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Although it sounds like a cliche, I realized it was so true when I was pregnant with my little one. Just take it one day at a time and love each day you have with Delaney. Don't think about tomorrow. And when tomorrow does come, appreciate that day with her. You can sing to her, you can talk to her, and she will hear you.

In my case we didn't know and count that as one of our biggest blessings during our journey.

It's hard to have faith, hope, peace what ever you want to call it when those around you don't have it. One thing I had after Adam was born was an incredible since of peace that it was going to be ok. My husband not so much but he kept quite about his doubts (at least to me). Keep on hoping that all will be well, expect to be crushed if they do not but keep hope until the end. This is a one day at a time journey. All you can control is right now, do your best to make sure that your precious little one is as healthy as can be so that the baby has the strength to fight when the time comes. Once the time comes that control will be out of your hands and solely in God's and the surgeons and the babies.

Our husbands were created to be our protectors. They desire us to be happy and healthy and safe. They want to control those things and sometimes they can't so they want to prepare you. My husband is the same way. Sometimes I wish I could strangle the pessimism out of him. Allow him to be your protector but let him know if his doubts are affecting you in a negative way. Make sure that he understands that your stress level needs to be as low as possible so that you can have the strongest baby possible. I don't know about you but when I stress out I stop eating right.

I would rather think of it as having Faith not being lulled into a false sense of hope. It's the one thing that we can grab a hold of tightly during times when situations are completely out of our control.

Please remember it is okay for both of you to have your own feelings. It is important to communicate this difference in your feelings. It is important to allow each other to have different feelings. Neither feeling is right or wrong as we are all individuals and that being said will handle each situation differently.

I always tell my daughters when faced with differences in their marriages: "Now is not the time to be at odds, but rather it's time to circle the wagons and divide and conquer!"

Since the beginning of time men have been instilled with the thought that they must fix everything, stop the hurts, be the bread-winner. Unfortunately our society has not helped. I'm sure it saddens Josh as he wants nothing more than to protect you.

I've rambled too

Sending many healing prayers and positive thoughts always.

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

Oh my goodness...We are so at the same point in our journey's it's crazy...My husband is the EXACT SAME WAY. Think of it this way though..he is worried...very worried about YOU. He wants to be there and be able to support you...this is an INSANE journey...I think he just wants to be prepared for any outcome that may come your way to HELP YOU. I truly do believe that...even though it may come across as insensitive in your eyes.

My husband is very reserved when it comes to me talking about the future and our son...I think it's healthy to talk about all possible outcomes though. Honestly, we know what we want to do if he doesn't survive, we know how far we'd like to go once he is born with medicial intervention, and we've tried to go to both side of the spectrums and discuss ALL of our options. I think it will help to talk about all of these..it's hard...very hard, don't get me wrong...But I don't want any ANY regrets if we lose our son...I have a list of "things I want done" if it looks like that's what way our journey turns. I don't think it's pessimistic...but it's the very realistic view of CDH and all the possible outcomes. I have sat and cried many nights writing down that list...thinking of the possibility of losing a baby...I still...STILL hold on to knowing that one day...(probably soon) I will get to hold him and love him with all my heart...The unfortunate thing is I just don't know for how long.

By the way...I'm 33 weeks on Monday..went into pre-term labor on Thursday...They were able to stop contractions...Baby is looking awesome, but now I'm showing signs of preeclampsia...He is still too small for ECMO if needed at birth so we are just seeing which one of us can hold out longer!

We just had the "best" appointment on Wednesday saying that the extra fluid in his body went away and come Thursday afternoon I started contractions...dilated to a 3 already and 50% efface. I've decided this is completely out of my hands...I never in my life thought we would be faced with these kind of decisions. It's heartbreaking.

Again...so sorry for my rambling, but your post really hit home to me...I've been there...in your shoes thinking the same exact things you are going through. Many thoughts with you!

(((HUGS)))....I wish I could help or offer some advice. I really think I was spared not knowing about my son's CDH before birth for I couldn't have handled the worry, the stress, the pain, the fear, just wondering about what was going to happen. I do know that having a child born with a birth defect or a child with medical issues or evening losing a child can be very tough on a relationship. Men handle emotions differently than women, they just do. They want to be the rock for their family and they see us hurting or in pain and they want to fix it. In this case, it is out of their hands, they can't fix it or make things better and I really think it makes them feel horrible. Keep the communication lines open and talk. Josh doesn't get to feel the early bond you have with your child, he doesn't get to feel her kicking and moving and growing. It hurts for him to think he is going to lose his baby girl, before he even gets to make that bond, before he gets to meet her. Sit him down, let him feel that baby girl kick and tell him you can't give up on her, she is still fighting and that you want him to fight for his baby girl.

