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Today, AnnaSophia had a clinic appointment. These appointments occur twice weekly with our transplant coordinator. She had an echo, an EKG, and a checkup with our nurse practitioner, Jilayne. We have been told that no news is good news concerning the echo and EKG's. Unfortunately, AnnaSophia weighed in at 12 lbs. 7 oz. and continues to lose weight. The nutritionist with the transplant team is out this week, but next week we will meet with her to develop a plan for our little one.
After our clinic appointment, our home health nurse, Hannah, came to change the dressing on AnnaSophia's pic line. Each time she comes, she continues to teach me how to manage the pic and change the IV bags of medication. It seems like quite a process, but I am learning.
Emily has had so much fun with the other children here, and I am thankful for the distraction for her. Jilayne tried to engage her in conversation regarding AnnaSophia, but Emily just wanted to talk about her favorite animals. Jilayne mentioned that Emily really doesn't want to talk about AnnaSophia's heart transplant. I think that Emily has a hard time processing the enormity of our situation. Instead, she lives in the moment, playing with friends and loving on her sister. Maybe this isn't such a bad strategy.
Later today, another transplant family contacted me via phone. It was very encouraging talking with them. Their son had his transplant as a newborn and is now 5. He battled some rejection this past spring and was discharged from the hospital on Father's Day. He most likely will require a second transplant. The amazing thing was the faith that this family has. The parents shared Psalm 31 with me, which had given them great comfort and hope during their trials. As I pray that we will be a blessing to others, the Lord continues to show up every moment of the day and showers us with his mercy.
I am so thankful to be where we are right now. The most unnerving thing is the wait. We continue to pray that the Lord will give AnnaSophia the perfect heart for her. We also pray that she will start to gain some weight. Thank you everyone for your continued prayers.
God Bless,
Mary
Be of good courage,
And He shall strengthen your heart,
All you who hope in the Lord.
Psalm 31:24
Monday, June 30, 2008
Sunday, June 29, 2008
A new kind of normal
Steve and I are very thankful for the arrangements at the Ronald McDonald House. They certainly make every effort to make your stay as nice as possible. There is a play room for the kids that is wonderful. There are several TV rooms, a computer room, laundry room and several kitchens with commercial appliances. Emily has had a ball making new friends in the last couple of days. AnnaSophia is so happy to have her big sister around. The other day Emily was dancing to "Ain't No Mountain High Enough" for her baby sister, and AnnaSophia was belly laughing so hard. Unfortunately, AnnaSophia wore herself out laughing and fell asleep shortly afterward. It doesn't take much to wear her out anymore.
Even though the Ronald certainly has some nice features, it still is not home. We are required to stay within 45 minutes of the hospital at all times. Sometimes it feels a bit like house arrest. I try not to think about how long we may be up here, and instead, I just take it one day at a time. I lean on the Lord a lot, because I know that He is the one sustaining me. I just pray that Ethan and Emily will be able to adapt. Right now, Emily thinks this is a great adventure and is enjoying making new friends.
Today, Emily was sharing her faith with two other girls. She told me before bed that she likes being a "missionary". There are a lot of Christian families here and some who do not know the Lord. Even the Christian families struggle with the question, "Why my child?". I was able to encourage several families tonight that we may never know the answer to that question this side of Heaven, but I do know that our circumstances and journeys can strengthen our faith. The Lord can walk with us through these challenges if we allow Him to. These challenges can serve to make us more like Him. My dad once said that the Lord is more concerned with our salvation than He is concerned about how comfortable we are. The times when we are stretched are the times when we can be closest to our Lord. To quote the movie the Princess Bride, "Life is hard, Princess." I don't know why hard things happen sometimes, but I know that the Lord has been glorified lately in this house.
We have been abundantly blessed, and I pray that we can continue to be a blessing to others. Thank you to all of you who have supported us with financial gifts, food, prayers and emotional support. We appreciate this more than we can express.
Mary
Oh taste and see that the Lord is good:
Blessed is the man who trusts in Him!
Psalm 35:8
Even though the Ronald certainly has some nice features, it still is not home. We are required to stay within 45 minutes of the hospital at all times. Sometimes it feels a bit like house arrest. I try not to think about how long we may be up here, and instead, I just take it one day at a time. I lean on the Lord a lot, because I know that He is the one sustaining me. I just pray that Ethan and Emily will be able to adapt. Right now, Emily thinks this is a great adventure and is enjoying making new friends.
Today, Emily was sharing her faith with two other girls. She told me before bed that she likes being a "missionary". There are a lot of Christian families here and some who do not know the Lord. Even the Christian families struggle with the question, "Why my child?". I was able to encourage several families tonight that we may never know the answer to that question this side of Heaven, but I do know that our circumstances and journeys can strengthen our faith. The Lord can walk with us through these challenges if we allow Him to. These challenges can serve to make us more like Him. My dad once said that the Lord is more concerned with our salvation than He is concerned about how comfortable we are. The times when we are stretched are the times when we can be closest to our Lord. To quote the movie the Princess Bride, "Life is hard, Princess." I don't know why hard things happen sometimes, but I know that the Lord has been glorified lately in this house.
We have been abundantly blessed, and I pray that we can continue to be a blessing to others. Thank you to all of you who have supported us with financial gifts, food, prayers and emotional support. We appreciate this more than we can express.
Mary
Oh taste and see that the Lord is good:
Blessed is the man who trusts in Him!
Psalm 35:8
Friday, June 27, 2008
Waiting is the hardest part
We apologize for the delay in providing an update. Because of the hectic nature of our existence, delays will sometimes be the norm. Complicating matters is that I can't get wireless Internet access in our room at the Ronald McDonald House, only in the kitchen or downstairs.
