They have finished with the surgery, and we are just awaiting for them to move her upstairs. It will be another hour, but she is looking great.
Dr. del Nido just came and visited with us about the procedure. He shared how the procedure went and said that she is doing great. Her heart is looking good and the pressures are all adjusting. The next 48 hours will be the true test, but she is responding well to the repair. They found another little hole in her heart, and closed it along with taking down the hybrid surgery and stints and repairing the holes. They removed some fibrous tissue in the tip of the left ventricle that uncovered a small pocket they didn’t know was there. This actually added more volume to the left ventricle.
Dr. del Nido said that they are highly pleased with her progress and we will continue to watch her closely over the next 48 hours. Once that time has passed he feels that we will be one the way to a full recovery. We are so amazed and so blessed.
Please continue to pray that she recovers quickly and is comforted from pain. We can’t wait to see her!!!!
Merry Christmas from Boston!!!!!
We just got another update, and it was very good. They finished the initial procedure, and then finished evaluating that procedure. It was working as planned, and they are moving forward. This means that she now has a normally functioning, two ventricle heart; just like all of us have. There should be no more surgeries in her future, and she’ll be on the road to a full recovery. Heidi and I are very grateful for this, and I’m not sure it’s really sunk in yet. Thank you for the prayers, everyone; this entire scenario is nothing short of a miracle. When we learned of her condition a year ago, we were expecting three years of surgeries, followed by a rather difficult life for Natalie. But, now we look to be done with surgeries, and her life is going to be almost as if it were if she were born without this condition. We thank God for this. We’ll update again later on after Natalie is up in her room in NICU resting, and we know for sure that the surgical process is complete.
We just got an update on Natalie. The repair is finished, and they are in the evaluation stage. They will evaluate how the heart is functioning and see if the repair will work for Natalie or if they need to do a different repair. Mainly, they will be watching to see if the left ventricle will handle the work load. She is technically on the bypass machine, but her heart is beating as they evaluate. It may still be several hours before we have a final outcome, but this is good news. She is doing wonderfully! We should get another update in about half an hour. Praise God!
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
Bright eyed and bushy tailed.
Not anymore. Sweet Dreams.
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, Natalie’s 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.