Mckinley pics/heart update

As a heart update: About a week ago, Mckinley had another echo. She is older now and wasn't thrilled to have the u/s machine on her chest but they let me hold her and she survived, with a few tears and and a very sad lower lip :(. But all is good because her heart is looking good! Her vessels are growing, no scar tissue buildup, and she is handling not having the pulmonary valve great! We are so excited!!

Picture update: In my house I have two square frames that have 9 pics in them. One of them has 9 faces of Kennedy, the other has 9 pics of Harrison as a newborn. I was going to try and have one for each child but since Mckinley's surgery I wasn't able to get some newborn ones, so I decided to have Jenny take some face pics at the park that I could use as 9 faces like Kennedy's...so Jenny jumped, laughed, danced, made funny faces, noises and pretty much did everything but stand on her head to get Mckinley to smile...which I totally believe paid off! Here are a few of my fav's...(harrison helped at the end and actually was a little bit distracted but ended up with a few cute ones too :)!) Thanks Jenny!!!!

shattered...

Strange name for a post but that is really how I felt for a moment today...

[postnote.. I wasn't going to publish this after i wrote it because I feel so much better, but i spent time writing it so you can skip it if you want to, this is a journal for me...]

Mckinley has been doing so well, has started rolling all around the place this past week, is 5 months now and just seeming like a normal baby! We had another heart apt. this afternoon and I wasn't really that nervous for because she has just done so well. We got there unrushed at the perfect time. Harrison as roaring at her and making her laugh really hard in the waiting room, making her get the hiccups, and making my mouth turn up as well feeling so happy with my two little ones. She was then weighed and measured, my cute chubby 14 pounder had gained 2 pounds :)!

We then went into have her echo done and I sat Harrison down, we wrapped up Mckinley so she couldn't move her arms while the tech started the echo. Harrison was playing with one of their toys and I gave him a fruit by the foot to keep him happy/busy while I focused on singing Mckinley Old McDonald and keeping her happy. Everything was going well...when the tech said, "okay, lets leave her there I am just going to get the cardiologist real fast to check something..."

that sinking feeling

********FLASHBACK*******

~October 26, 2004, tues night, nearing 1am in the morning, Ryan and I standing next to Kennedy while she is strapped to the CT scan and the tech comes out and says to the nurse, "Why don't you come in here for a minute, [to us] why don't you wait here for a moment..."

that sinking feeling

moments later (or was it years) we were waiting in Kennedy's room, the doctor came in and said, "why don't you come with me to another room...(we follow along)..."...we found a tumor in her brain..."

that sinking feeling

~May 30, 2005, we were waiting next to Kennedy as she lay in her bed at the hospital after her MRI, the doctor came in...the doctor never comes in, its always the nurse...he brings us into his office and shows us the MRI and points out ALL the tumors, going throughout her brain, going down her spine...

that sinking feeling

~October 2008, Ryan and I are sitting watching our new little one swim around inside me on the screen, we are not finding out what we are having this time, we want it to be a surprise. I have them make sure the brain is there and there are arms and legs and a spine...things are taking longer, the tech says, "I just can't get a good look the head and the heart, I am going to go get the doctor..."

that sinking feeling

the doctor comes in and find a problem with the heart, we are sent to the specialist and find she will need surgery, BUT she will be okay.

All these thoughts went through my head today as now the doctor is rechecking and double checking and now Harrison is crying because they took the toy away because he dropped it twice, Mckinley is screaming and nothing is helping, while I'm praying that everything will be fine, I am panicking (internally of course) and trying to decifer what the doctor and tech are talking about, while I'm thinking of these things as well as how I must have not been doing all that I am supposed to be doing, how now the miracle of her health has been taken away and as I look into her eyes I think, "...I could loose you..." and for a moment I almost broke.

But then the doctor pulled us in the room and said that everything was okay! I said well what was the problem in there? what were you trying to find? he said that the tech got some numbers that they didn't like and they found what they needed. There is a spot that they are watching because it might potentionally need surgery earlier but at this point it is okay and looks fine, we just need to keep watching.

ahhhhh, relief!! WHY could they not have just said that in the room instead of sitting there worrying over something and panicking their patients mommy ???!! Anyway, after all my drama that probably lasted only 15 minutes I was spent, but EXTREMELY greatful that it looks fine.

So I got in the car and I needed to keep my mind off of the whole incident so I turn on some music and the first song that I hear (is kind of ironic becasue it's actually on my blogs playlist) is the chorus to Shattered, "...How many times can I break before I shatter..." and that is exactly how I felt at that moment in there...so much for forgetting about it...so I put my sunglasses on while I drove home (and it wasn't because it was sunny ouside).

Thanks for letting me vent...I needed it! But I am better and she is okay!! and we don't have to go in for 4 months :)!!

We're home!!

We made it home!!!  After the cardiologists looked at her last echo they sent  us home!!!  We feel so blessed.  They did the echo cardiogram on Monday and her heart and lungs had finally stabilized.  The pressures were the same as the friday one and so the changes after birth had finally happened.  So since the heart and lungs were stable and she was still pink, and o2 sats were still in the high 90's they were able to send us home. 

I kept wondering why they were having such a hard decision when she was looking so good, but one of the cardiologists said that her heart didn't look good--that is looked like she needed surgery,  but then you look at her and she just looked great.  So they were waiting for her to suddenly go downhill like her heart looked.  But she never did!!  So I just want you to know that fasting, prayers and blessings sure do work--so we can have the time for her to mature and get bigger so that the surgery has the best possible outcome!!  

