Nora on the plane after being woken up by mommy trying to take a picture:)
Monday morning started at 3am. Our flight didn't leave flight didn't leave til 6:45, but we wanted to make sure we had enough time to get through security with all of Nora's stuff, so we left the house at 4:30 (thanks for picking us up dad!) We had a letter from the doctor for all Nora's equipment, supplies, and medication, but even with that, I've heard some people had trouble with security. We ended up not even needing the letter. Because Evan is military, we were 'TSA approved' and we didn't even have to take our stuff out of the bags! So security was nice and easy. I was a little nervous about the flight because one mom I talked with said her son with a trach needed oxygen during flights (even though he never used it any other time). But Nora did great on the flight! It wasn't a full flight so we were able to take her car seat on and she slept for the first part of the flight. She probably would have slept longer, but she was smiling in her sleep, so of course I had to try to take a picture;) and I woke her up! She was very happy while she was awake. She just played in her seat and chewed on toys:) We couldn't have asked for a better flight!
After the flight, we made it safe and sound to the Ronald McDonald House in Long Island. I had never been to a RMH, so I wasn't sure what to expect. The one we are staying at was recently renovated (they just finished two weeks ago!) and it is amazing! Everything is beautiful and the people here are so nice and helpful. Every night, different volunteers from the community make dinner-what a blessing! There is also a pantry with food that has been donated from the community that we can have anytime.
A few pics of the RMH
Lina asked if Ronald lived at the house, so we took this picture for her
After we got to the RMH, we dropped our stuff in our room and then headed over to the hospital for some appointments. The hospital is right next door so we were able to walk right over. We talked with the Dr. that will be taking care of Nora's airway during the procedure, and the anesthesiologist, and gave the same information to a million different people;-) Nora also had a physical and blood work done. After all that, she was then declared healthy and ready for surgery!
There had been a mix-up with the equipment and supplies that our medical company was sending to the RMH for us, so after her appointments we worked on getting that straightened out. I won't bore you with the details, but everything eventually made it there and got all set up and we all went to sleep exhausted:)
Tuesday, we had one last appointment in Manhattan at 10:15, so we left the RMH at 9. There are volunteer drivers at the RMH that will take you to medical appointments that aren't within walking distance-what a huge blessing! We got to the appointment at 10:15 on the dot...and then waited for two hours! Nora has been so great during all the appointments and running around. She didn't mind waiting, and we didn't have to be anywhere else, so it was fine:) I talked to another mom in the waiting room who said that it's always a wait to see Dr. Waner, but it is very worth it. She had great things to say about him, which was nice to hear:)
We didn't want to let Nora crawl around on the floor in the waiting room, but after an hour, she would not be restrained any longer!
It was really nice to meet Dr. Waner. He was very knowledgeable about Nora's condition, and you can tell he has dealt with this before. His plan for tomorrow is to check her airway first and possibly do some lasering in there. (We actually just found out that insurance is saying they will not cover the laser, so we are going to tell him not to do it tomorrow. We will hopefully get that sorted out by the time she has her next procedure:) He will then do some de-bulking on her face under her chin. He was very positive about things and said he thinks things should go very well. We feel like he has a good understanding of things and we feel very comfortable and at peace with the surgery tomorrow.
We wore her out in the waiting room, so we were able to have a good conversation with the doctor:)
After that appointment, we walked around the city for a while. Nora slept through most of it:) It was fun just walking and talking (and eating;) We haven't had much time just Evan and I, so it was kind of like a date (during the times Nora was sleeping:) We decided to take the train back to Long Island-we should have thought that one through a little more! We had the stroller and baby carseat, along with the suction machine and her emergency supplies and a bunch of other stuff so we couldn't really fold up the stroller. We left it open and stood with it by the entrance, making it difficult for people to get on and off. Thankfully everyone was very nice and helpful and didn't make us feel like the lunatics I'm sure we looked like:) We made it back to the RMH and, once again, went to bed exhausted.
Today (Wednesday) we didn't have any appointments! We enjoyed not having anywhere to be:) There were a bunch of phone calls about insurance and last minute things for tomorrow, but over all, a nice day.
We have been so blessed by all the love and encouragement from everyone. Nora is a lucky little girl to have such amazing support! Thank you for being a part of this journey with us. We cannot thank you enough! A huge thank you to my parents and everyone else at home taking care of Lina and Belle. Knowing they are being well loved and taken care of makes everything here much easier:)
When Nora was born, one of the doctors said things had gone better than they could have ever hoped. We are praying that will be the case tomorrow! Some of the are possible risks during the surgery are nerve damage, excessive blood loss and infection. Please continue to pray for protection for Nora and wisdom for the doctors. The surgery is scheduled for 8:30am (Eastern time)
We are so thankful for how God has been working in little Nora's life and are excited for this next step tomorrow. Psalm 63:2-5 says,
I have seen you in the sanctuary
and beheld your power and your glory.
Because your love is better than life,
my lips will glorify you.
I will praise you as long as I live,
and in your name I will lift up my hands.
I will be fully satisfied as with the richest of foods;
with singing lips my mouth will praise you.
The last part about singing praises reminded me of the Matt Redman song, 10,000 reasons. I pray that tomorrow "whatever may pass and whatever lies before me, let me be singing when the evening comes"
No comments:
Post a Comment