I know it has been a long time since I have posted, life has just been very busy. There have been several updates on Lily's journey so I wanted to get you all caught up.
The last time I posted I said that they were sending her information to several other hospitals, we received several recommendations to include Children's Hospital of Philadelphia(CHOP) in that group as they have an amazing cardiac department there plus a specialist in pulmonary hypertension. Our cardiologist was in agreement so it was sent.
While waiting to hear news back Lily got another cold and ended up being admitted to the hospital again. Fortunately this was a much shorter stay, although it did take her several weeks to fully recover from the infection. Whenever she gets a respiratory infection she gets so blue and distressed especially when she coughs, it breaks my heart - it also means a lot of sleepless nights, as she constantly wakes up coughing.
Right before Thanksgiving we received a message from our cardiologist to come in for an appointment - this could only mean one thing - he had heard back. We had plans to go away to the beach for Thanksgiving with my family so we had to wait until we returned for the news - waiting was not easy.
Lily recovered from her cold just in time to go to the outer banks in North Carolina, her first visit to the beach. It was a wonderful break, we rode bikes, played football on the beach, ate too much food - but most importantly spent time together with our family, we had much to be thankful for. Lily loved riding on the back of the bike, she smiled and laughed every time we put her on it - it still amazes me how far this girl has come.
Last week was full of appointments. We met with early intervention to set up therapies for Lily, then on Friday we met with our cardiologist.
So here is the bottom line - CHOP agrees with our cardiologists that it is too risky to attempt surgery right now!!! So now what??? They have decided to start her on medication for the pulmonary hypertension the results of medications are varying,there are no guarantees it will do anything, but we are believing for positive results. The medicine she is getting is actually Viagra (hmmm - I know sounds strange), she will receive it 3 times a day. We have a monitor at home to measure the oxygen levels in her blood, her norms are in the 70's. What we are hoping to see is her oxygen levels increase into the 80's this would be a positive sign that her lungs are responding. They are going to treat her until April and then do another cardiac cath - they will then reevaluate her pulmonary hypertension and see if it has improved enough for surgery.
We felt encouraged by this news, it feels good to have a plan, to be doing something to help her, to have a goal. Yes it is hard to hear surgery is not an option, but we have felt that was the case for a while, what we were praying we wouldn't hear was that there was no hope. She has already shown us she is a fighter, she is improving in development every day. She sits, scoots, laughs, claps, waves, rolls, shakes her head no - and today for the first time ever - she put food in her mouth (fruit loops). She chewed them up and spat them out over and over again. Until now she has refused anything but her bottle - this is a HUGE step. 4 months ago she was doing none of these things.
So today we are thanking God for each accomplishment, for each step that may seem small to others but are huge to us and are huge to Lily.
Thank you for all your love and support.
Pictures to come soon.
Friday, December 10, 2010
Tuesday, October 26, 2010
My Girls
Enjoying every moment watching them grow and blossom
Lily is loving being able to sit up, the world must look so different to her from this position.
Mia got to spend some alone mommy time at Lewis Ginter Botanical Gardens - memories to treasure.
Lily is loving being able to sit up, the world must look so different to her from this position.
Mia got to spend some alone mommy time at Lewis Ginter Botanical Gardens - memories to treasure.
Tuesday, October 12, 2010
Ethan turns 10
Although this happened on September 26th, I have been very behind on blogging so I am playing catchup.
I am so proud to be the momma of my second son. He has always been my momma's boy and honestly has had the biggest adjustment with the adoptions of the girls, mostly with Mia's as it shifted him from being the youngest and my baby to being the middle child. So we have had our moments of jealousy and vying for attention, but these are not bad things, but things that have stretched his character and helped him grow. He loves his sisters, he is the one that plays games with them, chases Mia, and spends hours throwing Lily on the bed and tiggling her while she laughs and laughs. He is my son that still wants hugs from me, wants to be tucked into bed, and wants to snuggle on the coach.
