We wanted to keep everyone posted on the plan for today. Natalie was admitted at 7am this morning. Let me correct that, she was checked in at 7 am and we finally got headed back to anesthesia about 8:30. Brad toted her around the majority of the morning taking her to look at all the Christmas decorations. I felt terrible holding her knowing that she was hungry. I felt like I was torturing her by not feeding her. Poor little thing was so hungry. Once we got back to anesthesia they gave her an oral sedative and then I got to snuggle her one more time before they took her back. I know it will be way too long before I get to do that with her again. We all got one last minute to snuggle. Once they took her, Brad prayed for us and I felt much better.
These updates will be short as we only get a little bit of information. They took her back at 8:45 and called with the first update at 10:15 to let us know that she had done very well with anesthesia and the Doctor del Nido had made the incision. The plan is that they will call us every hour and a half with an update. They will let us know when they put her on the heart and lung machine, and when they take her off.
We are back in the room after having a walk and some breakfast. We are not sure what we will do all day, but I hope a nap is on the schedule somewhere.
We will keep you posted as the day goes, but they do not expect her to be out until early evening. They plan to keep her heavily sedated over the next few days so that she can heal better and rest more comfortably.
Thank you to all the friends and family and others who are praying for us. We appreciate the time you take to think of us at this busy time of year.
Well, they called us while we were getting ready to post this. So, they put her on the heart and lung bypass machine, and just started the actual repair on her heart; everything is going well. It will be an incredibly long day, but all is well so far, so we're thankful. We will do quick updates when we get them from the surgery room, so I'm sure we'll post again in another couple of hours.
Tuesday, December 18, 2012
Monday, December 17, 2012
Tomorrow is the big day
Hi everyone,
Well, tomorrow is the big day. We go in at 7:00 am to check in and get started. They will give Natalie an oral sedative to begin, that way they can give her IVs and do other prep work without causing any additional stress. We will get to give her one last hug, and hand her over to the anesthesiologists. That is the toughest thing I have ever done. A parent handing over his/her daughter to a stranger and putting her life in his hands is hard. We draw comfort in the fact that she is, in fact, in God's hands.
We had another discussion with Dr. del Nido today. It is really comforting knowing that we are giving our daughter to the best surgeon in the world for this type of procedure. I told Heidi that it's like talking basketball with Michael Jordan. He (Dr. del Nido, not Michael Jordan) thinks that the surgery will go well, and that she will have a fully functioning, two ventricle heart when it is all over. If that's the case, then Natalie won't have to endure another one of these; thankfully. There is still a slight chance that the heart won't respond well, and they'll have to change what they've done. Then they'd have to come back later (6-12 months from now) and try again. He thinks this is highly unlikely, and is optimistic that everything will go as planned. He just wants to make sure we're aware of the possibility. Once again, it is an awesome feeling to be able to sit and have a conversation with the best in the world. It is very reassuring and comforting. God has put Natalie in the hands of some very capable and talented people in her short life. Dr. St. Louis in Minneapolis, and Dr. del Nido here in Boston are truly blessed with talent.
Well, I'm done for now. Hopefully, we can manage to sneak in a little sleep tonight. We really appreciate all of the prayers and support we've gotten from all of our friends and family back home, as well as our church family at Century Baptist. I also have to thank MDU for allowing me to spend this time with my family. I haven't been there long, and they could have easily told me that I had to come back to work. It's a true blessing to work for such an organization. I'll turn this over to Heidi and let her say a few words before bedtime. God bless.
Brad has done such a nice job, I am not sure what to add. We love this little squirrel, as Brad calls her, more than we ever could have imagined we would. She is just such a bright eyed and inquisitive little girl. She wants to see and touch everything. She even started trying to drink from a cup this week. It will be hard to have a set back just as she has become so social and outgoing. She loves to see new people and engages them as they pass by.
I laughed about the size of the beds at the Yawkey house, but it may have been a small blessing allowing me to learn more about Natalie and snuggle her every night. I will still be happy to get back home into a bigger bed, that is for sure.
