1 Month

Ansley is 1 month old today!

She had her first Doctor's appointment on Tuesday and she had gained more weight (which was good, but not as much as they wanted). She was averaging about 17 grams a week and they want her to be gaining 20-30 grams a week. So they made appointments for me to come in for weekly weigh ins to monitor her progress. I went back in on Friday for our "weigh in" appointment and she had gained 3.5 oz.!!!! (which averages to 32 grams a week) We were so excited and no more weigh ins, just regular dr. appointments for us:) I also have been reading up very thoroughly on the booklet the speech pathologist gave me to make sure that Ansley's development is on track. So far she is right on target!!!!!

Being a big sister has been so good for Avery!

Just a couple things that have made us laugh or surprised us:

Anytime Ansley cries Avery will say to me, "Mom, make her not be sad!"

Today when Ansley was crying in the car, she told me the same thing and then I looked back and she was trying to give Ansley the pacifier. When Avery gave up on trying that she covered up her ears. :)

When we went to Ansley's Dr. appointment Avery made sure to tell the Doctor that Ansley was just visiting here and she was coming home with us! Today as Grandma was getting ready to leave, she was holding Ansley. Avery strictly told Grandma that she could not have Ansley because she is to stay at our house! Avery is very protective of her and always has to know where she is and what she is doing. It is so sweet!

HOME SWEET HOME

Happy 3 weeks Ansley! I can't put into words how nice it feels to be writing this posting from OUR HOME with Ansley sitting beside me hiccuping while Joey is helping Avery get ready for bed. We got home from the hospital a few hours ago and could not feel more blessed and grateful for so much. We can't believe that just 3 weeks ago our baby went from this....

to this: Isn't it AMAZING?!?! This is nothing short of a miracle! As of Sunday all tubes were taken away and the only cords connected to Ansley were monitoring her vital signs.

After we were able to hold her last week, we then started to work on her eating without the feeding tube. She did rather well considering all she had been through, but it was still a process. I really wanted to nurse her although I thought it would take a little longer than if she just used the bottle. The first few days were slow and a little frustrating but by Sunday she had gotten the hang of it. They gave this to me on Sunday and we knew it could only mean one thing... and then on Monday as the Doctors were doing rounds and came to meet with us, they used the "H" word (home, and they don't use this word unless its for sure). We were very excited!!!

During the whole feeding process I would sleep in the waiting area until the nurse would call for me to feed her. I think that got old fast for both the nurse and myself. They ended up getting us a room and I boarded at the hospital with Ansley from Sunday until today. Although Ansley was eating well on her own she was not gaining any weight. In fact she was losing weight. The Doctors did not want to send her home until she could show them she could gain weight. This morning she gained weight!!! When it came time to get things ready to go home we had so many mixed emotions-- we realized we had gotten attached to this place! We were always surrounded by the most incredible staff from the front greeters at the hospital, to the NICU front desk employees, other parents of babies in the NICU and of course the AWESOME Doctors and Nurses. We got pictures with a few of our many favorites:

Dr. Peeples (pic below) was at UAMS when I delivered and helped with Ansley, then worked a rotation over in the Neonatology Department at ACH when we were there. She was with us through it all and we absolutely love her! Dr. Chandler (I didn't get a picture of her unfortunately) was also with Dr. Peeples and was the Dr. who resuscitated Ansley. When I met her I could not keep from hugging her! She told me that the stars were all lined in my favor that night, the fact that my placenta did not rupture until I was at the hospital, that my water had broken to initially get me to the hospital, and that there was maconium present so that they were able to have the pediatricians there after delivery, were just a few of the many miracles that got Ansley to where she is now. All of this does not even do it justice to how AMAZING they are!!!

Let me set the stage for you, in the NICU here, if I saw correctly there is somewhere around 60-80 babies, and there is 1 doctor and anywhere from 1-3 Fellows/Residents. Sometime in the morning the group of them, including a nurse practitioner, do their "rounds", where they go around to each baby and review everything and make any necessary changes or adjustments, and then the nurses are responsible for carrying the orders out.

