Blog Comments

Good bless and good luck <3

Casey, many of our families forget the blogs are here, try going to the forum tab up above and posting a new thread, so many more will see it and offer up advice.

CONGRATULATIONS on the birth of Gavin!! That is wonderful they did his surgery and I hope they are able to close him soon. Gavin is in the best care possible and leaving him at night is hard, but you need your sleep too. He needs you to be strong. I let myself get ran down and ended up getting very sick and they banned me from the NICU. A common cold to us could be deadly to him, so you need to sleep and eat and take care of you. Call the nurses when you are home, if you are awake or can't sleep. They should be willing to take your phone calls. I would call the NICU all the time when I was away or at night. It is hard to leave your baby, but he is in good hands.

Is their a Ronald McDonald home near the hospital? Just remember you need to be strong for Gavin and it is okay to step away and rest. It will only help you be stronger for him. Big ((((HUGS))) to you and that preciou baby. Tell him to keep fighting!!

It sure does... It makes me so happy to know that his lungs might grow at the end of all this. Lets go Gavin!!!!!!!!! Xoxoxo

Praying for you! Hope your precious son keeps growing and this surgery will give him a strong fighting chance. Hope your bed rest is not too bad, for I can't imagine being in bed for that long. I imagine the end goal will help the time. (((HUGS)))

Praying for you and that precious boy!!!

I had extra amniotic fluild too...many CDH baby momma's do. Just due to the fact they can't process the fluid like a normal healthy baby. I was always measuring 4 weeks bigger than I was date wise.

Praying for Gavin and you!!! Hope he keeps growing so he can have his fetal surgery! Hang in there!

Will do! well I haven't updated since our appointment on the 16th... Gavins Trachea is just a little too small for the stent , so they want us to come back on May 1st to check again, and if his trachea is big enough they're going to go ahead and do the surgery as quickly as the next day... I have a little extra fluid due to him not being able to breathe, but my cervix looks great , so no big concerns there... also his height, and weight is at the 52 percentile so he's doing great!!!!

Way to go Casey and to your MIL!!! That is great!!! Can you please email Dawn a copy of the proclamation if you can too....we are posting them on facebook? dawn.m.williamson@gmail.com

Are you ready for your little guy's surgery this week??

Thank you ladies!!! I scheduled to see my regular OB on Monday, and Gavin seems to be on track weighing 2.3 pounds, and having a great heart rate!!! not worried anymore because now i'll be seen on the 16th, which is a couple of days before surgery, If they don't see me more often after surgery there will be problems lol... but I definitely think they will... Thank you again for sharing

In Cincinnati, OH they have what they call the Fetal Care Center of Cincinnati. I went there often for NST's, ultrasounds, and I had two MRI's(through Children's Hospital). They kept me very informed each and every step of the way. I even got to tour the area of Children's Hospital where they would be taking my son immediately after birth. Cincinnati Children's has doctors who specialize in the care of CDH babies, and I know when my son was there 5 years ago, there was a 100% survival rate!

Casey, doctors vary all across the US on the frequency of how often you are seen. Most of the visits don't pick up until the third trimester and many doctors do the non stress tests every week on the baby and monitor your fluid levels in the third trimester. There really is not much more they can do but make sure the baby is not in any stress, a strong heart beat and your fluid levels are normal (by taking your measurements). Ask the specialists in Miami, if you will be seen more often, especially after the surgery takes place. You need doctors to be monitoring you and baby after the fetal surgery, for preterm labor risk is there and the baby cannot be delivered with the stent still in place. You should be seeing the doctors that place the stent and an OB after the surgery, I would think anyways.

I send happy thoughts and lots of healing energy your way!

Hi, I was diagnosed in-utero and even so, I wasn't seen any more than a typical pregnancy and definitely not 2-3x per month. The main goal for my OB in my case was to carry as long as possible to full term and then we had a scheduled c-section (Probably because I already had one c-section and because of the CDH). I'm not sure the doctor would be able to tell you anymore if they saw you more frequently but don't hesitiate to ask why if you're doubting the frequency. It would be good for you to hear the rationale from the doctor himself/herself. By the way, I was at MassGeneral who had CDH specialists so it wasn't because they weren't experienced with CDH.

Hello, we are 27 weeks as well and also diagnosed with CDH. Our OB referred us to a perinatologist that monitors the baby every week. We found out the hospital that we were originally going to deliver at would not be able to handle our situation and had to find a new hospital with a level 4 NICU. Keep asking questions. Time is on your side as you were able to find out before delivery.

Praying for strength for Gavin and you!!! Getting close to surgery date....sending you and Gavin lots of positive energy and thoughts. Tell that sweet boy to keep fighting!!

Sending healing prayers!

Good luck!!! <3

Thoughts coming your way, good luck!!!!!!! Stay strong!

Sending many healing prayers and positive thoughts from Vermont always.

Maria Farnsworth
Nonna to Angel CHERUB Liam ("The Lion") Anthony Hunt

Praying for strength for Gavin and you! You can do this, he can do this. Keep us posted in the months to come....will be thinking of you and hope the surgery is a success to give Gavin's lungs the opportunity to grow and for him to be stronger. Fight Gavin fight!! (((HUGS)))