Sorry we haven’t updated for a while, life has been a little crazy. Heidi has done quite a bit on Facebook, but we thought we’d update here as well.
As you probably know, Natalie was recovering from her open heart procedure and she wound up catching the flu (H1N1). This set her recovery back quite a bit. Just when it seemed she was getting better, she had a really bad day last Wednesday and they found out she had contracted pneumonia. So, it took her quite a bit of time to recover enough from that so they could do the cath procedure. They finally were able to do that yesterday.
The cath showed that the numbers were where they expected. Dr. delNido is deciding whether or not he needs to tighten the bands on her pulmonary arteries a little more or not. If so, he would have to open the chest cavity again. It would be a minor procedure compared to the others she has been through, and it shouldn’t take long for Natalie to recover. Or, he may decide that he doesn’t need to do anything; we should know more later today.
Natalie is doing well. Her numbers improve every day, and we’re hoping that they’ll allow her to wake up slowly over the next day or two. Maybe they’ll be able to extubate by this weekend. We pray that she can recover from all she’s been through and finally begin to get well and return to her normal self. It seems like an eternity since we’ve had Natalie with us.
I’m back in Bismarck this week working. Heidi’s parents have been out there, which has helped immensely. Heidi’s dad left this morning to go back home, and her mom will be there until next week. I’ll fly out next Friday to spend the weekend, and hopefully, a discharge date will be close by then.
Thank all of you again for all the prayers and support as Natalie goes through all of this, we really appreciate it. We will try to update more often, and we hope to all be together at home again soon.
It has been a while since we’ve updated, and Natalie has made a lot of progress. She came off of the ventilator on Wednesday evening (thankfully, she hated that tube in her throat), and was moved out of the ICU today. She’s now in recovery and being weaned off of the different sedatives and pain drugs they have her on.
It is a trying time for us. I had to fly back yesterday, and it is really hard to be away from the two gals. But, I also have to work, so we made the decision to have me fly back. Fortunately, Heidi’s mom, Barb, was able to fly out to be with Natalie and Heidi while I’m gone. We’re very grateful that she was willing to do that, I’ll have to quit telling all those mother-in-law jokes. I’ll fly back out on Friday (like there wasn’t enough reason to look forward to the weekend), and hopefully by the time I fly back home next Monday, the gals will be close to coming home.
There really isn’t a whole lot else to update. Natalie gets stronger every day, and we continue to be amazed at how strong she’s been through all of this. We’re thankful for the continued prayers, and hopefully we’ll all be home together soon.
It’s been a long time since I have posted and I thank Brad for his dedication to posting for you all. It’s sometimes so hard to focus my energy and attention to write about everything that is going on. Natalie is doing very well, considering that the changes they made during this surgery changed how her blood flows and how oxygen is delivered to her body. Her blood, red and blue, now mix as needed. It’s very noticeable when she is upset or de-stats how her lips and eyes now show the blue tint that is common with heart babies. The nurses have been working very hard to keep her calm and allow her time to heal. She hates that breathing tube and you can tell how frustrated she gets with it. It’s hard to watch her struggle to settle down, but we hope that it’s only for a little bit longer. We all hate the breathing tube.
Today they were able to take the nitric oxide away and she was able to tolerate it. The nitric helps to keep the pulmonary veins open and the oxygen flowing. We were able to transition that all to the sildenafil that she was on at home. That was a huge step. We didn’t realize how big until they told us that if she wasn’t able to come off it successfully they may have had to go back in for another surgery to try and correct it. We are so relieved that she did well.
Tonight we continue to wait for her to get more fluid off. Once she gets the fluid off her lungs, she has better chance of being successfully extubated. We are not sure when that will happen, but that is one step closer. She is starting to look like herself again.
We are waiting to play catch and play on the ipad together. She has become quite the comedian, hiding the ball from Brad under the bed and she loves to play catch.
We have come a long way since last Monday night. That might have been one of the hardest and longest nights of our lives. I can’t remember the last time that I cried that hard. We felt hopeless and so sad for our little girl. We were afraid that we were headed home to list her for transplant or worse, just home with out options. We were so relieved after meeting with Dr. del Nido. We were so happy that there was something that he could do. Amazing, the working hands of God in human form. He is amazing and he keeps very close tabs on Natalie. We know that she is not done with her heart journey and we are hopeful that we are now headed in the right direction.
Here are a few pictures from the week. We thank you all for your continued prayer for both Natalie and us. Your encouraging words and support help us get through it all. God has given us peace and rest. We couldn’t wake each day with hope for Natalie without Gods unfailing Grace! Praise the Lord!
February 3, 2014—Sleeping Beauty
Day One–Post Op
Well, like the title suggests, there isn’t a whole lot of new news to share. They’re keeping Natalie asleep, and that probably won’t change for another day or two.
They let her wake a few times over the last few days, and she was a little too feisty. Her oxygen stats dropped, so they had to let her go back to sleep. It’s not unexpected, considering the amount of fluid she still has in her body. She looks much better today, so hopefully they’ll have better luck waking her tomorrow.
We’re just hanging out here with her, and getting ready to enjoy the Super Bowl on this massive 10 inch hospital TV screen (Go Broncos!). We did get out a little today to see the USS Constitution (Old Ironsides), the site of the Battle of Bunker Hill, and some of the older areas of Boston.
Hopefully, tomorrow will bring more news and some more exciting updates. Thanks again for the continued thoughts and prayers, we’ll update again soon.
This will be fairly short, but we’ll give a more detailed update later this evening.
Natalie has made it out of surgery, and she did really well. They made the adjustments to the pulmonary artery & aorta, tightened the PA bands, and took down the wall between the left & right atrium. They are going to keep the breastbone separated for now, just in case they need to loosen the PA bands. It will depend on how her oxygen saturation looks in the next couple of days. She is recovering now, and we’ll be able to see her in an hour or so.
She is going to be taken to the ICU, and will remain there for several days. She will be kept asleep while her body adjusts, but we will at least be able to see her and sit in the room with her. I’m guessing she will be kept in a coma for at least four days.
Like I said, this is pretty short. We’ll update later when we get up in the room with her. I’ll have Heidi update then, she’s a little more wordy than I am. Thank you everyone who has been praying and thinking about Natalie and us. We’re very thankful.
It’s been an extremely long day, but we’re finally back to the room. The meeting with the surgeon went well, and it looks like we have a plan for Natalie.
As we said yesterday, her pressures were up and her current anatomy isn’t going to work. They have a surgery date scheduled tomorrow, and we’ll take Natalie over at 7:00 am. Dr. delNido will be doing an open-heart procedure to get the atrial pressures and her lung pressures to go down. Right now, some of the pressures are so high that she isn’t even a candidate for a transplant or any other procedure. They will join the pulmonary artery and aorta in order to shunt blood and lessen the lung pressures. They will also put a band on the pulmonary artery. They will keep her in a coma for several days after the surgery in order to keep all the pressures down as her body adjusts to this new anatomy.
This will be done in order to get her to a place where we will have some options. The transplant is still an option, but obviously that would be done as a last resort. We will monitor for a few months after the surgery to see how she is adjusting, and how her heart is doing. If all is well, there is a good chance that Dr. delNido could do another procedure to make the right side of her heart do a majority of the work while keeping her left side operating and helping the right side. This would be optimal since she’d be able to keep her heart and would have a much better quality of life than she would if she has a transplant.
This was just a quick overview of what they’ll be doing. Heidi and I will update as we learn more, and to let everyone know how each step along the way is going. Thank you again for the prayers, we appreciate them very much.