Friday, April 22, 2011

Meeting the Surgeon....

This has been a post that I'm behind on, and I absolutely hate that, but I wanted to make sure I had all the information right and I needed some time to "decompress" after the appointment itself.

On Monday we made our way to Egleston Hospital, Children's Hospital of Atlanta (CHOA) and met with our surgeon. He had come so highly recommended we weren't in the least bit concerned or even nervous meeting him, that is, until we were there. Everything was so "official." The facility is so nice and amazing but they go to great lengths to check you in each time, complete w/ a hospital bracelet I was told to wear at all times while there and again it was much larger than any office we had been to, we were at a top-notch children's hospital, a bit overwhelming. After check-in, we headed to the 2nd floor (some grandparents in tow with us as well) and we met with our Surgeon's nurse, who we loved and then met with him. It was nice in the fact that no new information was given (he does no ultrasounds just takes the info from our pediatric cardiologis and he just meets with you and prepares you). He told us the scenarios we were looking at for post birth surgery. We do not know which one she will have until she is here. The four different scenarios are this:
1. If she is of adequate size (6.5 lbs or more) and her oxygen level is good, then they will send her home and let her grow a little more, bring her back in 4-6 months and do the surgery.
2.If she is of adequate size and her oxygen level is poor, then they will need to do something for her soon. So since she is of adequate size they will elect to do the permanent fix surgery soon after birth.
3.If she is of small size and her oxygen level is good, then they will send her home and let her grow a little more, bring her back in 4-6 months and do the permanent fix surgery.
4.If she is of small size and her oxygen level is poor then they will need to do something for her soon. But since she is small they don’t want to risk putting her through the permanent fix surgery so they will opt to put in a temporary shunt to help with the oxygen; then bring her back in 4-6 months and do the permanent surgery

So regardless of size it sounds like the critical thing we need to listen for after birth is her Oxygen level. As long as it is high then she goes home for a while, but if it is low they will do something quickly and her size will determine if they can do the permanent fix or the shunt.

This, I'm sure is a lot to you all readers and its a lot to us as we have learned the in's and out's of the process we are going to face. The surgeon answered any and all questions we had and we feel confident in him to do the surgery when necessary. He and the cardiologist we've been meeting with will make the decision after she is here. Thats the tough part, not knowing. We then went on to take a tour of the room she'd be in, and then the recovery area. The nurse asked us if we wanted to see a baby that had had surgery that day and she said it would be easier for us to see it now. I couldn't answer her propertly because of the tears that were starting to stream down my face. I kept telling myself how "lucky" we were to be here considering where we were in January & February of this year, and tried to console myself that way. We continued the tour and went to see a sweet 9 month old little boy that had had surgery that very day. His parents were of course by his bedside and he had a nurse at the end of his bed (each child gets their own nurse at the end of their bed w/ monitors,etc) I hate that this sweet little boy had to be tied up to wires, tubes,etc and was still under anasteshia but he looked pretty good. It wasn't easy by any means, and I stayed composed when we were in there, thank goodness, the nurse "coaxed" me to come a little closer so we could be prepared when our little girl faces surgery. This little boy didn't have what our little girl needs done but he had a murmur that had to be operated on and the parents found out about it shortly after he was born. We are thankful we can be as pro-active as possible and know somewhat of what we are facing.
The nurse again was wonderful and very helpful and the facility is amazing. We feel blessed to live in a city with top-notch healthcare that so many people have to travel to. It was just the "reality" of it all. I had a rough time that night & next day, but Jimmy kept saying "they can fix her, and they will." It wasn't easy for him either, but he has been a rock of strength. Again, all week I keep telling myself to re-visit my January 21 posts and remember the sobbing and Jimmy helping me literally get out of bed those days and knowing how I'd have given ANYTHING to be told then that it's a defect we can manage. So, as hard as things are to see and face right now, we are ever so thankful for making it this far. Surgery on anyone is scary, surgery on a tiny infant scares me greatly. We keep praying without ceasing for healing, the surgeons and doctors. We pray for her to continue to grow, grow, grow and for upcoming appointments and most of all this week we've prayed for peace. The anxiety has been high, and we are slowly coming back to peace, which is a welcome thing!
As we approach Easter Sunday, I keep thinking of the hymns we'll sing. I have thought of this every Easter since I was a little girl, but knowing our chances of singing "He Lives" or my favorite "Because He Lives" is great. I love old hymns and love to stomp them out on the piano any chance I get. I have always loved 'Because He Lives' and this year our Easter theme has been a verse from if "We know we can face uncertain days because He lives." And we do absolutely know that and trust that and we cling to it now more than ever. Verse 2 starts with how sweet to hold a newborn baby.....and it goes on to say 'but greater still the calm assurance, this child can face uncertain days because HE LIVES'<
In this Easter and this season of our lives, we will rest in the calm assurance, that we are all covered today and everyday by the power and love of the one that gave his life for us. We are reassured and know that any uncertain day, now or that is coming, can be faced because He rose from the dead to live for us. To us, there is no greater calm assurance than that....