So when we show up, unless we are there when they do their rounds through our pod, then all we usually see is the nurse, unless we ask them to call the doctor over for us. However, we feel like we got special treatment, and had a special connection with Dr. Peeples, because it just so happend that her rotation changed from UAMS after the delivery, to ACH NICU! Also, The day of the delivery (delivery was 12:50 AM, this was around 12 PM) Joey saw her in the main entrance to the Hospital and she stopped to talk with him about everything. She was also the Dr. that came and got Joey right after the delivery and brought him back to see Ansley and explain everything that happened, and everything that was going on, and everything they were doing. Anyways, so all that being said every time we would show up to the hospital (which was multiple times per day) Dr. Peeples would come to the bedside to check on us, and explain any new updates or plans. She was and is absolutely phenomenal! Does not get any better than her!

Ansley and Dr. Irby with my tired self and Avery

She was also fabulous and the one who told me we were going home!!!

Our Primary Care Nurse Brieanna (Avery loved her and she was so patient with Avery that it made our trips to the hospital a lot less stressful! She set up a little play station/desk for Avery and made it so nice and cute for her!) Just being around her and hearing her talk about her job, you are able to feel the love she has for the babies she cares for.

Nurse Judy (she was with us through the head cooling and always came around to check on Ansley even if she wasn't our nurse for the day)

Nurse Heather was also with Ansley frequently and she was Awesome! These are only a few of the AMAZING staff that helped contribute in Ansley's miraculous recovery! Not only do we feel fortunate that we were able to bring our Ansley home but the short amount of time that she was able to recover seems incomprehensible! The intricate workings of the human body are evidence of an all knowing Heavenly Father; this combined with his tender mercies, and trained Doctors and nurses made it so we get to have our Ansley home with us! We will forever be grateful!

Ansley's cart all decorated

Avery would watch the nurses take care of Ansley and one of the times we were leaving the house she had her dr. kit in hand and told us she was going to help baby Ansley feel better too! She was so excited to help and show Nurse Brieanna she had a stethoscope too; we could not object:)

She already gets lots of SISTERLY LOVE

Even if she may not be too thrilled about it...

Avery is always concerned about where and how she is; it is so sweet!

One of our cuddle sessions after we could hold her!

And Cuddle time with Daddy

This sign is above the main entrance and it was just one of those small and simple things that brought comfort to us daily!

These two pictures of the girls sleeping I took while Joey went to get the car seat to have the tech inspect it. I think we are all wore out!

Our Girls

As I mentioned before, leaving the NICU was harder than I thought it would be. It was nice those last few nights to have the monitor constantly checking Ansley's vitals. If she slept for longer than I expected I could look up at the screen and make sure all the numbers were where they are supposed to be and feel comforted.

Also, our thoughts and prayers go out to the families we met whose babies are still in the NICU. I could not walk past a station with a baby on machines like what Ansley was on without getting emotional and hoping for a positive outcome for them as well! Thanks again for all your thoughts and prayers through out this time of difficulty. We will never be able to express our appreciation.

Ether 6:9

"...he did thank and praise the Lord all the day long; and when the night came, they did not cease to praise the Lord."

What a Day!

Joey and I just recently left the hospital and today has been one of the best days EVER! We walked into the NICU just like normal, washed our hands and put on our gowns to head back to Pod 2. This time as we walked up to Ansley's little station it looked a lot less busy. The Nitric Oxide machine is gone (they took that away yesterday and were able to do all her testing) and as of today she is completely off the ventilator. The huge tube is no longer down her throat and she looks so much more comfortable. Joey, Avery and I all sat around her like normal and were talking to her. Not but a few minutes later we were all startled as she let out a little cry. It was the first time we have heard her make any kind of noise and we were all so excited!!! Then the nurse brought an outfit over, let me change her diaper and put the outfit on her. Then yes, we got to do what we've been wanting to do for the past 2 weeks... We got to hold her!!!!!! I'm thinking as I hold her - do I have to share, I have two weeks worth of holding to get in!... but I know how excited Joey was to hold her too; I was grateful he let me go first:)

The doctor then came over to Ansley's station and gave us the MIRACULOUS results and we feel so blessed and know it is due to our Heavenly Father and all the thoughts, love, support and prayers of each of you!