Doctors are going to be able to tell quickly after birth what the situation is going to be and what you are facing. If the time comes that you have to make a decision on what to do or what treatment plans you are going to take, that you want to be a team. You want to have no regrets and you want him to be with his baby girl and with you.

I hope I haven't rambled, but please know I have seen babies given a very slim outcome and they are now the most healthy children and I see babies with a good outcome predicted, struggle. So much cannot be determined until your baby girl is here. Having hope is one thing that will get your through each day.

We have an amazing dad in IL that is our state rep., Neil Rubenstein and sometimes talking to another dad may help. Let me know if you want his email. He may have ideas to help keep the communication lines open, from a man's prospective.

This is a hard one to respond too, and I guess the only real reason I can respond back is because I do like to be a realist. It is unfortunate what is happening; however, we do know what both outcomes could be during this. You have to yes keep it in your mind , but you CAN'T give up. It isn't fair you have to think extremely positive, because look at all the other babies that have made it... all the other babies that have had it off worse, and STILL make it. Life sometimes throws us curve balls, and it is our job to follow those curves, and get back on track. It would be too easy if everything was perfect all the time, so I have been taking this as a blessing. I feel like this is making me a stronger person, a more humble one, and definitely preparing me to be the best mother possible. If I give up on Gavin, and the hope of his survival everything I've conquered in this life, and everything I have fought for will mean nothing, because everything I have now has been fought for and hoped for, and has come to me. My point in all of this... if you will their survival , and TRULY believe that they will be alright, and they might have difficulties, and small health problems, the power of believing, and hope will rise above all, and that is what ( I ) am forcing myself to truly believe, because I know I have to for Gavin.

That's awesome that you are so close to due date. We found out at 21 weeks about the CDH. I have a 4 year old boy who is always with me, plus three stepsons every weekend. So I understand about feeling torn. I'm a para for 7-12 grade special ed. I have been so worried about going over my allotted time off. But luckily I can do a lot from home and get some comp time for it. You will have to send pictures once your baby is born, I'm excited for you and will be praying for you

YAY!!!! So happy for this...Isn't the practice breathing amazing?! Like I said, one good thing...you get to see your baby A LOT with all of the checking...It's nice.

I should also mention that I'm 32 weeks...It's literally taking it day by day...week by week and hoping to get closer to that due date!! How did your Dr's visit go?! I'll be thinking about you!

We are located closer to Kansas City...it's still 2 hrs away...but we ended up going to Children's Mercy in KC, MO..I'm pretty sure it was St. Francis that was on the list of referral centers for CDH...so you must be in a great place! We found out at 25 weeks and let me tell you that those first few weeks are nothing but doom and gloom...It's good you are starting weekly testing...I started that at 28 weeks as well and that is kind of stressful too...bc one sonogram can be great and the next time not so great....but look on the bright side...you get to see your baby A LOT...it's always reassuring for me. Now I'm going twice a week (1 time in KC and 1 time back home)...I teach 6th grade Social Studies...and luckily my job has been very understanding...I just hate missing so much school. I also have a 1 year old...and it's hard to split my time...Definitely feel torn in a million different directions!

Good news!!! She is growing and practicing breathing!!! That is wonderful news!! Hold on to that postive and keep telling her to fight! Maybe look at the doctor appts. at more of a chance to peek in on Delaney more if they do the extra scans and making sure she is not stressed in any way. Keep fighting Delaney!!! Praying for your baby girl and you. (((HUGS)))

aw thats awesome!!! it's always good to hear that our babies are doing great besides the hernia!!! Don't worry i'm right there with you i'm at 23 weeks tomorrow, and all I have from now until my due date, June 27th, are doctor appointments. Praying for the best for little Delaney!!! Can't wait until we can post about our babies after they're born , and their great progress!!!

Originally Posted by amandaschaefer

I also wanted to add that I'm located in Kansas...pretty close to your neck of the woods! When I was looking for Children's hospitals I was referred to one outside of Tulsa (I'll try to find the information again) and send to you. How far along are you? Are you seeing a regular OB or going to a fetal health center? Honestly, my regular OB here in my hometown and the original hospital where I was referred to for an echosonogram and where they found the CDH just didn't seem that experienced in CDH and always left me feeling completely drained bc I'd always leave with worse news than before. Find a hospital that is comfortable with caring for CDH babies! It's hard but I travel once a week almost 2 hrs away to see a high-risk OB at the fetal health center where I will deliver my son in case he needs ECMO. I teach and my days are dwindling down fast, but at least I know I'm dealing with specialist who will do everything they can for my son! Sorry to keep rambling!

where are you located? I have been referred to St. Francis Children's Hospital in Tulsa for delivery since the CDH has caused her heart to be small on one side and they have the heart specialists right there. I have been seeing Dr. Blake in Tulsa. She is a perinatal specialist. I am 27 weeks and starting next week I will be going to her every week for testing to make sure the baby is not distressed so we can hopefully deliver at full term. I travel about an hour down there each time. How far along are you? What grade(s) do you teach? Are you going to Tulsa for appointments?

