The lottery...

9:20pm

I feel like I won the lottery today... Still mesmerized and with a note of disbelief I am looking at my happy, super hungry baby as the 8th day is passing by since the surgery... She is a gift from God and her speedy recovery after the extensive surgery; smiley face; adorable coos are like winning a million bucks.
Today she has eaten as much as she used to within 2 days! 34 ounces so far and the day is not over yet. We fed her cerial twice today and she tasted some bananna.
Hopefully, Abi will get some rest tonight after very few cat naps during the day today. Last night she woke up only twice, so I think my hope for an interupted sleep for 5 hours is pretty
realistic.

Abi amazes me every day. It's intersting how a barely 5 month-old can impact and change your life.
I couldn't have asked for a more wonderful daughter!




Thank you for your prayers for a quick recovery for Abi...

J.

Morning Apetite

8.04am

When we got home last night Abi ate great and went to bed. She woke up at midnight to eat again. Now she surprised us when she ate 175ml (almost 6oz). That was incredible and it was just a prelude to the next feeding at 5am. Yes, Abi slept another 5 hours and then ate 210ml (7oz) !!!!

Just to make it clear before the surgery she ate about 90ml (2-3oz) per feeding and ones she ate 160ml and we were so happy. It's an almost instant jump from 2-3oz to 6-7oz. In the hospital they said they would be happy if she started with 80ml (almost 3oz) per feeding.

Another great news and the day has just started.




Art


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We are home!!!

10:15pm
We made it in 4 hours, with no stops and Abi sleeping through the whole trip!! How great is that? She drank a bottle just before we hit the road and slept like an angel till we stoped on our driveway! She ate a full meal, chilled with us, auntie Allison and uncle Drew who made dinner for us; took a quick bath, ate MORE, smiled and talked to mommy; took medicine and went to bed!






It is so wonderful to be back home, that to our big surprise was beautifully decorated with flowers, baloon, Christmas accents and a Christmas tree with presents underneath in the leaving room! Fresh food in the fridge just completed the picture.
We are so thankful for our friends who have been supporting us in this difficult time! Your prayer have paid off and resulted in Abi being at home after barely 7 days after the surgery(!) with only 1 medicine, no feeding tube and a huge apetite! Sometimes people need more time to recover from a cold!!
Abi is my hero! Such a brave and strong little girl!!!

THANK YOU AGAIN FOR YOUR PRAYERS!

J.

Packing

9.57am

Yes, you gor that right. We're packing now and leaving the hospital soon.

Abi had another great night. Ate 80ml in the evening. Than we told the nurse we won't wake her up after 3 hours becuase at home in the evening after the bath we don't wake her up. She's on a 3 hour schedule during the day and overnight she wakes up on her own. So she woke up a bit over 4 hours later and ate 95ml. In the morning she had another 135ml and 3 hours later another 130ml. Over 4oz at a time is better than before the surgery.

Now we are ready to leave despite the view out the window.





















Art

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Closer to home

8:45 pm

One step at the time and we are almost home.
It's been a week since we came to the hospital and tomorrow exactly a week since the surgery!
Abi's progress is unbelievable. The doctors and nurses are astonished how fast she has been recovering. She stayed in memory of some of the CICU nurses and doctors who randomly came by to check on Abi.
As previously mentioned, today's focus was on eating. The oxigen levels are great during the day and at night. I'm so happy we insisted on removing the nasal line, especially when she was on no oxigen. No wonder her saturation was lower since she couldn't breathe comfortably. So "sats" aren't the concern anymore!
As to feedings we started great in the morning with 85ml within an hour! The amounts she drank decreased as the day went by. We were told that she needs to drink at least 80ml per 3h to be able to go home without the feeding tube. She was a picky eater prior the surgery and the doctors knew that but still set up pretty high standards. Whatever she left they put through the tube. I think this caused her tummy aches in the morning- poor thing, she spent a couple of hours crying over the rumbling tummy. We requested some gas drops for her. A couple of stinky surprises later, she was all good.
Abi's surgeon visited us today and requested to remove the feeding tube! So we did and hoped for Abi to pick up on ml's. In the afternoon she only ate 30ml (required 80) and fell asleep in my arms-I actually joined her while having guests (sorry S.A.D.)!
We didn't want the tube to come back and we were defermined to meet he "goal" with a significant Abi's help of course. We gave her a bath, massage, put her in her own pj's and gave the bottle with required 80ml.
She exceeded everyone's expectations and ate 90!! We were so proud of her! So we know, if she wants to, she can do it!
Now she is sound asleep, resting to her favorite night music...as we are slowly heading this direction with hopes for coming home TOMORROW (well we'll stay in Atl till the next day- (thank you L&R)!!!!
Thank you all for your continued prayers for Abi and our family!









J.

9 Hours

7.03am

9 hours

First night in the stepdown was almost like coming back home. We tried to recreate the home rutine. We gave her a bath fed her the bottle - she took 50 ml !!!! and then fell asleep. She slept for 9 hours !!!

We had two goals to meet. Eating from the bottle and keeping blood saturation at the right levels during sleep. Abi's blood saturation was fine during the day when she was awake but when she was relaxed and asleep it used to drop so she still needed some air flow through the nasal tubes.

After eating the 50ml and falling asleep she was not really willing to eat more around midnight so we dcided she would be getting food through the NG tube over night and we will get back to bottle feeilding in the morning.

We focused on the other goal - blood saturation. We were watching Abi for couple hours trying to adjust her possition to find the optimal one with little success. Finally we decided to pull out the nasal tube since the air flow was turned off and it was just stuck in her nose blocking the air flow. Once we did that her saturation was high in norm ALL NIGHT!!!!

Seems like she doesn't need air flow to keep great saturation.

And now when I'm done with typing it we just finished 85ml bottle!!!!! And Asia got 2 smiles ;-)

Art


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This Afternoon

1.22pm

We've been with Abi since about 11am. When we showed up she was still asleep after Versed which she was given to remove the central line from her neck.

Let me stess this out that this is not a complaint, just sharing with you all what we have to deal with in addition to the surgery etc.

When we showed up we asked the new day nurse the same questions we always asked any other nurse. So far Paricia, Sarah, Niki, Amanda, Jacquelin, Krissy were amazing. They knew everything and paid attention to everything. Today's nurse answer to every question was: I don't know. If a doctor asks I will print it out for him. Hehe, awesome. All of you who know me can imagine what happened next. I requested to speak with the doctor supervising her. 20 minutes later we got all the answers from the doctor.

Now we're waiting to be able to move to the stepdown unit. They have already got the room for Abi and we are just waiting for them to get it ready and for the team of people involved in moving her to be ready as well. Once we're out of here we will not have to leave Abi even for a moment.

We will also try bottle feeding her today again. I bet it will go great!!!

And the below picture: my beautiful bride and our little one chilling




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