We continue to meet some great people here. As hard as it has been to give up the comforts of home to live in the Yawkey house, we have been blessed to meet some amazing people. Our new friend Tyler has been here 14 times for back surgery. He is such a bright and friendly young man and is only 13 years old. He gave Natalie a note that said, "I know what you are going through, and when the going gets tough, Go On! Never Give Up" He was the biggest sports nut I have ever met. I can't wait to see where his life takes him. Some team better snatch him up, because he knows football like no other 13 year old I've met. We will always cheer for the 49ers, Just for him.... Well unless they play the Vikings of course. Tyler, thank you for blessing out stay and making us feel normal, even if it was only for a short period of time. We will miss seeing your smiling face here.
Life at the Yawkey is good and we are fortunate that they have room for us here through the middle of January if we need it. Small community groups come in and cook or donate meals most nights. We met some folks from the Boston Bruins one night and a church group last night. It makes Brad and I think about how we should be giving more back to our community and the people who are in the same position as we are. God once again, shines through the people who love Him.
Well we better try to get some sleep and spend sometime, just the 3 of us. It will be the last night for a long time that we get to be together just the three of us. We love you little bug and we can't wait to spend the rest of our lives together...
Bright eyed and bushy tailed.
Not anymore. Sweet Dreams.
Well, tomorrow is the big day. We go in at 7:00 am to check in and get started. They will give Natalie an oral sedative to begin, that way they can give her IVs and do other prep work without causing any additional stress. We will get to give her one last hug, and hand her over to the anesthesiologists. That is the toughest thing I have ever done. A parent handing over his/her daughter to a stranger and putting her life in his hands is hard. We draw comfort in the fact that she is, in fact, in God's hands.
We had another discussion with Dr. del Nido today. It is really comforting knowing that we are giving our daughter to the best surgeon in the world for this type of procedure. I told Heidi that it's like talking basketball with Michael Jordan. He (Dr. del Nido, not Michael Jordan) thinks that the surgery will go well, and that she will have a fully functioning, two ventricle heart when it is all over. If that's the case, then Natalie won't have to endure another one of these; thankfully. There is still a slight chance that the heart won't respond well, and they'll have to change what they've done. Then they'd have to come back later (6-12 months from now) and try again. He thinks this is highly unlikely, and is optimistic that everything will go as planned. He just wants to make sure we're aware of the possibility. Once again, it is an awesome feeling to be able to sit and have a conversation with the best in the world. It is very reassuring and comforting. God has put Natalie in the hands of some very capable and talented people in her short life. Dr. St. Louis in Minneapolis, and Dr. del Nido here in Boston are truly blessed with talent.
Well, I'm done for now. Hopefully, we can manage to sneak in a little sleep tonight. We really appreciate all of the prayers and support we've gotten from all of our friends and family back home, as well as our church family at Century Baptist. I also have to thank MDU for allowing me to spend this time with my family. I haven't been there long, and they could have easily told me that I had to come back to work. It's a true blessing to work for such an organization. I'll turn this over to Heidi and let her say a few words before bedtime. God bless.
Brad has done such a nice job, I am not sure what to add. We love this little squirrel, as Brad calls her, more than we ever could have imagined we would. She is just such a bright eyed and inquisitive little girl. She wants to see and touch everything. She even started trying to drink from a cup this week. It will be hard to have a set back just as she has become so social and outgoing. She loves to see new people and engages them as they pass by.
I laughed about the size of the beds at the Yawkey house, but it may have been a small blessing allowing me to learn more about Natalie and snuggle her every night. I will still be happy to get back home into a bigger bed, that is for sure.
We continue to meet some great people here. As hard as it has been to give up the comforts of home to live in the Yawkey house, we have been blessed to meet some amazing people. Our new friend Tyler has been here 14 times for back surgery. He is such a bright and friendly young man and is only 13 years old. He gave Natalie a note that said, "I know what you are going through, and when the going gets tough, Go On! Never Give Up" He was the biggest sports nut I have ever met. I can't wait to see where his life takes him. Some team better snatch him up, because he knows football like no other 13 year old I've met. We will always cheer for the 49ers, Just for him.... Well unless they play the Vikings of course. Tyler, thank you for blessing out stay and making us feel normal, even if it was only for a short period of time. We will miss seeing your smiling face here.
