Thursday, December 11, 2008

Up Down, Up Down

UpDown, Up Down is the way her story goes. Tuesday was her 2 week birthday so in celebration she had her second surgery which went well. It seems like we had her a year ago, not 2 weeks ago. Dr. Nigro cleaned out her chest cavity and removed fluid build up behind her little heart. He also relocated her ART line to her left hand as the foot it was in is now black with some tissue damage. Hopefully she won't loose any precious tootsies! And he also took her off the ECMO machine, YEAH! He also placed a PD catheter through her belly button to aid in the loss of fluid. Her abdomen will be filled with a solution that pulls fluid from her tissues and then drains out of the catheter. He said her heart and lung function looks good but he's never been more concerned. He said she absolutely needs to loose fluid in order for anything else to improve. It was a disappointing day.

Today, Thursday, has actually been a pretty good day, knock on wood. For starters her blood pressure is up from the 33/24 to 69/35, that's really good for her. Because her blood pressure is up she's been producing a little urine, not much but any production is awesome, her kidneys are coming back! She's also, through her cath, lost a little fluid. You couldn't tell by looking at her but she's negative! Her heart is beating stronger than ever and her color is looking pretty darn good. Yesterday she had a yellow/greenish tint but not today! Her lungs are sounding good which is also an improvement. Her sweet foot looks a little better but still pretty sad. She's been weaned down on her epinephrine, a potent drug for her heart. Both her surgeon and the ICU doctor seemed optimistic today that perhaps she's turned a corner. Slowly, slowly over the last 2 days things have seemed a little better.

Chris and I have very much needed some good news. We've both been feeling discouraged and depressed. I've let my mind wonder to the possibility of loosing her and before I was quite certain it would end that way but now it doesn't feel right. The road ahead may be long, slow, and frustrating but I feel like she'll recover. I look back and see how my prayers have changed. In the beginning I asked she be healed quickly, right now. Then I asked for Him to take her, give her tiny body rest, let her quit hurting. Now I ask for even the slightest bit of improvement, no matter how small, as long as she's improving let her healing take as long as necessary. We want her home and in our arms desperately but as long as we get there, even if it takes months and months we'll be happy and grateful.

16 comments:

Janalyn said...

Wow, she does sound a lot better Heidi! What an amazing amount of crapiness to overcome.
I'm so glad to hear the update. I honestly keep your blog up all day and check every few hours when I'm home. I suppose I could just call, but I'd hate to make you cry. ;)
Give your Jersey a kiss for me!

Shanen said...

Ohh Heidi... and Chris, that is great. Can I just say that even reading your post, I can finally hear something happy coming from you. I can feel that you are optimistic now. I am so glad that she has maybe turned a corner and there are small tiny improvements, which really are HUGE!!! Those are great things looking in the positive direction. I can feel a PINK tree coming =) I'll call so I know when you are home. =)

Angie Whitman said...

love you Heidi. It has been less than a month since you called me asking what you could do to help me. You have helped me in so many ways already (I'll have to email you). I now feel helpless and want to help. Please know I'm thinking of you and praying for your sweet family.

Lily's Mama! said...

Heid, I know exactly what you feel, I can understand your emotions like they were my own. We could talk for days of these things if we both had the will power to leave our girls rooms long enough.
She looks good, even with the swelling, she looks good, her color is beautiful, the fulid ALWAYS takes time to drop off. We named Lily our "Puffer Fish" for weeks because she had so much fluid on her. If you ever have the time, on Lilys page on the left side bar there are 2 videos, montages actually from her first and second surgery. And then while watching those, you can click on veiw more and I have a video titled "Imagine...Life of a CHD Parent" it is a 20 min video, it follows her up to the end of her second surgery, but it will show you that many of us know exactly what you feel, that we have had the puffer fishes, the crazy depressed thoughts you do. That they are completely normal, you wouldnt be human without them. This life is a bitter pill to swallow, but I will swallow the pill, as all of us will, because we do it for them.
Remember, I am right next door if you ever need anything.

We are praying for you all, like we have since we learned about Jersey girl.

God Bless
The Mclaughlins

PamJorg said...

I was soooooo glad to see you at Book Club! Even if you did take my book!! It was good to see you take a moment for yourself.

We're still prayin' for Jersey. My little Rylee called her New Jersey the other night because it has 2 meanings...the state (which made her laugh) and because she is a new baby.

Nichols Family said...

Super! So happy the procedures went well and she's getting stronger. Also I'm relieved to hear you feel more optimistic about her condition. Such relief. I'm bummed I couldn't go to book club...I wish I coulda seen you again. Hope the weekend brings more good news :).

The Larson's said...

Heidi and Chris we are so glad to hear that she has turned a small corner, that is great!! We will continue to pray that her little body may get stronger each and every day. We love you guys

Tara Bowman said...

Hey Heidi-
I am so happy to hear she is doing a little better. We think of you often and hope your pulling through. Keep being positive!
Love you guys,
Tara

Sonia said...

Heidi and Chris....I am so happy to hear the awesome news. I talk to you, but I want you to know in writing that I am always thinking of you all. You both are amazing and strong. Heavenly Father has sent this perfect angel to you to raise. What a beautiful blessing. You will be made whole--she will be made whole. I love you both and appreciate your friendship. If I could wipe your pain away I would. Sweet dreams and kiss little Jersey's precious foot for me.

MommyRohner said...

Thank you for sharing the AWESOME news!
You continue to inspire and amaze me.

Go Jersey!

Rachel and Gavin said...

Wow, this is all so amazing. Heidi and your family are amazing. Your baby is so beautiful and precious. Crystal told me about all of this (I haven't blogged for a while) and I don't really know what to say. I just want you to know that you are all in our prayers. She sounds like a fighter. Isn't it amazing what technology can do now a days. GOOD LUCK!

The Bostock Fam said...

Hey Heidi,

I met you at the boutique at Michelles house. Anyway, I have been reading your blog for a while now and have not commented because I was not sure what to say.

I hope your prayers get answered. We have been praying that whatever is best for your little princess happen. I hope you feel the love of everyone prayers in your behalf. you are a trooper.

Rachel (bradshaw) Bostock

The McBrides said...

Hi, you don't know me but we are neighbors in the PCTICU. A friend of mine found your blog and sent me your way and sure enough, we are in similar boats and I have seen you around. We are in room 8 if you need anything we will be here a long while. Good luck with your baby girl, she's very cute!

Renae said...

What good news! Even though it's small improvements, it's one more step in the right direction! :) We continue to pray for Jersey & your family & love your family so much!!

Ruthie Girl said...

I was brought here by Julie W. I am a high risk perinatal nurse and have had a baby in the NICU. Social services have great state programs for babies that stay in the NICU for longer than 72 hours.

I am so glad you are taking pictures. I was so afraid to take pictures because I was didn't want it to be happening.

I have been there; I know the pain. I wish you the best of luck because while time stands still in the hospital, life goes on in the outside world. Good luck with the balancing act. (I also don't think it is fair when you are just recovering from delivery. ;) )

Jen C. said...

Heidi, Chris and family...We read your blog in an effort to stay informed with Jersey's progress. We recently fasted for little Jersey and continue to pray for her progress. May you continue to be blessed with strength, hope and peace as you go through such an incredible challenge. What a blessing for Jersey to come to a family with so much love to give her.