Our sweet angel baby Gabe....

Today has been again, one of the hardest days for Mike and I...

First of all, to everyone that has prayed for our family - I want to say, thank you so much :) I believe those prayers have given us the strength we've needed and I will ask for continued prayers to help us get through what's to come.

Since my last post, we've changed doctors to Dr. Callison. She is my sister-in-law's doctor and she is a blessing. So, today we had a doctors appointment. We had an ultrasound done of Gabe. He has huge problems. During his 22 week ultrasound he was doing just find structurally, ie his organs were developing so we didn't have any problems there. Today, on the other hand it was devastating to see. His lungs have not developed. They didn't even look like they where there in the ultrasound. His fluid has gotten worse and it's around his heart, brain and organs and his body is just so swollen.... his head is measuring 33 weeks and his belly is measuring 35 weeks.... his chances of survival on his own are non-existent outside of the womb. We're basically just waiting for his little perfect heart to stop beating. Which will happen once the umbilical cord is cut, if he doesn't pass before then.

Also, my belly is measuring 33 weeks - I am 26 weeks and 2 days. So I'm measuring pretty big, this will eventually turn into a concern as well...

Dr. Callison wants us to talk to the NICU doctors to discuss what we want to do for Gabe when he is born. Do we want them to wisk him off to the NICU to see what they can do (mean while he wont be with us when he dies) or do we want him with us until he passes away....

Over the past couple of days, I haven't felt him move as much as he had in the past few months....As I type this, I can't believe I'm typing this...

We're going to talk to the priest on Saturday for baptismal arrangements. Manu is going to talk to my Uncle Geoff for the funeral arrangements.

I don't know why I feel the need to journal this but for some reason I want to keep all of the days we've had with him and bottle them up for us to keep.

I've never known real pain until this experience but I believe in the Lord and I know he has a plan for our sweet little family.  I never in a million years would have thought this would happen to one of my children, it makes me appreciate the blessings we have and not take anything for granted. We are a strong family so I know we will get through this, one day at a time.

I couldn't help but tear up as I picked up Sophia from school today. She of course had no idea what was wrong and I did a pretty good job of concealing the tears... it was the snot that I couldn't hide :) I am going to write a letter to Kleenex and tell them that their product is not as soft and durable as it should be! My nose is raw!

Gabriel Connor Dempsey :) 25 weeks and 3 days!

I think it's a good idea to tape this boys movement for a couple of reasons, Number 1 - because he's a miracle and I am thankful I get to experience this with him. Number 2 - because technology is so advanced that I get to save these moments and try to preserve them in time.  If you ask Manu, he's being active because I ate some cracked out chicken that she made us, for breakfast this morning or it could be the watermelon I devoured a little bit ago... :) Whatever sparks his interest to move like the karate kid is fine with me! :)

I'll post again next Wednesday after our 3:30 doctor appointment.

Doctor update and some...

OK!! Where do I begin! First of all, let's start with last weekend and Uncle Jon-Jon and Uncle Kraigy brought Manu her bed (she's been sleeping on a blow up mattress.. no fun) so she can get some rest too! She has been a HUGE help to us as we trek through this new journey of the unknown... not to sound like an episode of star trek or anything... :)

Then, Mommy and Daddy celebrated our 5 year wedding anniversary!!! :) It was pretty low key this year, which is to be expected :) We had dinner and a movie. It was quite nice... I was able to eat fried pickles and a fried shrimp, yummy! Just a little craving I've been having. Plus, Manu watched Sophia and they made cupcakes for their date :) Good stuff!!

Now for the baby news:

First of all, Gabe is a fighter, he's constantly moving and reminding me that he's still "here" and not  to give up on him!! So after our Anniversary weekend, we still hadn't heard the recommendation from Dr. Gonzales. So I decided to call Dr. Purvis' office to see if they had heard from him. Sooo, in the time I was waiting to hear back from Purvis.. I got a call from Birmingham... it was the insurance lady, for the second time, asking me if I authorized her to charge me $700.00 for the parental FISH test. AGAIN, I ask her - who is requesting this? She doesn't have to answer that because she is the insurance claims lady... not the nurse or genetic counselor that's trying to spend mine and Mike's money for us. So, she patched me over to the "nurse" -- this lady has gotten on my nerves every time I talk to her. She is the "results teller" and she always throws in her 2 cents which I never appreciate.

It just so happens, she caught me at the wrong time! I basically told her that I didn't want to hear her opinion, I have not authorized this test because it does NOT help MY unborn child's chances of survival and at this time, that's where our concerns are! Furthermore, I want to hear what the doctor has to say and not HER! PHEW, I felt better after this phone call!!

As Sophia and I were at her very first dance class at the dance company, which she loved :)
I heard from Dr. Purvis' nurse, she called to set up an appointment for Mike and I to talk with Dr. Purvis on Wed 6/5/2013....

So it was Wed and it was a big day for Sophia! She FINALLY got to go swimming at school!

 The reason why this is SUCH a big deal is, she's been eyeballing that pool since her first day there!

 And to swim in the pool she had to be in the intermediate class or advanced class!

This girl swam as an advanced class student :) Great job punkin butt!!

 

Now for the news of the day:

Dr. Gonzales did not recommend that we perform anymore invasive procedures on Gabe. He did not recommend any intervening at this time. He did however, expand upon Gabe's chromosome deletion. He said that this is a very rare genetic deletion and he could not tell us how this was going to affect our son. All he said was the spectrum was very broad and he used the analogy of a 3 gig computer missing 18 megabits of memory. He said that's how much of a genetic deletion we can expect with Gabe. Because of  the chromosome 13 deletion of segments 32.1 through 34 he thinks that's causing the fluid in Gabe. So, as one can imagine... this hit mine and Mike's hearts pretty heavily! Yesterday was not a good day.....

 

As we were talking to Dr. Purvis he did say, the best test we can do to monitor Gabe is to feel his movement daily. He said, if I want to come in to the office and hear his heartbeat than I can, at anytime. So he checked Gabe's heartbeat and it was pumping away at 155 bpm and Mr. Gabe was moving all around for Dr. Purvis. :) This was our GREAT news.

 

Our course of action:

Is to take this pregnancy one day at a time. I will go to see Dr. Purvis every two weeks and receive ultrasounds every four weeks until Gabe makes his grand entrance into this world and by the grace of God he will let us keep Gabe for many years. We really need to focus on what we can do and that's monitor his growth and heartbeat and fluid...

 I have been doing some research on "where" to deliver and Huntsville hospital has a NICU level 3 and so does Brookwood in Birmingham. I asked Dr. Purvis if we will need to make special arrangements to have specialists at the delivery and he said we can do that if we need to and that wont be hard to do because his doctor community is a close knit group of doctors. He said the closer we get to time to deliver, then we can go over that course of action.

We don't really know what to expect at this point. So like I said, we are going to stick to our course of action and keep chugging along one day at a time.