Ethan lives life to the max - this boy does everything full on. He is the one that has had sutures 3 times, and 2 broken arms. Life is never dull when Ethan is around, he makes us smile and laugh and enjoy life right along with him.
I can't wait to see what he will do with the rest of his life, how blessed I am to be able to call myself his mother.
I am so proud to be the momma of my second son. He has always been my momma's boy and honestly has had the biggest adjustment with the adoptions of the girls, mostly with Mia's as it shifted him from being the youngest and my baby to being the middle child. So we have had our moments of jealousy and vying for attention, but these are not bad things, but things that have stretched his character and helped him grow. He loves his sisters, he is the one that plays games with them, chases Mia, and spends hours throwing Lily on the bed and tiggling her while she laughs and laughs. He is my son that still wants hugs from me, wants to be tucked into bed, and wants to snuggle on the coach.
Ethan lives life to the max - this boy does everything full on. He is the one that has had sutures 3 times, and 2 broken arms. Life is never dull when Ethan is around, he makes us smile and laugh and enjoy life right along with him.
I can't wait to see what he will do with the rest of his life, how blessed I am to be able to call myself his mother.
Look how far she's come
From this ...
.... a child who weighed only 14 lbs 7 oz, a child who couldn't hold her head up, a child who only wanted to lay on her back and refused to even sit on our laps, a child who cried when we put her on her belly, a child who hated to go outside, a child that looked so frail you felt like she could brake, a child who hated her picture taken.
To this in just 12 weeks ....
... a child weighing 19 lbs 13 oz, a child sitting by herself, a child holding her head up without it shaking, a child that smiles and laughs all the time, a child who loves going outside, a child who loves her belly and is trying so hard to crawl, a child who smiles for the camera.
Thanking God daily for every moment of the last 12 weeks - and how far our precious girl has come.
Note : no news yet on the second opinions, but that's OK because we are having so much fun with Lily right now.
.... a child who weighed only 14 lbs 7 oz, a child who couldn't hold her head up, a child who only wanted to lay on her back and refused to even sit on our laps, a child who cried when we put her on her belly, a child who hated to go outside, a child that looked so frail you felt like she could brake, a child who hated her picture taken.
To this in just 12 weeks ....
... a child weighing 19 lbs 13 oz, a child sitting by herself, a child holding her head up without it shaking, a child that smiles and laughs all the time, a child who loves going outside, a child who loves her belly and is trying so hard to crawl, a child who smiles for the camera.
Thanking God daily for every moment of the last 12 weeks - and how far our precious girl has come.
Note : no news yet on the second opinions, but that's OK because we are having so much fun with Lily right now.
Sunday, September 26, 2010
Lily's Journey to a Stronger Heart - 7
Friday September 24th we finally heard back from the cardiologist. They had a big meeting that day with all the cardiologists and the cardiac surgeon to discuss Lily.
A lot of what he said to us is very medically confusing so I won't even try to attempt to repeat it here.
The bottom line is they have a LOT of concerns about moving forward with surgery at this point. The damage to her lungs from living with her heart condition could be life threatening if they proceed.
If they did nothing history shows she could live 15-30 years - the last 10 of which she would become sicker and sicker - is this something we are willing to accept - NO!!!
So what now - well there are options, medication or possibly another surgery to improve the issues with her lungs.
At this point nothing is ruled out not even the original surgery - our cardiologist feels if there is something we can do to give her a good shot at a longer, and better quality of life then we need to take it - we are in agreement so now he is sending her information to trusted colleagues at UVA and DC Childrens for 2nd oppinions.
So now we wait again.
Is this what we were hoping to hear? NO way
Did we ever think when we adopted her that she could be inoperable? NO way
Would we change anything? NO way
We love her, she is a Yeatts, no longer an orphan - we will fight for her, love her, and do everything in our power to see her strong and healthy.