Life at the Yawkey is good and we are fortunate that they have room for us here through the middle of January if we need it. Small community groups come in and cook or donate meals most nights. We met some folks from the Boston Bruins one night and a church group last night. It makes Brad and I think about how we should be giving more back to our community and the people who are in the same position as we are. God once again, shines through the people who love Him.
Well we better try to get some sleep and spend sometime, just the 3 of us. It will be the last night for a long time that we get to be together just the three of us. We love you little bug and we can't wait to spend the rest of our lives together...
Christmas in Boston
Saturday, December 15, 2012
The science of it all! But no big words today!
I just realized I forgot to tell you all exactly what they will be doing during the surgery. They will separate the heart circulation and make it function as a normal two ventricle heart. To do this, they will take down all the PDA and Ventricular stints that were placed in prior surgeries, along with repair any damage to the aorta from the stint. They will also remove the pulmonary bands and repair the scar tissue. They may need to remove some scar tissue that built up in the tip of the left ventricle.
Currently, Natalies heart is what they call a mixer. Her blood from her left and right ventricle mix via the stints and then is sent out to the body. The surgery will completely separate the blood flow and make the left and right operate independently, the way that ours does. That is the goal. So there is your anatomy lesson today minus all the scientific terms. I hope that helps.
Currently, Natalies heart is what they call a mixer. Her blood from her left and right ventricle mix via the stints and then is sent out to the body. The surgery will completely separate the blood flow and make the left and right operate independently, the way that ours does. That is the goal. So there is your anatomy lesson today minus all the scientific terms. I hope that helps.
Yep, Christmas in Boston.
Hi everyone,
Sorry we haven't updated, but we really haven't had any news until very recently; so here you go.
The surgeon stopped and talked to us this morning, and we are going in for surgery on Tuesday at 7:30 am. They were very surprised at the amount of growth in the ventricle in Natalie's heart, as it has grown over 30% since we were here last. The volume in the left ventricle in a normal heart is between 40 and 60, and the volume in Natalie's is now 52.
Well Brad just handed over the computer to me, so I guess you are all stuck picking out the pieces of information about her surgery from my jibber jabber. He can go figure out how we are going to watch the Viking games tomorrow.
Natalie's cath went very well yesterday, and she is slowly recovering today. It's been along day and she is still a bit agitated and unsettled. Her little throat is still a bit sore so she sounds a bit horse. Brad says she is practicing her quail calling.
We have learned over the past year to not ever make plans based on the first statement that the Doctors make. This applies to check out times, doctors round times, meeting with doctors and of course, the next step. In this case we are happy to know that the first plans that the doctors had are not what will happened next. After speaking with Dr. Del nido today we are happy to hear the numbers and know that Natalie is ready to move forward. As Brad mentioned, her numbers from the MRI are very good. Natalie's heart has grown over 30 percent and her blood volume in here left side is now at 52. He also said that currently Natalie's left ventricle is already doing 60 percent of the work. This is great news. In previous discussion they talked about recruiting part of Natalie's right ventricle to work with the left, but since her left is of adequate volume and function they feel there is no need to do that. That procedure would have been very intrusive and would have been a more difficult recovery so we are thankful that we will not have to do that. Dr. Del nido feels that once she makes it through this surgery there would not be the need to another surgery. Amen. So Tuesday we move forward. It's going to be a long few weeks, but we know that it's the best for Natalie and she is stronger and bigger now and as always God is with her.
It's amazing to look back of over the past year and see exactly where God has had his hands on our journey with Natalie. We were very fortunate to find out about her condition at 20 weeks of gestation and plan for her arrival in Minneapolis. Our surgeon at U of Minnesota encouraged us to not have the stage 1 surgery, but instead elect for the Hybrid procedure that would allow increased blood to Natalie's left ventricle to help it grow. (His idea was not fully supported by other staff, but Brad and I both felt it was the way we should approach Natalie's heart repair. The goal was to have 2 ventricles and not 1 at the end of this. Thank you Dr. St. Louis for giving us this option!) Doctors in Boston agreed to take her case and they have been fabulous. Brad and I are both so blessed to work for wonderful organizations that put family first; not only by words, but in action. Brad will be able to stay here in Boston with Natalie and I thanks to MDU and the YMCA. Our family might not be home for Christmas but we will all be together. God has been working overtime for us in this season of our lives; and we have much more than we deserve.
