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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
Prayers needed -- AnnaSophia is in the cath lab
The attempt at inserting the pic line in AnnaSophia's arm started about 15 minutes ago. There seemed to be quite a bit of uncertainty on the part of the doctor that he can get the line in considering the size of AnnaSophia's veins. However, God is in control and through faith in Him, I am confident he will guide the doctor's hands to a successful conclusion.
Steve and Mary
Steve and Mary
Sunday, June 22, 2008
Couple of pictures
Here are some pictures of AnnaSophia from the last couple of days:
I don't mind all this stuff too much...daddy says I'm tough
Just watchin' Nemo with my stuffed pal...
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I don't mind all this stuff too much...daddy says I'm tough
A quiet day
Yesterday, Ethan, Emily, Grammy and Paw-Paw came to visit. AnnaSophia was soooo excited to see her brother and sister. What a difference since our last visit to Children's Hospital. Her heart rate and respirations went up when she saw them. She definitely loves her brother and sister.
So far, AnnaSophia seems to be tolerating the Milrinone well. Her heart rate has been running in the 130's to 160's--a little higher than she has been in the past. We just pray that the neonatologist can get the pic line in on Monday. We met with the nutritionist on the transplant team yesterday. The hope is that we can prevent her from losing weight, and hopefully, gain some. She ate some rice cereal and applesauce today, and I think she likes it better than the "gaggy" green beans she ate yesterday.
The transplant coordinator also visited with us and clarified some of the different transplant options for AnnaSophia. She is not able to get a cross-match transplant, where they transplant a different blood type organ in the recipient. AnnaSophia has had too many transfusions, interventions (surgery). She has developed too many antibodies to attempt a cross-match.
We obviously pray for a conventional transplant, where the team is able to keep a steady blood supply to the heart before transplantation. The other option is a Donor after Cardiac Death transplant. This is where the donor is without oxygen for a 30 minute period of time before transplant. In order to keep the heart as viable as possible, the team tries to keep oxygen to the organs as long as possible. With this type of transplant, ethics require a cardiac death to occur first. It is not ideal, but does open up the donor pool. Denver has done three of these infant transplants and all of the recipients are alive. The oldest is 4 years old. Despite this limited success, the technique is unproven long term. It is something we may have to consider in the near future, depending on AnnaSophia's heart and the outlook for the transplant list.
Thank you for your continued prayers and support,
Mary and Steve
So far, AnnaSophia seems to be tolerating the Milrinone well. Her heart rate has been running in the 130's to 160's--a little higher than she has been in the past. We just pray that the neonatologist can get the pic line in on Monday. We met with the nutritionist on the transplant team yesterday. The hope is that we can prevent her from losing weight, and hopefully, gain some. She ate some rice cereal and applesauce today, and I think she likes it better than the "gaggy" green beans she ate yesterday.
The transplant coordinator also visited with us and clarified some of the different transplant options for AnnaSophia. She is not able to get a cross-match transplant, where they transplant a different blood type organ in the recipient. AnnaSophia has had too many transfusions, interventions (surgery). She has developed too many antibodies to attempt a cross-match.
We obviously pray for a conventional transplant, where the team is able to keep a steady blood supply to the heart before transplantation. The other option is a Donor after Cardiac Death transplant. This is where the donor is without oxygen for a 30 minute period of time before transplant. In order to keep the heart as viable as possible, the team tries to keep oxygen to the organs as long as possible. With this type of transplant, ethics require a cardiac death to occur first. It is not ideal, but does open up the donor pool. Denver has done three of these infant transplants and all of the recipients are alive. The oldest is 4 years old. Despite this limited success, the technique is unproven long term. It is something we may have to consider in the near future, depending on AnnaSophia's heart and the outlook for the transplant list.
Thank you for your continued prayers and support,
Mary and Steve
Friday, June 20, 2008
No go on pic line
Despite their best efforts, the staff was unable to get the pic line inserted into AnnaSophia today. This was after more than an hour of attempts. So, the team has decided to try again on Monday at 1 p.m. with something called a, "cut down pic line." The doctor cuts away tissue to expose the veins and to more easily insert the line. The line would most likely be placed in her arm. AnnaSophia doesn't seem to tolerate any kind of sedation very well, so we're extremely concerned about any option that involves heavy sedation or general anesthesia.
