tomorrow

I don't have time to write, but I just wanted to ask for prayer for our travels to NY tomorrow morning (Tuesday).  Nora will be having another airway procedure on Wednesday morning-please pray things go smoothly! I am so grateful that I can send this out and know that so many are praying-we are so grateful!!  I will try to update after the procedure on Wednesday

It's all good

I really did have this written a while ago, but I wanted to add some pictures...which meant getting them off my phone and on to the computer, which meant thinking about it when I actually had time to leave my phone hooked up for a while (because it had been a long time since I uploaded pics and there were a zillion) And then, of course, I have to look at them all...anyway, today I did, and I feel very accomplished;-) It's the little things... 

We did end up making it home that night (the last time I posted) Thank you so much for your prayers!  God worked everything out perfectly. Nora did great on the flight-she is such a good little girl.  She slept the whole time while Angie and I played cribbage:)  Thank you for all your help, Angie!!

Nora has been doing great.  Her tongue stopped bleeding soon after we got home, which was a huge praise!  She has had ear infections and pink eye, but those were easy fixes.  She is healthy-ish at the moment, which we are so thankful for.  She is such a happy little girl!  It has been so great lately with her being healthy.  I have even slept through the night a few times!! I've started trying to catching up on all the things that have taken a back seat for the past 15 months (I can't believe Nora is 15 months!) For a while, if it wasn't life or death, it wasn't getting my attention.  My main focus was keeping my three sweeties alive and happy.  I can't say that they are always happy, but they are all still living, so I count that as a win;-) 

As you can see in the first picture, the right side of Nora's face can get really red when she is sick.  As you can also tell from the pictures, we have to make sure we close the bathroom door!  Don't you love the green and brown toilets?  Perks of buying a foreclosure;-)

Nora is getting so big and doing all kinds of fun things.  She has been making a lot more sounds since the procedure and is becoming a noisy little girl-I love it! She loves waving and blowing kisses and giving hugs-she is such a lover.  I love seeing her tackle her sisters with a big hug and slobber kisses (as Belle calls them:)  Nora always wants to be with Lina and Belle, and they are (usually;) very happy to have her around. They are so cute to watch together.  I love my sweet little girls:)  I could go on and on about them, but I'll spare you;-) I am so thankful I get to be their mommy (although I won't lie-there are definitely days that year-round boarding school sounds very attractive;) 

Nora is a little monkey, just like her sisters:)

Nora was doing really well with eating by mouth, and then decided she didn't want to anymore.  She would eat one or two bites and then refuse any more.  It can be so frustrating, but I have to remind myself that she is doing so much more than we ever thought she would be able to!  God is so good.  We've been working with a speech therapist to help with Nora's oral feeding.  With her help, we realized that the reason Nora stopped eating was because she hated the baby food!  I was afraid to give her pieces of food, but she is eating real food now and loves it.  She still isn't eating a ton, but she is making great progress!   Such a huge praise.  

These two pictures were taken exactly a year apart-what a difference a year has made!

Last week, the ENT did a scope of Nora's airway and it showed improvement! It was such an encouraging appointment-so amazing to see physical proof of God working!  I don't really know what I'm looking at when they're inside, but I could definitely tell it looked better. God is so good!

Belle is great company at Nora's appointments:)

Thank you a million times over to those of you who continue to pray for Nora and our family.  We are so grateful for all your support and encouragement.  We thank God for you all daily!  For those of you asking how to pray, please pray for continued health for Nora (and the rest of the family:) She could also use prayer for her oral feeding and overall development.  She is on track with most things, but there are still some areas where she is behind.  We will be going back to NY at the end of March for another airway procedure.  Please also pray that these surgeries and procedures would continue to go well and be effective.  Thank you!!

"Now to Him who is able to do immeasurably more than all we ask or imagine...to Him be the glory forever and ever!" 

Ephesians 3:20-21

1/24/15

Nora did great on the flight here-she slept for half and then caught up on some reading:)

The procedure went really well on Wednesday, and Nora is recovering well. They worked on the area near her epiglottis, and the doctors were happy with how things went. There is some swelling, which is normal, and her tongue has been bleeding a little bit (but not as bad as it has in the past). I guess that is normal too, and should (hopefully) stop soon.  She still seems uncomfortable at times, but overall, she is pretty happy.  

