Today we went to CHOP in Philadelphia to get a second opinion on Bennett's heart defect. Let me start by saying- I already love this place! They were so nice and really impressive. We had the girls with us, which is always a little stressful but they were very accommodating- I guess it is a children's hospital so they are used to children and how they can act.
They did another fetal echocardiogram and then a "team" of them came in to talk to Mike and I and the girls about what they saw. They explained how the normal heart works and what happens when babies have AVSD's (Atrial Venticular Septal Defects). The diagnosis remains the same as before-AVSD. No big surprise there. They did see a leaky valve, which the cardiologist last week did not mention but they said it is very common with this type of defect so it's not like they are seeing something alarming- although anything leaky, especially when you are referring to the heart, is alarming to me! I do not like the word leaky!! Anyways, they want to see me in 6 weeks or so to keep an eye on the leaky valve to make sure it does not get worse- they don't suspect that it will. We will also be able to tour the ICU where Bennett will stay after his surgery and the step down unit when we go back.
We talked about a time line for Bennett's surgery and I asked if he is born at the end of May- hopefully no sooner- and they prefer to do the surgery between 2-6 months, could we possibly look at a August-September time frame (Bennett would be right around 3 months)? I worry a little about going to 6 months because it will be November then and I want to avoid cold and flu season and being in the hospital. They agreed and said right now that would seem to be a good time to do the surgery but of course we will need to wait and see. We have some weddings coming up later in the year and we would love to be in the clear as far as surgery goes by the time those roll around which it sounds like we will be.
I am trying to stay positive about all of this but sometimes it's just really hard. Bennett seems so peaceful right now inside of me, kicking away just like any other baby but I can't help but worry what it's going to be like for him when he's on the outside. I just wish this didn't have to be so complicated but there is nothing I can do to change it so I will continue to remain faithful and know that God has a plan for us and Bennett. There is a wonderful and simple saying I saw from a blog friend of mine - "Let Go, Let God". This has been my m.o. through all of this and really ever since we had Ainsley in the NICU when she was born. This is all in His hands because I know I cannot take this all on my shoulders. Alright, enough feeling sorry for myself! Thanks for reading and for everyone who is praying for us! We will continue to pray, as we do every night with Ainsley, for Bennett to be big and strong when he is born and for God to heal his heart.
{{Adrienne}} Have you talked with Angela (blog is The Amicks)? Her little one had OHS. She'd be a good resource for you.
ReplyDeleteHi Adrienne - I stumbled across your blog today and are so thankful that you're writing it. I'm just behind you - 23 weeks tomorrow - and pregnant with our 4th little girl. I didn't do the amnio to solidify a DS diagnosis, but do know that she has the nuchal fold (DS marker) and the AV Canal Defect as well.
ReplyDeleteToday is my first day of internet surfing about any of these conditions. I've been too sad, overwhelmed, scared and in denial to research before. I've bookmarked your site and will continue to monitor your unexpected journey as we walk out our own.
You can find us at experiencinghisblessings.blogspot.com, if you're interested. It looks like you're a professional blogger and I'm certainly not, but perhaps we can support each other through the next couple of months...
Katie
Hey .. glad you got confirmation of everything. Nika has a leaky valve too ... try not to worry and let's just hope the leaks don't get worse.
ReplyDeleteYou are doing so well with everything, but you still have to allow yourself to experience the emotion of everything and that is good. Have you met anyone from the DS community up where you live?
Bethany- I have met 2 people and I'm about to email a third that lives 5 min. from me so it's a start. No one in my shoes as far as still pregnant but that's okay.
ReplyDeleteGlad to hear you liked CHOP...it has to feel good to be confident about that. Love your M.O. too! The only way we got through it all was to give it to God and leave Lily in His hands. The last thing I whispered to Lily before they took her into surgery was that even though I couldn't be there with her, Jesus was right there holding her hand. I truly took comfort from that!
ReplyDeleteWe will continue to pray for you and your entire family.
Happy to hear you had a good experience at CHOP. Matthew had a leaky valve as well when he was born (in addition to a VSD). At his last cardiology appt they no longer saw the leaky valve. However I am with you, leaky always made me nervous. I love your positive energy and sharing your real emotions. It's all normal and so many have shared similiar thoughts and feelings. Prayers continue for you, Bennett and the family!
ReplyDeleteAdrienne...so glad the trip to CHOP went well...and like Bethany said...you need to allow yourself to have your days! Days that just get so overwhelming is tough! Know that once little Bennett is placed in your arms for the first time...all these unsure feelings are going to melt away...I can remember those days when I didn't feel strong enough...but you do get through it...Heck..I still have my days...that is just reality. But I truly love my little Brayden with all my heart and wouldn't change a thing about him. I will continue to pray for you all as well and for the comfort you need. You have to allow yourself to let out some tears...it will make you stronger and you will feel so much better.
ReplyDeleteThank you for the updates!
ReplyDeleteYour words are beautiful - I cannot even find the words to respond (without feeling a little silly)! Like... me give you advice? What am I on???
So... I will just say - good luck. I am thinking of your journey often, but know that it will be ok for you and for Bennett. It has to be ok - because when Love is involved it is always OK.
Benjamin's OHS was in early October (the 3rd), and we were glad it wasn't any later b/c of cold/flu season. But he did just fine. He does get synagis shots (RSV protection), and Bennett might, too. You should ask. They are given once a month for five to six months (Octoberish to Marchish).
ReplyDeleteI'm so glad you liked CHOP. We loved Vanderbilt and felt very safe there. :)
I found your blog a little while ago and am so amazed at the strength you have! I have a little boy with DS who was born in June of 2007. I had a journey similar to yours in terms of diagnosis. I was no where near where you are in terms of acceptance. I worried so much about so many things. What would he look like, would he be healthy ... how would his birth impact me, my husband and my other son.
ReplyDeleteWhen Joel was born I was amazed at how beautiful he was and over the last year and a half he has brought such joy into our lives. God's plans are often different than ours but so much bigger and better than ours.
I am looking forward to following your blog over the next while and of course seeing pictures of your baby boy!
Dear Adge, I am glad that you and Mike liked CHOP and feel comfortable with the enviroment. I just wish that I could be with you to sit and hold your hand or give you a big hug and wait on you hand and foot-get you a snack or a coke or could just be by your side to try and comfort you when you get a little bit down about the future. I am so grateful for your growing number of friends who have been where you might be going and report back that "the weather's fine here" and that "God is already here!" Isn't it incredible that people from all over the country and even outside of our country, are praying for our Bennett and that we are praying for their children, as well? It is such a privlege to join in the struggle that others face by praying for them! You are loved, my precious girl, Mom
ReplyDeleteI am so happy that your visit to CHOP went well and that you feel comfortable there. I am thinking of you - on the one hand it is so great that you are going to be so prepared even before having Bennett but I can completely see where it has to be so hard knowing all of this before he is even born... especially when he is just kicking inside of you just like your girls did and it can't seem real that everything is going to be a little different.
ReplyDeleteI think you are doing a great job of staying positive and it really will be ok!!! :)