We have met some wonderful people over the past year and we continue to do so here in Boston. God is good. All the time. We pray for all those little heart kiddos out there and even the older heart kiddos! Lockwood family, we thank you for the kindness that you showed us. Natalie is playing with her puppy as I am typing.
The plan for the next few days is to snuggle, snuggle and snuggle some more with Natalie. They say that she will be heavily sedated for the first 3-4 days after surgery so we have to get all her snuggling in now while we can. We check in on Tuesday at 7:00 am. We will keep everyone updated as she moves through the surgery and once she is in recovery. Thank you all for your prayers, and we hope that you have a wonderful Christmas. I'd better take care of the rugrat!
Sorry we haven't updated, but we really haven't had any news until very recently; so here you go.
The surgeon stopped and talked to us this morning, and we are going in for surgery on Tuesday at 7:30 am. They were very surprised at the amount of growth in the ventricle in Natalie's heart, as it has grown over 30% since we were here last. The volume in the left ventricle in a normal heart is between 40 and 60, and the volume in Natalie's is now 52.
Well Brad just handed over the computer to me, so I guess you are all stuck picking out the pieces of information about her surgery from my jibber jabber. He can go figure out how we are going to watch the Viking games tomorrow.
Natalie's cath went very well yesterday, and she is slowly recovering today. It's been along day and she is still a bit agitated and unsettled. Her little throat is still a bit sore so she sounds a bit horse. Brad says she is practicing her quail calling.
We have learned over the past year to not ever make plans based on the first statement that the Doctors make. This applies to check out times, doctors round times, meeting with doctors and of course, the next step. In this case we are happy to know that the first plans that the doctors had are not what will happened next. After speaking with Dr. Del nido today we are happy to hear the numbers and know that Natalie is ready to move forward. As Brad mentioned, her numbers from the MRI are very good. Natalie's heart has grown over 30 percent and her blood volume in here left side is now at 52. He also said that currently Natalie's left ventricle is already doing 60 percent of the work. This is great news. In previous discussion they talked about recruiting part of Natalie's right ventricle to work with the left, but since her left is of adequate volume and function they feel there is no need to do that. That procedure would have been very intrusive and would have been a more difficult recovery so we are thankful that we will not have to do that. Dr. Del nido feels that once she makes it through this surgery there would not be the need to another surgery. Amen. So Tuesday we move forward. It's going to be a long few weeks, but we know that it's the best for Natalie and she is stronger and bigger now and as always God is with her.
It's amazing to look back of over the past year and see exactly where God has had his hands on our journey with Natalie. We were very fortunate to find out about her condition at 20 weeks of gestation and plan for her arrival in Minneapolis. Our surgeon at U of Minnesota encouraged us to not have the stage 1 surgery, but instead elect for the Hybrid procedure that would allow increased blood to Natalie's left ventricle to help it grow. (His idea was not fully supported by other staff, but Brad and I both felt it was the way we should approach Natalie's heart repair. The goal was to have 2 ventricles and not 1 at the end of this. Thank you Dr. St. Louis for giving us this option!) Doctors in Boston agreed to take her case and they have been fabulous. Brad and I are both so blessed to work for wonderful organizations that put family first; not only by words, but in action. Brad will be able to stay here in Boston with Natalie and I thanks to MDU and the YMCA. Our family might not be home for Christmas but we will all be together. God has been working overtime for us in this season of our lives; and we have much more than we deserve.
We have met some wonderful people over the past year and we continue to do so here in Boston. God is good. All the time. We pray for all those little heart kiddos out there and even the older heart kiddos! Lockwood family, we thank you for the kindness that you showed us. Natalie is playing with her puppy as I am typing.
The plan for the next few days is to snuggle, snuggle and snuggle some more with Natalie. They say that she will be heavily sedated for the first 3-4 days after surgery so we have to get all her snuggling in now while we can. We check in on Tuesday at 7:00 am. We will keep everyone updated as she moves through the surgery and once she is in recovery. Thank you all for your prayers, and we hope that you have a wonderful Christmas. I'd better take care of the rugrat!
Thursday, December 13, 2012
Christmas in Boston?
