Life is not measured by the number of breaths we take, but by the moments that take our breath away.

Friday, June 3, 2011

Baby Update

We started this blog a couple of years ago with the intention of using it to keep a "journal" of sorts of our family, and also to keep our extended family updated with pictures. Amos thought this would be a good way to keep all of our friends and family updated on the progress and changes with our baby. I haven't been very good about updating it in the past, but am going to try to be better this time around:) First thank you so much for all the text's, call's and email's. If I haven't returned your call, it isn't because I don't want to, it is simply because I hit a point where I am mentally "toast" as Amos says. We love you all and can't begin to express our appreciation for all of the prayers. So please don't hesitate to contact us! And to whoever mowed our yard-you made my husband's day/week/month/year! I don't know how anyone would get through something like this without first their faith, and then the support and love of their friends and family! We truly don't mind updating all of you and need the prayers! Also, for those who have asked, at this point we aren't too worried about privacy so if someone asks you what is going on feel free to share. Hopefully this blog is an easy way for them to stay up to date. We would ask you to remember that Anastacia has not been told anything at all about any of this, and please if you are around us "keep it positive":)

A quick update to bring everyone up to speed. Last week at our "big" ultrasound, where they scan and measure all of the organs and body parts a cogential heart defect was detected. We weren't sure what this meant-how big, how small, was it fixable? Our high risk doctor referred us to a local pediatric cardiologist here in Tulsa. On Thursday we had a fetal echo cardiogram and met with her. We found out that what they believe they are seeing is a pretty significant heart defect. At some point I will update more on that. But the just of it was it was significant, there are surgical options but also could be a very long road. Immediately we went down the road with her (in as nice as way as possible), was Tulsa the best place for us to be. Logic told us that when looking at just the numbers, yes they may see these type of case's here, but how many? The conclusion we came to, was if things were even more complicated at birth they would end up sending us out of state. One of the options was St. Louis Children's hospital. We immediately focused in on it-the biggest reason being we are blessed to have a support system of friends and family in St. Louis after living there for several years. After some research as well we learned they were also one of the "top" pediatric cardiology hospitals in the nation. We read case after case that had positive outcomes. Late Thursday we contacted Children's and were immediately impressed. We were put in touch with a nurse coordinator who took our history, asked us to fax records and she would get back with us on Friday. Friday she called and had four appointments set up for us on that following Wednesday. Huge praise! So we were off to St. Louis for a few day's. We ended up taking Anastacia with us and used some extra time to escape for a few days as a family. We stayed with a dear friend who is like family to us, Anastacia calls her "my" mimi:) It was wonderful to have a break from the chaos and be able to focus and regroup as a family. To our friends/family in St. Louis-please don't be offended if we didn't contact you while we were there. We desperately needed time together with just the three of us to focus on our family. We were blessed to have some of our dearest family friends from Owasso in St. Louis visiting family who offered to help with Anastacia. Their daughter is one of Anastacia's best friends and also the only family she has spent the night with other than grandparents. So we met them early Wednesday and Anastacia spent the day and headed back home to Oklahoma with them. She was such a trooper. Even though we haven't told her anything about what is going on, we have had a few meltdowns that are completely not "her". So I know she can sense something is going on. But Wednesday morning, not one tear about leaving Momma and Daddy:) It has been so amazing to watch how God keeps arranging the smallest details for us, from appointments to help from friends.


We started our day with a very detailed and long ultrasound and then a consultation with Dr. Longman. Immediately again we were impressed. They had a high risk doctor who just read the ultrasounds all day. At this ultrasound a few other concerns were brought up outside of just the heart. The biggest being the baby is measuring small for his age. Oh, he is a He:) We had lots of questions but knew that next we were meeting with the maternal and fetal medicine doctor and would be able to get into more detail then.

