Guess His Birthday!

We are playing a little game.. WHEN WILL THE BABY COME??
Put your guess in the comments and the winner will win a treat!
To be fair, i'm due March 18.
Koy was due Nov 5, his birthday is Oct 21
Jerzi was due June 20, her birthday is June 3
Libbi was due April 13, her birthday is March 20
Happy guessing!
My guess is March 4!
Kurt- March 2
Koy- March 4
Jerzi-February 23
Libbi- February 24

*Only 1 guess per person
**There can be duplicate answers

Look good!

The echo went very well! He said everything looked good so we'll go back in 6 months! YAY! I have much more to post and even some pics but for now i just wanted to quickly let you know how it went :)

Echo tomorrow

Tomorrow is Libbi's echo, it was scheduled for December but she was sick so we rescheduled. We go in at 830, they'll sedate her and it'll probably take about an hour. Then we just wait for her to wake up and head home. Dr. Menon didn't feel it necessary to meet with him after, he will just review it and call me. Honestly the worst part of these is not letting her eat or drink before. She can have normal diet until 3am then just water or juice from 3-7am then nothing after 7am. Should be interesting since she still wakes up for a bottle. I'm hoping for some good luck and little help that she will sleep until 8 when we need to leave! Then she'll only scream for the ride down and not all night long... i think i can handle that. Maybe :)

Should be nothing to worry about, i'm hoping and thinking it'll be a good review and we can hold off on anything for a while.

Stay tuned..

Phew!

Dr Menon called this morning (first thing, at 8am! I can't stress how much i love this man!) He has been in India remember? Well he got back and called to check on Libbi. He thinks with her sats being in the high 70's that we can hold off on any MRI, caths or other testing for now. We will still take her for her sedated echo this month but he thinks she is doing just fine! Phew what a relief!! I was not sure how i was going to handle a new baby PLUS Libbi and her issues. Yet another blessing in my book! So for now... life resumes as normal.. if there is such a thing :)

Insurance gripes

Answer me this.. why in the world would Medicaid ACCEPT Libbi as a disability medicaid recipient (due to her heart condition) and then DENY a cardiac MRI and an o2sat monitor? I don't even get it. They will pay almost $7000 a month for synagis. They will pay if i need to take her in EVERYDAY to get her oxygen tested, but they won't just pay for a silly o2 monitor for us to keep at home? Or a cardiac MRI? Something is seriously messed up here. I really really really wish someone else would accept her so i didn't have to deal with Medicaid. Don't get me wrong, i am grateful we have it, just bugged and confused!!

Also, anyone know how much a cardiac MRI is out of pocket?

2 hours later.. Humbled. Once again.
As i sat here feeling picked on because of insurance, i checked in to see how our buddy Mason did today with his biopsy. Well, he is showing signs of rejection :( They are checking him into PCMC to get some help and i hope and pray it's just a little speed bump in his life. Suddenly, i don't really care about insurance, or medicaid, or money. We will be fine. We are so blessed :)

Bad heart??

This morning at breakfast Koy asked
"Mom, how long will you be at the hospital when you have the baby?"
M: Probably only a day or 2
K: Why was Libbi there so long?
M: Because she has a bad heart.
K: Ya, i don't think she does. She runs around, tackles me, laughs and plays with us.
M: I agree Koy, i don't think she does either :)
What a sweet conversation! I love that boy!

All good!

Ok so there was a little mix up, her old hemotocrit was 53-54%, not 47.8%. So now that its 53.2% he's saying it's about the same so no need for oxygen as of now. We are getting a o2 monitor so we can watch her this week at home, then when we go on Tues to see Dr Menon we will have an accurate number for him. With her ferritin being so low Dr Rose thinks she may need to be on an iron supplement, but said to talk with Dr Menon on Tues and see what he thinks. But for now, nothing but monitoring her o2 sat for the week! NO OXYGEN! Yay!!

**FROM WHAT I UNDERSTAND**with her oxygen being all over the place and not knowing what it was for sure, we did the hemotocrit draw to see if it was going up significantly, if it had, it would mean her sats have been consistently dropping since the last draw, which was last March, because it stayed the same it probably means her oxygen has not been that much lower than normal, we are just getting inaccurate readings for whatever reason. Having the monitor at home will be nice because she will be calm and i can also see where she's at when she's asleep.