Well after a long day, Natalie is out like a light. She did so well today. We started early this morning with EKG, blood draw and X-ray. You would think after looking at that list the tough part was over. Well truth is that was the easy part. Tough for Natalie because of the pokes and being held down, but she did so great. She smiled at everyone and made people smile all day long. She must have found her voice, because she was squawking and talking all day.
As I said that was the easy part. As we finally approached our time to meet with the doctors, all our lead up conversations kept throwing up this red flag that Brad and I tried to avoid hearing: SURGERY. We knew we would be here for the cath and after several conversations with the nurse practitioner over the past few weeks, we let ourselves believe that we would be home in time to watch the Vikings win on Sunday. After a conversation with the NP this morning, she said talks with the surgeon last evening led her to believe that we would most likely be admitting Natalie on Monday with her open heart surgery scheduled for Tuesday. Brad and I both just sat there with blank looks on our faces and in shock. What we had tried to avoid believing was real. Natalie will most likely spend her first Christmas on the 8th floor of Boston Children's Hospital in recovery.
Tomorrow we are lined up for another long day starting at 7 am sharp. We will admit Natalie for MRI, sedated echo and heart catheterization. During these test the doctors will be looking at the heart and testing sizes, pressures and functions of the heart in preparation for Tuesdays Surgery. We don't know exactly what they will do on Tuesday until we meet with the doc's tomorrow evening and even then, we won't know what the surgeon decides to do until he is in the heart and performing the actual surgery. The one thing that we all know is that the goal is for Natalie to end up with a two ventricle heart when this is all done. We know that they will do what is best for Natalie.
The science behind all this is so amazing and God has given these doctors amazing talent and knowledge to be used on his tiniest little sheep. I just wish our little sheep didn't have to go through this. She is not alone. We are all praying for her and she is very strong and healthy. We thank you all for your prayers and support.
We better get to bed now as morning comes quickly. Natalie is snoozing and Brad and I are cuddled up in the single bed preparing for a long day tomorrow. Natalie and I are sharing the "big" bed. It's a double.... Brad gets the single bed all to himself. Lucky Man.
We will keep you all posted tomorrow night after we learn more of the exact plan. Good night!
As I said that was the easy part. As we finally approached our time to meet with the doctors, all our lead up conversations kept throwing up this red flag that Brad and I tried to avoid hearing: SURGERY. We knew we would be here for the cath and after several conversations with the nurse practitioner over the past few weeks, we let ourselves believe that we would be home in time to watch the Vikings win on Sunday. After a conversation with the NP this morning, she said talks with the surgeon last evening led her to believe that we would most likely be admitting Natalie on Monday with her open heart surgery scheduled for Tuesday. Brad and I both just sat there with blank looks on our faces and in shock. What we had tried to avoid believing was real. Natalie will most likely spend her first Christmas on the 8th floor of Boston Children's Hospital in recovery.
Tomorrow we are lined up for another long day starting at 7 am sharp. We will admit Natalie for MRI, sedated echo and heart catheterization. During these test the doctors will be looking at the heart and testing sizes, pressures and functions of the heart in preparation for Tuesdays Surgery. We don't know exactly what they will do on Tuesday until we meet with the doc's tomorrow evening and even then, we won't know what the surgeon decides to do until he is in the heart and performing the actual surgery. The one thing that we all know is that the goal is for Natalie to end up with a two ventricle heart when this is all done. We know that they will do what is best for Natalie.
The science behind all this is so amazing and God has given these doctors amazing talent and knowledge to be used on his tiniest little sheep. I just wish our little sheep didn't have to go through this. She is not alone. We are all praying for her and she is very strong and healthy. We thank you all for your prayers and support.
We better get to bed now as morning comes quickly. Natalie is snoozing and Brad and I are cuddled up in the single bed preparing for a long day tomorrow. Natalie and I are sharing the "big" bed. It's a double.... Brad gets the single bed all to himself. Lucky Man.
We will keep you all posted tomorrow night after we learn more of the exact plan. Good night!