The next appointment was with the maternal and fetal medicine doctor. First we met with Dr Harper a fellow on staff and she walked us through everything. Once again we kept hearing "baby is very small" and that this could be an indicator that something else is going on. It also could just be he is measuring small. Amos interrupted her at one point to say "thank you", because she was the first doctor to really slow down and take the time to fully explain all of our options and why we should consider certain things. After meeting with her we then met with the attending Dr. Shanks. He was very good also and we connected with him very well. He again went over all of questions. After meeting with Dr. Harper and Dr. Shanks we decided to have the amniocentesis done to rule out or rule in a chromosome or genetic defect. We had talked about getting the amnio done in the past, but it had always been presented in a way that there wasn't much advantage to us other than "knowing" and then "terminating" the pregnancy was brought up-that is just not an option for us. So having someone walk us through why it was important to have the knowledge of the chromosomes so we could plan after birth was huge. They were able to rearrange things to get us in right then for the amnio.

Our next appointment was to have a fetal echo cardiogram done. The technology was amazing. We were also impressed with the Dr. because he specialized in fetal echo's and had a very thorough knowledge of what we were looking at. The echo took a couple of hour's and then we met with Dr. Johnson one of the pediatric cardiologist's on staff at Children's and the same doctor who had been looking at and studying the echo as it was being done. He was able to get pretty detailed as to what they think is going on with the heart. IF it is just a cogential heart defect we would have surgical options starting immediately after birth. We would deliver in St. Louis and start the process there. There is also a chance things could improve some between now and birth. However it was made very clear if one of the chromosome or genetic defects comes into play this could change things drastically.

After a very exhausting day and some time to decompress we are basically at a crossroads. On Tuesday we will find out if any of the major gene deletions are present and if our baby has a missing 13, 18 or 21 chromosome. Which if any of them are missing then it would not be a good prognosis and we would have some very tough decisions to make about care of the baby after birth. If all are present and we are just looking at the heart defect, then it still will be a long road, but the prognosis is a lot higher. At this point Amos and I are trying each day to put it all in His hands. As my sweet husband says it is completely out of our control at this point. God has the ability to heal our baby any time and we have to trust He knows what is best. We are taking it day by day and focusing on our family. As I put it, trying to have some "normalcy" after the roller coaster ride we have been on. Please keep praying, we can feel your prayers every moment of every day and they have given us both such peace. We love you all!

3 comments:

Becky said...

Oh, Jennette, I have been in and out of town and had not heard any of this. I am so sorry that your family is having to walk this road. You are definitely in my prayers. So thankful for the provision you have seen already and for the wonderful care you received in St. Louis. Praying for God's peace and comfort for you and Amos, for 'normalcy' for Anastacia, and for healing and God's protection of your sweet baby boy.

mfamily6565 said...

I am so sorry to hear about these struggles. I can hear your courage and your faith throughout the blog. I am definitely praying for the whole family and for this little guy who is created in God's image. May He give you strength and hope each day.

tavobrib said...

You have such a way with words...I put off reading the new postings on the blog knowing they would make me cry. You are both such an amazing couple and what an amazing family! I love you more than I think you'll ever know. I also know that God is with you and your family. The path he has chosen for us it not know to us but he knows what he is about. A book that I'm reading by Matthew Kelley quoted John Henry Newman and for some time I've thought about what is written, "God has created me to do him some definite service. He has committed some work to me which he has not committed to another. I have my mission. I may neverknow it in this life, but I shall be told it in the next. I am a link in a chain, a bond of connection between persons. He has not created me for naught. I shall do good-I shall do his work. I shall be an nagel of peace, a preacher of truth in my own place while not intending it, if I do but keep his commandments. Therefore I will trust him, whatever I am, I can never be thrown away. If I am in sickness, my sickness may serve him. In perplexity, my perplexity may serve him. If I am in sorrow, my sorrow may serve him. He does nothing in vain. He knows what he is about. He may take away my friends. He may throw me among strangers. He may make me feel desolate, make my spirits sink, hide my future from me-still, HE KNOWS WHAT HE IS ABOUT." I love you both! Tricia