With much hope, faith and love,
Jennifer and Jimmy

Tuesday, April 12, 2011

Cardio Follow-Up

Another check-in :). I was going to wait and do the 2 appointments this week together, but you all are just SO darn sweet by emailing, texting and posting wanting to know about yesterday's appt. That truly makes us smile and feel SO blessed knowing that so many people are praying for our sweet little girl and wanting an update.
I am pleased to say yesterday's appt with our pediatric cardiologist went well. The Yearty grandparents made an appearance at this appointment, and while the ultrasound really just shows the heart at the cardiology appointments, they were intrigued. We absolutely love our pediatric cardiologist and the grandparents felt the same. He spends so much time with us, draws us diagrams, explains everything in great detail. Things are still the same, with the Tetralogy of Fallot diagnosis and we'll await for her debut before they know exactly which type of surgery they will perform and when. That will be a stressful time as well, but we take it one day and thing at a time. Try not to borrow trouble for tomorrow. We are thankful for the good appointments, we feel so blessed each time we get to go and it's good news. We loved seeing the sweet face in 3-d last time (below) and we've definitely gone from grim to hopeful. Still nervous? Absolutely! But I know that goes with just about any pregnancy. And I've always erred a bit more on the cautious side in life. :)We have another appt with our regular OB this Thursday and then we meet for the first time, the surgeon at Egleston next Monday the 18th and back to the specialist the 27th. Lots of April appointments with lots of different people, we are so thankful for the staff and doctors we have met on this trek, they have all been wonderful thus far.
Thank you again for everything and most of all the prayers and continued prayers, complete strangers have lifted our family up, and we just are in awe of the amazing people that are graciously doing that. We still have a few months to go, 3 1/2 to be exact :). God is at work in this little one's life and we can't wait to see it unfold.....thanks for being a part of it all.

Thursday, April 7, 2011

Celebratory Weekend!