As Christians we are trusting in God. We know He lead us to her. We know He has the power to heal her body. We know we are on this journey for a reason.
We are not in a place of dis pare, but a place of hope and faith. Of coarse this was hard to hear, yes we shed some tears, yes we asked God why.
We didn't have long to absorb the news or dwell on it, as almost immediately our house was over run with 8 boys, here to celebrate Ethan's 10th birthday - so it was off out to laser tag, and then a sleepover - this was actually just what we needed - lily was so funny and playful, enjoying every moment of it - and so we were gently reminded that daily we get to see little miracles in lily happening right before our eyes.
Where once she could not even tolerate sitting on our laps she now loves to sit in her boomba chair, holding her head up without it bobbing around.
Where once she only made one sound she now babbles, smiles and laughs.
Where once she was frail and only weighed 14.5 lbs she is now strong, and weighing 19lbs.
So now we keep on doing what we have been doing - living our life daily, seeing Lily growing and getting stronger. Enjoying every moment we have, not loosing the moments by being preoccupied waiting for doctors calls, and wondering about the what ifs, instead treasuring what we have been given - for she is a gift of immeasurable value.
A lot of what he said to us is very medically confusing so I won't even try to attempt to repeat it here.
The bottom line is they have a LOT of concerns about moving forward with surgery at this point. The damage to her lungs from living with her heart condition could be life threatening if they proceed.
If they did nothing history shows she could live 15-30 years - the last 10 of which she would become sicker and sicker - is this something we are willing to accept - NO!!!
So what now - well there are options, medication or possibly another surgery to improve the issues with her lungs.
At this point nothing is ruled out not even the original surgery - our cardiologist feels if there is something we can do to give her a good shot at a longer, and better quality of life then we need to take it - we are in agreement so now he is sending her information to trusted colleagues at UVA and DC Childrens for 2nd oppinions.
So now we wait again.
Is this what we were hoping to hear? NO way
Did we ever think when we adopted her that she could be inoperable? NO way
Would we change anything? NO way
We love her, she is a Yeatts, no longer an orphan - we will fight for her, love her, and do everything in our power to see her strong and healthy.
As Christians we are trusting in God. We know He lead us to her. We know He has the power to heal her body. We know we are on this journey for a reason.
We are not in a place of dis pare, but a place of hope and faith. Of coarse this was hard to hear, yes we shed some tears, yes we asked God why.
We didn't have long to absorb the news or dwell on it, as almost immediately our house was over run with 8 boys, here to celebrate Ethan's 10th birthday - so it was off out to laser tag, and then a sleepover - this was actually just what we needed - lily was so funny and playful, enjoying every moment of it - and so we were gently reminded that daily we get to see little miracles in lily happening right before our eyes.
Where once she could not even tolerate sitting on our laps she now loves to sit in her boomba chair, holding her head up without it bobbing around.
Where once she only made one sound she now babbles, smiles and laughs.
Where once she was frail and only weighed 14.5 lbs she is now strong, and weighing 19lbs.
So now we keep on doing what we have been doing - living our life daily, seeing Lily growing and getting stronger. Enjoying every moment we have, not loosing the moments by being preoccupied waiting for doctors calls, and wondering about the what ifs, instead treasuring what we have been given - for she is a gift of immeasurable value.
Tuesday, September 7, 2010
Back to School
Start of another school year.
I worked last night, but rushed home to give my new middle school kid a big kiss on the cheek (much to his horror) at the bus stop (don't worry the bus wasn't there yet) and send him off on this new adventure. He is so laid back about everything, here am I thinking it is this huge BIG deal, and he is like "it's just a day at school mom". When he came home I wanted to know everything all he said was "it was fine" urrrr you're killing ya momma.
and then it was Ethan's turn. He was all hugs, kisses and smiles. Non-stop talking and super hyper. When he got home he fulfilled his mommas need for knowledge, he couldn't stop talking to me about his day. How can two son's be SO different.
