Friday, February 27, 2009

Prayers for Sky & Carla and Angel Baby Joseph

I just got home from my NST/AFL bi-weekly appointment, and like every other day I check out my blog for updates on all the CDH "family". I sit here an absolute crying mess with the news that baby Joseph lost his CDH battle last night and is now an angel in heaven looking over his mommy, daddy and two little sisters. I cannot express how hard this news is hitting me today--and how badly I feel for them. I know there are no guarantees, but I am having a hard time trying to find the sense in it all. Joseph's family is at the forefront of my thoughts, and I wish there was something that I could say or do for them that could even make it a little bit better. I guess I will just continue to pray for them, since that seems like all I do these days.

Please, everyone, keep them in your prayers as they are going thru probably the worst thing that can ever happen to a family. And after a good, hard, fight by a little warrior...

Tuesday, February 24, 2009

Twice a Week Appointments

I guess it is a sure sign of the "quick approaching due date", when they have you coming in twice a week for the NST & AFL. I am now officially on the every Tuesday and Friday schedule. Kaden did great today, and my AFL was at 16.6!!! That just makes me sooo happy. I am trying (although I am not convinced we can control our amniotic fluid level)to really keep it in check. I want Kaden to bake as long as physically possible, and one of the highest risks to us CDH mommies is early labor due to Polyhydromnios (high amniotic fluid). Of course I love getting to look at him twice a week--today he was soooo cute: He was sucking his thumb with one hand, the other hand was on his cheek, and he had one of his feet up under his chin. Even the nurse way saying how cute he looked. He is already such a HAM! The doctor said his NST "strip" looked fantastic, so hoping still for a very healthy heart! I am nervous about our appointment on Monday at UCSF. That is always where we get the most information, and at this point I almost feel like I don't want any more information. I am really going to try to ignore any not-so-positive info (if we get any). I feel so deeply that Kaden will do amazing things when he is born, and that we WILL bring him home healthy.

This has been a VERY busy 10 days for all the newly arrived CDH babies. Addison was born on the 17th the UCSF, and our prayers are working--she is doing good and is scheduled for her surgery on Thursday. Joseph seems to be doing well and on the last update he went from "not-so-good" to being removed from ECMO and holding his own. We all continue to pray for him (and Skye & Carla) and look forward to his updates. Another baby girl, Oakley, is doing well at Atlanta (with Joseph) at 12 days. It must be so great for the families to have each other for support. I am anxiously awaiting an update on Alina--our UK CDH baby belonging to Alex & Ingrid--we are praying that her surgery went well, and she will be back home soon!! Just know we are thinking about you. Also, one of my other "little inspirations" is baby Davis. He is now about 25 days old and is doing so fantastic! Check out his blog--they all look so happy....I could go on and on, as there are so many babies already home that are doing so well. They bring me great comfort and hope reading their updates everyday.

I know that all of us "still preggo" mommies (and daddies) are starting to get anxious and scared. It will be a pretty busy month (or two) ahead of us with Kaden, Maxton, Jaime, Jon, Kamryn, Ava, Juan, Lil Peanut due to Jeremy and Carrie, and Layla all due within the next few weeks. I lift our babies up to God every waking moment that we will ALL have nothing less than spectacular outcomes. I do believe we all, as parents, have chosen the best care possible for our little CHERUBS and they will beat the odds!

In closing, I want to just mention how DEEPLY touched I was to receive a message from Jamie Morrow, Angel Kaden Morrow's mommy. Her Kaden chose wings over feet, and thru her pain, she reached out to me and told me that her Kaden was watching over mine. That means more to me than I would ever be able to express. I pray that God is bringing some sense of peace to you, James & Kayleigh. I know that your pain is unimaginable, but Kaden truely is an angel and with you everyday. He is absolutely one of the most beautiful babies I have ever seen...

Wednesday, February 18, 2009

To all my new friends :)

I just wanted to take a moment out of my not-so-busy day (I have been sick for 3 days) to say how much all of your support means to me. If I ever questioned why God put us on this road, I believe it is because of the new friends I will make along the way. I just got off the phone with Liz (Nayeli's mommy) and she always makes me feel so good :) For that I am eternally greatful! She is going to meet us at UCSF on the 2nd (our next appointment) and hopefully we will be able to meet with Marion & Jason (and maybe even baby Addison) who arrived last night. Marion posted that Addison is doing good, so please KEEP HER IN YOUR PRAYERS DURING HER FIGHT! I also got a message from Stephanie, Mommie-to-be of twins, Brooke & Kamryn (who has LCDH) just checking in on me. I'm further along--I should be checking on YOU! I also have to mention that Megan, John Michael's mommie, posted an absolutely precious video about John's journey from birth to today on the CHERUBS website (and his blog) that made me so speachless and moved me to tears (Only HAPPY tears, Megan, I promise) I think Craig even got a little choked-up. You did such an amazing job on it! He is so beautiful--see for yourself-and to hear him laugh has got to be the best ever. It really hits home how much we take for granted sometime--I would give anything to know that we will hear Kaden cry or laugh.