They are watching us closely--the home health nurse came Wed., we saw the Cardiologist again thurs. and then we saw the pediatrician today.  They all said she looked good!  So we are taking it a week at a time.  When her o2 sats are in the mid 90's they will watch us closer and when they are in the low 90's high 80's she will go in for surgery.  So we are hoping she can wait for 2-4 months!  

In the meantime we need to fatten her up and not get her sick!  She loves to eat (unlike EITHER of my other kids) so hopefully that will be easy but the not getting sick part is going to be hard.  I can't take her in crowds or inside  a lot of places, but we can go on walks and parks when the weather is nice.  So church sounds like its out for a little while and it will be really hard on Harrison if he can't see his friends during the week--but these months will go by and she will have surgery and then recover and then be a healthy little girl!  I am looking forward to those days !!  

Thanks again for all your love!

A few more late pics from the last month

Again, its been a month--sorry!! Here are a few pics that happened, and then a few notes about doctors appts. I've had...

Every wednesday we get together with the kids for "park group" which is now at the church for the winter.  So we bring bikes and balls for them and here is Harrison already getting "pushed around" by the girls (but when their this cute why not let them  ?!)
Another Wedn. some decided to explore the city by going to the exporitorium downtown San fran.  Well, quite the adventure....a few notes:

*three hours getting there (via BART and Bus) 2 hours there 2 hours home...next time I think we'll drive!

*5 women, 6 kids, 5 strollers + snacks/diapers/drinks don't fit on one bus...

*make sure you know the CORRECT name of the place you are going to, to ask the bus driver...

*make sure you go on the same bus as the person that is paying for you...

*Always ask strange people on the street to take pictures for you...
*enjoy the scenery...
*let the kids run around while they can...
*don't get on the bus when school is letting out...
*you must remove your sleeping children from the stroller before getting on the bus...
*ALWAYS stop at Sees chocolates to get chocolates for the ride home...
*walk home and congratulate yourself on surviving the days adventure being 8 months prego :) and having the only mom with a kid that didn't sleep the whole day...
It has been raining a lot and Harrison had to get out and of course the first thing he does is jump in the puddles, though you tell him not to...but who can deny this cute little face?

"See Mom!  I jump like a froggie!"

By the end of the jumping his pants were so wet that he had to hold them up to keep jumping, but jump he still did!!

So the last u/s on the baby's heart have been good, still growing.  I have now surpassed my normal prego size and weight (for a while now :)), and my OB wants to induce me next Friday (march 6) because I'll basically be 39 weeks, i've started dilating and because of my blood thinners and the baby's heart they don't want me to go on my own...so possibly I have one week left...I meet again with him on Monday and will try and talk him out of it!  

I met with the neonatologist and he is positive about the baby and basically said they are prepared for anything, so whatever happens the baby will be taken care of.  The surgeon I had an appt with, canceled because of another emergency surgery so I will meet him when the baby is born....So we're just waiting...  

Hope everyone is enjoying their winter!!!  

Ultrasounds...

So at the beginning of my pregnancy I asked the doctor to not do an u/s (ultrasound) because I only wanted the one at 20 weeks.  Well, since then I have had to have a few more then planed.  About a month ago we had our first u/s!  and NO WE DON'T KNOW WHAT WE'RE HAVING!  I talked Ryan into not finding out the last minute.  Thought the doc gave us a sealed envelope with a certain picture on it...and yes, I have it hidden and Ryan doesn't know where it is :)!  Well, the u/s tech was taking forever and said that he couldn't get a couple of veiws because the baby wasn't cooperating.  I didn't think anything of it (which I should have known better) so he went to get the perinatologist.  I ate some jelly beans and the baby started moving and she started looking at the heart...again.  So then I started to worry, I had the tech check everything that I was worried about like the baby has a brain, there were two kidneys, arms and legs, a beating heart...the usual.  So then I was informed that it "looked like the baby has a hole in the heart, and I'm not seeing the vessels cross...so how bout another u/s tomorrow with a pediatric cardiologist?" "Sure, why not"...I mean what could I say?

So, Ryan canceled a trip for work and the next day we had another hour long u/s and this is what out little baby has:

Tetralogy of Fallot (here's a general pic)

So this is generally what it is but this first u/s showed that we only had on of the pulmonary arteries (the blue branching "T" shaped thing)to the right lung and not to the left(so instead of a "T" an upsidedown "L").  Also the pul. valve and arteries are half the size they are supposed to be, and the hole(ventricular septal defect) is supposedly "fairly large".  So we were obviously thrilled :~( and I vow never to go to the doctor in Oct. again because it seems to be cursed for us!  But after some prayers and fasting we felt okay about it.  

SO...

We went back this past friday for the next installment of our little one's heart.  And GOOD NEWS!  well, I think it is!  Yes, the baby still has tetralogy but they think they saw the other pulmonary artery (so a "T" instead of "L").  Also, even though the arteries are still half the size they are supposed to be...they are still half the size--which means that they grew with the heart and there is still bloodflow through them with is KEY--as long as the blood flows then that should stimulate them to keep growing with the heart!! 

SO...

What this all means is that this baby is doing fine while he/she is in me.  When the baby is born is when they need the blood flow to the lungs (the pulmonary arteries are how the blood gets from the heart to the lungs, getting oxygen for the rest of the body...so kind of important) so that the baby can breath and receive the o2 that they will need.  So it all depends on how the baby does at birth.  The baby will need open heart surgery but when and how many will all depend on the baby, when they are born and how the surgery(ies) go.  

SO...

I guess we'll keep hoping it gets better and that I can cook this baby as long as I can!  

Hope everyone has a HAPPY THANKSGIVING THIS WEEK!!!!