All I know is I love them both so much and am so proud of the men they are becoming.
I worked last night, but rushed home to give my new middle school kid a big kiss on the cheek (much to his horror) at the bus stop (don't worry the bus wasn't there yet) and send him off on this new adventure. He is so laid back about everything, here am I thinking it is this huge BIG deal, and he is like "it's just a day at school mom". When he came home I wanted to know everything all he said was "it was fine" urrrr you're killing ya momma.
and then it was Ethan's turn. He was all hugs, kisses and smiles. Non-stop talking and super hyper. When he got home he fulfilled his mommas need for knowledge, he couldn't stop talking to me about his day. How can two son's be SO different.
All I know is I love them both so much and am so proud of the men they are becoming.
Thursday, September 2, 2010
Lily's journey to a stronger heart - 6 : Cardiac Cath
First - Thank you to all of you that prayed for Lily today, and offered us words of encouragement and love we really appreciated it.
Lily did great she tolerated the procedure well, they only had to use her vein not artery which was great - less risk of complications especially post procedure.
So the results - the BIG question was, are her pulmonary pressures to high for her to recieve the surgery she needs? The answer was No - not a slam dunk no, but not an absolute yes (if that makes any sense). Her pulmonary pressures are not normal they are elevated (which everyone expected), but they are not so high that surgery is out of the question, they fall into a grey area.
So what now - well the cardiologists, and cardiac surgeon will look at all the information closely and then make a recommendation to us. The reality is that we will not have a concrete answer, what we hope and are praying for is that when they all look at the results they will look favourable for surgery.
We are thrilled that they weren't so high surgery was ruled out because there was some concern this could have been the case, we also felt good after talking to the cardiologist.
To make this all a little easier to understand let me try and explain simply what the pulmonary pressure is. If they do the surgery it will enable her heart to push blood out of it into her lungs, if the pulmonary pressure is to high it will stop this from happening and push the fluid back to her heart. The pressure in her heart needs to be stronger than her lungs. If we move forward with surgery there is no turning back - and there will be no guarantees on whether it will work until they do it. Without the surgery she will not survive long term.
So this is where we stand. The seriousness is very real, but we feel at peace, we have a strong sense of God being in control.
Today we are rejoicing, she is strong and a fighter. She is drinking so much more by mouth, and has gained another 8 oz. The cardiologist said everything else in her heart looked great for surgery, her vessels were a good size, and her heart was healthy.
Here is a picture of Lily sleeping when we got home she is now awake and playing like today was just like any other day. How proud I am of my sweet.
Lily did great she tolerated the procedure well, they only had to use her vein not artery which was great - less risk of complications especially post procedure.
So the results - the BIG question was, are her pulmonary pressures to high for her to recieve the surgery she needs? The answer was No - not a slam dunk no, but not an absolute yes (if that makes any sense). Her pulmonary pressures are not normal they are elevated (which everyone expected), but they are not so high that surgery is out of the question, they fall into a grey area.
So what now - well the cardiologists, and cardiac surgeon will look at all the information closely and then make a recommendation to us. The reality is that we will not have a concrete answer, what we hope and are praying for is that when they all look at the results they will look favourable for surgery.
We are thrilled that they weren't so high surgery was ruled out because there was some concern this could have been the case, we also felt good after talking to the cardiologist.
To make this all a little easier to understand let me try and explain simply what the pulmonary pressure is. If they do the surgery it will enable her heart to push blood out of it into her lungs, if the pulmonary pressure is to high it will stop this from happening and push the fluid back to her heart. The pressure in her heart needs to be stronger than her lungs. If we move forward with surgery there is no turning back - and there will be no guarantees on whether it will work until they do it. Without the surgery she will not survive long term.
So this is where we stand. The seriousness is very real, but we feel at peace, we have a strong sense of God being in control.
