July 19, 2008

I know I promised an update several days ago and I've tried so hard to give you one. I've started so many pages but have not been able to finish without melting into tears. Even now as I am typing tears are rolling down my face... It's so difficult to do this. In a few weeks my son will be born and I will know joy and also pain unlike anything I've ever experienced in my life before.

So many of you have written the most beautiful emails to us letting us know you are there and we are so grateful. Each email and comment we read help to lift our spirits knowing we have so many people who care about us. Thank you so much for your messages of hope and love. And thank you so much for your prayers. Today, I am asking that you pray for me...my courage and my strength are fading and all I can think about is how terrified I am to face what is before me.

Last month was tough to get through...we've had so much bad news. I guess at some point, I think I've just become numb to any kind of feeling...

We started the beginning of July pretty optimistically. The last 2 doctors appointments in June went very smoothly...no issues and Christian continued to progress normally.

In fact, because our son seemed to be doing so well, Ryan and I decided to schedule another appointment with the pediatric cardiologist to discuss possible surgical options for Christian's heart. Our initial appointment with him was cancelled by our regular doctor shortly after finding out our baby had Trisomy 18. Incompatible with Life. It's the proverbial brick wall we slammed in to back in April. In light of Christian's development though, we decided not to let T18 deter us from seeking out a second opinion regarding Christian's heart and we requested another meeting with the cardiologist. Certainly, we understand there is no getting around the medical diagnosis of T18. It's fatal...we get that. BUT, as parents, we wanted to be able to explore every possible option available to us to help Christian. We wanted to see if there could be anything done to help prolong his life. Our appointment was scheduled for July 7th.



The first thing we had done was a detailed echo cardiogram on Christian's heart to verify the original diagnosis of Tetrology of Fallot. What we learned is that Christian's heart has a Ventricular Septal Defect (VSD) instead. Apparently, this is a common type of defect in babies who have genetic defects. More importantly, we were told that the hole was very large and would probably not close by the time he was born. Currently, Christian's heart is functioning at about 85 percent capacity. It was hard to fight back the tears as the doctor went through the results of the EKG but we were still hopeful that he would tell us Christian's heart could be fixed with surgery. Unfortunately, that was not the case. After a brief moment, he turned from the ultrasound monitor and told us that because of the size of the hole, Christian was not a candidate for surgery. He would not survive it.





I just stared at him completely dumbfounded by what he said. I didn't understand it at all. This doctor was one of the leading pediatric cardiologists in the country and he just told Ryan and me that he couldn't help us. It hurt to breathe and my face felt flush from my efforts to hold back the flood of tears which threatened to come at any moment. With as much composure as I could muster, I asked the doctor how long Christian could survive without having surgery and he told us that it would only be a couple of weeks to a couple of months at most.



We knew that the prospect of Christian having a normal life would not be possible with T18. But the pain we felt knowing we had no options available to us to help him is almost too much to bear. Christian now has two strikes against him and he isn't even born yet. But my son is such a fighter! Even now, as I am typing away, he movements are strong in my belly. He is always letting me know that he's there and reminding me to not give up on him. I love him so much!



The following week, we had another ultrasound to check his development and to make sure that no additional problems could be seen. Already, the weight of our recent news was affecting mine and Ryan's moods. We'd been pretty down all week ....just struggling to get through the days. It's weird (or maybe not so) how being sad makes you so tired. All I wanted to do is sleep and forget about everything around me. Unfortunately, I couldn't even do that. It doesn't seem fair that my life is falling apart and the world seems to continue to function with or without me being a part of it. Our commitment to our son is the only thing that drives me to get out of bed each day. I don't want to have regrets at the end of this journey. I owe that to my son.



Anyway, I went to this latest ultrasound by myself because Ryan was scheduled to work on shift at the fire station and couldn't get the time off. It didn't bother me too much because I thought this appointment would be another routine exam. Since the previous ultrasound appointments had gone pretty well considering, I felt confident this would no different. Plus, Ryan assured me that he would pop in if the fire truck was in the area.



One thing I noticed right away is that the ultrasound images weren't as clear as the ones we were used to. Christian looked pretty cramped in my belly and it was hard to make out the images on the screen. I was told this was normal as I progressed in my third trimester. As the technician took the routine measurements, she told me that he was currently 2 weeks behind in his development. At 32 weeks he was measuring just 30 weeks. More bad news and I was alone to receive it. Not a good place to be considering I had done a poor job of handling the information the cardiologist shared with us only a week before. Fortunately for me, Ryan walked in shortly afterwards and helped to comfort me. He is so great like that. He got to spend about 10 minutes with me and Christian before being called away on another emergency call. But it helped me to collect myself enough to get through the appointment.



After the ultrasound, I had a lengthy visit with my doctor about the results of the EKG from the week before and the ultrasound we'd just completed. She spent a lot of time with me discussing our wishes for Christian and asking questions Ryan and I had not yet considered in our pregnancy. We've been so focused on Christian's birthday and all the things we wanted to do with our son that we've had very few conversations about making final preparations for him. I left the doctor's office feeling very sick.

That's the way I've been feeling for the last few weeks. Just sick to my stomach. I've asked myself a million times why this is happening to us and how will I ever get through it. Ryan and I have wanted children for so long...we've prayed about it..we've done everything we possibly could do to have our own children...and now we have to plan the funeral of the precious child we've waited to patiently for. It just doesn't seem fair.

