So our much awaited 36 week ultrasound has been completed. I always hold my breath a little going in, because this CDH road seems full of suprises- and I was not disappointed in that thought today.
Up until today, the only problem they have found with Andrew was the CDH. I had chosen to not do an amniocentesis only because Gene and I were not okay with having an abortion should the results show a syndrome or aneuploidy. (I hold no judgement on those who feel differently- this is just the way Gene and I feel for our own family) Our fetal ECHO was normal and there were no other soft markers for down syndrome or other associated syndromes.
Today, Andrew's left lateral ventricle is showing mild ventriculomegaly. Basically, this means that he has more than the normal amount of cerebrospinal fluid in his brain. There could be several reasons for this: syndromic association with the CDH, aneuploidy, his large head size or a normal variant. Yet another frustration going down this road- there is no way to tell which it is until after he is born. They said that because he has CDH and they are doing frequent ultrasounds is the only reason it was detected since it did not show up at our 2nd trimester anatomy scan or any other ultrasound scan until today. For those of you that are not aware, for CDH babies that have an associated syndrome, the prognosis is almost always fatal. For isolated ventriculomegaly, the outcomes are usually pretty good with maybe a slight initial developmental delay, but Andrew's is not an isolated problem since he has CDH. The other news is that his stomach is now shifted to the right chest along with his heart. They were unable to obtain good views of his liver position.
We received two different opinions today on the birth plan: one doctor said an attempt at a vaginal delivery with a low threshold for switching to a c-section was reasonable, the other doctor thought a scheduled c-section would be better. They are going to discuss our case in conference next week to see if the entire group can come up with an agreed plan. I was told to stop taking my procardia at this point as well. So we may not even make it to next Thursday's conference. At this point it is all well beyond my control.
It makes me so angry that my child has this horrible condition. It's not fair that anyone has to go through this agony. I want so much to believe that God has a greater plan in all of this, but my faith has never been tested more at this point. So what do I do from here- I get the crying out of the way and maintain the most positive attitude I can for Andrew's sake. I will fight this battle with him and pray for strength and peace and comfort for Gene, Andrew and myself along the way. I don't feel like talking to anyone on the phone today- I need some time to deal with this- but please let us know you are thinking about us through email and posted comments. Thank you for all the prayers and comments- there are no words to express how significant they are to us right now!
- Becky
SURGEON CALL....
9 years ago
just wanted to say i was thinkin of you all xx
ReplyDeleteI know this is a hard time right now- with the anxiety of birth to the anxiety of his defect. You will be strong for that is all we truly can be. We are praying for you and your family that all goes well!
ReplyDelete((Hugs))
ReplyDeletemy 2 sense- have the birth the way YOU want. Have you checked out cdhsupport.org?
Thinking of you and baby Andrew
Oh Becky, I'm so sorry you're having to go through all of this! Just know that I am praying for you and Gene and for sweet little Andrew. Big, big {{Hugs}}
ReplyDeleteBecky-
ReplyDeleteI am so sorry that you have to go thru this. It is awful and I wish none of us had ever heard of CDH. I don't want to say "don't worry" because I know first hand that you can't not worry. We will be thinking about you all and praying that Baby Andrew amazes us all--it happens all the time :0)
Becky,
ReplyDeleteWe are praying, really praying, for you and your family. CDH is so unpredictable, so try to stay positive. Out of the worst statistics come some pretty beautiful babies. Duke is awesome,they facilitated our miracle and will give Andrew the very best chance!
~Beth (mom to Katie RCDH 4/9/09)
Ugh! I just want to give you a huge hug. I can't say anything that will make you feel better. We've been there, so at least find comfort in knowing you are not alone. During one of Carter's last prenatal echocardiograms, they said he had several heart conditions and that if they were present at birth, he would not be compatible with life. They would do nothing to save his life, because there was nothing that could be done. We left Duke completely devastated that day. I didn't even post about it or tell anyone except my very best friend. We cried and then got over it, just like you will. We prayed a lot and just maintained a positive attitude. And when the Cardiologist came to see me after he was born, to report that his heart was 100% OK--there were absolutely no problems--they had just disappeared, I have never been so happy to see a Doctor in my life. Hang in there and DO NOT lose hope.
ReplyDeleteWhen you are up for it, call. Anytime. We'll be thinking about you.
-Kellie & Brad
I know it's hard but try and stay positive. We are thinking of you and will keep you in our prayers.
ReplyDeleteI wish I could run down the street and give you a hug. I love you, and am praying. Little Andrew, your Aunt Katie says your a little miracle. I look forward to holding you and telling you how much your parents love you!
ReplyDeleteKatie
I would give anything if you did not have to take this journey. Our heart felt prayers are going up continually for strength for the three of you. Please feel our arms around you and call anytime, day or night. Love, Mom & Tom
ReplyDeleteBecky,Gene and Andrew,
ReplyDeleteSparky and I are keeping you in our thoughts and prayers.
