Dec 15, 2012 | Natalie's Life
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!
Dec 13, 2012 | Natalie's Life
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!
Dec 12, 2012 | Natalie's Life
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.
Dec 6, 2012 | Natalie's Life
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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