Tuesday, December 30, 2008

The Good and Bad

Jersey has made "considerable progress" over the last 2 weeks and "good progress" over the last week her surgeon said and we are thrilled!! He said today she was stable, stable!!! she's never been stable before, this is huge. So she's made huge progress, she's stable, AND her doctors are hopeful...a little weight is off our chests. Her nurse said she's one of the miracle babies that proves everybody wrong. I love it!

Having said that we have to take the good and the bad, unfortunately. She has a condition called chlyothorax. I don't really understand it so I won't try to explain it. But what I do know is it causes an excessive amount of drainage out of her left chest tube and she's been switched to a special formula for her feeds rather than breast milk. Her doctors are worried that because she's draining so much her already rotten nutrition is even more compromised. She's plateaued and won't get much better if she isn't fed and she can't be properly nourished until this chylothorax is taken care of. Also, she needs to be put on permanent dialysis for her unfunctioning kidneys so her poor little body will have to endure another surgery with 2 different things on the agenda. Her doctors want to take advantage of her stable condition in hopes of an easier recovery.

Her surgery is a relatively low risk surgery but I'm not sure I can handle a repeat recovery from these last 4 weeks. I'm terrified she'll come back to us looking, acting, responding horribly. It's taken her 4 weeks, 4 weeks to stabilize since her surgery.The doctors still have no answers as to why she did so terribly, what if it happens again? I anticipate taking a step or two back but I'm not prepared for any more than that. I'm amazed at what her little body has already survived and I think it unfair to ask her to do it all over again. What was she thinking when she raised her hand in Heaven and signed up for this? She's a fighter as she has already proven, if she can endure this life of surgeries, sickness, and unknowns surely there is a throne waiting for her.

14 comments:

Jamie Y said...

I'm so excited for the improvements that she's making, but I'm so sorry for the set backs. It's a good sign that the doctors are so optomistic and we'll be keeping her in our prayers for her upcoming surgery. Hopefully you got a hold of Kelly so that she can take good care of you guys!

Shanen said...

This little girl can wear a crown her whole life as far as I'm concerned. She HAS made good progress and the doctors must know that to ask her to endure another surgery. Surely they wouldn't be considering this if they didn't think she could handle it. She is in our prayers constant and wish you all the best.

Everhart Family said...

Everyday you are in my heart & prayers. xoxo, C

Morris Mama said...

Yay for all the good! We will for sure be praying for this next surgery and her recovery to go well!

Brittanie said...

Oh Heidi! It is so wonderful that she is finally in stable condition!! I'm sure that this next surgery will be much easier on her than the last. Jersey is amazing!! We love you guys!

Kim said...

I know what she was thinking when she raised her hand in heaven...she was thinking "I can do this because I will have strong parents who will love me and help no matter what, we will learn from each other and together we will endure lifes journey."

No doubt her throne will be right next to yours.

hydee ann said...

i think when she raised her hand in heaven volunteering to go through all of this, she did it to help you and everyone else who has been touched by her experience and who has grown because of it. at least that's how i felt about laird when we endured our measly one week in the nicu and the terrible first month at home. it all seems so small now, especially in light of what your little gal is going through. still praying for you all.

Matt and Stacey said...

Hang in there! I know it's tough, but they do get through it. It is a long road (take it from me we spent 6 months in the ICU there) but they do get through it, and they are happy in spite of what they've been through. Stay strong and keep in mind that she feels your strength.
Take care,
Stacey

The Ridgway Family said...

I often wondered the same thing about Eden as to why in the world did she sigh up for this and what was Heavenly Father thinking sending her to me. I definitely did not think I was the type of rock solid mother she needed throughout her life. However, the Lord has a plan for all of us and I thank Him daily that He gave me the opportunity to be Eden's mommy. I know it was much more for my benefit and learning than hers. It is so hard to accept, but she is on her throne now and although I miss her horribly, I would not trade even one day of her life.

I know that sending her off to yet another surgery is so agonizing, but you can do it Heidi. Remind yourself that her team of surgeons, doctors and nurses love her and will do their very best work on her. I do not believe that she will feel any pain as I think she is sustained by countless numbers of angels, as will you be each day.

Eden also had chylothorax and was on Vivonex for some time, but she did recover from that and was back to taking my milk within a month or so. It sounds like a big thing, but as long as you keep telling her you love her every day and kiss her as much as possible, she will recover.

I think of you daily Heidi and your little family. I am sorry that you have to travel this road because it just plain stinks, but the Lord does love you and many, many prayers are with you.

I will pray for Jersey and her surgical team as they prepare for this surgery.

Love, Keisa

Janalyn said...

What a rollercoaster of emotions for you guys Heidi.
I know I've asked my Cicily the same question. What would have been so bad about holding out for a body that actually functioned?!? I wouldn't want one tiny thing to be different about her personality though.
I hope Jersey's surgery goes well and she recovers as speedily as possible.

Presley family said...

I just found your site from a friends blog. I wanted to let you know that your sweet little girl and your family are in our hearts and prayers. I have a fighter of a little boy. Collin was born with a life threating illness called trichothiodystrophy. We were told that he wouldn't make it to one. Well, he is eight years old now and has proven the doctors wrong SOOOO many times. He has had ten surgeries and we are getting ready for his next one. :( I am amazed at the strength of these sweet special spirits. Please know that you are in my heart and prayers always! BIG HUGS

Evie's Story said...

What a tough cookie~ hang in there sweet Jersey! We are checking in on you regularly and praying for continued improvement and no "fireworks" to ring in the new year! Blessings to your beautiful family!

Nichols Family said...

You guys...sooo pleased to hear about her progress. I hope her surgery went well yesterday. Thought about you all day.

Cyndi said...

She's such a fighter!! I hope the surgery went well & that her recovery goes well.