If the second attempt at a pic line doesn't go well, other options mentioned to us are much more involved and include surgery. Surgery is not good for AnnaSophia right now. We need prayers that this second attempt at a pic line works and that the line holds. This is the only way to get the Milrinone medication into her system once she goes "home."
Finally, I think the Ross Procedure vs. heart transplant issue is resolved. We are committed to a heart transplant and have found peace with the decision, including the risks associated with the wait and the transplant itself. We know this decision gives AnnaSophia the best chance of survival.
Blessings,
Steve and Mary
If the second attempt at a pic line doesn't go well, other options mentioned to us are much more involved and include surgery. Surgery is not good for AnnaSophia right now. We need prayers that this second attempt at a pic line works and that the line holds. This is the only way to get the Milrinone medication into her system once she goes "home."
Finally, I think the Ross Procedure vs. heart transplant issue is resolved. We are committed to a heart transplant and have found peace with the decision, including the risks associated with the wait and the transplant itself. We know this decision gives AnnaSophia the best chance of survival.
Blessings,
Steve and Mary
Roller coaster
AnnaSophia is currently in the cardiac intensive care unit waiting to get the pic line inserted. They have her heavily sedated for the procedure. It brought back a lot of scary memories of sending her back for her first heart surgery. Because of the condition of her heart, the pic line team had to be very careful with her sedation.
Here's another prayer request for something we're struggling with. We continue to get conflicting messages from the heart transplant representative and AnnaSophia's doctors on the Ross Procedure vs. the heart transplant. Every time we feel set on the heart transplant, the representative seems to try to talk us out of it. So, we're very confused and conflicted. We desparately need the Lord to reveal His will today for AnnaSophia's future to both the doctors and us, because that is our only hope for comfort. We just don't understand why we continue to receive conflicting messages about something so critical.
Steve
Here's another prayer request for something we're struggling with. We continue to get conflicting messages from the heart transplant representative and AnnaSophia's doctors on the Ross Procedure vs. the heart transplant. Every time we feel set on the heart transplant, the representative seems to try to talk us out of it. So, we're very confused and conflicted. We desparately need the Lord to reveal His will today for AnnaSophia's future to both the doctors and us, because that is our only hope for comfort. We just don't understand why we continue to receive conflicting messages about something so critical.
Steve
Pic line to be inserted shortly
AnnaSophia is getting ready to go back to the cardiac intensive care unit (9:30 a.m. appt.) to have her pic line inserted. The nurses in the CICU will have to sedate her for the procedure and then monitor her for a while afterwards. The milrinone will then be sent through the pic line instead of the IV. Please pray that this process goes smoothly and that AnnaSophia's heart handles the sedation. She also hasn't eaten since 4 a.m.
So far, AnnaSophia has handled the milrinone at .3 ml, but must begin tolerating .5 ml today. We've had some good news so far, but we still have a long way to go. Please keep her in your prayers today.
Thanks to everyone for your continued prayers and support.
Steve
So far, AnnaSophia has handled the milrinone at .3 ml, but must begin tolerating .5 ml today. We've had some good news so far, but we still have a long way to go. Please keep her in your prayers today.
Thanks to everyone for your continued prayers and support.
Steve
Thursday, June 19, 2008
Milrinone started -- prayers urgently needed!
The nurses have started sending the Milrinone through AnnaSophia's IV -- and YES, they actually got a regular IV in her hand! And, this all happened while I was in the room and Mary wasn't. Miracles do happen.
If she tolerates the medication, they'll sedate her and put in a pic line. Please pray that the Lord will oversee this process and that AnnaSophia will tolerate the medication.
Steve
If she tolerates the medication, they'll sedate her and put in a pic line. Please pray that the Lord will oversee this process and that AnnaSophia will tolerate the medication.
Steve
The gift of time
Yesterday, we met with the heart failure specialist at Childrens Hospital in Aurora, Colorado. While the Ross Procedure was still an option, we decided not to pursue that path for a variety of reasons, namely AnnaSophia faced a slim 20% chance of surviving the surgery. Her ventricle is extremely dialated and vulnerable to clots and a host of other problems. So, that left us with the only option left -- a heart transplant.
