Friday, April 10, 2009

Letter from Kathleen...

I received this letter from Kathleen today with some good and bad news. I will let you read it for yourself. She is nearing the end of her pregnancy and I will never stop praying for miracles. We know they are out there and God knows His plans for His precious children.


I met with two new doctors on Wednesday and I have good news and bad news.

Good news - I was able to switch doctors and I will now deliver at a different hospital with more options. The new doctors in Fort Worth have been so compassionate and friendly, considering the situation. The "old" doctors I have been working with are just so darn negative and I have always felt like they have just wanted this pregnancy over and done with. The new doctors have been more open and honest with me, and have actually reached out to physically touch me and sincerely let me know how sorry they are that I am in this situation.

Bad news - My baby's abnormalities are worse than they have been telling me. I have been working my tail off the past couple moths, trying to seek answers and find medical intervention for possibly extending her life. the neonatologist started talking to me about things I hadn't been told, and when we went over the latest sonographer's report from the new doctor, it was extremely detailed, more so than from the first couple of sonograms. We have learned that her hernia is on the OTHER side, which is worse and there are more stomach contents shoved up in her chest cavity than we were originally told. The doctor also explained about weight requirements and such that have to be present before a CDH surgery could even be considered. Our baby is severely behind in growth at this point, which is not good. We also learned that the hole in her heart is not a small Atrial one, but rather a large Ventricular one, which is worse. If our baby is ever stable, there is a procedure they could do, but again, weight and growth is a requirement. If the baby is too small, then the equipment will be too big to insert into her tiny body. And to top it off, she has a splayed cerebellum. Essentially, that part of her brain is filleted open, which is not good at all. She may have some primitive motor function, but barely. You know, if the doctors had been straight forward from the beginning, it sure would have made our choices at delivery easier. Maybe they didn't know what they were doing. Maybe they didn't want to tell us all the gory details. But with me, the one thing I can control is educating myself about what exactly is happening to my baby. I am beginning to wonder if the first people should be doctors at all. I am still a human being, and a pregnant one at that! Do my feelings and emotions not matter just because I am carrying a lethal diagnosis? Absolutely not!!

Sorry for the venting, but it helps. At least now I will be surrounded by positive people when such a negative thing is happening. It was not my choice to have a T18 baby, but it is my choice to do what is right for my baby, whatever the outcome may be. I think now, having this new information, I can hand over my pain without feeling guilty that I hadn't tried everything humanly possible. The doctors have agreed to bring the NICU team to my room, as opposed to taking her away after she is born. They have promised me a full assessment, which is something the other hospital would not promise. We have talked about pain meds if needed and they have told me they will do everything possible to help her have a painless death if that is the way it will go. The previous doctors did not believe in pain medication. ??? I can't quite understand the difference in protocol. It truly amazes me.

Anyway, I thought I would give you the latest update and let you know I hadn't forgotten about you. Believe it or not, I actually slept well last night - the first time in months. Maybe I am already starting to let it go. Here's to a new day!


Wednesday, April 8, 2009

Needing prayers...

Again, I am asking for prayers for a sweet little girl we met just a few months ago. Brianna who is to turn 2 this Sunday, Easter was born with full Trisomy 18! She is in the PICU in Florida as we speak and they don't know what has happened. Recently she has had the normal ears infections, colds and taken courses of antibiotics. But things changed during the night and took a very serious turn today. That is all we know. I did just speak to Brenda, her mommy via phone and they don't know much of anything yet. As soon as they know something they plan to update her blog. Her site is

Just a reminder not to forget Kathleen, who is getting very close to delivering her little girl in the Dallas/Ft.Worth area and is in need of a major miracle. Her little one will be born with Trisomy 18 and other issues that they can't find anyone to operate on her. Please pray that there will be a huge miracle.
Also for a little boy named Jonah and another named Stellan. These do not have Trisomy 18 but do have life threatening health issues.
Also a little boy named Michael Z who is only a couple days old with full Trisomy 18.
His parents are so thankful for this time they have, but it is so hard not to want more!
Also, I just realize that tomorrow Kim Summons will be having her baby. They lost their precious daughter a little over a year ago to Trisomy 18. She has two other big sisters waiting to welcome their new sibling. Praying that God will watch over this family tomorrow.