This week has been a rough week in the heart world and it has really thrown me for a loop. A sweet, beautiful 4 yr. old little girl has returned home to her Heavenly Father. Though I personally don't know this little sweetheart or her family, the devastation felt is immense.
Mia received a heart transplant at just four months old. Last week her and her family left on her Make a Wish trip to Disney World. Upon arriving there, Mia got really sick, was rushed to the hospital and it was determined she was in severe rejection. During a procedure, things went wrong and poor Mia soon lost her valiant fight.
It was so sudden and unexpected for her family. My heart is heavy and literally aches for them. This has reminded me how fragile Gracie really is, and it scares me to death. Gracie has been doing so well and amazing us all that it is has been nice not to be reminded of her sick heart. But the truth is her heart is sick, and each day we are asking it to work in ways that are overwhelming.
Since the day I found out about Gracie's special heart, I feared I would lose my sweet baby. Now four blessed and beautiful years later, that fear has multiplied exponentially. Four years ago, I closed down in so many aspects. And though it may not be the healthiest thing to have done, it was what I needed to do to survive. Now, I feel, that despite wanting to still be "shut off," I need to work on healing and opening up because this heart journey is too hard to do alone.
I only hope that I will always remember to cherish and bask in the joy of having my children each and every day. I hope that I will learn again to truly trust and have faith in my Heavenly Father and his Son, Jesus Christ, my Savior. I hope to allow my heart to be more open and connected with others in this heart journey, no matter how hard the sorrow may be. For in much sorrow, there is also much joy, seeing the miracles and blessings that come.
Sunday, October 7, 2012
Thursday, September 20, 2012
Spencer Jay
I can't believe that my baby is already 2 1/2 months old. Wow has the time gone by fast. I kept wanting to sit down and post, but with four little ones, it is hard to find the time. Spencer is asleep in dad's arms watching the BYU/Boise game so instead of working out tonight, I thought I would try to update.
Spencer was born via c-section at 39 weeks on July 3rd. He weighed 8lbs 6oz and was 20 inches long. Unfortunately his lungs were having a hard time working on room air, so he went up to the NICU to get some help from the c-pap machine. He needed more than 6 hours so he was admitted into the NICU and was on cpap for about 10 hours. After he came off he was perfectly healthy and fine, but we still had to jump through all the hoops the NICU has to get him transferred up to the Mother-baby unit with me. I will spare the details and arguments I had to have with the NICU doctors for them to finally transfer him, but let me just say the NICU is great for sick babies, but they really need to work better with the healthy kiddos that just need a little time to adjust, instead of having them follow all the protocols of the NICU.
Spencer was born on a Tuesday and was transferred up to the floor with me early Thursday morning. Jason brought the kids to the hospital that morning to meet their new brother. Morgan, of course was in love with him. Grace responded the way we thought and was rather indifferent. Ryan was the one that shocked us. He was enthralled with Spencer and couldn't leave him alone. Even two months later, Spencer is Ryan's baby and he squeals with delight whenever Spencer looks at him and smiles. He says, "Me!! Meeeee!" As if to say he is smiling at me mom.
Spencer is such a wonderful baby. So happy, easy going and adorable. He is content just hanging out in his swing while I take care of all the craziness that is our life. At night, once the others are in bed he is kind of demanding and wants to be held till we go to bed. But I don't mind, I cherish it, because it won't last long!
It's funny, people will ask me how old my baby is and my response is always the same. "He's two months, but looks like he is 6 months." Spencer is a big boy! At his two month check he weighed 14 lbs, putting him in the 95 percentile for weight and 80th percentile for height. I told Jay that we are good breeders, our girls are petite and our boys are linebackers!
I can't imagine life without Spencer. Its amazing how much joy and calmness he has brought to our family.