Beginning today, AnnaSophia will be placed on a heart transplant list for the region, and will be admitted to Childrens' Cardiac Intensive Care Unit. The doctors will try her on a new heart medication called Milrinone to hopefully stabilize her heart function and, most importantly, move her up on the transplant list to "1a" status rather than the "1b" status she is currently on. The only way to administer this new drug is through the intensive care unit because the doctors will have to continuously monitor her heart function. It is very possible (about a 50% chance) she will not tolerate the medication, and in fact, it could make her heart condition deteriorate even more. If that happens, she will move back down to "1b" status.
The placement on the transplant list is extremely critical because there is currently a 6-month wait for a new heart. There is legitimate concern that AnnaSophia's current heart will not last that long. So please pray that she does not reject this medication, that it helps her heart function and that she receive a heart.
It has been extremely difficult for Mary and I to pray for another heart, because we know someone else will have to lose their child. That is a devastating thought for us.
One side "benefit" with AnnaSophia being placed on the transplant list is that we were able to get a room at the Ronald McDonald House; a wonderful facility. This is important because a requirement of being on the transplant list is that Mary and AnnaSophia have to be within a one hour drive of Childrens Hospital at all times. For about $400 a month, Mary and the kids will be able to stay in Denver; still a significant financial burden on top of other demands, but an overall blessing for sure.
Steve
Beginning today, AnnaSophia will be placed on a heart transplant list for the region, and will be admitted to Childrens' Cardiac Intensive Care Unit. The doctors will try her on a new heart medication called Milrinone to hopefully stabilize her heart function and, most importantly, move her up on the transplant list to "1a" status rather than the "1b" status she is currently on. The only way to administer this new drug is through the intensive care unit because the doctors will have to continuously monitor her heart function. It is very possible (about a 50% chance) she will not tolerate the medication, and in fact, it could make her heart condition deteriorate even more. If that happens, she will move back down to "1b" status.
The placement on the transplant list is extremely critical because there is currently a 6-month wait for a new heart. There is legitimate concern that AnnaSophia's current heart will not last that long. So please pray that she does not reject this medication, that it helps her heart function and that she receive a heart.
It has been extremely difficult for Mary and I to pray for another heart, because we know someone else will have to lose their child. That is a devastating thought for us.
One side "benefit" with AnnaSophia being placed on the transplant list is that we were able to get a room at the Ronald McDonald House; a wonderful facility. This is important because a requirement of being on the transplant list is that Mary and AnnaSophia have to be within a one hour drive of Childrens Hospital at all times. For about $400 a month, Mary and the kids will be able to stay in Denver; still a significant financial burden on top of other demands, but an overall blessing for sure.
Steve
Tuesday, June 17, 2008
News from the Cardiologist
AnnaSophia's cardiologist, Dr. Runciman, called earlier today, and his mother-in-law passed away unexpectedly. He called to tell us that Dr. Duster would be taking his place in the conference today for our little one. Steve and I feel for Dr. Runciman and his family, and our prayers go out for them. Dr. Duster called me this afternoon after the conference to tell me that the doctors at Children's do not think that AnnaSophia could survive the Ross Procedure. They think that her only option at this point is a heart transplant. We are to go to Children's tomorrow and check in with the outpatient clinic. They will do another echo to check her heart again. We will also meet with their heart failure specialist, and AnnaSophia will be placed on the transplant list. The plan is to admit her after her appointments. The doctors want to try to take her off of her meds to see if the drugs are helping her heart at all. Steve and I were a bit surprised by this, and we pray for wisdom for the doctors and nurses. Dr. Duster said that they might try another heart cath next week in order to stretch her aortic valve some more.
At this point, we are not sure what to expect after that. We don't know how long we will be at Children's. The doctors in Denver told Dr. Duster that the wait for a heart is 3 to 4 months. Yesterday, he told us that she may only have two months left with her current heart. I know that the Lord has a plan for her, and we pray that His will be done.
The bright note for today was that we held a private Dedication Ceremony in our home for AnnaSophia today. Pastor Pat Jeffery from Grace Community Church came to our home and blessed us with a beautiful time of worship and prayer as we lifted our little angel up to the Lord. He reminded us that every day we dedicate her to the Lord. Thank you to our family and friends that made today possible. We felt so loved and cared for.
