We have returned from Denver with a prayer answered that we have been praying for. Our baby girl has a chance to live~with surgery being needed. We met with a pediatric cardiologist, surgeon, perinatologist, to name a few of the doctors! It was a big day for us and we learned valuable information about our baby's condition.
She was originally diagnosed with Hypoplastic Right Heart Syndrome and then that diagnosis was changed to Heterotaxia. It turns out she does have Hypoplastic Right Heart Syndrome but it is more complex in the way they will treat her. When we got the diagnosis of heterotaxia the perinatoligost at that time gave us her opinion and that was..Our baby was inoperable and might live about an hour after I had her at term. Very dismal and heart wrenching. Things have changed now! We are hopeful and thankful the Lord has answered our prayers. Our daughter does in fact have a spleen,(one of the symptoms of heterotaxia is the absence of a spleen) and she has all her organs in the right place functioning properly. Except the heart of course. It is on the correct side of her chest but has many abnormalities. I will list them as the cardiologist did for us.
Transposition of the Great Arteries
Tricusped Atresia-in the most complex form-to quote the surgeon
Hypoplastic Right Ventricle
Hypoplastic Aortic Arch
The surgery is a little different than what they normally do for HRHS because her aorta is coming out of the LEFT side of her heart. Sooo, they treat it like Hypoplastic LEFT heart syndrome even thought that is not what she has. The left side of her heart IS of good size and functioning correctly. In HRLS the left side is underdeveloped.
She will have 3 surgeries to correct the defect and help her heart.
I am just going to list them in order.
Norwood Procedure-1st week of life
Glenn Procedure-4-5 months old
Fontan Procedure-3 years old
The first surgery is the most serious and very scary for us!! She will be in the OR for about 8 hours and after the surgery she will need to recover for about a month. We will continue to PRAY PRAY PRAY and trust God and be thankful for the blessing of this child. We named her Mia HOPE. She is our HOPE. There is always hope in Christ Jesus and we will never stop trusting and loving our Lord.
Our son also chose a name for her a long time ago and we will be putting that on her birth certificate as well. Her full name will be Eilyah Mia Hope Rathe.
During the first ultrasound (we had several!) in Denver, baby Mia was moving a lot! Like always. The doctor said that we were going to have a "wild child". This was after about an hour of being scanned by the sonographer. We were still uncertain as to the degree of the defect and Clark and I looked at each other with eyebrows raised and knew exactly what the other were thinking. Does this mean she might survive??? A feeling came over both of us at that point that just maybe we would get some better news...The 2 sonographers and the OB specialist hinted around that we would be hearing something different than what we were told in Alb. Then we met with a geneticist and were told Mia most likely was healthy genetically. SO far so good...
Then the Pediatric Cardiologist came in with a smile and a very outgoing personality! She explained the defects and surgeries our daughter would need. We told her that in at the last appointment we were told to be prepared for the worst and possibly starting on "comfort care" at the Farmington Hospital. She smiled and shook her head. Oh No, not here! We can do surgery! And we do it all the time!!!!
Then we went to Children's hospital and met with the coordinators and surgeon and cardiologist again. The surgeon sat down with us and drew us pictures of all the surgeries and defects. He was so informative and encouraging! He told us "the glass is more than half full" compared to what we were told in Alb. We were keeping our emotions under control and did pretty well until he started talking about the team of people assisting with the surgeries. I was overcome with gratitude towards all those who are helping our baby have life! Every time I started to tell him THANK YOU SO MUCH I couldn't speak because of the tears that would have flowed! The doctors just smiled and said you guys are doing real good. I was kinda glad I didn't burst into tears!!! Although I felt like it. I have never been so thankful towards others. Because of their expertise my baby will live!!!!!!God bless them.
I will be traveling back to Denver every 4 weeks for more echos on the baby and be seen again by the doctors we met. Then I will need to stay there from 37 weeks on in case I deliver early. I guess the baby needs to stay in the womb and grow as much as possible to be strong and healthy for the first precarious surgery. I am supposed to eat a lot and rest. Not a problem:) We will be making plans to relocate temporarily to Denver with our 4 kids. Please continue to pray for the baby's growth, strength, and all the planning for the move to Denver.
We can't express enough gratitude to all those praying for us. We pray for you too.