Friday, February 26, 2010

today's update

as many of you know, yesterday our precious little Zoey had her first surgical procedure (it just amazes me what these little babies have to endure) ... she had a "G-tube" put in! For those that don't know what that is or why - here's a brief explanation: it's a feeding tube inserted through her skin (on her tummy) directly into her stomach, she needed one as a more reliable way to finish her feedings when she doesn't take the full amount from the bottle!

we cuddled, kissed, and cooed as much as we could, until
the nurse got the phone call that they'd be up in 20 minutes to
get her (of course, it was actually more like 45 minutes!)

she was all ready and sound asleep by the time they came up,
thanks to a loud something going off, though, she woke up for her
ride downstairs to the operating room

Gary snapped this right before we said our goodbyes, and
yes - I cried! none of my children have ever had any sort of
surgery and it was hard, even though it was a "simple" procedure

it didn't take near the three hours I was told the day before for her to be all
done and back to her room ... the procedure itself was done a little over an hour
after we left her, but it didn't take that long to do (there was a birthdate
discrepancy - I was in the NICU pumping when the nurse got the call - about
35 minutes after we left her - and it had to be confirmed) We were at lunch
when our pager buzzed, Gary had gone the first time (the birthdate thing) so I went
this time ... the doc said all went well and they were able to do it via just the
small incision! The doc estimated she'd be back to her room in 15 to 20 minutes,
so - we ate our lunch and headed up there - and there was our sweet little

she was on pain meds and very sleepy! we went back later last night to see her again
and we brought the picture sent from Annicka - isn't it sweet (I especially love
the poem: roses are red, violets are blue, sugar is sweet, and so are you ... what a great
big sissy) She was still very sleepy, but it's always good just to see her!

she was a bit red too, from the heated bed! ... and why they left that nose
tube in - we have no clue?!

and this was our princess this morning, they even had her dressed - which
really surprised me! she was still fairly sleepy but did wake up and I got
to hold her and we had quite a nice little visit! she also had a new blanket!!!

so, thank you to all who were in prayer for our Zoey - God kept her safe and guided the surgeon, doctors, etc. and everything went smoothly! We visited her again this afternoon and found out she had eaten! They're starting with 30ml and back on her three hour schedule, then every six hours they up it by 10ml until she's back to the full amount! We were relieved she had eaten, as this morning she was acting quite hungry (oh yes, and yesterday before the surgery she was too -as she hadn't been able to eat since her 5am feed - poor baby) ... maybe now she'll realize how much she wants to eat?! Praise God she's doing great and hopefully will come home within the week!

Wednesday, February 24, 2010

my life (right now) ...

I don't have much to say right now, I'm in a quiet mood ... but I thought I'd take this opportunity to share some photos of what my world looks like now (minus the sweet baby, which you've seen many a photo).

First up, my hotel ...

this is the church next door

the courtyard at the hotel

out walking ...

the hospital is up that street ...

this is what I call a "real" crosswalk!

more walking around ...

the hospital ...

that's about it! Surgery is set for tomorrow. Please be praying about that! They told me today that Zoey's G.I. study revealed no reflux and everything seemed good, she was "borderline" for how her food goes out of her stomach, so if they notice the muscle being especially big - they'll "cut" it to relax it while they're in there! Please pray that they'll be able to accomplish the surgery laproscopically (like I know how to spell THAT!). God bless you all

Monday, February 22, 2010

bye-bye daddy

well, that weekend went fast ... Gary left this afternoon, after giving blood for Zoey for thursday (just in case, but it's not a procedure where there's usually blood loss)! I miss him already, it was kind of nice to not be alone for a few days ... I think I'm officially getting tired of being away from home! I'm really missing my other kiddos and feeling very guilty that I'm not there for them. I managed to get a hotel room (here) for friday through monday, but thursday still hasn't opened up - so please be praying that it will! Also, they're full the 2nd and the 4th ... so, if Zoey doesn't come home next weekend I may need those days to open up as well! Today Zoey had her upper g.i. study done, when we were there this morning "so far" nothing looked unusual ... but they were going to be x-raying her a few more times (I believe) to see that her digestion is all normal, and they are also checking for reflux. The nurse also mentioned that Zoey's little tummy is, well - little! She said she had eaten 20ml before going for the test and her stomach was FULL! So, I'm trying to imagine how it would look with the full feeding of 65ml??? Anyway, that's really the only news at this point! here's a couple pics I snapped while daddy was here, enjoy ...

Thursday, February 18, 2010

two steps forward???

well, that didn't last long! you'll see below what I discovered at my late afternoon visit today, that darn ng tube is back! Apparently there WAS a minimum Zoey needed to eat each day (even though the "first" nurse said there wasn't) and last night's nurse mentioned she was three ounces behind. She still gained, but only 10 grams (about 1/3oz) - which is "ok". When I left this morning they mentioned maybe having to use the tube again, but it was so weird cause at the same time they've been really "encouraging" me to nurse (and I did this morning, she did ok - but I'm not sure how long it kept her satisfied). Last night's nurse also changed to regular formula to fortify (she said the polycose can cause diarrhea and Zoey had pooped three times since she had been on shift, which was less than an hour), but today they were back to polycose. I gotta tell ya, it's so annoying dealing with all the inconsistencies of different nurses - sometimes it seems each nurse just does what they want to do! Since Zoey got to UCLA they eliminated the haberman bottle right away (by the time Gary and I got here that night) and were using a standard nipple - I think slow flow. Then they were using a standard regular flow. Then it switched between the slow and regular. Then the occupational therapist said she really did better with the NUK and that she should use that - that only lasted a day and this morning they were back to the standard regular. Then tonight it was a standard slow flow - UGH!!! That's the main issue at this point for Zoey, the eating/gaining weight! It seems to be the thing that she takes two steps forward then a step (or two) back - it's like a see-saw! In other news, I completely forgot to mention the surprise I found in her diaper on monday ... her belly button stump - lol! Yes, it finally fell off and she has a cute little belly button! She's still just as precious as can be ... there was word of her maybe coming home this weekend, but now with the feeding I just don't know - I'm certainly not counting on it! Keep up the prayers all!