We also want to extend a huge thank you to all of the special people at Colorado Springs Utilities that have set up a fund at Ent Federal Credit Union for our precious little girl. Your kindness and compassion toward AnnaSophia has touched us more than we can express.
As we walk into the unknown, we humbly ask for prayer that the Lord will give the doctors and nurses divine wisdom. We also pray for a little miracle for our little miracle girl.
Mary
At this point, we are not sure what to expect after that. We don't know how long we will be at Children's. The doctors in Denver told Dr. Duster that the wait for a heart is 3 to 4 months. Yesterday, he told us that she may only have two months left with her current heart. I know that the Lord has a plan for her, and we pray that His will be done.
The bright note for today was that we held a private Dedication Ceremony in our home for AnnaSophia today. Pastor Pat Jeffery from Grace Community Church came to our home and blessed us with a beautiful time of worship and prayer as we lifted our little angel up to the Lord. He reminded us that every day we dedicate her to the Lord. Thank you to our family and friends that made today possible. We felt so loved and cared for.
We also want to extend a huge thank you to all of the special people at Colorado Springs Utilities that have set up a fund at Ent Federal Credit Union for our precious little girl. Your kindness and compassion toward AnnaSophia has touched us more than we can express.
As we walk into the unknown, we humbly ask for prayer that the Lord will give the doctors and nurses divine wisdom. We also pray for a little miracle for our little miracle girl.
Mary
Monday, June 16, 2008
Things Change Quickly
On Father's Day AnnaSophia cried a lot. She needed her mommy a lot, and she didn't eat very well. She was whimpering in her sleep. My "Mom-stinct" told me that something was definitely wrong. Steve and I decided that I should take her to the cardiologist first thing Monday. After an echocardiogram, the doctor told us that her heart is in really bad condition. Dr. Runciman had conferred with Dr. Roger Mee (not sure of spelling) in New Zealand recently, and they decided that AnnaSophia was not a candidate for a simple valve repair. Dr. Mee thought that the best place for her was Denver Children's Hospital. In Denver, they can do either the Ross Procedure or a heart transplant.
Her outlook is quite grim at this point. We did not receive the news that we had hoped for. They are unsure if AnnaSophia could survive a Ross Procedure, and that afterwards, she could still require a transplant. Her left ventricular function is so poor at this point, that they are concerned that the Ross would not solve her heart function problem.
Steve and I wrongly thought that a heart transplant would solve all of her problems. The reality is that a heart transplant only buys you time with your child. How much time is hard to tell. A first transplant could last as long as ten years or fail at any time.
We are dealing with a myriad of feelings. We trust in the Lord and know that she is in His hands. We stand on the promises that He has given us. At the same time I am grieving the loss of time with AnnaSophia. I know that all of our days are numbered. Only the Lord knows our future, and it is important to live everyday with our loved ones like it is our last day. Live so that there will be no regrets. Love your children like the Lord loves us. Hug them, kiss them and tell them how much you love them. We never know what the future holds. I have struggled with the loss of AnnaSophia's future. I had hoped to see her grow into a beautiful young woman of God. I had hoped to see how her faith and love of the Lord would blossom over time. I had hoped to see her meet a godly young man and get married. I had hoped that on her wedding night, her husband would see her scar on her chest and praise God for the miracle that she is. I had hoped that one day she would give Steve and I grandchildren. Right now, I hope to see her make it to her first birthday. Steve and I have never been big celebraters of New Years. If AnnaSophia makes it to celebrate her first birthday on December 31st, we will celebrate like never before. What a great way to ring in the New Year.
Please pray for strength and wisdom for Steve and I in the days and weeks to come. And, please pray for Ethan and Emily; that the Lord would give them peace and would protect them. Finally, pray for AnnaSophia -- that God would continue to work miracles within her.
Mary
Her outlook is quite grim at this point. We did not receive the news that we had hoped for. They are unsure if AnnaSophia could survive a Ross Procedure, and that afterwards, she could still require a transplant. Her left ventricular function is so poor at this point, that they are concerned that the Ross would not solve her heart function problem.
Steve and I wrongly thought that a heart transplant would solve all of her problems. The reality is that a heart transplant only buys you time with your child. How much time is hard to tell. A first transplant could last as long as ten years or fail at any time.
