Two!

Nora turned TWO yesterday!

We cannot praise God enough for all that He has been doing in Nora's life.  God is so good!  Nora is doing so well. She is eating more and talking more every day.  She has endless energy, and loves to dress up in frilly dress-up dresses (with as many accessories as she can find) and dance and sing.  She would stay outside and swing all day if she could.  She is a very good mommy to her dolls and stuffed animals. She pushes them around in the stroller saying, "Beeeebee, beeeebee, beeeebee!" She loves to color, and likes to try to trace other people's hands, if you don't mind a few accidental stabs from the pencil:) If she sees someone wearing a hat, she must go find one for herself. One of her newest tricks is putting her HME on (the little white thing at the end of the trach that helps with humidification) It is so cute to watch her little hands work. I just love that child. 

One can never have too many accessories!

In October, Nora had bleomycin injections in the floor of her mouth and in an area near her lungs. We were able to have this procedure done here at Children's in Milwaukee-it was really nice to not have to travel!  Everything went smoothly, and she will go back to be checked in a couple weeks to see if they were effective.  She had her hearing re-checked a few weeks ago, which still showed a 30% loss.  It's better than it was, but they still want her to wear the hearing aid to help with her language development.  She also had her eyes re-checked, and the Dr said there isn't anything too concerning for now.  Her eyes wander occasionally, but it's not bad enough to do anything right now.  So that's nice that we don't have to go back to patching her eyes.  Nora is not a huge fan of that:)  Her ENT was very pleased with how she is doing when we saw her last week, and she also got a big thumbs up from pulmonary.  I can't remember what other appointments she's had recently, but the main point is that all the doctors are very happy with how she is doing! And we are too:) God is so good!

What a difference a year has made!  Although she is still as bald as ever:)

Nora goes to speech therapy once a week and her therapist has also been happy with her progress.  Nora loves speech therapy, because she gets to play with all kinds of new toys:)  She has been wearing the Passy Muir speaking valve for a little bit each day.  The valve allows air to go in through the trach, but then redirects it through the vocal cords and makes it easier to make sounds.  She will gradually increase the amount of time she wears it.  It's so funny to watch her when I first put it on-she gets this funny little smile and tries to blow it off (stinker!) and then laughs and starts jabbering.  She makes me smile so much:)  Once she is able to tolerate the speaking valve for longer periods of time, we can start talking about capping the trach.  Capping is basically putting a cap over the opening of the trach, which would allow her to breath in and out through her mouth/nose. Capping the trach is a step towards getting it out.  I couldn't believe I was even having that conversation with the doctor! Before Nora was born, we were told that if she survived delivery, she would most likely have a trach for life.  God is so good, I could cry.  

Aside from all her challenges, Nora is a very typical two year old, complete with the "terrible twos" temper tantrums (This particular one was on her birthday, because I made her put on clothes:)  

Nora's next surgery isn't until the beginning of January.  This is the longest break she's had, because I didn't want to schedule anything close to the holidays.  It's been really nice to not have to think about that for now!  It's been a really nice break.  She has been really healthy lately.  I haven't kept track of how long, but I know it's the longest she's gone without getting something. We are praying that this good health streak will continue through cold and flu season! 

Another one of Nora's favorite pastimes is sitting on the potty chair.  I am not even thinking about potty training at the moment (my least favorite part of parenting!) But I do let her sit on the potty when she asks, and she has gone few times! 

Looking back over the past two years, we have so, so much to be thankful for.  God is so good.  He has done amazing things in Nora's life, and has taken such great care of our family.  Thank you to all of you that have been that hands and feet of Christ to us these past two years.   We are so grateful for all of you faithful prayer warriors and supporters-we would not have made it this far without you! There are no words to fully express our gratitude and appreciation.  We are so blessed.  God has answered (and is continuing to answer) the many prayers on Nora's behalf.  I am constantly amazed at God's power and might as I watch my silly little girl do all the things we thought she may never do.  God is so good!   And we are excited to see what He has next!