Spencer was born via c-section at 39 weeks on July 3rd. He weighed 8lbs 6oz and was 20 inches long. Unfortunately his lungs were having a hard time working on room air, so he went up to the NICU to get some help from the c-pap machine. He needed more than 6 hours so he was admitted into the NICU and was on cpap for about 10 hours. After he came off he was perfectly healthy and fine, but we still had to jump through all the hoops the NICU has to get him transferred up to the Mother-baby unit with me. I will spare the details and arguments I had to have with the NICU doctors for them to finally transfer him, but let me just say the NICU is great for sick babies, but they really need to work better with the healthy kiddos that just need a little time to adjust, instead of having them follow all the protocols of the NICU.
Spencer was born on a Tuesday and was transferred up to the floor with me early Thursday morning. Jason brought the kids to the hospital that morning to meet their new brother. Morgan, of course was in love with him. Grace responded the way we thought and was rather indifferent. Ryan was the one that shocked us. He was enthralled with Spencer and couldn't leave him alone. Even two months later, Spencer is Ryan's baby and he squeals with delight whenever Spencer looks at him and smiles. He says, "Me!! Meeeee!" As if to say he is smiling at me mom. 
Spencer is such a wonderful baby. So happy, easy going and adorable. He is content just hanging out in his swing while I take care of all the craziness that is our life. At night, once the others are in bed he is kind of demanding and wants to be held till we go to bed. But I don't mind, I cherish it, because it won't last long!
It's funny, people will ask me how old my baby is and my response is always the same. "He's two months, but looks like he is 6 months." Spencer is a big boy! At his two month check he weighed 14 lbs, putting him in the 95 percentile for weight and 80th percentile for height. I told Jay that we are good breeders, our girls are petite and our boys are linebackers!
Friday, August 31, 2012
I've got no strings...
Gracie can go without having to wait for someone to carry her oxygen behind her. She can swing without being slowed down by the dragging oxygen tube. Gracie can play hide and seek and not be found by following her oxygen. And the list goes on.
Today was the first time, since Gracie has been mobile, that she hasn't been frustrated by how much she was being limited by the oxygen. Seriously the normal melt downs and whining that we hear were gone today. I know she misses her oxygen, but Wow. This has been monumental!!
Its a little humerus watching her look for her oxygen and making sure she isn't going to trip over it. She still wants it back if we ask her if she rather have it on or off. But she is doing great!!!
So her sats have stayed mostly between 84-92 throughout the day. We are checking her every couple of hours and she is doing great!! There has only been a couple of times today where she was in the low 80s, high 70s but within an hour she jumped back up.
Tomorrow I think we are going to attempt our first outing tube free. I can't wait to see her run around the gardens and being able to go where ever she wants! Lets hope I don't lose her.
I wish I was more eloquent so that I could fully express my feelings and emotions surrounding this new change. I mean Gracie has just had so many doors and opportunities opened to her just because the oxygen is gone. We are in heaven!!
Thursday, August 30, 2012
No more Oxygen!!!
I have been wanting to post for several weeks, but just haven't had the chance. I still need to post about Spencer's birth and the girls' first day of school. But for now, I want to post about how Gracie lost her oxygen. (hoping that the baby will let me write it all down)
August 2nd Gracie had a heart catherization. The purpose was to see why she isn't sating as high as they would like her to post fontan (the third open heart surgery she had in October). All went well with the cath its self, except Dr. Day ended up stenting open her pulmonary artery and found some AVMs (basically her arteries and veins in her lungs are growing together instead of staying separate). Because of this along with some other minor things, Dr. Jou, Gracie's cardiologist told me that she would need to be on oxygen indefinitely.
We were devastated with this information, but took comfort in knowing that Gracie didn't know anything else and was perfectly content with her oxygen.
Today we had a follow up visit with Dr. Jou. I wasn't too nervous and didn't expect much. We checked in, went for Gracie's chest x-ray and got weighed and stuff. As the nurse was taking us back into the room, the doctor yelled, "see where her sats are with the oxygen turned off."
