We're back!

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:)

11/12/14

Psalm 66:3-5

Say to God, "How awesome are your deeds!  So great is your power...All the earth worships you and sings praises to you; they sing praises to your name." Come and see what God has done: he is awesome in his deeds toward the children of man. 

Things are going great! Nora was discharged from the hospital Saturday evening.  Sunday morning we packed up and moved to the Ronald McDonald house in Manhattan.  The remainder of the trip will be follow up appointments at the office in Manhattan.  It's not next door, like the RMH in Long Island, but it's only about a 15 minute walk away.  Evan left Sunday afternoon, so I had one night just Nora and me, and we did just fine:)  On Monday I walked to the doctor's office only to find out that the hospital hadn't scheduled the appointment like they said they had.  I scheduled it for the next day and got a nice little walk in-it was a beautiful day!  Kristen arrived and we decided to walk around the city since it was so nice.  Tuesday we saw the doctor and everything looked great!  We celebrated with a frozen hot chocolate from Serendipity, which is just a couple blocks from the office.  So delicious-I think we will make that a tradition:) On Friday, we will discuss the timeline of things/when the next surgery will be and what we do from here.  

We love having Aunt Kristen here!

Nora seems to feel better each day.  She isn't needing to be held constantly, and I only give her pain medication occasionally.  She is a tough little girl!  She loves waving at people and gives them a shy little smile. Her little smile is so contagious:) I think she likes being around all the people here. 

We are so grateful that we were able to come to NY and work with these doctors.  We feel like she is in the best possible place and praise God for getting us here.  I met a family from Switzerland who was here for their 17 year old son who also has a lymphatic malformation.  His is on his face just like Nora's.  He has had surgeries in Switzerland that did not go so well, but he's seen very good results since starting with Dr. Waner.  We can't thank God enough for the way he led us here and for the amazing way he has been providing for it all.  We can't thank you all enough for the overwhelming love and support and generosity you continue to pour out on us.  We are so grateful and humbled. We pray daily that you will be blessed as you have blessed us.  

We also can not thank everyone enough for your persistent prayers.  It means so much to know that our family is being covered in prayer.  Please continue to pray for healing, protection from infection and sickness, and restoration of facial movement.  She is able to move her mouth, but still doesn't have complete movement, specifically the bottom right side.  Please also pray for Lina and Belle as this time is kind of crazy for them too.  

For anyone in the Milwaukee area, Consider The Lilies floral designs is doing a fundraiser for Nora. The owner, Amanda, has created a design called the "Nora's smile" and will be donating all proceeds from that arrangement! For those of you on Facebook, there is a link on my page, or you can search "Consider The Lilies" on FB.  You can also visit her website  www.considertheliliesdesigns.com

Thank you Amanda! 

This picture was right after surgery yesterday

Nora is doing well today. She is still in pain and just wants to sit in our arms, but she is a little more awake. The right side of her face is pretty swollen, even more than yesterday. The doctors don't think it's a problem right now, we'll just watch it. She is such a sweetheart! This morning when one of the doctors came in, she got the sweetest look on her face and gave him a shy little wave-it was adorable. She is such a trooper! 
We don't know how long she will be in the hospital. Tomorrow (Saturday) would be the earliest she would be able to leave. I'm hoping no later than Sunday morning because Evan leaves Sunday afternoon. After Nora is out, we will be here for another week for check ups, and to talk about the next steps. My sister (Kristen) will be coming on Monday to help and hang out-so excited to see her!
Thank you so much for all the prayer and encouraging notes. Whenever I feel like I'm on the brink of losing it, someone texts, emails or leaves a voice mail with just what I needed-God is so good!  I got maybe two hours of sleep last night, but was able to sleep today once Evan got to the hospital.  I'm so glad he is here so we can trade off! 
Please continue to pray for healing for Nora and for those nerves. Because her face is still so swollen it's hard to tell the full extent of things.  The right side of her mouth isn't moving like it usually does, but we are praying once the swelling goes down it will be better.  She is asleep right now so I'm going to join her! Thank you for praying!

We got a couple smiles today!

Chin is trimmed;-)

When my nephew was praying for Nora, he prayed for the doctors "when they trim Nora's chin"-I thought that was a good way of putting it:) Her chin is trimmed! Nora did great during the surgery and the doctors felt it went really well. I will give details and pics later but right now I am writing this with my eyes closed and need to sleep. I just wanted to let everyone know she is doing well! Thank you so much for praying! Please pray for the healing process and please also continue to pray for the nerves-we won't know how things really are until she wakes up more. Thank you😘

one last update before the big day..

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"