Tuesday, April 20, 2010

I guess God has chosen....

to make me a mom of a heart baby.

Our dear sweet baby Joshua has been offically diagnosed with a heart defect called Hypoplastic Left Heart Syndrome. This is one of the most severe heart defects that a person can have. If not treated within the first few days of his life, he will not survive.

Here are the facts: (I'm still trying to process all of it....I don't even know where to start....)
1. This is, what we have been told, is the most severe form of a heart defect. A "normal" heart has 4 chambers. Joshua's heart has 2 regular sized chambers, and 2 chambers that are not developed. Those 2 undeveloped chambers are on his left side.
2. Approximately 2 or 3 days after delivery, my precious baby boy will have to undergo open heart surgery. This presents a 50% chance of survival. He will have to be hospitalized for 4-6 weeks after surgery.
3. Joshua will have to be delivered in Indianapolis at St. Vincent's Hospital. We will be seen there every 4 weeks by the cardiologist until birth. The doctors seem to think that I can have a regular vaginal birth that they will most likely induce at 38 weeks.
4. At approx. 6 months of age, he will have to undergo a 2nd open heart surgery (the glenn or hemi-fontant procedure). And then again between 2-3 years of age he will have to undergo a 3rd and hopefully final open heart surgery (the fontan). In between surgeries, he will have to be on medication and monitored very closely by a cariologist.
5. This Hypoplastic Left Heart Syndrome (HLHS) can be an indicator of chromosomal abnormalities called Trisomy 13, 16, 18, or 21. Trisomy 21 is the only Trisomy that is not fatal. Trisomy 21 is also known as Down's Syndrome. They did an amnio on me today to test for any chromosmal defects. If Trisomy 13, 16, or 18 are present, this will infact be a fatal diagnosis. If Trisomy 21 (Down's) is present, I'm not sure what they will do, but I would assume that they will try to correct it. If there are no chromosomal defects, they will 100% do surgery just after birth. We will find out this Friday the initial results of the amnio.
6. On top of all of this, the Subchorionic Hemorrhage is still present, although it is not quite as large as it was.
7. If Joshua were to be born premature, they will not even attempt to operate, and he will not survive.

Here are my thoughts so far:
I do not want to be here. It all feels so surreal. I never in my wildest dreams expected to be a mother of a heart baby. I never expected to be told that my child has a good chance of not living for more than a few months. I never dreamed that I would hear the words "open heart surgery" "severe heart defect" and "4-6 weeks stay in the hospital" in reference to any of my children. I am absolutely devastated. I do not want to be here. I want to wake up from this nightmare and forget that any of it is happening.

I don't know how we are going to survive financially. We are already working on a $1500/month deficit. I'm not sure how this is going to work. The baby will be in a hospital 2 hours away from where we live. How do we carry on a normal life with 2 little ones who don't understand? How do we surivive financially between the lack of income that my family already has and will only grow as I can't work and am caring for a baby in the NICU for up to 6 weeks. How will we afford the necessary medicines and doctors visits, copays and hospital bills? How can we afford the gas and wear and tear on the car while driving back and forth from Indy? How is this going to work?

Here is the hardest part. Faith. Faith that God is in control. Faith that God has created this baby perfect, even if he is not perfect in our human eyes. Faith that God is going to carry us through. Faith that God is going to keep my marriage, my family, and our finances afloat. I know that we love a mighty and merciful God. I know that He has everything under control, even if I feel like life is spiraling out of control at an ubelievably fast pace. I know that God is going to use this for His glory even if the outcome is death. But right now, I'm struggling to see through all of this. I'm not losing faith....I'm clinging to the faith that I have. I'm praying for God to wrap his arms around Shane and me so tight that we can hardly breathe. That is the only way we are going to survive this.