Now for the test results:

MRI - They told us her brain looked NORMAL with the exception of a thrombus on the right side of the brain. A thrombus is a blood clot, but something the doctor said should heal/dissolve on its own and not a concern!

The Renal Ultrasound showed NORMAL kidneys and her creatinine levels are now where they are supposed to be! I was thinking back to a week ago when her levels were 3 times what they were supposed to be and how Joey and I were mentally preparing ourselves for the possibility of dialysis. I can't explain how grateful we both were to hear this!!!

She is completely off of all blood pressure medications and due to all this exciting news Joey and I forgot to ask about the Pulmonary Hypertension...

They started feeding her my breast milk yesterday. They started her out at 9 mls(which is not much, but still something); she did so well that they increased it to 20 mls today! They told me that tomorrow we can introduce her to mommy feeding:)

Our first family picture

Avery asked the doctor when Baby Ansley can come to our home and he told her that if things keep going well, she will be home this month!!!! WHAT GREAT NEWS!

This pic is from a couple days ago, the nurse had her all dolled up when we came in, she looked like a little Anne Geddes baby! I can't tell you how much we love her and how blessed we feel!!!

Thought I'd share my favorite quote and scripture that has kept me going these past 2 weeks:

"Keep the faith; it pays such great dividends!" -Marjorie Hinckley

They that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary; and they shall walk and not faint. Isaiah 40:31

(From her book titled "Small and Simple Things")

Ansley Update II

Sorry it has been so long since we have updated Ansley's status. However, we never really got any definitive results from her testing. The echocardiogram still showed the pulmonary hypertension, the EEG showed no seizure activity (although she is on anti-seizure medicine, and probably will be for the first 6 months). The more conclusive test is the MRI, however they will not be able to do that test until she is off of the nitric oxide. It is not a big deal, the MRI will not change any treatment it is more just for knowing.

Monday the doctors had a nephrologist (kidney specialist) come and meet Ansley and start to get involved because she started to have blood and blood clots in her urine. He came and talked to Rachel and I, and he explained that she was/is experiencing kidney failure even though she was producing more urine than the catheter could handle (they had to remove the catheter). He was also saying that they would be monitoring her kreatin levels in her blood twice a day to make sure that they dont get to lethal levels. A normal baby has levels around 0.5, but anything under 1 is ok. Her levels on monday were at 3.4. He said that they are going to try to wait it out and try to let her body repair its self and start functioning on their own. That is the best case senario, worst case senario is that they have to put a tube in her side so that she can come in for long term dialysis for at least 2 years until her body is big and strong enough to handle a kidney transplant.

Tuesday morning her kreatin levels had dropped to 3.2, and by tuesday evening hey had dropped to 3.1. Not huge improvements but at least not any higher. Wednesday morning down to 3.0, and the biggest improvement was last night they had dropped to 2.5. Still more than two and a half times normal but definitely a downward trend. Also, there is still blood in her urine but at least there have been no more clots.

They have been weaning her oxygen, and said that the magic number is 60% oxygen that they want to get to in order to be able to start weaning the nitric oxide. As of last night she was at 60%, so we have to hope she can maintain that, we will see when we go in today.

The blood pressure medicines have been weaned, one completely off and the other one down to a rate of 10 from 15.

Rachel SOOOO excited she gets to help bathe Ansley and change her diaper

Avery reading Ansley her favorite book, Brown Bear

Thoughts Honesty & Gratitude

So a friend of mine made a blog post a couple weeks ago titled HONESTY and told of some happenings that took place in her home even though it wasn't the most happy and "picture perfect family" posting. I really liked the post because it was just little sibling disputes that are inevitable in every home but I loved how she told the story honestly because we all can relate.

I give you this precursor because this is going to be my honesty blog posting.

