the princess:

just thought I'd give a little update AND brag on little Zoey! She is so amazing ... she just finished her bottle! I know what you're thinking, right - she's done that before, many times - and it's great. BUT this time it was what I think I'll call her "gray" bottle ... she got all her morning meds/vitamins via her bottle!!! That's a first (ok, it's a second - she did it yesterday for daddy too)! We've always relied on the g-tube for giving the meds/vitamins because if we put it directly in her mouth she just gags and spits it out, and while we could have been putting them in her milk all along I chose not to because I wondered how yucky it made the milk taste ... but I'm ready to get rid of that tube, so now I'm going to start pushing the issue! I call it "gray" because that's what it is - gray milk (sometimes greenish gray) ... it's the combo of the vitamins and iron that make it look so awful, but she drank it down - I'm so proud! Afterward we had a little chat and she thought I was very amusing ...

one week ago ...

it's hard for me to even see this photo, but this is our Zoey one week ago ...



what a difference a week makes! She's a new girl! We see many improvements in Zoey since bringing her home: her gagging is gone (amen), her sweating is gone (she still gets a little clammy, but I was amazed about a half hour after getting home that first day when I remembered/realized - she wasn't soaked when I got her out of her carseat), her appetite seems quite good and she's eating well from the bottle ... the only "negative" is that she's not sleeping near as much and isn't so content as she used to be (in fact, right now she's having a total screaming fit - it's so frustrating not knowing what's wrong?!). At the hospital they stopped most of the meds, the vitamins, and the fortifying of her milk ... so far we haven't added those things back in. Her cardiologist said the lasix can go down to just once a day now, so at this point that's all she has (I didn't do miralax today as she was seeming to be doing quite well in the poo department - lol)! so, here she is today...

update:

no pics tonight, sorry I'm getting tired already! Zoey's oxygen tube was gone this morning when we went to see her, as were the IVs! She's now on "oral" lasix (yesterday she had to have some potassium, think I forget to write that) and that's it for meds (that I know of, but maybe still pepcid?). She was having some fussy times today, the nurse said that the passy worked for her ... it's so sad to see her upset, she was sound asleep when I went in this afternoon and out of nowhere she woke up crying and continued to cry - and cry hard, which is not like her! The nurse asked if she gets like that at home, NO - so she gave her some tylenol ... I got her to take the passy and she was finally ok! She was talking at me and smiling at me (ok - first she was smiling at her mouse and elephant - lol) again this afternoon, such joy! Still on track for going home tomorrow, even though she's only poo-ed once since the 19th (they gave her a glycerin chip last night, but she didn't "go" until this morning). Her pee-ing is good, but of course the lasix is helping that (but that it's improving with lasix dosage going down is still good). I'm excited to have her home, just a bit nervous because of the fussing I've seen - no fun :c The nurse did say she slept through the night, though - so hopefully that hasn't been disrupted and she'll continue! I still haven't held her, I wanted to - but I haven't been shown how and didn't want to search the nurse down to ask! Oh my little princess, this soon shall be "over" and we'll move on ...

today ...

let's see if I can remember everything from today! Throughout the course of the day Zoey made a lot of progress ... her chest tubes were removed, as were her pacer wires, due to fluid on the lungs they've added a second diuretic and were putting the lasix on a drip (she still has her IVs), she's also still getting pain medication (oxycotine or oxycodone???). She still has her little oxygen tube at her nose, but half the time it's out (and in fact, when she was awake she kept pulling it out -lol). That's right, you heard correctly, we finally got to see her really awake tonight! AND Gary got to hold her (I was nervous about feeding her and then we had to go - so poor mama didn't get to hold her) and feed her, since we were there for her 5pm feed ... she sucked down 60ml in no time and the nurse was going to give her 30ml more!

I'm sure some people will think bad of this, but I've enjoyed a couple trips to the mall. Oh how I've longed to shop at a "real" mall - I'm such a mall girl! So, when I found out there was a mall just two miles away ... and that it had almost all of "my" stores, I asked Gary if I could go. There's a game store, so it didn't take too much convincing and we all went last night. We shopped and Liam played at the play area and we ate dinner ... then today I went back again and got to do some relaxing (aka: take my time) shopping! I found lots of cute stuff for the kids - some was GREAT deals and a couple things were splurges!

So, that's the update. It's a good day and they tell us Zoey is doing great! I certainly don't want to rush her home, but I look forward to it! It will be nice to be back home and be done with hospital stays! Hopefully tomorrow I can hold my little princess. Keep up the prayers all, we need quick and complete healing for her and safe travels and all that! God bless you all.