We are dealing with a myriad of feelings. We trust in the Lord and know that she is in His hands. We stand on the promises that He has given us. At the same time I am grieving the loss of time with AnnaSophia. I know that all of our days are numbered. Only the Lord knows our future, and it is important to live everyday with our loved ones like it is our last day. Live so that there will be no regrets. Love your children like the Lord loves us. Hug them, kiss them and tell them how much you love them. We never know what the future holds. I have struggled with the loss of AnnaSophia's future. I had hoped to see her grow into a beautiful young woman of God. I had hoped to see how her faith and love of the Lord would blossom over time. I had hoped to see her meet a godly young man and get married. I had hoped that on her wedding night, her husband would see her scar on her chest and praise God for the miracle that she is. I had hoped that one day she would give Steve and I grandchildren. Right now, I hope to see her make it to her first birthday. Steve and I have never been big celebraters of New Years. If AnnaSophia makes it to celebrate her first birthday on December 31st, we will celebrate like never before. What a great way to ring in the New Year.
Please pray for strength and wisdom for Steve and I in the days and weeks to come. And, please pray for Ethan and Emily; that the Lord would give them peace and would protect them. Finally, pray for AnnaSophia -- that God would continue to work miracles within her.
Mary
Saturday, June 14, 2008
The Gift
My dear friend Torry wrote this poem for AnnaSophia. The words are so precious and inspired. Thank you Torry. I thank the Lord for your friendship.
The Gift
This gift has been sent
from Heaven above,
The Lord sending down
an outpouring of love.
This little angel
we have called our own,
We trust in His hands
her heart at His throne.
Her sweet smile
her skin so fair,
Behind those eyes
such Wisdom is there.
How precious, how miraculous
This little life is,
A reflection of
the Glory that is His.
This gift has been sent
from Heaven above,
A sure testimony
of Gods' unending love.
Torry Whitfield
The Gift
This gift has been sent
from Heaven above,
The Lord sending down
an outpouring of love.
This little angel
we have called our own,
We trust in His hands
her heart at His throne.
Her sweet smile
her skin so fair,
Behind those eyes
such Wisdom is there.
How precious, how miraculous
This little life is,
A reflection of
the Glory that is His.
This gift has been sent
from Heaven above,
A sure testimony
of Gods' unending love.
Torry Whitfield
Wednesday, June 11, 2008
Discharged from Memorial
Monday night AnnaSohpia and I slept pretty well. She was still retracting when breathing, but the Lasix seemed to be pulling off a lot of fluid. Tuesday morning she was actually paying close attention to anyone who came into her room and cracked a few grins. She had an echo done in the morning, and we visited with her cardiologist, Dr. Runciman, that afternoon.
The bottom line is that she is doing better on the Lasix and increased Captopril, but the doctor said that she has demonstrated by this episode what a fragile condition she is in. We have said for a while that even though she has congestive heart failure, she doesn't look like a baby who has CHF. The doctor was concerned that it really didn't take much to push her over the edge and make her very sick. He decided that now is the time to start preparing for surgery. He wants her to be as strong as possible to make it through this surgery.
Dr. Runciman plans to send her records to Denver Children's Hospital this week for a consult. He is also attempting to reach Dr. Roger Mee (not sure on the spelling of his last name), who used too be the most world reknowned pediatric surgeon for the Ross Procedure, but has since retired. Our doctor said that he believes that he is still doing phone consults in his retirement, and the hope is that he will give some advice on what to do with AnnaSophia, and who is doing the best Ross Procedures in the U.S.
The surgery would consist of removing her diseased aortic valve and discarding it. They would then take the pulmonary valve and put it in the aortic position. A homograft valve (cadaver valve) would then be put in the pulmonary position. She would also require a Konno procedure in which a portion of heart muscle tissue under the aortic valve would be removed. Dr. Runciman does not like to talk in percentages, but the success of this procedure is lower than her first surgery, probably in the 80% region. She will also require additional surgeries to replace the homograft valve as she outgrows it.
There is some concern that the actual heart muscle is diseased. If this is the case, she might possibly require a transplant at some time in the future. This was clearly distressing, because as the doctor explained, all heart transplants are rejected. It is just a matter of time. The first can last up to ten years, the second for half as long, and the third is the last and final transplant.