Gracie's heart rate was great, blood pressure was within the 'normal' range. Sats on oxygen was 88 off was 86. Nothing out of the ordinary. When the doctor came in he played with Gracie for a moment and then turned and looked at me and said, "well lets turn the oxygen off."
I said, "What?! I thought you weren't letting her come off."
Turns out Dr. Jou and Dr. Day (the heart cath doctor) spoke more about Gracie's cath and decided that the AVMs weren't too bad and that being on the oxygen doesn't seem to be making much of a difference. When Gracie is getting 100% oxygen (breathing tube/intubation) her lung pressures are 15% (higher than they want, but manageable). When she was only on 30% oxygen (the cannula) her pressures were 16%.
So Jerry, (yes we are on a first name basis) said he wanted to give Gracie a chance of normalcy. He wanted her to be a kid and not be tied down to oxygen. So he said I could either wean her off slowly or just take the oxygen off and see how she does.
I didn't know what to say as he was telling me all of this. My first reaction, I wanted to jump out of my seat and kiss him. But I didn't! Then I started crying, I was happy and then I got scared and then I just felt a whole slew of emotions. Jerry gave me a hug and told me she'll do great and we could always put her back on.
So he wants her sats at 85% or higher. He is ok if she drops into the low 80s, but instead of hooking her up immediately if she does drop, he just wants me to watch her closer and see if she comes back up in a couple of hours. If she doesn't then we need to hook her back up and maybe slowly wean her down. Of course, if she becomes super tired or lethargic, oxygen goes back on.
So far, Gracie is doing great. We turned the oxygen off at 12:30pm this afternoon and it has stayed off. Two hours later she finally let me take the cannula off of her face. But within minutes she was looking for it and even had a mini meltdown wanting me to put it back on. I was able to talk her out of it, but she did mention a couple more times tonight that she wanted her oxygen back. If it comes down to it, I will just put the cannula back on to give her that emotional security.
Our lives changed today. Our house is quiet for the first time in 4 years without the buzz of the concentrator running continuously. Gracie still was walking around lifting her legs like she was managing her O2 still, but overall she is loving her new found freedom.
I am still in shock. When I look at her, I keep thinking we need to hook her up or is she ok? I said to my sister--in-law that taking off the oxygen was so exciting, even more exciting than finding out I was pregnant. I feel like doors and experiences that Gracie has never had are now at her fingertips. She can run and not get pulled back by her oxygen. She can go up and down the slide without a tank behind her. She won't get looks from strangers wondering what is wrong with her. People can she her now instead of her oxygen as a precursor.
I just can't think about it without tearing up. Hoping that she will do well off of it!
August 2nd Gracie had a heart catherization. The purpose was to see why she isn't sating as high as they would like her to post fontan (the third open heart surgery she had in October). All went well with the cath its self, except Dr. Day ended up stenting open her pulmonary artery and found some AVMs (basically her arteries and veins in her lungs are growing together instead of staying separate). Because of this along with some other minor things, Dr. Jou, Gracie's cardiologist told me that she would need to be on oxygen indefinitely.
We were devastated with this information, but took comfort in knowing that Gracie didn't know anything else and was perfectly content with her oxygen.
Today we had a follow up visit with Dr. Jou. I wasn't too nervous and didn't expect much. We checked in, went for Gracie's chest x-ray and got weighed and stuff. As the nurse was taking us back into the room, the doctor yelled, "see where her sats are with the oxygen turned off."
Gracie's heart rate was great, blood pressure was within the 'normal' range. Sats on oxygen was 88 off was 86. Nothing out of the ordinary. When the doctor came in he played with Gracie for a moment and then turned and looked at me and said, "well lets turn the oxygen off."
I said, "What?! I thought you weren't letting her come off."
Turns out Dr. Jou and Dr. Day (the heart cath doctor) spoke more about Gracie's cath and decided that the AVMs weren't too bad and that being on the oxygen doesn't seem to be making much of a difference. When Gracie is getting 100% oxygen (breathing tube/intubation) her lung pressures are 15% (higher than they want, but manageable). When she was only on 30% oxygen (the cannula) her pressures were 16%.
