I titled this blog pray for Mia in hopes that whoever comes across this will PRAY for our daughter. She had a heart cath on Nov. 29th. The doctor was able to balloon her right and left pulmonary branch arteries, her aortic arch, and coil off some collateral vessels. Her pulmonary arteries are very small and if they don't grow then she can't have her Fontan around age 3. The doctor said to pray that they will grow! Again I am amazed at the doctors God has blessed us with. They are like family after all we have been through. The other night I spoke with Dr. K for an hour about Mia. We discussed the probability of her arteries not growing and having too many collateral vessels and possibly a heart transplant. When she asked if Clark and I would be okay with a transplant I was swallowing a lump that wouldn't go down!!! I had asked the cath doctor in Denver if we need to prepare our children for the worst and he said not yet, let's see what the next cath shows. But he did say "we are not in a good place right now" I have heard bad news before, as you can read in my first few blogs, but everytime I knew God was ultimately the one who would choose her path. So far He has blessed us beyond what we imagined. We are thankful for each day with Mia and so glad she has been such a strong fighter.
She is 7 months now and still very sweet! She has the calmest disposition! So happy and smiles at everyone! Thank you for your prayers!!!!!
Monday, December 6, 2010
Sunday, November 14, 2010
November 2010
We traveled to Denver for Mia to have a heart cath only to return because she had a cold. Her cold is worse today and we are just trying to keep her comfortable. We are planning to return for the heart cath as soon as she is better. Her echo showed significant small pulmonary arteries that branch into the lungs. That is very concerning and the doctor said she is "praying" the heart cath yields better results than the echo. We are amazed at the doctors faith and love for our family. We have been so blessed by her and the team of doctors in Denver. On our drive home last night I spoke to the doctor and she filled me with encouragement and said we are doing the best for Mia and that our family is why Mia has been doing so well. She brought me to tears with her kind words! She told me of other mothers that just give up or say they can't handle a baby as sick as Mia and they terminate the pregnancy even at 20 weeks. When we found out about Mia there was no choice for us except to press on and do everything we could for our daughter. By the grace of God she is with us today. The doctor said for us to have 4 other kids, make constant trips to Denver, and to have stayed there for 2 months straight is amazing. We don't think of ourselves as heros or anything other than parents doing what we have to do, but the doctor sees so many sides of people that we don't think about. I was almost speechless because she was so compassionate and "real" and it just made me dumbfounded that she thinks so highly of me....when she has been saving my daughters life!!! I was humbled and even more aware of God's hand in our situation. She told me of marraiges that suffer and many times end in divorce during times like ours and she is glad that Clark and I are in this together and that we are best friends, etc. I am telling you, I was deeply touched by her words. I just had to share this, not to show the world my doctor thinks I'm great, ha, But to share with you just how wonderful our doctor is and all of the care from the childrens hospital in denver.
We have been blessed by Dr. Karrie, and we have been given the gift of Mia and we are so undeserving of such a special gift. Truly Mia is the joy of our life. She is amazing and beautiful and our lives have been changed forever by our little Mia.
We have been blessed by Dr. Karrie, and we have been given the gift of Mia and we are so undeserving of such a special gift. Truly Mia is the joy of our life. She is amazing and beautiful and our lives have been changed forever by our little Mia.
Tuesday, October 12, 2010
Life lately
Mia is 5 months old and just as sweet as ever. She got a nasty virus and is on oxygen for the time being. Her stats are too low with this respiratory cold. She hadn't been on oxygen for at least 2 months before this. The doctors warned us that this might happen. When her stats dropped before her Glenn surgery the first thing the docs checked was if she had a cold or something! So we are experiencing that now. But she is doing okay with it. She rubs her nose A LOT and of course the tubing comes right off...She is getting better so that's all we can ask for:)
She has had a couple echos that show no change in the narrowing of her aorta and pulmonary arteries. We are traveling to Denver after the cold gets better and possibly having a heart cath to see what to do about it. Doesn't seem to be affecting her, she must be compensating the docs say. But she will need something done before the Fontan.
