Saturday, November 29, 2008

Day 4

Chris and I have been rotating who goes home and gets a good night's sleep and I was the lucky one. When I got to the hospital there were doctors and nurses swarming her room. Chris was standing in the hall and told me not to go in. Her blood pressure had dropped really, really low and everybody was frantically trying to stabilize her. They gave her dopamine and epinepherine to help with her heart function, extra fluid in case she's dehydrated, fentanyol to help with her profusion (blood flow), antibiotics, hydrocortizone (a steroid), calcium and potassium, a blood transfusion, and completely paralyzed her ALL to increase her blood pressure. They also drew blood to test for any infection and took a chest x-ray to see if her lungs had collapsed. Fortunately they hadn't! The doctors don't know what caused the drop in blood pressure so they covered all the bases to be sure. She's been resting peacefully since.



I asked her cardiologist why delay the surgery. He said they were waiting for the baby things (jaundice, infection, different ultrasound things) to go away. When she was in the NICU she was started on antibiotics but looked like she didn't need them so she was taken off. Now they've started her back on them in case there is infection and we'll have those results in a couple days. We're beginning to think she won't come home without first having her surgery which is good and bad. Good because she needs it, obviously, and we'd very much like to have this all behind us sooner than later. Bad because we want her home to grow bigger and stronger. As I'm being educated with her condition I've learned that although she has a heart disease her biggest problem will be lung disease, not being able to breath. I understood initially there'd be breathing problems but I was under the impression once her heart was fixed her lung problems would disappear. Not exactly. It could take years before she might function at a normal level, possibly never.

I find myself playing the "I would rather" game. I would rather have her healthy than deal with...it's a vicious game that never seems to end happy. So many times through out the day I catch myself.

We know everything she is going through is completely necessary and that it will get better but when we look at her and she's so beat up it's impossible to remember that. She's where she needs to be I know but the other half desperately wants her home, snuggling on my shoulder or screaming at 2 in the morning. I've never changed her diaper or kissed an untapped cheek or held her for longer than 3 minutes. I feel very robbed but at the same time so lucky. There's way to many emotions to sort through. It's quite the roller coaster!

18 comments:

Kippy said...

Heidi and Chris,
Congrats on Jersey and she is adorable! I can't believe the dark hair! Know that we are thinking about you and praying for you and Jersey. Thanks for keeping us updated.
Much love,
Kip and Nate

Everhart Family said...

Here I am at 3:45 in the morning with a non sleepy baby & thankful for it. I hope your sweet little girl is soon in your arms in the wee hours of the morning.

Sending my love!

The Smith's said...

Hope things get better, let us know if there is anything we can do to help. We can help with the other kidos too if needed.

PamJorg said...

What can I do to help?? We're saying prayers for Jersey and for You and Chris and your sweet T's as well.

Thank you for the updates and for taking the time to send out that RS email!

Mandi said...

I can't even imagine what you must be going through. It's amazing what we take for granted when we have it. I think of all of the times that I have been totally bummed that I had to get up in the night to feed a newborn or felt inconvenienced by something extra I've had to do. Now, after reading all that you are going through I feel like I am so much more going to appreciate and treasure all of those moments. I'm so sorry that you are having to go through it all.

DEANNA said...

We say prayers for you daily. I can't even imagine....

I know you don't know our family.. you don't know ours.. but I wish your baby all the best, as well as your famiy!

Ashleigh & Zebb said...

Oh Heidi you are so much stronger than I am but hang in there, she's obviously where she needs to be so she can be watched over 24/7 (a little less stress for you knowing there is someone right there) you'll be able to hold her all day before you know it without all the cords, IV's and what not. Love you girl and let me know what i can do besides keeping your family in my prayers!

Nichols Family said...

Thanks for all of the updates. Oh my goodness guys...seriously, what? Poor thing! Just so you know again for the 1,000,000th time we love you all and pray for you every day! You are an awesome family. Get well soon Jersey!

The Larson's said...

Heidi and Chris, I can't imagine what you both are going through. Heidi especially you and not being able to do all the "new" mommy things. You both are amazing people and I admire you for being so strong during this time. Jersey is a lucky girl and all though you can't hold her and snuggle she knows how much you both love her. Hopefully snuggling will come very soon! As you know we love you guys and you and your sweet Jersey are in our thoughts and prayers daily. If there is anything we can do please let us know.

Alvin & Jessica Pease said...

Hey Heidi,
first off Jersey is sooo adorable. we got to tour the unit last week & it broke my heart to see the babies like that. It was also good to see what we will be doing after the baby is born..
Also we live 5 minutes away from st joes so if you ever need anything let me know...my # is 480-292-4808. keep the updates coming on baby Jersey! we are praying for you guys...

Jen H. said...

Can I just say we think you guys are amazing!!!! You are constantly in our thoughts and prayers! She is absolutely adorable!!!!

jill said...

I'll be in AZ in less than 2 weeks! I can't wait to see you guys. Keep us updated!

~Cari said...

Such de ja vu for me! I feel what you are going through. I embarrassingly admit that it is rough to read your blog. It is SO hard to see Jersey going through all this crap. I am glad you are blogging your feelings as you go through it- I wish I would have done that because now I have all this anger and frustration that I am dealing with. We are dealing with Cloee having major lung disease and they've talked about doing lung transplants- have they said anything about Jersey possibly having transplant in the future? I took one day at a time but sometimes it helps to look at the distant future too.
Hang in there. Please know you have MUCH support and love from everyone!

Chelsea said...

I'm so sorry, this must be excruciating, but at least she is here, and in good hands. Hang in there. Remember I am still good for my offer to help with the blondies.

The Galvan Family said...

Heidi & Chris, just a quick note to let you know that Jersey is in our prayers. Please let me know if there is anything we can do to help. my cell# 480-236-0751. I mean it-- anything. We love you guys!

A change of Heart said...

Hi there-

I happened across your blog, browsing the heart babies. This post rings so true to so many of my feelings. My little daughter just received a heart transplant after months of waiting- I have run the whole gambit of emotions.

She is a sweetie... sing to her... play her music... and give her little massages where she is not attached to something. This is such a difficult time- and try not to let the fears creep in. Try and spend time with your other little ones. I didn't and it has been really difficult on my other children.

If you need ANYTHING- please let me know!!!

Mimi
Mia's mom

Jamie Y said...

first of all, congrats on your beautiful little girl! I'm so glad she's here, but my heart ached for you as I read your posts. I'm glad she's in good hands with such great doctors, but I can't imagine how hard it must be to feel so helpless. Thanks for the updates, I'll be checking in lots and sendig prayers your way!

Jamie Y said...

PS-those are the best short hair hospital pictures I've ever seen, you look great :)