So Jerry, (yes we are on a first name basis) said he wanted to give Gracie a chance of normalcy. He wanted her to be a kid and not be tied down to oxygen. So he said I could either wean her off slowly or just take the oxygen off and see how she does.
I didn't know what to say as he was telling me all of this. My first reaction, I wanted to jump out of my seat and kiss him. But I didn't! Then I started crying, I was happy and then I got scared and then I just felt a whole slew of emotions. Jerry gave me a hug and told me she'll do great and we could always put her back on.
So he wants her sats at 85% or higher. He is ok if she drops into the low 80s, but instead of hooking her up immediately if she does drop, he just wants me to watch her closer and see if she comes back up in a couple of hours. If she doesn't then we need to hook her back up and maybe slowly wean her down. Of course, if she becomes super tired or lethargic, oxygen goes back on.
So far, Gracie is doing great. We turned the oxygen off at 12:30pm this afternoon and it has stayed off. Two hours later she finally let me take the cannula off of her face. But within minutes she was looking for it and even had a mini meltdown wanting me to put it back on. I was able to talk her out of it, but she did mention a couple more times tonight that she wanted her oxygen back. If it comes down to it, I will just put the cannula back on to give her that emotional security.
Our lives changed today. Our house is quiet for the first time in 4 years without the buzz of the concentrator running continuously. Gracie still was walking around lifting her legs like she was managing her O2 still, but overall she is loving her new found freedom.
I am still in shock. When I look at her, I keep thinking we need to hook her up or is she ok? I said to my sister--in-law that taking off the oxygen was so exciting, even more exciting than finding out I was pregnant. I feel like doors and experiences that Gracie has never had are now at her fingertips. She can run and not get pulled back by her oxygen. She can go up and down the slide without a tank behind her. She won't get looks from strangers wondering what is wrong with her. People can she her now instead of her oxygen as a precursor.
I just can't think about it without tearing up. Hoping that she will do well off of it!
Tuesday, June 12, 2012
Ogden's Dinosaur Park
We are getting really close to welcoming another baby into our family (about 3 weeks) and are very excited! Since we know that I will be having a c-section and know what the recovery will be like we wanted to do a big family outing now before the baby comes and life is crazy for several weeks. Though we have Thanksgiving Point practically in our backyard with a great dinosaur museum, we wanted to go somewhere, even if it was only 1 1/2 hours away to Ogden.
When Morgan was a baby we bought into a timeshare and loved it! Unfortunately with Gracie's arrival our circumstances changed and we had to sell it a few years ago. Before we sold it one of our favorite places to go was to Wolfcreek in Ogden Canyon. It was perfect for Gracie in the summer because it was cooler up there and we could just enjoy being away from home. Though we saw the Dinosaur Park everytime we went up there, we really had no interest to go. But along comes our little Ryan who LOVES dinosaurs, so for our last hurrah we decided to check out the dinosaur park and we are glad we did!First off, the weather was great!! We got up there at 10:30am and it was cool and shaddy enough that Gracie did great! No whining and no just wanting to sit in the stroller. At first both Ryan and Morgan were freaked out---Ryan by the big dinosaurs and Morgan by all the noise effects. But after explaining to Morgan that the roars and screachings were just coming from speakers and being able to show them to her, she chilled out. And Ryan warmed up quickly as we walked around and pointed out all the cool guys.
There were dinosaurs everywhere and little trails that we loved exploring with the kids! It really was just a lot of fun. We played at the playground for a little bit, then headed to the education center and made some great visors! Three hours later we were all tired and ready to go get some lunch and head home. It was a great outing and if you are heading up to Ogden and have little ones in toe, it is a great activity and a different way to experience dinosaurs than inside a museum.
Some of the dinosaurs we saw.
The kids loved these!
The cave.
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| Grace kept trying to pull the bone out and got frustrated. |
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