We are still in awe of our little Mia..and our other kids, through this. They are doing very well considering all the upheaval in their lives this spring and summer.
I am very thankful for the structure of our life right now. We have been home since August 24th! Woo hoo! We have only been to Albuquerque once and that was only a 3 hour jaunt.
So....life is stable and God is good. Thank you for all your thoughts and prayers. Sorry it has been so long between posts.
She has had a couple echos that show no change in the narrowing of her aorta and pulmonary arteries. We are traveling to Denver after the cold gets better and possibly having a heart cath to see what to do about it. Doesn't seem to be affecting her, she must be compensating the docs say. But she will need something done before the Fontan.
We are still in awe of our little Mia..and our other kids, through this. They are doing very well considering all the upheaval in their lives this spring and summer.
I am very thankful for the structure of our life right now. We have been home since August 24th! Woo hoo! We have only been to Albuquerque once and that was only a 3 hour jaunt.
So....life is stable and God is good. Thank you for all your thoughts and prayers. Sorry it has been so long between posts.
Wednesday, August 25, 2010
I sit holding Mia in my arms...the sweeteness of a sleeping baby! I am doing a room air challenge. She has been on oxygen since her Glenn surgery a couple weeks ago. So far her stats are in the 80's where we like them to be. But we have tried this before and after 3 hours her stats drop too low so back goes on the oxygen! But.....Mia is doing very well for being so small for her 2nd surgery. Thanks for all the prayers! Will update more later. So glad to be back home!!!!
Tuesday, July 27, 2010
My sister set up my email account a couple years ago (she's my older sis what can I say) using, therathe5...She forgot we actually had 6 in our family! My husband said well we just need to have a baby and then it can mean the rathe 5 as in 5 kids. Well that time is now...our little Mia makes 5. So thanks sis for spuring us on to have this little darling;) What a blessing she is.
I have been at the hospital with her since Thursday morning and so many nurses and doctors tell me how blessed we are to have her. I agree. She is amazing and stronger than I could be. On Tuesday she will have her 2nd surgery the Glenn Procedure. The docs discovered that her bt shunt is narrowing at one end and slightly in other places in her heart. Instead of doing an invasive stint or ballon they are going ahead with stage 2. We were preparing for that to be at 4-6 months and she will be 3 months on the day of. Her lung pressures look good and everything shows she should be okay doing it so early. She needs it. So we wait at the hospital for the week to pass so we can get through the next hurdle. During this hard time for our family I see so much goodness and mercy. So many kind hearted people are reaching out to us AND Mia has been a pure delight. Especially since she has started cooing and smiling at everyone that walks in the door. The nurses love her and so do we! Please keep us in your prayers. We will update soon.
I have been at the hospital with her since Thursday morning and so many nurses and doctors tell me how blessed we are to have her. I agree. She is amazing and stronger than I could be. On Tuesday she will have her 2nd surgery the Glenn Procedure. The docs discovered that her bt shunt is narrowing at one end and slightly in other places in her heart. Instead of doing an invasive stint or ballon they are going ahead with stage 2. We were preparing for that to be at 4-6 months and she will be 3 months on the day of. Her lung pressures look good and everything shows she should be okay doing it so early. She needs it. So we wait at the hospital for the week to pass so we can get through the next hurdle. During this hard time for our family I see so much goodness and mercy. So many kind hearted people are reaching out to us AND Mia has been a pure delight. Especially since she has started cooing and smiling at everyone that walks in the door. The nurses love her and so do we! Please keep us in your prayers. We will update soon.
Thursday, June 10, 2010
June 10th, 2010 Mia is out of the hospital
John 17: 1-5
After Jesus said this he looked toward heaven and prayed, " Father, the time has come. Glorify your Son, that your Son may Glorify you. For you granted him authority over all people that he might give eternal life to all those you have given him. Now this is eternal life: that they may know you, the only true God, and Jesus Christ whom you have sent. I have brought you glory on earth by completing the work you gave me to do. And now, Father, glorify me in your presence with the glory I had with you before the world began."