Please, I beg of you. Pray for us. Pray for peace. Pray for understanding. Pray for God to wrap his arms around us and carry us through. Pray for God to provide exactly what we need when we need it. Pray for Caleb and Hannah as we figure out a new normal for our family and how we are going to make all of this work. Pray for a miracle for baby Joshua- all things Joshua: healing, love, and comfort. Pray that his life- no matter how long or short, be for the glory of God who has created him perfectly no matter what.

Be checking back here often. As I process through all of this, I will be sure to blog my thoughts, emotions, struggles, and miracles.

I will also be honest. I am probably going to be putting ads on my blog in the near future. It is not meant to exploit Joshua and his illness, but to hopefully provide some sort of income for my family. Even if it's $50 a month, that will cover the cost of gas for our monthly visits to Indy. I just want to put that disclaimer out there.

I'll update more as time goes by. In the mean time, I thank you all so much for your love, support, and prayers. We feel every prayer on our behalf. Your prayers and support is what has gotten us through all of this so far. Thank you from the bottom of our hearts.

14 comments:

Alyssa Canada said...

Praying for you, Shane, and the kids. Know that we are here if you need anything. Love you!

The Cox Family said...

I was just thinking, can Medicaid cover his costs since he will be "disabled"? Also, SSI should kick in. I know you may not be able to process all this now, but lots of our babies qualify for SSI for sure because of the prematurity and defects. Just something to think about, a sliver of hope as far as the financial stuff goes. Praying!

Cassie Wieckert said...

Jill,
I'm sorry this has been such a struggle. I know that you and Shane are trusting in God's perfect plan, and so I know that whatever the outcome, you will be able to handle it. I'm constantly praying for you and your upcoming decisions.
Hang in there!
Cassie

Jayne Heinrich said...

Jill-
My husband and I live in Noblesville, in a four bedroom house with plenty of room for overnighters or even a place to stop for a meal or two. My husband is out of work but I have a good job and would be more than willing to house/feed you guys if you'd like to stop by on your way into Indy or need a place to stay close after the birth (We are roughly a little over a half hour to St V's on 86th street- is that where you will be?). Thinking of you and hoping you reach out if I can be of any help.
Jayne

Leah said...

I'm at a loss for words, but praying with all that is in me for you, Shane, Caleb, Hannah, and most of all precious Joshua.

Great suggestions from the Cox family post. Definitely some things to think about when you can process the day's news.

Love you all more than words can say. My heart cries for you!

The Hoitsma's said...

wow jill. that's a lot of information to process in a short amount of time. our hearts and prayers are with you guys. let me know if you need to talk or anything. i'm here for you!

J Holl said...

You do whatever you have to. I will certainly be praying for you, and I'll get you on my church's prayer chain as well. If there is anything else I can do, let me know.

DLynn said...

Contact the local Medicaid office and ask them how you can get an application to become a Medicaid transportation provider. Shane can fill out the application and he can get reimbursed for the miles down to Indy.

Have some other information for you but you are way over whelmed right now. Just wanted to give you that. Feel free to call me when you are up to it.

nabrissa said...

you know i'm praying!!!

Seraphina said...

My heart goes out to you and your family for having to receive such hard news. I will be thinking of you and hoping that the difficulties lessen and that better news comes your way soon.

Chris said...

I hope this isn't weird, but I saw your post about this on facebook and thought I would let you know that us guys (Me, Jake, Derek, Jordan, Greg and Troy) are thinking and praying for you and your family.

Amanda said...

Jill, I'm so sorry for all that you're going through. I first "met" you on the SCH board and you sent me some very encouraging words after a rough day.

Please know that I will be praying for you and little Joshua.

Christia said...

We love you guys and will be praying for all of you. Sending you spiritual hugs everyday.

Monica said...

Jill, I am a "newbie" to your blog. My 8 yr old has been through the surgeries your Joshua will need to have - but we are in Chicago. I will ask around my friends in Indy to see what resources they come up with to help them make it through. You can email me at monica@benotafraid.net, or I'll just post to you here, whatever you are most comfortable with. God bless you - it's difficult to process all of this and you are smart to reach out and accept help (of all kinds).

 
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