Because of the bleomycin, Nora couldn't have any adhesives on her skin for 72 hours.  Her IV was held in by gauze wrapped around her arm, so it wasn't a huge surprise when I discovered she had pulled it out during the night. When we got to the recovery area after the surgery, the nurse who was holding her told me that Nora was a very feisty girl and had been trying to crawl out of the bed:)

We are *hopefully* coming home today. Our flight has been cancelled and rescheduled twice because of the weather here. We currently have a later flight into Chicago-please pray that we can get home tonight! Besides the fact that we just want to be home, the Ronald McDonald house doesn't have a room for us tonight, so we'd need to find another place for the night, which would kind of be a pain.  Please pray that everything will work out and that Nora will do well on the flight home.  I'm going to finish packing up the room-thank you for praying!

1/14/15

I've been meaning to write an update for a while, but whenever I have a free moment, I just want to sit and not use (what's left of;) my brain.  I'm trying to remember what all has happened since I last updated... The first thing that comes to mind is sickness. Whatever Nora had after we got back from NY hung on for forever.  She would start to get better and then get worse.  She was pretty sick on Thanksgiving with a high fever and throwing up, and you could tell she just felt miserable.  We took her in again and they still couldn't find anything, so we just had to wait it out.  As she was starting to get better, the other girls took turns being sick.  I was not surprised-the day before Christmas break started, I went to eat lunch with Lina at her school, and a girl at the table next to us threw up. Then Nora got sick again.  She didn't seem to feel too bad during the day, she just needed extra suctioning.  During the night, however, she would wake up crying and just want to be held, and needed tons of suctioning.  I hit a new record low for sleep!  There are times when I say that I didn't get any sleep, but really, I probably got a couple hours.  During this last cycle of sickness, there were way too many nights of literally no sleep.  Once the girls were better, I got sick. Shocker;) Thankfully, I didn't get sick until Christmas, so Evan was home to take care of the girls (and me:)  It was a pretty rough month, but I'm so thankful that we were all together.  (Last year, Nora was still in the NICU for Christmas) At the moment, we are all healthy!  

Nora ended up having the surgical drain in for a little over 5 weeks.  The stitch that was helping to secure it got pulled out about 4 weeks in.  It happened while she was sleeping-she woke up one morning with dried blood all over her face.  It kind of makes me laugh, thinking about how something like waking up to my sweet baby covered in blood doesn't make me blink.  It made me nervous not having the stitch to help keep the drain in, but we managed to keep it in!  The bulb that held the drainage smelled awful for the last two weeks.  I would have gone to get a new one, but I kept thinking it was going to be taken out soon.  After getting the OK to have the drain removed, I started calling Children's to make an appointment to have it pulled.  I was exhausted and really did not want to make another trip to the hospital that week, so I called NY back and asked if I could just take it out myself.  They said if I was comfortable with it, they could talk me through it.  Basically, the instructions were to pull!  It was pretty gross-It took a pretty good tug to get it out. Yuck.  But it is SO nice to have it out!  One less thing to deal with.  

I'm sure you were dying to see a picture of this lovely contraption;) The part that was inside was about 6" long? 

As for the next step, we leave January 20th for her next procedure.  That's next week!!  The actual procedure will be Wednesday, the 21st.  This time, they will be doing sclerotherapy (Injecting the cysts with bleomycin) in her airway.  This trip will be much shorter.  As long as everything goes well, we will be back the 24th.  My sister, Angie, will be coming with to help.  It will be interesting to see how the flight goes this time-Nora is a lot more mobile, and does not like to be contained!

Thank you so much to all of you that have been faithfully praying for Nora.  We are so grateful. Please be praying that she (and everyone else!) stays healthy for this upcoming trip, that things would go smoothly and that she would respond well to the treatment.  Please also pray for wisdom for the doctors as they evaluate her airway and decide what/how much to treat.  I am a little nervous, because this is the procedure that our ENT here isn't totally on board with.  But, we are confident that God has led us to this Dr in NY, and we feel very comfortable with his recommendations.  Above all, we are trusting that God has little Nora in His hands.  I love Psalm 139, and verse 16 was a good reminder today, "All the days ordained for (Nora) were written in your book before one of them came to be" We don't know what will happen as we continue on this journey, but God does, and that is such a comfort.  God is in control and knows all our needs, so I won't worry about tomorrow, tomorrow has enough worries of it's own! (Matthew 6:25-34) 

I will try to be better about updating while we are in NY.  I need to end this so I can (hopefully;) accomplish something today!  I'll end with a few pictures...

A few days before Christmas, my mom came over with a huge bag of wrapped gifts and another bag with matching pjs for the girls.  She said she wasn't allowed to tell me who they were from, just that it was a group from church.  Thank you to all you thoughtful, generous secret santas!  The girls were SO excited. 

Breakfast with Santa at my grandpa's nursing home 

 Nora loves cheering on the Packers!  She is starting to stand more by herself-she will be walking any day now

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!