This week I have two doctor's appointments... Aug. 6th and 8th. We'll know more about Christian's developments and our next step on Friday. I pray that the doctors will tell me he is well enough to go to term. It is so critical at this point for his lungs to be as fully developed as possible because my son's heart is having to work harder to compensate for the VSD. He just needs a fighting chance. Ryan and I are still hopeful for a birthday. I want my son to hear his mom and dad tell him how much we love him and how we couldn't wait to meet him.

My dear friends...to all of you who have taken the time to write to me and pray for us...thank you again for everything. Thank you for walking with us in our journey. To know that my son matters to each of you is most humbling and so overwhelming. We are forever grateful.


Love, Leah

13 comments:

Anonymous said...

Leah,
I don't know you at all and am not even sure how I stumbled across your blog. I do know that our God is not one of coincidences. I know that I am right where I am tonight with a reason and with purpose. If nothing else but to be someone else who is praying for your precious son. Know that I am praying for you guys and your sweet, sweet child. I pray that the Lord settles you guys on my heart and each time that I think of you, I would know what to pray for you. I also pray that you are able to treasure each moment with Christian until you get to look in his little eyes and tell him how much he is loved. Rest in the Lord tonight and be confident that you will see His goodness (Psalm 27:13).

AL

Laurie said...

Thank you for the update Leah, and please know that my prayers continue for you. Asking God to give you strength to make it through each day, one at a time and for you to have a birthday for Christian. I know that the Lord will give you the strength you need when Christians birth comes and He will get you through. I wish I could do more than pray, but I know God hears each and every prayer on your behalf. Asking Him to surround you with His peace and comfort during this time. Christians life matters so much and he is very loved by many. Enjoy each and every movement he gives you and I pray for sweet time with your baby boy.

Love, Laurie in Ca.

StephG said...

I just found your blog and I wanted to say that I am praying for the both of you! Words can't express what I feel for you as a soon to be mom and dad. I won't pretend to understand everything you are going through, however, please know that you and Ryan are in my thoughts and prayers! I will keep praying...

Stacy said...

"For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope. Then you will call upon Me and go and pray to Me, and I will listen to you. And you will seek Me and find Me, when you search for Me with all your heart." Jeremiah 29:11-13

Leah-I will continue praying for you, Ryan and sweet Christian. You all are in the palms of God's mighty hands and He will see you through each moment and each tear and each breath. Hold fast to HIM....He is faithful. I know you have hopes and dreams for Christian, but God does as well...He desires to give Christian and you..."a future and a hope"....hope in HIM and a future in HIM.

You are Christian's voice right now. I remember so vividly coming up against the doctor's, and their stance to do nothing "above and beyond" to sustain my son, Joshua's life. The reality of that was troubling...they are doctors...they are in the business of saving lives. But that wasn't the case with my son....they didn't give us hope...so your hope has to come from God...it is eternal!

Be strong in the Lord and don't be afraid to be Christian's voice...after Josh was born, they didn't even want to feed my son....and actually told me we didn't have to...I was shocked!!! What baby don't you feed?? Our pediatrian turned us away and wouldn't see us, for he said "these babies don't live...I don't know how to care for him." But God showed us when we had to push harder, He opened doors where medicine closed them...and He took care of our son. He will do the same with Christian.

"Seek God with all your heart"...and He will speak to those places that no one else can...He will comfort you, He will give you His peace and His hope and He will guide each of your decisions and your steps.

You have a whole family of women praying for you all. I will be praying this week especially for both of your appointments...that God would go before you.

In Christ's amazing love and grace-Stacy

sea star said...

I continue to pray for you and your sweet family. Thinking of you.

Carole said...

Came across your blog and want you to know that my thoughts are with you. Not a single thing I can say will help so I will ask God to especially comfort your hearts and bring a peace that passes all understanding. God WILL see you through.

Jennifer Burgett said...

I found your blog through the Stanfield Family Blog. I checked in on you regularly but this is the first time that I have commented.

I think of you and pray for you often. I pray for God's will - whatever that may be and that you may have peace with it all.

I will pray for courage for you to get through the next few weeks.
In His Love,
Jennifer

Pete Wilson said...

You continue to be in our thoughts and prayers. PLEASE let me know if there is anything else I can do!

Janelle said...

you don't know me...but my heart aches for you as if we have known each other forever.
keep trusting...
and i'll keep praying.
Hugs.

jan plus abbe said...

Leah & Ryan, I have been following your blog for several months & praying as hard and as often as I can...but tonight I feel I have to say that God is very careful with his special needs children and has choosen you to be the parents for Christian. What a fine choice He has made, how loved Christian feels.Its not you wanting a baby, its this baby needing you...Thank You for being there for him! My prayers are with you.

Kirsten said...

Leah,

Praying for you. So glad that I found your blog so I can encourage you. Hugs to you!

Blessings,
Kirsten

Melissa said...

Leah & Ryan,
I found your blog through the Stanfield's blog and have been following Christian's story. What a blessed child to have parents who love him so deeply and have been so strong for him. Just wanted you know one more person was thinking of you and praying for you this past week for your appointments and in the weeks to come.

Kim (marygracesummons.blogspot.com) said...

Leah,
Thanks for the update. I am continuing to pray for all your needs. You are so precious and my heart is full of thoughts and prayers for you and your family.
With love,
Kim