Steve and I are struggling with a lot of different emotions. We know that she needs this surgery to save her life, but it is also scary. There are risks involved, including death. I know that the doctors need to tell us all of the possibilities, but it is still hard to hear. I have felt the Lord reminding me to not forget what he has done. We have seen Him work in her amazing miracles. I cling to the promise He gave me concerning her : "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
My plan for this next month is to halt school and enjoy my children. I want us to have fun with AnnaSophia, and take lots of pictures. I will draw close to the Lord and trust in Him, yet I will also live like this is my last month with my precious baby daughter.
But as for me, it is good to be near God.
I have made the Sovereign Lord my refuge;
I will tell of all your deeds.
Psalm 73: 28
Mary
The bottom line is that she is doing better on the Lasix and increased Captopril, but the doctor said that she has demonstrated by this episode what a fragile condition she is in. We have said for a while that even though she has congestive heart failure, she doesn't look like a baby who has CHF. The doctor was concerned that it really didn't take much to push her over the edge and make her very sick. He decided that now is the time to start preparing for surgery. He wants her to be as strong as possible to make it through this surgery.
Dr. Runciman plans to send her records to Denver Children's Hospital this week for a consult. He is also attempting to reach Dr. Roger Mee (not sure on the spelling of his last name), who used too be the most world reknowned pediatric surgeon for the Ross Procedure, but has since retired. Our doctor said that he believes that he is still doing phone consults in his retirement, and the hope is that he will give some advice on what to do with AnnaSophia, and who is doing the best Ross Procedures in the U.S.
The surgery would consist of removing her diseased aortic valve and discarding it. They would then take the pulmonary valve and put it in the aortic position. A homograft valve (cadaver valve) would then be put in the pulmonary position. She would also require a Konno procedure in which a portion of heart muscle tissue under the aortic valve would be removed. Dr. Runciman does not like to talk in percentages, but the success of this procedure is lower than her first surgery, probably in the 80% region. She will also require additional surgeries to replace the homograft valve as she outgrows it.
There is some concern that the actual heart muscle is diseased. If this is the case, she might possibly require a transplant at some time in the future. This was clearly distressing, because as the doctor explained, all heart transplants are rejected. It is just a matter of time. The first can last up to ten years, the second for half as long, and the third is the last and final transplant.
Steve and I are struggling with a lot of different emotions. We know that she needs this surgery to save her life, but it is also scary. There are risks involved, including death. I know that the doctors need to tell us all of the possibilities, but it is still hard to hear. I have felt the Lord reminding me to not forget what he has done. We have seen Him work in her amazing miracles. I cling to the promise He gave me concerning her : "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
My plan for this next month is to halt school and enjoy my children. I want us to have fun with AnnaSophia, and take lots of pictures. I will draw close to the Lord and trust in Him, yet I will also live like this is my last month with my precious baby daughter.
But as for me, it is good to be near God.
I have made the Sovereign Lord my refuge;
I will tell of all your deeds.
Psalm 73: 28
Mary
Monday, June 9, 2008
Premature diagnosis...no virus prompted this hospital stay
Unfortunately, a virus is not the cause of AnnaSophia's latest hospital stay, but rather a worsening heart condition. Needless to say, she is still in the hospital and will likely be there through tomorrow, if not longer.
AnnaSophia is in congestive heart failure, which has caused significant fluid retention around her heart, lungs and other body organs. The fluid retention had gotten so severe that she was displaying virus-like symptoms (nausea, vomiting, diarrhea, etc.) over the last few days. We've learned a lot over the past few months, but there remains a great deal that we still do not know. We knew something was wrong, but we had no idea it was this.
That's the bad news...the good news is that since the doctors started AnnaSophia on Lasix -- a drug to relieve fluid retention -- she is slowly improving. She's also on oxygen, a higher dosage of heart medication and remains on an IV; all of which are helping. An echocardiogram is scheduled for tomorrow morning so the doctors can get a better look at her heart. That will be key to giving us some answers as to next steps.
Additionally, the cardiologist feels AnnaSophia's congestive heart failure is relatively low on the severity scale at the moment and can be managed with medication; for now. We were very concerned earlier today that we would be making a trip to Denver for a second open heart surgery. So, we're grateful that it looks like surgery is not required at this time. I'm emphasizing "for now" and "at this time" because the immediate future is very uncertain. I do not want to mislead anyone as to what is to come. We can offer no assurances, only that AnnaSophia is in God's very capable hands and that is where we find comfort.