Today we are rejoicing, she is strong and a fighter. She is drinking so much more by mouth, and has gained another 8 oz. The cardiologist said everything else in her heart looked great for surgery, her vessels were a good size, and her heart was healthy.
Here is a picture of Lily sleeping when we got home she is now awake and playing like today was just like any other day. How proud I am of my sweet.
Thursday, August 26, 2010
Our first family day out with Lily
This is very rare - my nine year old holds my hand
Guess who was hiding behind our heads?
Ahhh in the arms of big brother
Yum chips - actually I just want the bag :)
Lily's journey to a stronger heart - 5
Quick update - we were discharged from the hospital on August 20th.
Lily saying good bye to the nurses
She went home with an NG (nasalgastric)tube for feeds at night, they run continuously on a pump. During the day she drinks 4 bottles. As her weight increases we can increase the amount she eats. She is on a very strict schedule, as we don't want to feed her too much too quickly.
As of today she weighs 16 lbs and has gained a pound in one week. This is of coarse on our scale at home. On Tuesday we will followup with nutrition for an official weight check.
Thursday September 2nd she will get her cardiac cath - please pray for her that day as there are risks involved, but it is something that is essential before they will do surgery.
We are enjoying every moment having Lily home. She is so happy, and thrives on the constant activity in our home. She just loves to be right in the middle of her siblings enjoying every moment.
Lily saying good bye to the nurses
She went home with an NG (nasalgastric)tube for feeds at night, they run continuously on a pump. During the day she drinks 4 bottles. As her weight increases we can increase the amount she eats. She is on a very strict schedule, as we don't want to feed her too much too quickly.
As of today she weighs 16 lbs and has gained a pound in one week. This is of coarse on our scale at home. On Tuesday we will followup with nutrition for an official weight check.
Thursday September 2nd she will get her cardiac cath - please pray for her that day as there are risks involved, but it is something that is essential before they will do surgery.
We are enjoying every moment having Lily home. She is so happy, and thrives on the constant activity in our home. She just loves to be right in the middle of her siblings enjoying every moment.
Thursday, August 19, 2010
Lily's journey to a stronger heart - 4
Our girl is back - and we couldn't be more happy. We have had a couple of great days. She gained weight today - although it was slight we will take it.
We are starting to work towards discharge home - maybe tomorrow, maybe Saturday. She will come home with a feeding tube in her nose to help her continue to gain weight. She hasn't pulled it out today so that is progress, yesterday she pulled it out twice. I think she is learning - if she pulls it out it has to go back in :). Chris is learning all about the tube he has surprised me at how willing he has been to jump right in and do what needs to be done he is an amazing dad.
Here are a few shots of Lily's hospital stay - taken once she was feeling better.
We are starting to work towards discharge home - maybe tomorrow, maybe Saturday. She will come home with a feeding tube in her nose to help her continue to gain weight. She hasn't pulled it out today so that is progress, yesterday she pulled it out twice. I think she is learning - if she pulls it out it has to go back in :). Chris is learning all about the tube he has surprised me at how willing he has been to jump right in and do what needs to be done he is an amazing dad.
Here are a few shots of Lily's hospital stay - taken once she was feeling better.
Ethan holding Lily for the FIRST time
Such great big brothers helping push Lily around the unit - first picture of all 4 of my children together :)
Yes glasses are more fun to play with than toys :)
There goes those hands
Chillin
Ethan's race
On Saturday I left the hospital for a few hours to watch Ethan run a 2 mile race. He came in second place for his age category ( there were only 2 kids in his age group :) ). I am so proud of him - he has a competitive side and endless energy so this was perfect for him.
Before the race
Some encouragement from his sister
Go Ethan
Mim and Papa
That was harder than I thought :)
Congratulations Ethan
Before the race
Some encouragement from his sister
Go Ethan
Mim and Papa
That was harder than I thought :)
Congratulations Ethan
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