Kat
Know that your tears are not alone. I hate that we're so far apart right now, but know that we love you all so much. I wish too, that I could give you a big hug right now. I pray that you'll find strength and peace in going through all of this. Love you lots and I'm all ears, anytime you need someone to listen to you. Love, Sue & Bryan
ReplyDeleteThinking of you during this difficult time. CDH is so unpredictable. Sometimes the worst case scenarios do the best and the best do the worst. My daughter was given a good case scenario via ulatrsound and ended up becoming an angel. I hate that anyone has to go thru this journey. I am so sorry you are going through this!
ReplyDelete--Beth
houselogfamily.blogspot.com
I am so sorry you guys have to go through this. It isn't fair that anyone should have to suffer. There is no doubt that you will pass this test of God's and come out stronger and more faithful because of it. Know that I am always praying for you and your family. (((hugs)))
ReplyDeleteDearest Gene, Becky and Lil Andrew:
ReplyDeleteWe love you all and wish we could be with you all now. Ya'll have and will continue to be in our thoughts and prayers. You both have been so strong and very brave. Keep loving each other. Love you both so very much.
Mom and Dad
Praying for you guys! Just remember that ultrasounds are sometimes unclear. I know it is hard to stay positive when doctors tell you what they think is happening, but miracles happen everyday- many to CDH babies. We will continue to keep your family and Andrew and in our thoughts and prayers!
ReplyDeleteAshley
Oh, Becky and Gene...I can't imagine the pain you're going through. I was so hoping the ultrasound would bring good news today. We too will pray for a miracle.
ReplyDeleteBecky, Gene, and Precious Andrew,
ReplyDeleteWe have been following your progress since the beginning, and have been taking our prayers and petitions on your behalf to our Heavenly Father who loves you more that you can ever comprehend. We cannot imagine how difficult this road is but take strength and comfort in knowing that God is in control. You all have our continued prayers for the wonderful miracle of Andrew. Our Love, Alan & Jeri O.
Dear Becky,Gene and Lil Andrew
ReplyDeleteI was just thinking about you all and wondering what Grandma would say to you now and it came to me that she would put her arms around all of you and she would say " let me give you something that my mom gave to me when I was a little girl and very afraid. Isaiah 41:10 Fear thou not for I am with thee, be not dismayed for I am they God, I will strengthen thee;yea I will help thee; yea I will uphold thee with the right hand of my righteousness.
Hold tight to that promise for God loves you very much and so do we.
Love Aunt Sandy and Uncle Ken
I know what you are going through so Don't ever lose HOPE!!!! Gabi's prognosis was not great but she defied all odds and is doing so well. CDH babies are amazing and have such strength! My thoughts and prayers are with you!
ReplyDeleteHUGS
Joanna(gabriela-monteiro.com) LCDH
Dear Becky, Gene, and baby Andrew My heart breaks for the process you are going through. I pray daily God will give you each strength, grace, wisdom and mercy. I especially ask God to help you feel his love. Remember, our God is a mighty God, able to work mighty miracles; he alone is in control, able to overcome the storms of life, especially the impossible ones. My prayers continue with you.
ReplyDeleteThere is hope. We went through this with our granddaughter, Claire. I know many babies die with CDH, but it's important for you to know that there are survivors. www.babyclaire07.blogspot.com and http://williamsfamilytn.blogspot.com/. She is now two years old and doing fine, but like you, we were so scared as the day approached for her to be born. My thoughts and prayers are with you, your baby, and your family.
ReplyDeleteKathy
Dear Becky and Gene,
ReplyDeleteWe've had you in our thoughts and daily prayers since learning of your and Precious Andrew's struggle. There's no words to effectively comfort, but I know it is such an awesome humbling and initially frightening realization that no matter how hard we try, hope, or pray, it is only God who decides what experiences we are to go through and "only God knows why". But if we hold onto that belief deep inside us that always finds a way to connect to God, we will later learn why it was to be as it is. Wish I could give you a big hug. Let us know through your Mom or blog anything at all that we can do to be of assistance to you through your particularly challenging journey.
Love,
Elizabeth and Larry Hilpert
Becky,
ReplyDeleteYES, CDH SUCKS! I think I've said that a million times since finding out Jaime had it on Dec. 30th, 2008. We wish you the best...vent any time you need to! The journey isn't an easy one, just stay strong for Andrew. Perhaps Jaime can give you some hope that miracles do happen-he had a 20% chance of survival!
Get some rest...and try not to let the ultra sounds get you down...they can be wrong, you know! ;-)
Hugs,
Sheryl
You all will be in my prayers, prayers for strength and comfort in the weeks to come. Stay strong and remain positive for Andrew and fight this fight with him! Hope when the time comes you have an easy labor and delivery or a by the book c-section and you are soon with your little boy. Fight Andrew fight and amaze your mom and dad!!
ReplyDeleteHugs, Tracy Meats, Ian's mom born with a LCDH on 4/3/04
Dearest Gene, Becky and Lil' Andrew,
ReplyDeleteOur prayers go out to you daily, as do all the prayers from Holy Cross. We wish we could be there with you, and just hold you for awhile. Keep the faith, and know that you are loved.
Uncle Carl & Aunt Laurie