Even though we've known for a while that another surgery is on the horizon, it is nearly unfathomable to send her to be cut open again, not knowing if she will be strong enough to survive. The fragile nature of AnnaSophia's condition has really hit home with this latest hospital stay.
Once again, I humbly ask for your prayers as we journey through this latest challenge. Please pray for strength for Mary, and that her and AnnaSophia have a peaceful night. Also, pray that the echocardiogram will reveal a clear picture for the doctors so they can chart a course for next steps.
Steve
AnnaSophia is in congestive heart failure, which has caused significant fluid retention around her heart, lungs and other body organs. The fluid retention had gotten so severe that she was displaying virus-like symptoms (nausea, vomiting, diarrhea, etc.) over the last few days. We've learned a lot over the past few months, but there remains a great deal that we still do not know. We knew something was wrong, but we had no idea it was this.
That's the bad news...the good news is that since the doctors started AnnaSophia on Lasix -- a drug to relieve fluid retention -- she is slowly improving. She's also on oxygen, a higher dosage of heart medication and remains on an IV; all of which are helping. An echocardiogram is scheduled for tomorrow morning so the doctors can get a better look at her heart. That will be key to giving us some answers as to next steps.
Additionally, the cardiologist feels AnnaSophia's congestive heart failure is relatively low on the severity scale at the moment and can be managed with medication; for now. We were very concerned earlier today that we would be making a trip to Denver for a second open heart surgery. So, we're grateful that it looks like surgery is not required at this time. I'm emphasizing "for now" and "at this time" because the immediate future is very uncertain. I do not want to mislead anyone as to what is to come. We can offer no assurances, only that AnnaSophia is in God's very capable hands and that is where we find comfort.
Even though we've known for a while that another surgery is on the horizon, it is nearly unfathomable to send her to be cut open again, not knowing if she will be strong enough to survive. The fragile nature of AnnaSophia's condition has really hit home with this latest hospital stay.
Once again, I humbly ask for your prayers as we journey through this latest challenge. Please pray for strength for Mary, and that her and AnnaSophia have a peaceful night. Also, pray that the echocardiogram will reveal a clear picture for the doctors so they can chart a course for next steps.
Steve
A viral infection...
...has landed our little AnnaSophia back in the hospital. For those of you who are still following the blog, we thought we'd offer this update and humbly request prayers for AnnaSophia.
After nearly a week of not eating well, bouts with diarrhea and, most recently, vomiting, we decided to take AnnaSophia to the hospital Sunday evening to be checked out. To make a long story short, she was admitted to Memorial Central at about 11 p.m. Sunday for dehydration and some sort of a viral infection. Apparently, she is negative for RSV, which is great news.
The current worries include the fact that her oxygen levels have been relatively poor (low to mid 80s), most likely due to the viral infection. Her heart seems O.K. so far, but obviously, these infections put stress on her heart condition.
AnnaSophia will remain at Memorial with Mary until the doctors are confident she is nursing well and can hold down her heart medications.
Please pray for strength, rest and wisdom for us (especially for Mary, as she is at the hospital with AnnaSophia), guidance for the doctors who are caring for AnnaSophia, and that the Lord grants His healing touch on AnnaSophia so she can return home soon.
Steve
After nearly a week of not eating well, bouts with diarrhea and, most recently, vomiting, we decided to take AnnaSophia to the hospital Sunday evening to be checked out. To make a long story short, she was admitted to Memorial Central at about 11 p.m. Sunday for dehydration and some sort of a viral infection. Apparently, she is negative for RSV, which is great news.
The current worries include the fact that her oxygen levels have been relatively poor (low to mid 80s), most likely due to the viral infection. Her heart seems O.K. so far, but obviously, these infections put stress on her heart condition.
AnnaSophia will remain at Memorial with Mary until the doctors are confident she is nursing well and can hold down her heart medications.
Please pray for strength, rest and wisdom for us (especially for Mary, as she is at the hospital with AnnaSophia), guidance for the doctors who are caring for AnnaSophia, and that the Lord grants His healing touch on AnnaSophia so she can return home soon.
Steve
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