Thursday, January 28, 2010

Mia Hope

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.

Monday, January 18, 2010

I praise You because I am fearfully and wonderfully made; Your works are wonderful.I know that full well. ~Psalm 139:14~

We have an appointment in Denver at Children's and University hospital in a week. It has been like a dream lately, I keep thinking, Did we really get a diagnosis of something so serious for our baby? It is so complex and hard to understand all the things wrong with her heart! I am thankful we have a place nearby to get more information. It is actually about 8 hours from here but that's a days drive so we have to be thankful for that.
My dear, sweet friend sent me a cd filled with christian songs and a teddy bear on a stand. The name tag reads, "Bearing a Baby". The bear is dressed in pink and is pregnant! So cute and so touching. When I read the tag, I thought that's me, bearing a baby and a burden. I realized it has been a huge burden that is weighing on my mind but I will bare this with He who's burden is easy and who's yoke is light.
"For I am meek and lowly in heart and ye shall find rest unto your souls."

I have to say I have been feeling confused and maybe angry to be carrying a baby that has a chance of not surviving in this world once born. I have wondered why the pregnancy is continuing as normal and the baby so active in my womb. But then I remember those verses and decide that I will carry this baby with joy and thanksgiving. Who am I to question the almighty creator???? She has been created this way and it is a blessing to me to feel her movements and know her in my womb. God is the great comfortor and knows my pain. I will not let my faith waiver with doubts and questions. No burden is too big for Jesus.

Friday, January 8, 2010

A New Day

Today was a new day for me of hope. Not knowing the outcome of the future had really made me discouraged the last 2 days. I want to know that my baby can have a chance of survival. The waiting is hard. When we see the pediatric cardiologist in Denver, we will know more....
I woke up this morning after troubling dreams all night. I opened my bible in the darkness and layed my hand across the pages. I called out to Jesus and prayed.
I turned the light on later and read the passage. It was from Nehemiah 8 and 9.
"Do not weep. Do not grieve.The joy of the Lord is your strength." It goes on to talk about the wondrous creator who gives life and his amazing wonders.
I am filled with more hope than I have had since finding out the news. I know each day will be different but for now I am thankful to get my hope back.

Wednesday, January 6, 2010

Still Waiting

We just learned our daughter has heterotaxy/asplenia syndrome instead of HRHS. It is a more complex and rare heart defect with many more complications.
There is so much unknown right now. We go back to another specialist in 2 weeks when I am 24 weeks along. The cardiologist will be able to see things better at that point. I wish we had more information to share but we just are waiting! We are praying for wisdom and strength.

Monday, January 4, 2010

No more wheelbarrowing

Only a couple of days from now we will be learning more information to the many questions that we have about this diagnosis. It is strange how helpless we are in all of this. As a father I just want to scoop this little one in my arms and make everything better. I am grateful for friends who are scooping us into their arms right now and carrying us and our needs to the sustainer of life.

Life has a way of helping us see that we can't be in control of everything. God, however can be in control, and is. I was told tonight that I am like a person laboring with a wheelbarrow with my wife and kids in it. My wife is wiping my brow because I am working so hard without any break. I want to take care of everything, yet because my hands are holding the wheelbarrow and can't help my wife or kids. Try as I may I will not be able to hold it all together. I need someone to hold the wheelbarrow so I can care for the precious ones entrusted to me. We all need a Father who can carry our load. Man can't do it all on his own strength. God can! "I can do all things through Him who gives me strength." Phil 4:13.

God's strength will get us through all of this especially our little princess!
Praise God!

Saturday, January 2, 2010

The pregnancy started with indegestion and sickness. Yes! This was a welcome sign that my hormones were at work. I prayed each day for the Lord to keep watch over my womb and to allow me to carry this child! Every symptom you can have in pregnancy I decided I felt were 10 times more than the other babies! Which was great.
So finaly the day was approaching to see if we were going to have a boy or girl. 2 days before Christmas we went to the ultrasound. She was an active little thing! The tech could hardly get enough pictures. We left the office ready to tell everyone another princess was on it's way. We were told to come back in a month to get better pictures of her heart because they couldn't quite see everything. Not to worry, it happens all the time they said. You know that nagging little feeling of "what if", in the back of your mind? I guess you could say I had it.
Christmas was an enjoyable time of singing, baking, and opening gifts from our extended family. December 28th I recieved a call from my midwife saying I needed to see a specialist because the baby's heart was measuring "small". I was at the store with the 2 youngest and high tailed it out of there to collect my thoughts and call my husband. I was determined to be positive and sober minded but I was very scared!
My husband thought that by the time of our appointment the baby's heart might have grown up to size...I didn't think so.
We were scheduled an appointment that week. I called my midwife back and she read me the actual report. It said, right side of heart abnormal, not developed. At that point I was REALLY scared but still, I was leaning on my Lord, trusting Him to sustain me for whatever was to come. I researched online "small right side of heart..." and all I could find was HRHS...I told my husband.
The day we saw the specialist we were optomistic and also wanted to know that minute what the tech saw! The technician had to fax it out of town to the specialist and then my midwife would call me with the results. Ugh! I was trying to persuade the technician by saying things like, So....what things could I look up on the internet...well what defects do you know about?? It didn't work. He would only say she is moving A LOT and look at the nice 3 d pics.
I was called the next day with the news that our daughter did in fact have HRHS and an echogenic bowel. That condition goes along with heart defects but can also be found in chromosonal abnormalities...
We are traveling next week to the perinatal cardiologist to get another ultrasond and find out more.

We have shared the news with our extended family and friends and have been praying with our children. The amazing thing about little ones is their ability to be so tender and steadfast. They, like us, can't imagine what the future will bring but I know we will be stronger because of this. We don'tknow what is around the corner but our God does. And we will trust Him and lean on His understanding. Thank you for your prayers! We will be finding out what awaits, next week.
Psalm 62:1,2
The last 4 months have been exciting. To know the full story I will start at the begining.
After waiting a few years my husband and I decided to have another child. We were blessed to concieve the first month we tried, only to be let down with a loss a couple months later. It hit us hard. We have 4 healthy children and never thought any complications could arise. Who does?? Going through all the emotions, I made a choice to trust God and be thankul in eveything. The hardest part was knowing the pain our children were going through. It was amazing to see such love in their eyes for a sibling they hadn't even met. I don't know who comforted each other comorting them or them being a comfort to us! During that time I had an instinctful feeling that God was carying me gently in his hand while I was waiting to see what was in store. Little did I know I would be clinging earnestly to his hand throughout the next year.
We waited the usual time before trying again and once again were met with a loss, only this one being even earlier in the pregnancy. Not many people knew because we hadn't shared the news we were pregnant. It saved our chidren from another time of sadness.
We recovered and pressed on in faith! I was elated to find out a short time later I was pregnant again! I prayed fervently that God would bless my womb and now I am 5 months along!
That is the begining of this journey, my story, and the story of our trust in Jesus.