NY surgery #6 update

We are home!  It's crazy that we were there and back already. 
Things started out a little hectic.  Nora had been sick the week before we left, so I took her in to get a culture taken from her trach. I wanted to make sure it was nothing serious/something that should be treated.  If we hadn't been leaving the next week, I wouldn't have done anything about it, but I didn't want to assume that it was something that would go away on its own, only to later find out that if we would have started an antibiotic, she would have been fine for the surgery.  Anyway, I took her in, but it takes a couple days to get any results, and in the meantime, she started feeling better.  Nora had her pre-op appointment a couple days later, so I told her pediatrician about her recent sickness. I still hadn't gotten the results back, but even if something showed up, I wasn't going to treat her, because she was doing fine symptomatically.  Whenever we do a trach culture, something always grows.  I only wanted to know if it was something serious.  Anyway, her pediatrician agreed and thought she looked fine for surgery.  She was still needing more suctioning than normal, but everything else looked good.  

Tuesday morning we needed to leave for the airport at 6:15am.  I got a call at 5am from the hospital letting me know that something had shown up in the culture and they wanted to let me know so I could start her on an antibiotic before we left for NY.  There was no way to get an antibiotic before we left, and I had already decided that I wasn't going to treat anything, but that call made me second guess myself and gave me a small ulcer. It was too early to call the Dr in NY, but I didn't want to fly out there only to be sent home because she wasn't healthy enough! Oh goodness. I prayed quick and didn't feel like we were supposed to stay, so we left for the airport. We hit traffic and I could feel my ulcer growing.  I'm sure if my mother is reading this, she would interject with "I would have left earlier if it were up to me" :) I don't like to leave too early because then I am chasing a very active little girl around a dirty airport! Anyway, We made it with 45 minutes left.  My ulcer continued to grow when our bags were "late checked", but as we got in our seats, I saw them throw our bags onto the conveyor belt. *Sigh* I don't know why I got so worked up-God always takes such good care of us, down to the smallest detail:)  

We had an appointment with the Dr Tuesday afternoon and he said he had no concerns about Nora's recent sickness and was comfortable proceeding with the procedure the next day without antibiotics.  Phew!

A little frozen hot chocolate to celebrate:) Thank you for all your help, Lydia!

On Wednesday morning, everything went as scheduled.  It was a short procedure-I think a little under an hour and a half? Just enough time for some breakfast and two games of cribbage (I won't say who won;) 

They injected several areas in her airway and the base of her tongue with bleomycin.  The doctor was happy with how her airway is looking, and thinks Nora could be ready for decannulation (getting her trach removed) by next summer!! There is no guarantee, and there are other factors that need to be discussed, but oh my goodness-music to my ears. Cue the Hallelujah Chorus! I immediately envisioned dropping all three of my children off and just going.  I don't know where. Just somewhere. Somewhere without any of our sweet, wonderful children:)  Right now, Nora has to be watched by a trained care giver, so that makes it tricky for Evan and I to get away.  Even if we could go away, I don't think I'd really be able to relax. Anyway, it was exciting to hear.  We talked about the next steps, which will be working on her tongue (which can be done at Children's in Milwaukee!) and then another face surgery in January.  

Nora did great after the procedure.  I wish I could have gotten a video of her waking up.  As soon as her eyes popped open, she flew up to a sitting position, took a look around and then held out her arm, tapped her IV with her sweet little finger and said "owie".  One of the parts that they injected affected the vocal chords, so I was VERY happy to hear her say something right away.  She held her arm out and said "owie" to anyone that happened to look her way:)  (I know I said it on FB already, but in case you didn't see it, Nora's new word is "owie" and everything is "owie".  A wall with chipped paint is "owie":) 

Nora showing off her "owie"

I thought that we were going to have to spend a night in the hospital, but we ended up being released after 2 hours!  It was SO nice to go home/back to the Ronald McDonald house.  The hospital is nice, but not being in the hospital is much nicer:)  

Nora had a slight fever when we left the hospital, which they said was normal.  You could tell she didn't feel great, but after a little tylenol she was comfortable.  They had prescribed a stronger pain med, but I don't like to give it unless she really needs it, and she did fine without it.  Her tongue/mouth started bleeding on Thursday, which happened the last time she had these injections.  She looks like a little vampire with blood dripping down her face.  Hopefully that won't last much longer. 

If I had ever woken up to this with the other girls, I would have freaked out! This was nothing compared to some nights.  Such a sweet, tough little girl.

We made it home without any issues on Friday-our plane was even 45 minutes early! 