I'm sitting here awake at 2 am thinking back to 2 weeks ago when I was mentally preparing myself to be up with a baby every 3 hours. Instead I'm up every 3 hours with my yellow medela breast pump and hoping this milk will get to be used sooner rather than later. Ansley is still receiving all her nutrients through an IV and will not be able to use a feeding tube for at least another 5 days:( All the tests excluding the MRI (it will have to wait until she comes off one of the machines she's on) were ran today and we receive the results in the morning (maybe this is why I can't sleep). I'll have Joey post the results tomorrow. (or I mean later today)
I was also thinking back to the times I complained of pregnancy and the difficulty in that first month being home with a newborn baby. I think the Lord is teaching me some valuable lessons and I'll think before I do much more complaining. Here are some of the things I have been grateful for that I never imagined would mean so much before-

-the sound of a baby crying
- my baby's eyes being open
-wet diapers (I get to give Ansley a bath and change her diaper tomorrow & I'm so excited!!!)
(this is her favorite position, the nurses said they turned her over like this and she was just a snoozin'!)

Also, as much as I know that everything these past few days has happened for a reason and God has a plan I have allowed for thoughts like these:
-because of MY body's malfunction, my baby girl is hooked up to what seems like a million tubes and in the NICU
-if the baby would have come sooner maybe my placenta would not have tried to detach from the uterus
-was there something I did during pregnancy that made this malfunction happen?!

I know again the Lord is strengthening me and teaching me to substitute these negative thoughts with these:
-the staff at UAMS at the time I came into the hospital could not have been more fabulous and better prepared for the events that occurred.
- Arkansas Children's Hospital is the leading hospital in the country with the treatment and knowledge of the cooling cap (that Ansley needed)
- I am fortunate that I was at the hospital when my placenta detached from the uterus or I may not even have our little Ansley here right now.
- I am grateful I was given strength to prove I was able (walk and get around well after my cesarean) to be discharged from the hospital early to be with my family.

As much as I am trying to keep an optimistic attitude I thought I'd be honest and sort through some things while I am unable to sleep. Today was hard because I watched a premie come into the hospital last night and get stationed across from Ansley. The baby weighed 1.5 lbs. The mom came in today and as I saw her holding her baby tears just started falling down my face. I was not envious of this mother, but I thought-- this baby just came in last night and mine has been in here 6 days and I still can't hold her! I was glad the mom was able to hold her baby, I don't wish this on anyone. I just longed to hold Ansley like she got to hold hers. As I was watching this I had little Ansley's fingers around my index finger and she gave it a little squeeze. It was small and simple but helped me snap out of it and I know I will eventually get to hold her I just need to be patient.
I think this is my favorite picture EVER! My 3 FAVORITES!!! I love them!

In times like these I had a relief society president in my BYU ward advise us to focus on all the things we are be grateful for. I don't think I've ever felt so grateful in my life as I have these last 6 days. (Isn't funny how our feelings can range so completely opposite on the spectrum when events like these happen?!) I will never be able to fully show how grateful I am for the love and support me and my family have received. I have felt your love and continue to because of your prayers! I'll make a list so I can visually see how blessed I am and how much our Heavenly Father cares for us and sends his earthly angels to us in times of need:
1. This last Sunday I received emails that 5 different wards (including
our new one here that has taken us in so quickly with open arms)
included us in their fasts.
2. Comments, Emails, Phone Calls and texts from family and friends
expressing love and concern. They always come at the best times!
3. Messages I have received from people I do not even know but took
time to share a similar experience and that they care and are praying
4. Help with Avery so Joey and I are able to go to the hospital to meet
with doctors.
5. Family (near and far) that have come to help!!!
6. The yummy Dinners that have been brought by (not a day has gone
by that a dinner has not been brought in)
7. Gifts that have shown up at the hospital from family, friends and
anonymous givers (if you were one of the "unknown gift givers"
thank-you) I went down to the gift shop to see if a mistake was made
and they left off the from, the lady said it was meant to be unknown
so thank you... I feel bad not making a thank you card for it.
8. Packages and cards that have been sent in the mail.
9. People who have called or emailed to tell us they put Ansley's name on the temple prayer roll.

10. Caring and Trained Nurses and Doctors

11. Joey (I couldn't ask for a better husband, he is the BEST) and Avery (I am probably driving Avery nuts with all the hugs and kisses I constantly want to give her)

12. Visitors and many many more things I am sure I have left out

Every bit of it has made us smile and been a comfort! I am so so GRATEFUL for EVERYTHING and thank you, thank you, thank you to ALL! I think now I'll sleep better...