I wasn't gonna mess with tubes, but I had to get a pic
with a bow!!!

Liam is doing great too, he really does keep himself fairly
entertained and - though he's had his moments - he's
doing awesome for his age!

some catching up ...

let me start by saying that I'm much too tired to be bothered with saying too much - lol! I will give a quick update on our little princess though: we went and visited her three times today! Her central lines were removed over the course of a few hours. She is now on lasix four times a day. Her other lines, that drain blood from the lungs, are still draining a decent amount ... so, they're not likely to come out tomorrow as originally thought. When we saw her this morning, and again after we ate lunch - she was fussy and apparently in pain. The nurse gave her some tylenol, it didn't make a difference so she gave her oxycotin ... and again another dose a few hours later. Tonight when we visited she was asleep and peaceful, praise Jesus. They started some feeds too! The first was just pedialyte, to see if she tolerated it. The nurse did it through her g-tube as she had no interest in the bottle. Now they've moved onto breastmilk, starting with 30ml and then 45ml and will work their way up to 90ml! Her urine catheter is now out as well. She can't be held until all those "lines" are out, so I just hold her hand and touch her so she knows I'm there - oh what a sweet thing she is. She was in a regular big hospital bed, but when we returned after lunch they had switched her to a crib! We went to the gift shop today and bought a little goody for each of the kiddos - Liam's was a huge balloon and for Zoey I chose a big butterfly that can hand on her bed, and later - in her room! Annicka got earrings (shh, her and Jericho don't know yet) and for Jericho a watch! Then, this evening, we went to a mall - a REAL mall - I picked up some clothes for all the kiddos and we ate dinner. Liam got to play in the play area, oh the fun he had - he was quite unhappy to leave! After that we returned to see Zoey again, and as I said - she was peaceful. She even opened her eyes for just a few seconds! I'm sure I'm forgetting bits & pieces -but like I said, I'm tired! So, I'll leave you with some photo catch up!

Sunday night I walked around the house and captured what everyone was up to (Zoey was sleeping & Gary was with Liam)






Monday I decided to get Jericho from preschool early and go pick up special lunch - happy meals! I had completely forgotten that his and Annicka's carseats had already been moved to the car - so, I had no other choice but to put him in Liam's carseat! Of course, he's over the weight limit - but for height I think he was just barely over the "1 inch rule"!!! He actually liked it quite well and, fyi, was quite comfortable!

The van is all packed and we're ready to go!


I love how excited kids are to be at a hotel, of course I think he was just excited to be able to run around - lol!
Zoey enjoyed some swinging - oh how she loves to swing!
It took him a bit to fall asleep in a new place/bed (I forgot to do my normal routine of having him sleep in the pack 'n play at home for a few nights) ... but, finally, he settled and slept fine!
Tuesday - surgery day - they have free breakfast here, so we enjoy bringing it to our room to eat!
I've shared photos of Zoey, but here's Liam during our three hours in pre-op!


... and after they took Zoey and we ate lunch!
Today:

our little princess ...

I'm sitting here, just amazed at the day! We got to see our little princess, after over seven hours apart ... I put my finger in her hand and began to cry, I put my head on her bed and let it out - and then I was good again. It's one of those days that feels like it was so long, it couldn't have been merely a single day. I can't believe that this morning my little baby had a broken heart, but tonight as she peacefully sleeps in a hospital room - her heart has been made new! Zoey's nurse said she is doing amazingly well, she said they've been seeing babies "like this" go home after just three days! God is so good. He kept Zoey safe in His hands and He worked through those doctors hands! Zoey's surgery was officially "done" a little after 7pm, we saw her at about 8pm ... after a minute or two of observing her, Liam declared "Zoey mess"! It made us all laugh! It is, indeed, hard to look at her with all that "stuff" ... you just don't truly understand until it's real life and it's your baby!

This morning my little angel looked up at me, cooed and smiled as I washed her hair in preparation for her day ...
in pre-op she was so content! she lay there quite happy, just kicking and reaching. daddy held her and she gave the biggest smiles ... later he held her again and she napped. she was sucking an imaginary bottle - lol, that's seriously how it looked - and even sucked her binky. then, the anesthesiologist came and carried our little baby away to the operating room ...




and tonight, this is how our sweet and precious baby girl looks. she is on pain medication, antibiotics, and will have pepcid - as is standard I learned. they will continue the pain medication through the night so she will sleep. her little mouse is back with her again, as is the special blanket Nana bought (it's a blanket I've drooled over since I was pregnant, I just love it) - and she's all cozy and comfy.