Anyway, I just wanted to take the opportunity to say "thank-you" to all those who were strangers to us not to long ago, but have since become a part of my daily routine--all the CHERUB mommies & daddys. There is a certain amount of support that comes from someone who has gone thru or is going thru what we are with the CDH. They are the ones that truely understand our fears, anxiety, and moments of pure joy--I think we all go thru the exact same emotions. We are in some ways a family...

Friday, February 13, 2009

Friday the 13th...

Well, today is Craig & my 5th Anniversary of the day we met. It is really the only anniversary we celebrate. We had to wait so long to get married that we really don't do anything "super-special" for our actual wedding date--call us crazy! Friday the 13th has always been a GOOD day in my life! Don't know how we are going to celebrate yet--we were going to go to Monterey for a couple of days, but I have such a hard time getting comfortable we decided just to stay close to home. Just one of the many small sacrafices we make when we are pregnant :) I did get a call from UCSF and my next appointment is March 2nd at 10:45am. I will be a little over 33 weeks then, and we "may" discuss the birthing plan. If not we will go back in a couple of weeks for that. I am starting to get really scared about the fact that Kaden will not be "safe" inside me for much longer--and I know what a fight he will have when he gets here. I just want to protect him from all the things that he will have to endure to get healthy :( I am enjoying being pregnant sooo much--not ONE pregnancy related problem (High Blood Pressure, GD, swelling--NOTHING)--I have only gained 20 lbs., and aside from just getting used to being "rounder", I feel fantastic! I pray that my AFL remains in check (last appointment it was 19) and that I can make it past 38 weeks...

On another topic--we put up Kaden's crib (it looks like a throne to me) and have gotten everything on our registry except for the rocker/glider chair that I wanted. So now all we need is a BABY!

Please continue to pray for all of us, as we are getting anxious and are praying that God will continue to give us the strength to stay strong! This is a difficult journey, but one that I am forever thankful that we are not on alone! I have come in contact with so many other CDH families, having gone thru or going thru what we are and cannot express enough how much each of their journeys inspires me on a daily basis. I am ADDICTED to everyones BLOGS and their stories and feel like I know you all...

Tuesday, February 3, 2009

Kaden's Baby Shower

Kaden's shower was a success! With about 40 in attendance over the course of the afternoon I was feeling a little "spread thin"! MUCH THANKS to Naomie (who should be a party planner), Vanessa (who made me cry with with the "K" brownies and the CDH Ribbon cream puffs) and Jacqueline (Who should be a professional cake maker)who did so much to plan the "perfect" event for us. It was really great to see everyone and there was so much support for Kaden--I cannot express enough how much it means to us. We were really excited to get to meet Shane & Liz in person--I was actually glad to have some alone time with you guys--it was probably the highlight of my day. I have so many questions and Nayeli is my personal "BEACON OF HOPE"... My Mom was able to come from South Carolina, which meant the world to me to have her here while I was pregnant. One of her co-workers from her office, Connie, made one of the most touching gifts. It was one of the "few" times I cried during the day. It really was a CELEBRATION of his arrival! Here are a few pics:

Brownie Bites w/ "K"'s from Vanessa

The Cake Jac Made...

My CDH Ribbon Cream Puffs!!
Mommy & Daddy before the "Cake-Cutting"

The Beautiful Dessert Table

Naomie, Me, and Jac

Kaden's Shower "Loot"

On a different note, I had my appointment at UCSF yesterday. I was mildly "disappointed" that there has been no improvement, but Dr. Lee remains cautiously optimistic. It hasn't gotten worse, either, so for that I am extremely thankful. My fluid level was down to 19 (from 24 last time) so that was good news. I am just continuing to pray that God will have His hand in the birth and that Kaden will have sufficient lung tissue to be stable until they can "fix" him! Please keep us in your prayers and we will keep you updated!