Tuesday, March 31, 2009

Baby Makeover!





Ava got a makeover today!  Her stomach tube was moved to a stylish right nostril position.  She got some clothes from the new spring collection.  She got her IV moved from her belly button to her right wrist.  And she got treated to a milk shake, 5cc's!  Yummy!

Here are some pictures of our little supermodel.

Monday, March 30, 2009

Tummy Ache


Today, we had a few developments.

Kidneys-

They did a urine flow test to see if she has any reflux into her kidneys and...negative!  She does not have any.  However, with a ureterocele, there may be a chance that her bladder doesn't empty completely.  So, they are putting her on some preventative antibiotics because this condition makes her more prone to urinary infections.  We will have a follow up with a pediatric urologist in a month or two to re-evaluate for further treatment.  That may include surgery to help the flow, but for now, the outlook is that there should be no surgery required but not 100% sure.  We are happy with that.  It's kind of like getting a 90% on a final hip exam.  I'll take it!

Brain-

The neurologist hasn't spoken directly to us, but through the grapevine we have learned that the two fluid pockets in her brain are probably signs of prior trauma.  These may or may not be causing her itty bitty seizures.  They do say that there is a good chance that these episodes can go away but she may need to stay on her medication.  Further testing will tell.

Tummy Time-

For some reason, she is not passing her food through her stomach to her intestine.  It may be due to the fact that she hasn't eaten since birth and her body needs to re-adjust to the whole eating thing.  She will be supplemented by IV so she will be healthy and happy.  She has actually gained a couple ounces.  She now weighs a whopping 5lbs. 13oz!  She will be trying out for a sumo team next week.  The NICU has an intramural team with a March madness tournament.  She is my pick for the final four and eventual champion.  You can take that to Vegas!

Overall-

She is chuggin along like the lil engine that could, and she will.  She has been a little sluggish probably due to her meds and the whole birth, traumatic event.  I don't blame her.  So, a few prayers for her to perk up would help. 

Thank you for all your prayers and help.

Saturday, March 28, 2009

First Cuddle





Today was so awesome!  We got to hold Ava for the first time, and it made us melt like a frosty on the pavement outside a Wendy's in San Antonio during August.  The nurse was so nice and helped us hold her.  She periodically checked her belly button IV and temperature to make sure she was remaining stable.

This event was due to her baby steps progress.  It is actually a small miracle that her heart has been cleared.  The postnatal duct in her heart has closed and the resulting bloodflow is normal!  The cardiologist feared and expected that the resulting aorta would limit circulation to her lower extremeties, thus restricting her activity including feeding.  Since that is not a problem, she has begun feeding today on formula and Terah's milk.  (Thanks Terah!)  She hasn't eaten much because she was sedated for a procedure last night.

She required an MRI to investigate the cysts in her brain as seen on an ultrasound image.  These pockets of fluid should not be there and may be causing "itty bitty" seizures.  Every so often she flinches and shakes her right arm.  They have given her medication which reduces these episodes, but the NICU team is not sure what the cause is and if there are any negative effects.  The preliminary results of the MRI show that there are two fluid pockets in her brain and pocket of blood at the back of the brain stem.  The latter is probably asypmtomatic and many normal babies have this without symptoms.

Speaking of normal, she is peeing and pooping like a champ.  She has duplicate collecting systems from both kidneys and a ureterocele that is causing flow problems, but her function has been good so far.  On Monday, she will have a procedure to track the flow of the urine to see if it is backing up into her kidneys, which is problematic.

Overall, we are very happy with her progress although it seems that the docs are giving us curveballs at least once a week.  She is bigger than expected, her heart is healthy, she is peeing and pooping, and we got to hold the little angel today.  Thanks again for all the love, support and prayers!

Thursday, March 26, 2009

New Pictures of Ava




Hi all - This is Terah,
I got discharged today and it is nice to be home and with Eliza. However, I have a terrible ache in my heart leaving Ava there. I know she is well taken care of - I just feel I'm missing that bonding time and I want so much to hold her. Last night, her nurse had me help her take her blood pressure and change her diaper. It was great to feel involved in her care if just for a short time. But we will go visit her tomorrow.
Eliza loves her - She visited her and said "how cute!" and "I love you baby Ava." Today when we got home she took me Ava's room and said "baby Ava's room" "where'd she go?" It was so sweet - a lil sad though.
But on a happy note she is breathing on her own, and her head gear is off! So we can actually see her face now - which is beautiful.

I am thankful for my two sweet little girls - I feel very blessed. Thanks again all, We love ya!!!




Wednesday, March 25, 2009

Full Name: Ava Kathleen Reber


Did I spell that right Mom?  Kathleen is from Kathy Reber, my mom, and Katie Knudsen, Terah's gramma.  

We hope she turns out to be as great as you two ladies.  

Love y'all 

Wednesday evening update

Heavenly Father sure has blessed us!  Terah and I were taught some great lessons on patience and faith over the last few days.  After over 37 hours in labor, Ava joined us.  After Terah started pushing, she came out very quickly, but our hearts were torn as the doctors rushed her out of the room to get her breathing.  Terah had me follow her into the NICU to keep watch over her.  This was so hard for Terah to not be with her.  As Ava made small steps, I relayed her status to Terah.  She was stabilized as the previous post said, and here are some updates on her current condition.

Lungs

As posted earlier, she needed help breathing.  They have taken out the intubation tube and have a CPAC machine aiding her breath through some short tubes into her nose.  Her little chest rising and falling is so reassuring.  