Update

(read update in below post to see numbers)
I guess i will wait until morning and hope the phones are working. I'm not sure exactly what the numbers mean, but i know he said if her hemotocrit was above 50% he'd like her on oxygen. Problem is, i need him to call it in, i can't just order it myself. So tonight i will enjoy an oxygen free night, because i fear the next few may be rough. Also, what is her ferritin? I need my expert heart buddies to help me out on that one. It went from 43 to 20.. that seems like a big drop. Should i be worried? I guess the Dr will tell me tomorrow :) Good night.

...Did some research, ferritin is her iron. The article i read says 20 is way too low and that this can cause headaches, dizziness and body aches, as well as fatigue. Now i'm sad :( Poor baby girl, she seems just fine.

Low oxygen/blood work

I'm becoming quite accumstomed to the routine, dr emails, phone calls, lab visit, leaving the room while they strap her down, more dr calls, up the elevator to another department, avoiding the mess of sick people, PARKING, waiting.. you know the drill? Well we're on it again. This time i wonder if i overreacted and could've avoided it all.. i will never know i guess. Libbi is not sick, perfectly healthy in fact. She just looks really blue to me.

On Friday we went in to get her synagis and i asked if we could get a o2 reading, she would not cooperate so i said nevermind i'm sure she's fine. Well by last night (Sunday) she was looking more and more blue, even her fingertips looked blue so instead of dealing with the drama of the ER, i called my friend, Andee, who has a baby very similiar to Libbi, and who has a monitor of her own. I went over and for 10minutes we left it on her foot. She sat quietly and nicely in her car seat while we watched and talked a bit. It never even got to 75, she was between 71-74 most the time. Her heart rate stayed consistent, about 125-130, so i felt this was a very accurate reading. Which is WAY too low. When we went in Dec to Menon, she was 75, and sick, and he was concerned. I knew that below 75 would mean oxygen. I emailed him and got an out of office reply, he's gone til the 17th. So this morning i called Dr. Rose, he asked that i take her in to the lab and get another reading, as well as her hematocrit, hemoglobin and ferritin checked. We headed up to the respiratory department where they put a probe on her forehead to check her oxygen, she was crying, squirming and not cooperating. After, O maybe 2 minutes of it going from 73-81 he says "well looks like she's at 81" I would love to think that, but i think he's wrong. Again, maybe i'm creating a problem where there is none, but it just seemed weird that after only 2 minutes and her not cooperating that he could feel good with that number. Anyway, long story, sorry but i want record of it, i am now waiting for the blood work to come back. If her hematocrit is above 50%, we will put her on oxygen, because it was 49% last March, and if it's higher now it means her o2 saturations have been going down. In the meantime, Dr. Menon emailed me back from INDIA! Yes thats right. He is the greatest i promise! He said to get an appt for next Tues with him. Acutally, here is his email..

Hi Mindi,
I am in India at present and will be back on 14th. I can see her on tuesday since Monday is a holiday.
We will schedule her for a cardiac catheterization next week to see if there is something we can do using catheter based technique to improve her saturation. In the meanwhile it will be good to start her on some oxygen to keep her sats > 75%. Take her to her pediatrician and see what he thinks, if she needs to be seen by a cardiologist sooner than that.
Stacey,
If she needs to be seen early can you ask Dr Mack or Dr Mart to see her for me.
Let me know what you decide.
Thanks,
SM

I'm still uncertain if he wants to do the cath Tues, the MRI and echo Tues or just meet Tues and decide what to do.. i will keep you posted when i know. As for now Dr Rose and I decided we will see what the hemocrit is and then go from there. We will get our own monitor at the very least, so i can watch her from home and while she sleeps, i guess it goes down while sleeping. If we do oxygen, wish us luck, not sure how that's going to fly with lil miss sassy pants :)
I will know later this afternoon of the plan.

In March 2010 her blood work was:
Hematocrit 53-54%
Ferritin 43
Hemoglobin 14.6

Update.. Sooooo.. apparantly Dr Rose's office lost their phone service this afternoon. I called every 20 minutes from 3pm to 530pm. No answering service or nothing, it just rang and rang and rang. Finally i just called up to Mckay Dee's lab and got the results myself.
January 2011
Hematocrit 53.2%
Ferritin 20
Hemoglobin 18.0
(I figure this will be easier to find her old numbers than having Drs go through all her paperwork. They kept asking me what her last hematocrit was and i had no idea. This time i will know)