also: just fyi - Zoey is 8lbs 7oz and I did hear that the thyroid came back fine!

my cousins made this - isn't it awesome!
My aunt and cousin (technically it's my cousin's daughter, that's a cousin
right?) came and visited and got to see Zoey - but we didn't get any pics :c
sleeping beauty - yesterday

this morning - sporting the ducky gown from Nana

and this afternoon

Tuesday, February 16, 2010

today's update

not a whole lot new today, BUT ... Zoey is now "ad lib" for feeding! Which means, instead of her having to take in 65 ml every three hours - she now takes what she wants, when she wants ... and they'll see how she does! When I was in there today, they hadn't heard the thyroid results. She still has that darn hyper gag reflex too ... I really hate that! I don't know why, but gagging is just not my thing and even when I'm able to remain calm - deep down it bothers me to see her do that (at least she never actually vomits though, cause that would affect her weight!). So, that's about it for today - I had a good little visit this morning. When I got there the occupational therapist was feeding Zoey (and she'll continue this, to evaluate her - at least on occasion) and she gave me a helpful tip to try to desensitize that hyper gag reflex! We also talked about nursing, but in all honesty - I have no desire to even try at this point. I feel like I should want to or I should feel guilty that I don't want to, but for me right now I like to look at the bottle and know how much she has eaten (and she's still getting the breastmilk, that's what's really important - right?)! After that, I held my little princess - for over an hour! It was quite wonderful, I must say ... and I would have held her longer, but I was getting super hungry! She's so beautiful and so precious and I just know she's perfection!

Monday, February 15, 2010

today's update

just wanted to put a little update! First off, I believe it was Saturday that I noticed a little "bump" (for lack of a better word) on Zoey's head. Many nurses/doctors have felt it and think it's a certain sort of benign tumor (it's common) that sometimes goes away on it's own ... but they've said it's something to keep an eye on and if it grows it will be in the way and then it would need to be removed! I'm praying that it will just go away on it's own!

Zoey is now on vitamins: a multi vitamin, iron, and vitamin D. They're now using polycose to fortify the breastmilk, and have increased the volume but reduced the calories to 22 (and the volume is 65, instead of 60 - which is 2 ounces). Her rash has greatly improved, so they believe that may have been part of the problem (the milk based neosure, though polycose has whey in it). She's still on the lasix, I believe three times a day; as well as the blood pressure medication, also three times I think (and as of the other day her dose had increased again - initially it was .1, then .3 then 1!!!) ... and she's still getting the sodium chloride as well. Due to her still being on the cold side, they're testing her thyroid to see if it's functioning properly - I believe we'll have those results tomorrow?

She's still a bit up and down with her feedings and therefore still has that darn tube in her nose, right now they're main focus is getting her to realize that she wants to eat - lol! I was told today that it's likely she'll go home at that two week point (two weeks of being here) and then come back at two months (age) for an appointment (or appointments) to access her readiness for surgery ... and likely have the surgery right around the two months of age point!

She is so beautiful and it amazes me every time I see her. It's sort of weird though, as I don't feel a huge need to be at the hospital constantly - I guess there's just only so much of doting on a sleeping baby that can be done? Also weird, as much as I miss my other kids - this feels a bit like a much needed get away! Hey, don't judge me - life has been busy and crazy - what can I say?!

blessings to all and keep up the prayers!

Friday, February 12, 2010

Zoey ... you are LIFE!

I just have to share this! I was talking to one of my best friends (love you Les) the other day (the days run together, but I think it was yesterday?) and she said something to me that she's said before, she told me to pray and ask God to give me a word for Zoey. This is something my friend has done for each of her children and she said that it's just such a blessing and that her children beam when she tells them what they "are"! Well, to be honest - I didn't devote much prayer to this yesterday, but at one point it hit me ... and I know it was God!

Years ago we discussed names for our children and Zoey was one of them ... well, then I got pregnant and had a boy ... then again, another boy ... and, as we all know, I got pregnant again and certainly had high hopes that I'd get a girl - "Zoey" was always in the running for a name and once we found out she was a girl we kept going back to it, nothing else really struck us?

... then, I looked up the meaning of the name Zoey: life.

it came at a point when I needed it, I don't even want to put to print the horrible things that the medical professionals "had" to ask me, once it was determined that our little sweetheart had down syndrome and a heart defect ... but let's just say that "life" said it all - she became Zoey the minute I read that word! I believe that Gary and I, through God, always knew we would have our little Zoey ... even if at times we didn't realize it.

So there I was, driving along I believe - in fact, I think it must have been wednesday on the way here to L.A. ... and God gave me the word for Zoey: life! so, my sweet little Zoey, you are life and I can't wait for the day I can speak those words to you and see your adorable little face beam with happiness for the special word God gave you!

here are some pics from our visit tonight!
she's in there - lol

btw - her rash is essentially gone on her neck and does appear
to be improving! they did stop giving her the milk based formula
(once again, it's added to the breastmilk for calories) so who
knows if that's what it was or something else???
but, it's getting better - yay!
oh - AND - check out this little suit they put on her ... when we first
got here on wednesday I couldn't believe it, elephants - my favorite!
how did they know?

miss Tina (another of my best friends) is loving this!

I just gotta say I am LOVING this angle, I need more pics of myself
from this angle - no double chin - it's so awesome!!!