Heart

The cardiologist examined her heart and large vessels (straw size).  He found the coarctation of her aorta to be present, however, her circulatory system is developing.  The changes that occur in the next few days will determine the extent of her impairment and the urgency of corrective surgery.  The doc did say that if she did need a surgery that it would be the less severe option of two methods. We pray that she won't need surgery at all, but are grateful that this problem is looking to be minimized.

Kidneys/Bladder

She peed and pooped!  Yay!  So far, she has had normal urine output volume although we were worried at first that she wouldn't go.  As long as she is urinating and doesn't get a urinary infection, this problem is on the back burner.

Brain

An ultrasound of her brain was conducted today and the results will be in tomorrow.  We had seen prenatally that she had some lesions in her brain so we expect there to be some abnormalities.  How this will effect her development and cognition remains to be seen.  We are hopeful that the ability of baby cells to adapt and overcome will win out.  She is alert and responsive.  Terah and I were talking to her and touching her hands and feet and she tried really hard to open her eyes.  She opened them and searched around for us as she could here us, but as you might know, newborns can't focus for a while.  She probably saw something like a sweet talking blob.  (similar to what I see when I take off my glasses)


Thanks for all of your prayers, help and good vibes.  We were truly blessed and strengthened by God and by all of your faith.  It is comforting to know that Jesus Christ has suffered all these things and has perfect love for us.  It is a hard life, but He has come before us to show us the way and lift us up when we need it.  Through His plan, families can be together FOREVER even after this life.  I thank Heavenly Father for my family and the blessings He gives to us every day and for giving His Son for us.  

Thanks for showing your love and support for us and for Ava- she thanks you too!  Terah and I are so excited for Ava to be here finally.  I had better get some rest. ROR

Ava has arrived!

Ava Reber was born last night at approx. 12:40 TX time. She was 5lbs. 11oz., 19in. long. She was a lot bigger than the docs had anticipated. She wasn't breathing on her own so she is now intibated. The tube may come out later this afternoon if she starts breathing well on her own. They had to do surgery to place an IV into her belly for medication administration. She also has a low platelet count which is normal with Jacobsens syndrome. She should recieve a transfusion this afternoon. No surgery is needed on the coarctation of the heart as of now, possibly not at all. They are going to wait for the foramen ovale to close up first and that will dictate whether or not surgery is needed. The kidney status is unknown as of now, but she has not urinated yet. They will be running tests on her today but they are going to spread them out as she gets stressed very easily. We are so grateful she is doing better than expected. Keep her and Terah in your prayers as she is exhausted.

Saturday, March 21, 2009

Just a swimmin'

Here are some cute picts of Eliza. I bought a new camera and I just love it – thanks for the recommendation Kamee! Papa (my dad) helped me set up her new pool with slide and all. She is a big fan of it and a real water bug. All she wants to do is swim now.




I haven't had the baby yet!!

I've gotten a few calls and e-mails wondering how the birth went.....oops guess i forgot to update my blog. The date was pushed back till Monday since i was so ill. I am feeling alot better now though even though i still can't hear well through my ruptured ears. 
My parents are here now visiting - so my spirits have been lifted. I have been having an awsome time with them. I go in Monday early around 6-7 to get the ball rollin. 

I'll have my mom udate the blog for me. Sorry if i had anyone worried :o

Friday, March 13, 2009

beautiful!





























I have been so sick this last week . Liz and i both have a nasty cold with double ear infections. Both of my ears ruptured on Wednesday and ive been in alot of pain. Poor lizzy has been sick too but I got her medicine in time and i dont think her ears will rupture. 

Today we are feeling a bit better at least Liz seams to be. She put on a dress-up outfit and was putting on makeup while i cleaned up the bathroom. I got a makeover also! - it goes so well with the pale sick look ive got going. Dad came home early and caught us beautifing and snapped some picts.

I can't tell you how great it feels to have friends and family that care so much for us. Thank you all for your support, prayers and encouragement. I know that Ava will be loved and cared for no matter what happens. We just feel sad that she has to go through this. We wish she was perfectly healthy, but we know the Lord is with us. 

Thanks agian, I hope everyone has a great weekend!

Tuesday, March 10, 2009

Ava Reber

 Heres the newest 3-d picture of our little one. Most of you know already that we have named her Ava, so the cats outa the bag!

Im sorry i have not posted any new updates until now, but I couldnt bring myself to type out all of the problems that have occurred.

We found out that Ava has Jacobsen's syndrome. A very rare genetic condition where she is missing the end of her 11th chromosome. This explains the problems that have already been found (the heart, kidney and bladder probs).

Last friday I went in for a fetal MRI and discovered that she has also experienced some brain damage. The cause is thought to be from her having mini strokes due to blood clotting. It is hard for the doctors to say at this point what this damage effected or what the result will be. Hopefully we will recieve more answers today.

But the decision has been made to have me enduced a month early and so far we are looking at march 19th for delivery date. With Jacobsen's babies thier growth is stunted and with Ava she is barely growing at this point. So there is really no reason to keep her in.  We feel it would be best to get her out and get her some help. 

The doctor's have been awsome as with everyone around us. We appreciate the support and kindess. At this point our hearts are breaking for her and just hope it all turns out ok. If you want some more info check out these websites. the first one is a site put together by those with JS kids and the second is a pamplet the genetic doctor found for me.



We love you all - feel free to give us a call. Love the Rebers