Wednesday, August 02, 2006

Good and bad news

In a few days (on 8/4) Kaitlyn will be officially 10 months old or 7 months adjusted.

I've been so busy the last few days, with work and of course medical's a quick update on Miss Kaitlyn - some good and bad news.

1. Kaitlyn started rolling over!!!!! Now, babies that are 4-5 months should be rolling over, and Kaitlyn just learned yesterday. But she IS a preemie and we knew she'd be delayed - we are ecstatic that she's figured out how to roll, now the problem is that she no longer likes to lie on her belly at all, she rolls right off her belly to her back. She can only roll to one side - but it's so cute to watch her go!!!

2. Kaitlyn seems to have found a "voice" - Now, before you get too excited.....this isn't a "voice" like you'd expect a baby to have. Her vocal chord is still paralyzed. The noise she is making is like a sickly quacky duck noise...I'll do my best to get it on video for you all to "enjoy". This noise she makes is a bit "disturbing" so that if strangers were to hear they would say or think, "wow, what's up with that baby?" That already happened the other night - I guess I have to get used to it. I however think her "voice" is music to my ears! It's so wonderful to hear her make some noise!! I've been waiting a LONG time.

4. Due to the amazing generosity of our family/friends, we now have a LOT more breast milk. So much so that today I switched her back to almost entirely breast milk, and as soon as we switched back her vomiting seemed to decrease. Good thing, as the last few days of vomiting have been HORRIBLE. We’ll see what the next few days look like. I try not to get too excited over less vomit anymore, as it always seems to be followed by more vomit.

Thank you again to:

Elissa – Brian’s sister who sent us maybe 700 ounces of milk!!! Her daughter (Kaitlyn’s beautiful cousin Stella and my niece is just over 3 months old now - they live in CT).

Thank you MacKenzie – boy did we have some problems getting her breast milk. Isn’t FedEx supposed to be the most dependable no matter what – well, on this EXTREMELY important shipment of frozen breast milk, Fed Ex “forgot” to get the package on the outgoing plane from Texas, so instead of getting to me within about 10 hours, instead it was well over 30 hours. Sadly some of it did defrost, but not entirely, and from what I understand if there are any ice crystals in the milk, it’s still ok to refreeze. None of it had completely thawed. MacKenze sent us about 300 ounces of milk from Texas.

Thank you Lisa – Lisa lives locally by me so we didn’t have to deal with shipping – Lisa has given birth to 2 preemies and is so amazing to give us her precious stash as she’s said she’d keep pumping for her son…

I’m SOOOOO incredibly touched by the gifts of this liquid gold for Kaitlyn. My words really can’t express enough how touched I am by this. MacKenzie was a TOTAL stranger to us, introduced by another NICU mom, and I had only recently met Lisa. Elissa had to go back to work and is pumping while she’s driving to and from her job (now she did get that hint from pumping and driving from me, as I used to do that all the time – it was a lifesaver!) Now these amazing women will truly be a part forever more of miss Kaitlyn.

5. Now for the bad news. A few days ago, and we confirmed it today, Kaitlyn has started having "coffee grind emesis". What is that you may ask? Well, when a person has an upper GI bleed (or stomach bleed) it comes out as vomit (emesis) that looks like it has coffee grinds in it. So yes, Kaitlyn is vomiting blood. This isn't good obviously. So today I ran around calling her doctors and getting blood tests. This was her first blood test since she left the NICU, which wasn't very pleasant for either of us (Kaitlyn or her mom), but she did really well. I ended up taking her to the hospital as they have better folks there to draw an infants blood. (This was on fantastic advice by Kaitlyn's doctor who arranged it for us). Have I mentioned again how much I love Kaitlyn’s Pediatrician?

The blood work was to check to see if Kaitlyn was anemic, which meant that she was likely bleeding a lot – good news is that her blood looked GREAT according to her doc, and for us to watch and see what happens this week. The GI doc is hoping that it’s just irritation caused from her GI feeding button. But because her blood levels looked so good (not anemic), they weren’t too concerned at this point. If it continues for another week, we’ll get another blood test and compare, then the next option would be a scope down to her stomach – obviously no fun at all. So we are going to be in a waiting mode.

Tomorrow is Kaitlyn’ 6 month NICU follow up developmental appointment – thank goodness she’s learned to roll-over before the appointment!!!

It is now after 1am, so I’m going to bed!!


Tonya said...

That is great the Kaitlyn has found her voice :) It would be great if you could get it on video.

How wonderful the people that have sent you breastmilk.. There are still good people out there and that just proves it!!

Glad to hear her vomiting isnt as bad since you started her on all BM again.. I really hope it continues to improve.

Glad the blood tests went good :) Hopefully it is just irritation and will let up!!

Penni said...

Hi Liz, It is great that Kaitlyn rolled over, big big congrats to her and her mommy and daddy.

I live in CT and was wondering where your sister lives. CT is not that big.

Great news again.

Michelle flannagan said...

Liz- we had episodes of the coffee grounds too. We could always tell when it was coming, it has a very distinctive smell. It usually happened with viral infections.
The feeding tube was a Godsend because we could keep Anna hydrated mostly by tube since she refused all oral feeds when she was sick, since she had a Jtube and the feedings bypassed her stomach they would usually stay down. Hopefully Miss Kaitlyn doesn't have too many of those episodes, it is scary and not at all a normal vomiting.

Great news on her rolling over, that awesome, she'll get the hang of it. She may never love to be on her belly, Anna still resists it to this day, at 4 and 1/2. Anna also never crawled, she scooted on her butt.

Take Care, Michelle

Allison said...

Liz -

You continue to amaze me. I can't wait to hear Kaitlyn.

I now only wish I had pumped longer so I too would have a shipment for you!

Maggie said...

Hooray for Kaitlyn for rolling over! Sarah was 8 months adjusted when she did that! We seemed to struggle with the head holding up, rolling and sitting milestones but then she made up for lost time. Maybe Kaitlyn will do the same!

Hoping that her GI irritation gets better real soon!

Danielle Elgin said...

Hi Liz~
You are going through so many things I went through with my first son, who was born in 05. Just keep your chin up, she will improve...a lot of it sucks for a while!
(especially the vomit!) :)
Take care!

Momma Monkey said...

I've been thinking about you and wondering how your little one is !!

I was 'told' by my OB that I would be having a amnio to check for something or other, and I immediatly thought about you and flat out REFUSED. My ultrasound the next week proved I wouldn't have needed it, but thanks to you and your amazing strength I felt confident enough not to second guess myself.

Hope all is well !!

Laurie said...

Hi! I found your site through Tanner and Morgan's site.

Hoping that Kaitlyn's GI bleed is just an irritation. My son had the same liver disease that Tanner had, so I'm familiar with the "Coffee ground emesis"...wish I wasn't.

I'll be back visiting!

Jenny said...

here is a link to a preemie who lost his voice. he got it back and is now a strong talker.