What a powerful passage in John. I am reminded of Jesus love and sacrifice.
I am also very aware that for me, my family and this little one inside me, the time has also come....to begin this next season in life. In just a few short hours or days I will be meeting our daughter who we have been anxiously planning our life around the last few months. And I wonder, am I ready to meet this trial in life? I worry about labor, the baby, my 4 kids, everything! Then I remember this passage and know that God is with me and knows my every worry and will get me through.I think I am beginning to understand the sacrifice that was made for me.
It has been 5 weeks! since I wrote that above. We have our beautiful daughter after she decided to come 2 days before induction, May 3rd. The delivery was what we prayed about. I was so thankful not to be induced. When she was born I saw a glimpse of her before the team of doctors walked away with her. After they stabilized her I was able to hold her for 3 minutes and kiss her all over and look at her tiny feet. Then she was off to Children's Hospital, next door.
The first 2 days of her life went smoothly, I was able to nurse and all the family got to hold her many times. On the 3rd day she started showing signs of distress and the doctor said, "She just needs her heart fixed"
She had surgery at 4 days old. Everything went as planned except for one thing. She had come off the heart lung machine and her oxygen levels were too low. So she had to go back on the heart lung machine and had a bigger shunt put in her tiny heart. You can imagine how we felt when we were told she was done and doing okay and then to be told wait, the surgeon is going back in for a bigger shunt. It was a day of waiting and acceptance for us. We were thankful for the many prayers said that day.
We were overjoyed when Mia came through the surgery and we were able to see her and pray over her fragile little body. She did very well the next week, having her chest closed, showing no signs of distress. We did have to tackle the problem of too much fluid on her lungs because of the big shunt.
Jumping ahead to NOW, the doctors were able to control the fluid with medicine and although she still has fluid around her lungs, she is doing well. As of Friday she has been released to the hotel we are staying at until we head back to New Mexico.
Next week the doctor will look at her heart and do a chest x ray to determine if we are able to leave the area. We are hopeful she will do great and we can get back to our casa in NM! On Tuesday Mia had a repeat swallow study, chest x ray, and general check up and things went wonderful. The damage to her vocal chord during surgery is doing much better and she is now able to breast feed. We are overjoyed at that news!
We are so thankful for the people who have prayed and thought about our family during this time. I am thankful I was able to update on facebook because each time I started a new post, here, my time ran out! So I am glad I could post short updates.
We have been through quite a journey and are so glad we have been able to stay together as a family! Everyone has had their moments, who wouldn't living in a hotel for 2 months:) but we are stronger and forever changed for the better.
The 3 big sisters are enjoying changing the baby and loving on her and mama is liking the help! Big brother is in love with his baby sister and things are light hearted at the Rathe house. We will update again in a couple days on a time frame when we can leave the area. Please pray for Mia's next appointments to go well.
Praise God for all the blessings we have received. Especially the cards, prayers, visits, everything. We are overwhelmed by the out poring of LOVE.
After Jesus said this he looked toward heaven and prayed, " Father, the time has come. Glorify your Son, that your Son may Glorify you. For you granted him authority over all people that he might give eternal life to all those you have given him. Now this is eternal life: that they may know you, the only true God, and Jesus Christ whom you have sent. I have brought you glory on earth by completing the work you gave me to do. And now, Father, glorify me in your presence with the glory I had with you before the world began."
What a powerful passage in John. I am reminded of Jesus love and sacrifice.
I am also very aware that for me, my family and this little one inside me, the time has also come....to begin this next season in life. In just a few short hours or days I will be meeting our daughter who we have been anxiously planning our life around the last few months. And I wonder, am I ready to meet this trial in life? I worry about labor, the baby, my 4 kids, everything! Then I remember this passage and know that God is with me and knows my every worry and will get me through.I think I am beginning to understand the sacrifice that was made for me.
