Blog Comments

Thank you for sharing your stories. You are in our prayers.

Praying for you all.

Samantha,

I you posted a while ago, but I just saw this now. My son Brayden had a right sided Cdh. It was found at my twenty week ultrasound. He had fluid inside his chest and and abdominal area. I developed extra amniotic fluid as well. I was monitored throughout the pregnancy and put on bed rest at25 weeks, went into preterm labor at 30 weeks, labor stopped at 5cm dialated and Brayden wasn't born till 38 weeks. His heart remained strong throughout the pregnancy even with the fluid. He was placed on
ECMO shortly after being born. HE made it through surgery, but unfortunately he just didn't have enough lung to sustain life. I am hoping and praying for the best for you and your family. I know how scary a road it is especially with fluid inside.

Samantha I'm sorry to hear that there is even more concerns for Jjackson. I have no experience with this but hopefully someone who does will respond. Keeping you and Jackson in my prayers!

Hi there. After meeting with our surgeon I am pleased (and relieved) to say that the additional findings on the MRI are considered minor- and were more observances that the tech was required to note & not issues we need to be concerned about. I did make a point of telling our surgeon that in the future, minor or not we would appreciate being explained everything to avoid anxiety and worry over medical terms we couldn't possibly understand otherwise. Will be meeting with neonatology today and anticipate a new post/update because we have a ton of questions for them. Thank you for your ongoing support

Samantha I hope you received some answers. Will be keeping Jackson and all of you in my thoughts and prayers.

Hey,
We have an appointment scheduled with the surgeon on Monday the 7th and (unrelated to the MRI) will also be meeting with neonatology on the 10th for a question answer period. We are 10 weeks away from welcoming Jackson into the world and feeling very much unprepared. On a separate note, I've started nesting and have been relatively distracted with cleaning and setting up our home- so thankfully this waiting period hasn't been overly stressful. Looking forward to gettin some answers.
Thank you for your prayers XO

(((HUGS)))...praying for you and your son. Have you heard anything back from the surgeon since you posted this entry?

One day at a time and focus on the positive.

My CDH'er was my second child. At the time of Ian's arrival, we had no clue he was to be born with CDH. At 36 weeks, my water broke and we knew the baby was not handling labor, so they took him by C-section. At birth he was purple/blue in color and not breathing. They could hear bowel sounds in the chest and an xray confirmed the CDH. I had no preparing for what was to come and what CDH even was.

My first son was only 19 months old at the time, so he didn't understand anything of what was happening. He knew the baby was out of my tummy, but didn't understand what happened. At his age we would show him pictures, but he really didn't grasp anything that was happening. They day we brought Ian home from the NICU was the first day he had met his baby brother. He didn't understand his parents splitting time at the NICU and home and why he had to be at grandma's for so long at a time. His personality changed over those few months and it was very difficult.

I think you have to be honest with your children and try to best explain to them what is happening with the baby on the way and let them know the baby is sick and doctors are going to do their best to help save him and that he will be in the hospital for some time. (Use age appropriate language) I think you need to keep her involved with showing her pictures and letting her draw/color pictures for her brother. Your NICU may allow her to visit, which may make things easier too. You have to spend time with them and make sure they know they are loved and even though the new baby is taking a lot of time away from them that they are important too. My heart goes out to you. I am not sure there is ever a good time or way to prepare siblings with what is about to unfold in the months to come, especially when they are so innocent and so young.

Each time you log-in to the forums, you can click on the forum tab and hit new posts, it will show all the new posts since you last logged in. If you ever want to start a new thread, hit the forum tab and all the topics will appear. Hit the topic that interests you and then click start a new thread or read through threads. Hope this helps.

Thank you for your kind and welcoming words. I actually ended up starting a blog because I was having trouble starting a thread in the forums, so I appreciate the link.

You mentioned that you have 3 children aside from your CDH survivor. Do you have any advice in respect to preparing other children for what is to come? We've explained to our 5 year old that her brother has a booboo that is going to have to be fixed once he is born and that he might not come home right away: I'm not sure if shell understand if I explain he might not come home at all. How did you prepare your other children?
I will update the blog after each appointment and if we get any news from MRI.
Thank you for your reply

Originally Posted by Chris and TracyMeats

Hi Samantha, welcome to CHERUBS. You have found a wonderful support group and we are here for you. You are currently posting in the blog section of the software and many of our families do not visit them or should read them. If you post under the forum section, more of our members will read your post. Many of our expecting parents are posting here (starting a new thread). http://www.cdhboards.org/forumdispla...s#.Uhd_Z8rnY5g

I am so sorry you are on this journey of a CDH with your son. My best advice is to find a hospital experienced in CDH and with ECMO resources. Your doctor mentioning the LHR and it being a marker for outcome is right on. Until your son is here and fighting, doctors cannot predict the outcome of your son. There are so many factors that doctors can't predict, such as pulmonary hypertension and how your son will handle the medical intervention.

One day at a time and focus on the positive. This is the hardest journey you will be on. Never give up hope. Love your son to the moon and back and treasure the time with him....he is safe right now and growing. Tell him to keep fighting. He will feed off of your strength and fell your love.

What questions do you have for us? It sounds like you have been doing all the necessary tests and making a plan. Let us know what you hear from the MRI.

We are here for you, let us know if you ever need a friend to talk too. (((HUGS))). I am a mom to a CDH survivor son, who is now 9. I also have 3 other healthy sons. Let me know if you need help navigating the forums.

Hi Samantha, welcome to CHERUBS. You have found a wonderful support group and we are here for you. You are currently posting in the blog section of the software and many of our families do not visit them or should read them. If you post under the forum section, more of our members will read your post. Many of our expecting parents are posting here (starting a new thread). http://www.cdhboards.org/forumdispla...s#.Uhd_Z8rnY5g

I am so sorry you are on this journey of a CDH with your son. My best advice is to find a hospital experienced in CDH and with ECMO resources. Your doctor mentioning the LHR and it being a marker for outcome is right on. Until your son is here and fighting, doctors cannot predict the outcome of your son. There are so many factors that doctors can't predict, such as pulmonary hypertension and how your son will handle the medical intervention.

One day at a time and focus on the positive. This is the hardest journey you will be on. Never give up hope. Love your son to the moon and back and treasure the time with him....he is safe right now and growing. Tell him to keep fighting. He will feed off of your strength and fell your love.

What questions do you have for us? It sounds like you have been doing all the necessary tests and making a plan. Let us know what you hear from the MRI.

We are here for you, let us know if you ever need a friend to talk too. (((HUGS))). I am a mom to a CDH survivor son, who is now 9. I also have 3 other healthy sons. Let me know if you need help navigating the forums.