Tuesday, April 7, 2009

Baby Update

First, thank you all for your understanding and patience while Kevin and I have been going around and around getting answers and figuring out where we go from here.

Second, I am not posting here to avoid talking to anyone. Please do not feel any less of our friend if you are reading this instead of having personally talked to us. This is quite honestly the easiest way for me to communicate without having to tell and retell what is going on.

Third, thank you for caring and praying for us even if you were not exactly sure why. Please keep praying...we need prayers. I will try and explain what I know but I will of course leave things out.

March 18 -
I went to my regular scheduled appointment at Maternal Fetal Medicine. I am seeing the high risk perinatologists because I will be 35 when the baby is born. That is the only reason. I have no other risk factors making me high risk. Without this appointment, we never would have caught the problem. As Kevin and I were watching the screen as the ultrasound was being conducted we did not notice anything unusual. Seemed like all was fine...except the sonographer kept looking at the heart...for a very long time. The doctor came into the room twice to see the screen as the sonographer was looking as well. When he came back for the third time he was there to talk to us. He told us there is a problem with the baby's heart. A very serious problem. Since we were in shock he wrote down what he suspected was wrong...aortic atresia, ventricular septal defect and then dandy-walker syndrome. I am very thankful Kevin was with me. The perinatologist could not really answer the few questions we had...Kevin asked who could. We were referred to All Children's Hospital in St. Pete. I know most people (including me) have no idea what this suspected diagnosis means. Here is what it means...when discussing options with the perinatologist his first suggestion was termination. We were stunned. The names sounded horrible but what are we really looking at????

March 23 -
I return to MFM for a follow-up appointment and for an amniocentesis. This time we saw the head perinatologist. He is supposed to be the best and he is. He confirmed the original diagnosis and did the amnio. He put a name and meaning to the diagnosis. Hypoplastic Left Heart Syndrome. This is the worst of the worst of congenital heart defects. He said his opinion was that there would be no functioning left heart at delivery. Without major open heart surgery the baby would die. I followed through with the amnio, mostly to get answers.

March 24 -
Kevin and I had the first (of what will become many, many, many echocardiograms) on the baby at All Childrens Hospital. We were not too hopeful for this ultrasound or our meeting with the Pediactric Cardiologist. After an hour the sonographer was finally able to get some good clear shots of the baby's heart....stubborn little bugger kept putting hands or arms across the body covering the heart or turning completely around and hiding. We had our consultation with the medical director for the cardiac care team. This doctor is awesome. When I say awesome...I mean he is one of the best in the country if not the world in his field. He looked at the baby's heart and diagnosed...Double Output Right Ventricle. Not the worst of the worst but still an extremely serious congential heart defect. Here is the difference...in HLHS there is no left ventricle in addition to the aorta and aortic arch not being fully funtioning/attached. In DORV the aorta and aortic arch are fine it is just that there is only one ventricle to pump the heart. DORV does not require full on open heart surgery at birth...small relief. DORV does require a sequence of 3 surgeries...one soon after birth to place a shunt between the main arteries to keep blood flow to the lungs, one around 6 months to replace the shunt with a surgical fix between the main veins and the last one around 2 years of age to complete the full surgical procedure that will allow one major vein to connect to the heart and one to connect directly to the lungs. Eliminating the need of the one ventricle heart to pump blood to both the lungs and the rest of the body. In no way is this a cure. The baby's heart will never be normal. This is a way to provide a way for the baby to grow and develop and have a relatively normal life. Predicted life span is around 40.

March 25 -
I get the results from the rapid testing from the amnio. There is no indication of a chromosonal issue. All the chromosones are there. No downs syndrome, no trisomy.

April 1 -
I get the full panel results from the amnio. Confirmation that there is no chromosonal problem.

April 2 -
Kevin and I spoke to the cardiac team nurse with some additional questions we had. We got the answers we were looking for. There are still major risks to any and all all of the surgeries. There is still great risk of problems and complications while the baby is in utereo. Our management and treatment plan all hinge on my carrying the baby to full term with no chromosone issues and normal development of the baby.

