Good Week

>> Friday, April 17, 2009

Stephanie had a shower this week at her office and we were simply stunned at how many people blessed us with gifts in preparation of these two little girls. The outpouring of support and generosity really put Stef on top of the world. She needed that and on behalf of both of us I want to thank the employees of Dr. Pepper Snapple Group for everything they have done over these past months. They have been nothing short of amazing!

We had a couple of really great appointments this week with our OB's. Even when we get bad news we walk out of those appointments so confident that our little girls are in the most competent hands we could ask for. We have truly been blessed with our doctors and they continue to confirm that we made the right choice to stay in Dallas. We saw Dr. Zaretsky on Thursday and both girls are measuring right where they should be. Stephanie was at 28 weeks on Wed and Kamryn measured 28wk 0 days and Brooke was 28wk 1 day. The fluid levels are both looking really good and her cervix shows no sign of letting these babies out anytime soon. What totally blew us away was the Lung to Head ratio we came up with. We actually calculated it a number of times using both cm and mm just to make sure the number was right. Through all the separate measurements, we were getting a range of 2.0 - 2.4 LHR. We want this to be over 1.4 and we clearly are doing well on that measurement. Kamryn's liver was much more echogenic than it has been in the past, but we still couldn't see that it was in the chest. There may be a very small amount there, but it is very small. We were really optimistic after the sonogram.

We did find out that Stef's blood pressure is higher than it needs to be and that caused some concern. Between that and the discomfort she is in, Dr. Zaretsky felt it would be a good idea to make this week her last week at work. Stef is officially on bed rest now so that we make sure these girls stay put for as long as possible.

Our appointment with Dr. Trylovich today went very well also. Stef is measuring 35 weeks right now although she is only 28. All of the discomfort is totally normal and we learned some ways to help with some of that which was great. Apparently a baby belt or strap would help relieve some of the pressure. I'll be making a run to home depot tonight to grab some duct tape. That should hold those babies up just fine.

In all seriousness, I think the reality that we are getting close to having our world turned upside down is setting in. Not just for Stef and I, but also Hollie. She asked me while we were driving a couple weeks ago if Kamryn could die and what would we do if she died. That's a tough question to comprehend as a parent, but I can't imagine what it's like for a 7 year old. I had to explain the harsh reality of the situation in the gentlest way possible. My heart just broke for her as I can see how scared she has become with everything going on.

Any family that has gone through CDH can tell you the waiting game is nothing short of terrible. For so many months you want to get on with the show and get to delivery to finally understand how this will play out. As you get close though, the fear and anxiety really starts to take over and you wish they could just stay in mommy. I wish we could put the brakes on, but we can't and that day will be here before we know it. I take comfort in knowing we have found the best team to beat this condition. I think that is all we can do. I know it's time to truly understand that we have to give up control, but that's easier said then done. The bottom line is this really sucks, but it is the hand we have been dealt and we will overcome it while strengthening our family and finding a deeper appreciation for all the blessings we have.

One of those blessings is the amazing support group we have found in everyone who keeps up with our story. The comments and emails do more than you will ever know to keep us going and our spirits up. We sincerely appreciate all of you!

Our next appointment is with the Pediatric Cardiologist next week to check on their hearts. Everything looked great last time, but they want to do one more check. I hope everyone has a great weekend and thanks again for all of the support and kindness.

Please keep Baby Jaime and Baby Kaden in your thoughts and prayers. They are putting up such a great fight and need continued support.

Shawn

4 comments:

Tracy Meats April 17, 2009 at 10:20 PM  

Duct tape can fix anything! I can't imagine how Stephanie must be feeling with all that pressure and I am happy to see that the doctor has put you on bed rest Steph. I know it will be very tough, but well worth it to get those two girls close to 36 weeks or longer, just to help with their lung maturity and if Kamryn would need ECMO. I am praying Kamryn comes out strong and fighting and Brooke is right there cheering her sister on. Hollie is in my prayers too, for this is a very scary life changing event to go through. She is very lucky to have you both helping her through it. The appts. sounded like they went very well and I hope the cardiologist appt. goes well next week too. Stephanie, if you need me to mail you some books to read, just let me know.

Have a relaxing weekend and we are praying for your family. (((HUGS)))
Tracy - Ian's mommy

Maxton's Mommy April 17, 2009 at 10:47 PM  

:-) I am sure Stephanie will love the duct tape fix! hehe.. that made me giggle, thanks. I have been thinking of you guys. If there is anything I can do for you all, please let me know!!!!
Ashley

Jaime's World April 17, 2009 at 10:53 PM  

Hi Shawn and Stephanie,
First, let me say thank you for keeping our little guy in your thoughts and prayers. Next, Shawn, I had to have the same conversation with Jared that you had with Holly. They are just old enough to understand a little bit, but I don't know if they are fully able to comprehend what is truly happening to their little sibling.
I wish you guys all the best!
Get all the rest you can now Stephanie, it will be hard, but well worth it!
Take care,
Hugs and prayers,
Sheryl

Elizabeth April 19, 2009 at 4:53 PM  

Keeping you all in my thoughts and prayers and sending that little one - Lung Function Chants - although with that LHR seems quite good to me - sure she has CDH? I know but it is really awesome.

I recall having the same conversation with Cecilia's bit sister too - it is hard because as parents we are to have all the answers and this is just one of those things - we really do not.

And faith and hope help too. I am a firm believer that everything happens as it does for a reason - and these babies choose us!

With thoughts, prayers and Lung Function chants,
Elizabeth

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