We made it home! We got back late last Monday night (the 17th) . Our flight was delayed several times, so we got to hang out for 4 hours in LaGuardia airport. Nora was smiling and waving and entertaining every one around us while we waited. She put a smile on everyone's face and made the wait much more bearable (for everyone else;-) One guy bought her a little stuffed toy because he said she was just so sweet. Seriously. Such a sweetheart! I am so thankful my mom was able to come and help me fly home, I wouldn't have made it without her! With all the stuff we had to keep track of, plus trying to contain a very active little girl in a dirty, crowed airport-I was exhausted by the time we boarded. Once we got on the plane, Nora slept the whole flight home. It is SO good to be home!
Nora came down with something after we got home-I'm thinking something she picked up in the airport. She is very congested and has been needing to be suctioned a lot more than usual (like every 5 minutes at times!) She has also been spitting up a considerable amount a couple times a day. The Drs had me bring her in to make sure it is nothing serious. They think it's probably something viral and we just have to wait it out. If you would, please pray that this sickness will be over soon and that she will stay healthy!
Backing up a little...Nora got her stitches removed last Friday (the 14th) She did so good. She wasn't happy while they were taking them out, but she was all smiles as soon as they were done. I didn't count, but I would guess there were close to 100 stitches? However many, it was a lot. But the incision is healing really well! She still has the drain in the right side of her face, which is a challenge. I try to keep it pinned on the back of her clothes to keep her from playing with it or chewing on it (because medical equipment is just so much more fun than toys:) It gets tugged on sometimes, but there is a stitch holding it in, so thankfully it has stayed in. It makes me shudder just thinking of it. My poor baby! She is such a trooper. The doctor said the drain will need to stay in for 2-4 weeks (it's been over two weeks now) I empty the drain several times a day and measure the output. So far, it hasn't slowed down at all. She started her medication again on Monday, and the doctor thinks that might help reduce the drainage.
I didn't want to scar anyone with pics of the incision right after surgery! These pictures are recent. As you can tell, the incision starts at the top of her right ear, goes under the chin, and stops just below the left ear. That is the drain behind the right ear. In the bottom picture you can see the bulb thing that collects the drainage that I have pinned to her pjs in the back:)
As for the next steps, we are planning on going back to NYC the beginning of January for an airway procedure. Dr. Waner said they have gotten kids with worse airways decannulated! (That's the fancy word for getting rid of the trach:) It was really exciting hearing them talk about hopefully getting her trach out within the next couple years!! I can't even imagine. I know it's not a for sure thing, but it's exciting to think about! Before she was born, we were told that, if she survived delivery, she most likely would have a trach for life, and there was a good chance she would never eat by mouth or be able to talk/make noise. But "My God is greater, my God is stronger, my God is higher than any other, my God is healer, Awesome in Power" (Chris Tomlin) ...Nora says "Mama!" Ok, not intentionally:) But she makes the noise that sounds like "Mamamamama" It's amazing! She's been making all kinds of noises-my heart bursts just thinking about it:) AND, she's been eating food by mouth! Not a ton, and still only stage 1 baby food, but I am positive that someday soon we will be able to ditch the G-tube and she will be eating steak;-) It would be amazing if she could lose the trach as well!! We are so thankful for the amazing work God has done and is continuing to do in Nora's little body. She is a constant reminder God's goodness.
This past year has been filled with countless blessings from family, friends, and strangers. Constant prayer, notes/texts/emails/calls of encouragement, thoughtful and generous gifts, childcare for the older girls, meals, help with the house-just thinking about it all blesses me all over again! The fact that many of these blessings come from people we have never even met just blows me away. (And I hope we get to meet you all some day!) There truly are no words to adequately express our gratitude for everything. Thank you to all of you that have been the hands and feet of Christ to us. I don't know what we would do with out you. You have helped considerably lighten the load of this journey. We thank and praise God for all of you!
For those of you asking how to pray: Nora still does not have complete movement of her mouth, but it has improved a little. The doctor said that it might take a while, but she should regain all movement since none of the nerves were cut. Please pray that will be the case! Please pray that the drainage would stop so that the drain can be removed soon (and that the drain would stay in place and the drain site would not become infected!) Also, as I mentioned above, please pray for healing from whatever sickness she is currently fighting. Again, we are so grateful for you prayer warriors that are lifting Nora up. It is such a blessing knowing that so many of you have Nora on your prayer list every single day. As I've said before, we know you're praying, because we see God answering! I was reminded of the story in Genesis where God told Sarah that she was going to have a baby. She laughed at him and God responded, "Is anything too hard for the Lord?" (Genesis 18:14) Like I said above, Nora has already blown away our expectations and I am so excited for God to continue his healing work!
Annie (my Cousin-in-law:) is doing a Thirty-one fundraiser for Nora. If you have some Christmas shopping to do or need some help getting organized, check out this link for some cute, fun products!
https://www.mythirtyone.com/forms/frm_event_my_events.aspx
You should be able to choose "shop now" on Nora's fundraiser. Annie will be taking orders until December 9th, to ensure items will arrive by Christmas. If you have any questions about the specials or anything else, you can email her at anniemcclain31@gmail.com
I don't think I've ever posted a picture with her G-tube? It's the white thing that is peeking out from under her shirt. There is an extension that hooks into that tube and formula is pumped into her belly (unless she chews on the extension and it comes out... then everything in her stomach pours out onto everything around her while the pump feeds the ground, or the bed-stinker!) I just couldn't resist posting one more pic of this little cutie:)
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