April 6 -
We have our next appointment with the perinatologist at MFM. Have an ultrasound and discussion with the head doctor again. He scared the crap out of us. All hope I had from the doctor at ACH was gone. MFM doctor says everything looks the same (which in this case is good) but there are new studies showing brain injury in children with these types of heart defects and surgeries. The doctor at ACH touched on this as well but the MFM doctor implied there could be many more problems that ACH was not telling us (like cerebal palsy). Doctors not on same page...really not good...how do you decide which expert you trust the most.

April 7 -
Spoke with the ACH nurse again. She confimed what we had learned on our first visit. Other than the heart, everything else looked as if it was developing normally with good blood flow to the brain. Grrr....
Got the last of the amnio results...a sequence with a small deletion on the number 22 chromosone that shows quite frequently with heart defects...and again...no problem. There is no 22 deletion.

So. Here is what we face. A baby with a very serious congenital heart defect. One of the best pediatric cardiac teams in the country to manage and care for the baby. A very early diagnosis allowing for better monitoring of the situation. Two experts that may not exactly be on the same page. Still a lot of possible risk and complications that will not be known until delivery and/or for some time after birth.

What we really need. Lots and lots of prayers. They are already working.

Our baby (right now) has only one problem...congenital heart defect. No chromosone issues that are typically linked with DORV. The baby is a fighter.

Please pray for this baby to develop normally with good blood flow to the brain. We need for this baby to be otherwise healthy and full term to have the best shot of surviving the three surgeries with the least possible side effects and/or complications. The boys do not know of these problems with the baby. We have chosen not to tell them as it would only upset them and not do any good. They will learn all when it is necessary. We also do not want to get them in the habit of treating the baby special or different...from all indiciations the baby will be relatively normal and we need to keep that normalcy in our lives. If you have questions we are willing to answer them so please ask. Again...thank you for allowing Kevin and I our space as we found out answers and came to terms with what we are facing.

And Kyle was right...he is getting a baby sister. He knew all along.

23 comments:

Kristi said...

We will keep praying! Glad that things are OK - as OK as they can be. We love you much!

Aunt Ellen said...

Ashley, our prayers have never stopped, and we will continue to pray for you all. We love you and pray that things will go as smoothly as possible. You take care, and keep us posted. :)

Lizz said...

My prayers and thoughts are with you! You have a great outlook.
xo

karen said...

A girl! Pink things and lace! Flowers! The whole heart-defect thing will be trivial...we'll be too busy shopping for cute things to have her wear after so many years of boy-clothes. :)

Anonymous said...

You know the Squires family is 100% behind you guys. I will forward this on to my folks and Diana. You call us for ANYTHING. And you can add us to the prayer group. I know it will be huge.

Cherish said...

I was given a link to your blog by a friend. My son, Noah, was born with hypoplastic left heart syndrome. He was not diagnosed prenatally. We found out 24-hours after his birth.
He is now 18 months old and his journey has been a long one. However, looking at him you would never know he was sick. He is the happiest little guy in the world!! We have spent a lot of time at All Children's - it feels like a second home to us. However, I would not trade this journey for the world. My little guy has taught me more about strength, perserverence, love, acceptance and patience than I ever thought possible.
Please know that you are not alone as you begin your journey. You are now a "heart mom" and there are many out there like you. We all support and encourage each other. If you need to talk or if you have any questions, please feel free to contact me. You can also read my son's story by going to carepages.com. His page is NoahsQuest.
Take care,
Cherish Nero
cherishnero@yahoo.com

Matt/Julie said...

You are in our thoughts and prayers and will continue to be. If there is anything we can do please let us know.

Lady Epiphany said...

Ohh! A girl :) She, you and all your boys are in my prayers...

*pab said...

PG, Baby Zane and I are all IN! A fighter, indeed. I know your faith has been tested over and over and over again; but, I am proud to be the sister of an amazing woman who, despite being tested, has remained faithful, hopeful, positive and certain of a happy outcome. I love you, xxoo Sissy

Keysgal@QuietWater said...