Hello Everyone! Just checking in after our most recent visit with our specialist.
We had an overall good visit. It's so hard to relax in these appointments, with such long ultrasounds and not knowing what they are or are not seeing. It can get downright overwhelming at times. However, this hour long appointment was our shortest appointment with the specialist yet! We saw our sweet little girl, she showed us her 5 little fingers and waved at us, as well as moved around quite a bit. I'm starting to feel her move on a daily basis and hope Jimmy will be able to feel her soon. We are at 23 weeks and feel blessed to be this far! The only thing that the specialist saw (besides of course our heart defect which we follow up with the cardiologist) was that her head was measuring small and they would monitor that. The Doctor did go on to say that not everyone has a big round head. I looked at Jimmy :) and I'm not sure he appreciated that too much. :) She said this along with the heart defect could be a sign of Digeorge Syndrome, but again, we will not know that until she is born. We decided not to do the amino because if she has Digeorge, she has it and it will in no way change the course of the Doctors treatment from here on out, so we saw no use for it. The Doctors said it was only if we wanted to know. We love her regardless. Digeorge can be a broad spectrum. Some people live their entire lives with it and have no idea, some have stronger traits of it. There can be slow learning math skills and possibly some behavior skills, but we could also chalk those two things up to her genetics. :) We just continue to pray without ceasing (1 Thess. 5:17), that our little girl is healed, that her heart is fixed and that she graces us with her debut at full term.
We were told that the heart is structured and it just grows but doesn't change structure, while I absolutely trust and believe Doctors, I know our God is bigger than that and I actually pray that her heart is wholly healed. We have not because we ask not (James 4:2), so I am going to keep asking. As mentioned below, I'm trying so very hard to pray THROUGH the faith, with undoubtedly knowing that He, the healer, the maker and giver of life, can heal our sweet little girl. We are beyond blessed to continue to get good news and with each appointment, we have the anxiety that we won't receive good news, but each appointment gets better and better. Going from such grim prognosis to some hope is a miracle in itself! The hygroma is still gone, her neck is a little "thickened" from where the hygroma was, but the fact that it's gone is again another one of God's miracles. We thank him for that so very much.
Thank you all for the intimate, precious emails you sent after the below post. I had no idea it would generate such great conversation. Believe me, I'm a beginner in this praying "through the faith" thing, but it'll change your prayer life!
Please continue to pray for our sweet little girl, and for our upcoming appointments. We have four more appointments this month, and all of them are with different doctors. I will update after each one. The next one is Monday, April 11th with the pediatric cardiologist to follow-up from his first diagnosis (Tetraolgy of Fallot) We cannot thank you enough for your continued prayers, posts, scripture you share and again, opening your hearts on this journey with us.
We had celebrations galore this weekend! After our appointment early Friday morning, the wedding festivities of Lindsey & Mike began! Lindsey is Jimmy's sister, and also a friend of mine before I even really "knew" Jimmy.It was the.most.perfect.weekend.ever! I have been blessed enough to be a bridesmaid a few, 15 times in my life :) and it was an honor to stand beside Lindsey & Mike, I even "ugly cried" and DID NOT want to do that :). Her bridesmaid luncheon on Friday & rehearsal dinner that night were so nice, so genuine & sweet and just voerall outstanding. Not only were they each super nice events, they were so darn sweet! The toasts at each one were some of the sweetest I have ever heard. I had read that very morning about Paul and his writings on love and marriage and it was no coincidence (yet again devotional coincidences-I think not) that Lindsey & Mike's marriage is blessed. They have taken some wonderful steps in pre-marital retreats, and absolutely entered this sacred covenant with two of the most precious hearts. There was never a moment of stress before or during the weekend. Her planning was so organized and enjoyable (yes it can be-hers was!) Everything from even their surprise proposal in September was perfect.(I am a huge believer in surprise proposals and I don't think that I know of another bride that was THAT surprised). The wedding day was gorgeous, God graced us with beautiful weather, everything was in bloom, the reception was indoor/outdoor and it kept being referred to as "Father of the Bride" like and there is simply no other way to put it other than that. It was prefect. The dance floor became the dance room by the end of the evening with their terrific band. It's always nice when people dance at weddings but the ENTIRE room was filled to the brim that night of all of the "rock star dancers" Jimmy being one of the lead ones (video to come for sure!) It was a blessed event, a sweet and precious weekend from Friday to brunch on Sunday. We know they are enjoying their amazing honeymoon in St. Lucia!
A quick pic from our appointment. We were asked if we wanted 3-d pics, we hadn't even thought of having that done, knowing its an extra expense, but the tech told us that was one 'good' thing about seeing a specialist, (if there is a good thing about it) that they have the machine for medical purposes so why not. She took 3 cute shots of our sweet girl. I think Jimmy was astounded at the sweet face we saw on the screen. Thank you prayer warriors for praying and continuing to pray for this sweet face. Enjoy!

And one more....