arms and legs to shake pretty consistently, her hands were clenched with her thumbs on the inside, and other minor physical things. She was assessed after she was born, and they judged her to be about 2 1/2 weeks younger than she was; she just didnt grow or develop well inutero, for some unknown reason.

She has been looked over by geneticists, neurologists, opthamologists, etc and the results are not very conclusive. It seems there are no chromosomal abnormalities, and no epilepsy. (And her spasms have lessened in frequency and strength, which is great.) But whether or not she has a syndrome or brain defects is unknown. The opthamologist reported that perhaps she is blind in one eye, and will only see in black and white in the other.

Other than that, the main concerns right now are that she is not gaining weight. She is still sitting at 3 lbs 8 oz, and has shown no real significant weight gain since she was born 18 days ago. The doctors are fortifying her milk in order to give her more calories, without increasing the volume of food that she has to digest. The doctors were talking today about the criteria of her discharge, and they said that they would like to see her get to be about 4 lbs and 6 oz before she goes home. The rate at which we are going now, that could be months...so prayers and fasting on her behalf would be hugely appreciated.

We just want to get home, though that will still be rather stressful, seeing as she will be on oxygen, and feeding tubes of some sort. But at least we would be together and be home.

We appreciate everyone's love and support, and have been so blessed to have friends and family like you. If you have questions, feel free to ask, and I will try to answer in this blog. Hopefully I have not made this too confusing or overwhelming.

We love you all!