We are going to have a girl in our family. I know there is a long road ahead but I have faith that God will be with all of us (especially you) every step of the way. He promised and I believe His promise. You know I am there behind you for whatever you need, whenever you need it. I am in awe of both you and Kevin right now. Stay strong knowing how many people are sending their love and caring. Much love to all of you. (By the way, as I started typing this mine and Daddy's "song" just started playing. It always lets me know that God is listening and I know he is this time)

Doris Ross said...

Ashley and Kevin...Your family is in our prayers. From your description of events you are making informed decisions with some of the best minds in Pedi heart surgery. From one who spent 16 years at ACH managing the surgical unit (operating room) you have chosen the best place for care. Hugs to you and your family and continued prayer for all things possible. Doris and Bill Ross

Anonymous said...

Ashley,

If your sweet Grannie Heartsill was here she would tell you that we don't always know why, but that "all things happen for a reason". I learned from her that we don't know the "big picture", but God does. We only see, feel and hear the snippets. Your sweet Grannie taught me about faith. Life has taught me about prayer and I have seen it work. I am praying diligently and have asked many, many others to include all of you on their prayer list. I know God will see you through this! Take good care of yourself!!!

Love you much!

Aunt J

Anonymous said...

Ashley and Kevin, we just want you to know that you are all in our thoughts and prayers. And believe me you are there often. Thanks for letting us know what is going on- keep us posted. We love you guys. Stay strong in each other, and remember that God never gives us more than we can handle. You will get through this. Please let us know if there is ever anything that you need, or anything we can do for you. Again, we love you. Steven and Casey

Deb Beyer said...

Thanks for the update. We too will say some prayers for you and what a wonderful email from Cherish Nero - that has got to bring tears to your eyes - it did to mine. I find it so inspiring that you did not choose to terminate this pregnancy ... she is your baby and God will do what He always does - carry you all through this very difficult journey.

Love you all of you,
Deb Beyer

Anonymous said...

We love you guys and are praying for you daily.
-Brooke #2 and Rick

Cheryl said...

From Todd, Cheryl, Austin, Connor and Emma Lee. You and Kevin are in our prayers. God works in misterious ways and we never know who we touch thoughout our lives. Look forward to holding her in your arms and everything else will melt away. xoxo from Lighthouse Point.

Andersons said...

Ashley and Kevin,
You are in our thoughts and prayers.
Love, Gina and Andy

Cherie DiNoia said...

We will be praying for you and baby Long. God has a plan....it is just so hard to figure out sometimes!!!

We love you,
Cherie, Raffaele and Marcella

Carroll said...

I just learned about what you are going through. You can be sure that I will be praying for God to give you the strength and help that you two need, and of course for your precious little daughter. God is good and He does answer prayer. We will just storm heaven with prayer, and He will be there for you and your precious baby. God bless you! Aunt Carroll

Anonymous said...

"As a mother comforts her child, so I will comfort you", says the Lord. Isaiah 66:13
I pray for that comfort to be felt by your lil girl and your family!
-Stacey Meagher

Donna Spencer said...

Dear Kevin and Ashley,

It sounds like you are doing everthing humanly possible to be informed and proactive. Babies are incredibly resilient. True miracles. Our thoughts and prayers are with you.

Love,

Mac and Donna

Anonymous said...

Kevin and Ashley,
I had no idea any of this was going on. My family will begin to pray for yours. I know from our children coming early(from IUGR) and being in the NICU that prayers and the Lord are what will get you and your family thru this. He has blessed you with this child and will continue to amaze you. Keep hope and faith. We will add you to our prayer request list. Stay strong.

Anonymous said...

We are friends of your Mom, Ashley -- in Marathon, FL. Want you to know our congregation is praying for you and we personally are too. So thankful you have left this precious life in God's hands. He knows what his plans are for her! Tom & Carol McCoy