It has been 5 weeks! since I wrote that above. We have our beautiful daughter after she decided to come 2 days before induction, May 3rd. The delivery was what we prayed about. I was so thankful not to be induced. When she was born I saw a glimpse of her before the team of doctors walked away with her. After they stabilized her I was able to hold her for 3 minutes and kiss her all over and look at her tiny feet. Then she was off to Children's Hospital, next door.
The first 2 days of her life went smoothly, I was able to nurse and all the family got to hold her many times. On the 3rd day she started showing signs of distress and the doctor said, "She just needs her heart fixed"
She had surgery at 4 days old. Everything went as planned except for one thing. She had come off the heart lung machine and her oxygen levels were too low. So she had to go back on the heart lung machine and had a bigger shunt put in her tiny heart. You can imagine how we felt when we were told she was done and doing okay and then to be told wait, the surgeon is going back in for a bigger shunt. It was a day of waiting and acceptance for us. We were thankful for the many prayers said that day.
We were overjoyed when Mia came through the surgery and we were able to see her and pray over her fragile little body. She did very well the next week, having her chest closed, showing no signs of distress. We did have to tackle the problem of too much fluid on her lungs because of the big shunt.
Jumping ahead to NOW, the doctors were able to control the fluid with medicine and although she still has fluid around her lungs, she is doing well. As of Friday she has been released to the hotel we are staying at until we head back to New Mexico.
Next week the doctor will look at her heart and do a chest x ray to determine if we are able to leave the area. We are hopeful she will do great and we can get back to our casa in NM! On Tuesday Mia had a repeat swallow study, chest x ray, and general check up and things went wonderful. The damage to her vocal chord during surgery is doing much better and she is now able to breast feed. We are overjoyed at that news!
We are so thankful for the people who have prayed and thought about our family during this time. I am thankful I was able to update on facebook because each time I started a new post, here, my time ran out! So I am glad I could post short updates.
We have been through quite a journey and are so glad we have been able to stay together as a family! Everyone has had their moments, who wouldn't living in a hotel for 2 months:) but we are stronger and forever changed for the better.
The 3 big sisters are enjoying changing the baby and loving on her and mama is liking the help! Big brother is in love with his baby sister and things are light hearted at the Rathe house. We will update again in a couple days on a time frame when we can leave the area. Please pray for Mia's next appointments to go well.
Praise God for all the blessings we have received. Especially the cards, prayers, visits, everything. We are overwhelmed by the out poring of LOVE.
Friday, May 7, 2010
Surgery Day
At 7:15 this morning our precious daughter Iilyah Mia Hope went with several nurses and doctors to have surgery. In the moments before surgery, my wife and I were able to spend some time with our little princess. Since her birth it has been a whirlwind. When I first saw her little face all I wanted to do was hold her and give her to my wife. Standing by and watching the nurses get her breathing after her birth and then seeing them insert several tubes and IV into her just broke my heart. Still, I had to let them do their work in order for God to the work in her that he is doing now. Since little we found out about our little Mia's heart defect I have felt helpless in many ways. A Father only wants to protect His own and keep them safe from anything that might harm her. Strange as it seems the only way I can protect her now is to let her go and be cared for by strangers.
Our Father also had to let his child go. Jesus had to be cared by strangers in order for his purpose to be fulfilled. I trust God that his purposes for my little Mia will be fulfilled. God is already performing a great work in her. Still this Daddy wants to hold and protect her. Right now the only way to protect her is to let her go so she can be helped.
"Dear Father, Please guide the hands of the surgeons and protect my little Mia through this surgery."
It is 11:48 and we are likely half way through the surgery. God is Good!
Our Father also had to let his child go. Jesus had to be cared by strangers in order for his purpose to be fulfilled. I trust God that his purposes for my little Mia will be fulfilled. God is already performing a great work in her. Still this Daddy wants to hold and protect her. Right now the only way to protect her is to let her go so she can be helped.
"Dear Father, Please guide the hands of the surgeons and protect my little Mia through this surgery."
It is 11:48 and we are likely half way through the surgery. God is Good!
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