I actually just went to Miami hospital this monday after already seeing a specialist. The specialist was the one that actually recommended miami, because they do inuterual surgery there. after hours , and hours of sonograms , and echosonogram they requested that I need to do a fetal MRI. With the regular sonograms they can see pretty much everything that is going on, but for some reason they have a hard time seeing how much of the intestines are actually in the chest, so they just like to get a better picture. Now I have to do something like the balloon for my son do to his lungs being extremely crushed, so anything else they can do to make it easier on them I concur with.

I also wanted to add that I'm located in Kansas...pretty close to your neck of the woods! When I was looking for Children's hospitals I was referred to one outside of Tulsa (I'll try to find the information again) and send to you. How far along are you? Are you seeing a regular OB or going to a fetal health center? Honestly, my regular OB here in my hometown and the original hospital where I was referred to for an echosonogram and where they found the CDH just didn't seem that experienced in CDH and always left me feeling completely drained bc I'd always leave with worse news than before. Find a hospital that is comfortable with caring for CDH babies! It's hard but I travel once a week almost 2 hrs away to see a high-risk OB at the fetal health center where I will deliver my son in case he needs ECMO. I teach and my days are dwindling down fast, but at least I know I'm dealing with specialist who will do everything they can for my son! Sorry to keep rambling!

Oh how your blogs strike home to me...Feeling worn, pulled in a million different directions, wishing for that "ignorance is bliss" type pregnancy again...I feel for you bc I am also there. I just wanted to share with you that I would find a Children's Hospital that will do the Fetal MRI. When they did the echosonograms of my son (who has severe right-sided CDH with liver completely up)...they only found one lung and they couldn't get a clear picture of where everything was...So the news was always very bad after each of the sonograms...I felt defeated and like I needed to plan for a funeral, that there was no hope. It was so heartbreaking to always hear bad news after bad news...Once we were referred to a Children's Hospital they decided to do the fetal MRI so the surgeons could get a better idea of what we were dealing with. That's when they saw 2 LUNGS...Much better news than before...Unfortunately, both lungs are very under-developed..but at least we got some "light" at the end of the tunnel! The surgeons and the fetal health center (in the same hospital) that I see on a weekly basis have now come up with a "plan"...Trust me...this will help ease SOME of your worries once you feel like you can come up with a plan to help your daughter. Many thoughts and prayers your way...Please know you are not alone! CHERUBS is such a great community to find advice/help

(((HUGS))) Kathryn. I hope you have a good appt. and not an appt. to leave you feeling bad. The fetal MRI's will just give doctors more of a whole picture of the baby and will also give more details that an ultrasound will not give, many times it will be clearer on what the baby is facing after birth. But, they are not exact either and some doctors don't think they are necessary. All over the US, some doctors do them and some don't. You have done the fetal echo., so there really isn't anything else you can do test wise. If you want a second opinion, you can always call some of the bigger CDH/Children's hospitals and talk with them. See if you can send your ultrasounds/echo. to them and get their opinion. You would have to go get copies of these from the doctors, which could be a pain. They are your records and you have a right to a copy of them, they may charge you a small fee. In these days, many of these test results can be emailed. Dr. Kays at Shands in FL will give 2nd opinions over the phone, he will call you back if you leave him a message.

You and your little girl will always have a special bond that only you and her will share. I can't imagine losing a child and I am not able to give advice on how to prepare or deal with an outcome like that. I am here to listen, if you need to vent or want to talk. Praying your little girl has grown bigger and stronger since the last visit. Praying for your little girl's miracle.

I love that song. I recently stumbled across it and it is exactly how life makes you feel threw tough times.

(((HUGS)))...my heart goes out to you. Well wishes coming your way. I hope you don't get too sick and all your boys are well soon. We are always here for you if you need somebody to talk with. You can inbox any of us. This journey is truly a one day at a time, for focusing too much on the future or what has happened will take a toll on you. Delaney feels your emotions and stress.....take time for you. Tell everybody around you that you need help. Don't be afraid to ask for help or tell others this is how it is, this is how we have to do things to get through everything. Something to try is to get a journal and write letters to Delaney, write your emotions and feelings down. Find a quite spot and play music for you and Delaney.

(((HUGS)))....praying for strength for you and Delaney.

Praying for you and this baby girl on the way!! How are you doing this week and the baby? Thinking of you.