AnnaSophia was discharged from Children's Hospital on Wednesday afternoon. So, the nervous wait for a new heart has started.
On Thursday, AnnaSophia had her first clinic appointment at Children's Hospital. These appointments are twice a week and start at 8 a.m. At clinic, she gets her vitals checked, an echo, an EKG and a visit with her transplant coordinator. We didn't get out of clinic until about 11:30 a.m., so it appears as though these will be lengthy appointments. The echo typically lasts the longest.
A home healthcare nurse will stop by regularly at the Ronald McDonald House to monitor AnnaSophia's pic line. This is comforting, especially when AnnaSophia is having a rough day, like today so far. Her nurse -- Hannah -- visited AnnaSophia this morning and said the pic line site looked O.K., but felt her heart needed to be checked at Children's before the weekend. So, Mary is on her way to Children's now for the heart transplant coordinator to evaluate AnnaSophia. Please pray that this goes well.
Grandma Donna brought Ethan up yesterday and has been with us since. Emily will come up today with Grammy and Paw Paw, so we'll either get a hotel room or figure something out for living arrangements tonight because of Ronald McDonald's policy. I will head back to the Springs with Ethan tomorrow so I can get back to work.
Blessings,
Steve and Mary
AnnaSophia was discharged from Children's Hospital on Wednesday afternoon. So, the nervous wait for a new heart has started.
On Thursday, AnnaSophia had her first clinic appointment at Children's Hospital. These appointments are twice a week and start at 8 a.m. At clinic, she gets her vitals checked, an echo, an EKG and a visit with her transplant coordinator. We didn't get out of clinic until about 11:30 a.m., so it appears as though these will be lengthy appointments. The echo typically lasts the longest.
A home healthcare nurse will stop by regularly at the Ronald McDonald House to monitor AnnaSophia's pic line. This is comforting, especially when AnnaSophia is having a rough day, like today so far. Her nurse -- Hannah -- visited AnnaSophia this morning and said the pic line site looked O.K., but felt her heart needed to be checked at Children's before the weekend. So, Mary is on her way to Children's now for the heart transplant coordinator to evaluate AnnaSophia. Please pray that this goes well.
Grandma Donna brought Ethan up yesterday and has been with us since. Emily will come up today with Grammy and Paw Paw, so we'll either get a hotel room or figure something out for living arrangements tonight because of Ronald McDonald's policy. I will head back to the Springs with Ethan tomorrow so I can get back to work.
Blessings,
Steve and Mary
Tuesday, June 24, 2008
Moving up the list
AnnaSophia has now moved up to number four on the transplant list. We just got word this afternoon that another baby on the list is getting his/her transplant tonight. We pray that the other child makes it out of surgery well and that there are no complications. This is an exciting, but very scary time, and I pray that the Lord will minister to this family this evening. We were encouraged to know that AnnaSophia has moved up, but the wait could still be months long.
We also got news that Ethan and Emily will not be able to stay with us all together at the Ronald McDonald house. Apparently, the limit is two children and two adults--no exceptions. Steve and I are trying to figure out how to be a family at this time. Our current plan is to "swap" the kids each week -- one goes to the Springs with Steve, while the other stays in Denver. Not ideal by any stretch, but we're blessed to have a room at the Ronald McDonald House, so we'll make the most of the situation.
Blessings,
Steve and Mary
We also got news that Ethan and Emily will not be able to stay with us all together at the Ronald McDonald house. Apparently, the limit is two children and two adults--no exceptions. Steve and I are trying to figure out how to be a family at this time. Our current plan is to "swap" the kids each week -- one goes to the Springs with Steve, while the other stays in Denver. Not ideal by any stretch, but we're blessed to have a room at the Ronald McDonald House, so we'll make the most of the situation.
Blessings,
Steve and Mary
A sleepless night for mom
Last night AnnaSophia kept desatting into the mid to low 80's. It was concerning as she was sound asleep and we were getting a good signal on her probe. The nurse changed her probe several times to make sure it was good. At one point when she was nursing, she desatted into the high 60's. Trying to stimulate her didn't really seem to help. As best as we could tell, it was a result of the sedation from earlier in the day. She went back on oxygen around 12:30 am, and that seemed to help.
AnnaSophia is just so sensitive to anesthesia and sedation. We pray that the effects of the sedation will continue to wear off today, and that she will not need to be on oxygen long term.
I will praise You, O Lord my God,
with all my heart,
And I will glorify Your name forevermore.
Psalm 86:12
Mary
AnnaSophia is just so sensitive to anesthesia and sedation. We pray that the effects of the sedation will continue to wear off today, and that she will not need to be on oxygen long term.
I will praise You, O Lord my God,
with all my heart,
And I will glorify Your name forevermore.
Psalm 86:12
Mary
Monday, June 23, 2008
Psalm 50: 14-15
I thought this was an appropriate verse:
Offer to God thanksgiving, and pay your vows to the Most High. Call upon Me in the day of trouble; I will deliver you, and you shall glorify Me.
Offer to God thanksgiving, and pay your vows to the Most High. Call upon Me in the day of trouble; I will deliver you, and you shall glorify Me.
All glory be to our God and Father!!!!!!!!!!!!!!!!!!!!!!!!!!!
Dr. Kinsella (spelling?) just came out to tell us that he got the pic line inserted! Praise God!! I just saw AnnaSophia, and while she's very sleepy, her color looks really good. We're so relieved. Yet again, the Lord reminds us that when we put our faith in Him, He delivers.
Steve
Steve
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