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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Double Switch Surgery - Part 2

Double Switch Surgery - Part 1

Policy sucks

7:25am


Shift change. A few moments ago, we left Abi alert and confused, yet calm. When we got there to see her this morning she had already been awake. She would complain from time to time with her weak little voice. I feel like there is nothing that I can do to comfort her. We kiss her, talk to her but can't pick her up and cuddle. She is patiently bearing with all the inconvenience and unknown place and people, but it's obvious she's fed up with this place. We can't even be with her during the shift change when the night nurse is giving the report to the new one. They are talking about MY baby! What's the reason for kicking me out when there are no other patients around and hear other patient's reports?
I feel uneasy when I have to leave Abi when she's awake trying to figure out where she's at. It was much easier when she was sleeping, oblivious to the surrounding.
We won't be able to see her until at least 10:30-11:00 am. That's an awfully long time for the baby in the foreign environment not to see her parents.

We tried to offer her a paci but she would just lick it at best. We will keep trying to offer it, so maybe she will eventually start sucking. We need to get rid of that tube as soon as possible..

It's going to be long 4 hours....

j.

6.34

6.34am

Abi slept about 6-7 hours straight. She looks much better this morning. She was fussing a bit when we came; I guess She's just fed up with this place and wants to go home. I know we do.

She had PVC (Premature Ventricle Contractions) going on several times a minute over about 3-4 hours so they increased the air flow a bit since this could be caused by not having enough oxygen reserve. Quite normal after this complex surgery. They have also increased the amount of food she's getting to 15 ml an hour.

The plan is they will discharge her from CICU today! Next she needs to start eating and retaining the food. This is our next goal!





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