Wednesday, December 12, 2012
We made it to Boston
Hi everyone,
We made it to Boston. We're relaxing a little bit, and getting ready for a long day of tests tomorrow for Natalie. She did really well on the flights today, and Heidi and I are very thankful for that. We have a 7:30 am check-in time tomorrow morning, and we expect to be there all day. They will be doing all of the pre-operative testing before the big day on Friday. We'll be sure to update tomorrow afternoon/evening when we know a little more. As always, we appreciate all of the prayers and support from everyone.
We made it to Boston. We're relaxing a little bit, and getting ready for a long day of tests tomorrow for Natalie. She did really well on the flights today, and Heidi and I are very thankful for that. We have a 7:30 am check-in time tomorrow morning, and we expect to be there all day. They will be doing all of the pre-operative testing before the big day on Friday. We'll be sure to update tomorrow afternoon/evening when we know a little more. As always, we appreciate all of the prayers and support from everyone.
Thursday, December 6, 2012
Now Boarding, Flight 1858 to Boston
After a few months of living in denial, except on Tuesdays,
I guess it’s time to face reality again.
We leave for Boston on Wednesday, November 12th for another
procedure for Miss Natalie.
Over the past few months we have been seeing our
cardiologist here in Bismarck and have been very optimistic that Natalie’s
heart is actually growing and showing signs of increased function in the left
ventricle.
The hard part comes with the uncertainty of this visit. I have such a hard time not knowing how long
or what exactly is going to happen once we get there. We do our part and take her to all her
appointments and Dr. Fernandez says everything looks good and that is all we
know. We really have no idea on what
will actually happen while we are there. Dr. Fernandez thinks that they may go
in and dilate or enlarge the stint they placed in September or they may add
another stint to increase the blood flow, or they might do something completely
different. We have no idea. That is the hardest part. We just have to sit back and trust the
doctors that we have never meet and only talked with on the phone one time for
10 minutes. She is our baby and we have
no idea what they have planned for her. That feeling is just more than I can
take now as we get closer to our trip.
We will check in on Thursday for all her pre-op tests. They
say to expect to be there for up to 8 hours.
Are you kidding me? Eight hours
with a 6 month old. Then we will bring her back on Friday morning for her
procedure. We will have to stop feeding her sometime in the early morning and I
can’t imagine that will go over very well. Natalie is a great little eater
now. Once they take her back she will
have an MRI and Echo before she goes into surgery. I remember so clearly the
last time went sent her back. She didn't know anything was going on and she
looked so little on that big bed. She was just looking around. I can’t imagine what it will be like this
time when we have been snuggling together for 6 months now and she laughs and
smiles and talks now. It’s so different this time.
Once she is in surgery they will do a heart cauterization through her femoral artery and move into the heart where they will check her
pressures, values and measure for growth in the left ventricle. They can get the best look at her heart this
way. After doing all of this they will determine the best plan for moving
forward with Natalie. Right now the plan
is just to have the cath, but if they see something that they feel needs to be
addressed now they have her scheduled for open heart surgery on December 18th.
I pray that they come back and say that everything looks
great and we can send her home to keep growing. I am not emotionally ready for
a big open heart surgery and me being selfish, I don’t have any desire to spend
her first Christmas in Boston. It’s bad
enough not to be able to go to Billings for Christmas, but to be in Boston for
an additional 2-4 weeks after surgery is not high on my Christmas wish list.
When people talk about faith in God, this experience makes
it all much more real. Here, let me hand
my baby to a total stranger and we will talk to you in about 3 hours. The only
thing holding her at this time is the hands and arms of God. Oh, how you believe in God at these moments
more than ever. It’s a good thing that we are handing her over to the hands of
God and he is not a stranger. Not a stranger at all. He has his hands and feet
working on this earth every day. Praise God for the wisdom and talents that he
has placed in the hands of these doctors who we do not know. We know God and he
knows us. He loves Natalie more than we do, if that is possible.
Brad and I will keep you all updated through the blog and on
facebook . Thank you to everyone who has been praying for Natalie. We get weak and distracted. I told Brad I can see how the disciples fell
asleep while trying to pray for hours. I can barely make it 3 minutes some
nights and that is where you all pick up for us. Your prayers and our prayers
are heard by the same God! He knows when
Brad and I are weak and he hears all your prayers for us and gives us strength
to keep going. Natalie is so lucky to
have God armies praying for her. Thank
you to everyone!
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