Thank you so much to all of you that have been praying.  We praise God for how He is working in Nora's little body! Although she is not so little any more.  She is going to be two in two months!  Two years ago at this time, we didn't know if she would live past the delivery. God is so good!  I am amazed when I think of all that has happened.  I wish I had started writing updates from the beginning, so I could look back at things (although, judging from my track record, it probably wouldn't have been very consistent;) Anyway, we can not thank you all enough for all the prayer and encouragement and the many, many ways you have come alongside us on this journey.  We are so grateful. For those asking how to pray specifically-please pray that these injections will be effective and that there would be no harmful side effects.  Please also pray for wisdom for the doctors as we decide how to proceed with certain procedures and medications.  You could also pray for her speech, hearing, oral eating and eyesight-all things that are affected by her lymphatic malformation. Nora is such a fortunate little girl to be loved and prayed for by so many!  You are all so wonderful.  Thank you for praying! 

July trip and next trip

Nora loves to play with her medical supplies.  Who needs toys??

I have been meaning to write since we got back from Nora's last surgery (at the end of July!) It was all good things, and was just going to take a second to write, so I kept thinking "I'll do that real quick after I do___" Things haven't been that busy, and I think that is my problem-I don't have a schedule anymore. Not that I really had much of a schedule before, but when things are so busy, I feel like I get more done because I know that if I don't do something immediately, it's not going to get done.  Not that I was super productive before either...oh goodness. Anyway, I am hiding from the older girls while Nora naps, intent on writing this from start to finish in one sitting.  

The July trip went great. The doctor was very happy with how things went.  I wrote about it in my last update (I think?)  If you ever have any questions, I am more than happy to answer-I know I leave a lot out.  One of these days I want to start back at the beginning, because I know it was helpful for me to read about other people's experience when we were first learning about Nora's diagnosis.  It's on my "eventually" list:) Anyway-Nora did really well coming home and didn't get sick like she usually does when she comes off steroids.  She did have fevers a few weekends in a row, but she was fine.  

Some pics I meant to post from the July trip...

Reading with Aunt Tonya the night before the surgery

 We ended up waiting at least 3 hours longer than expected for her surgery-Nora kept herself occupied by watching Pooh Bear, play peek-a-boo, and charming the nurses:)

 She had to wear this compression wrap for a while after the surgery-she reminded me of that one little rascal

 frozen hot chocolate with Aunt Jenna

 Nora had her stitches removed under anesthesia this time.  They gave her this little teddy bear while we were waiting-she loved it!  I should have taken a video, she was being so cute with it

The surgical drain was ready to come out after 4 weeks, but I couldn't get an appointment to remove it until the end of the following week.  I have taken it out myself in the past, but this time there was a special "ghost stitch" to close up the site where the drain goes in. I wasn't sure how to work that, so they wanted me to take her in to have it pulled.  I contemplated pulling it myself anyway, because I was so done with it and was afraid it would get infected. She didn't have a stitch to close the hole the other times, but I decided to follow orders.  But then the drain site got really red and started oozing green grossness and her incision site was looking pretty rough as well.  Thankfully, Nora had a speech appointment the day it started, and I saw one of her ENTs down the hall and asked if he could come take it out quick.  I love our doctors-I am so thankful for them! He came right into our room, pulled it quick and sent in a script for an antibiotic (because it was definitely getting infected).  And he ended up not even using the ghost stitch, so I should have just done it myself days before! Oh well-next time I will know:) 

Once the drain was out and she started the antibiotic, she was all good.  Just in time for us to take a little road trip to MO! My friend Cheryl and I drove our kiddos down (5 total) to visit some friends in Springfield and Kansas City for a few days each.  There were an additional 5 kids at each house, so 10 kids total at each!  10 times the fun:) The kids all played really well together and it was so nice to be away from everything.  I was a little nervous being away from our doctors, especially after the recent infection, but overall Nora did great.  She did have one night where she threw up and had a fever, but it didn't last long.  Nora did really well on the drive, and had fun playing with all the kids.  She was really excited that one of the houses had a cat (She currently loves cats I guess). The cat had to stay outside because I am allergic, so Nora would look for it out the window and meow:) 

Nora relaxing during our 10 hour ride. I thought I had a picture of the whole crew, but I guess not

Over all, Nora is doing so well!  She is such a light and joy in our lives.  A constant reminder of God's power and goodness.  She is doing really well with oral eating-she can eat just about anything!  I love seeing her stuff her little face:) She still is primarily G-tube fed, but she is gradually increasing "real food" intake.  She is doing pretty well with her speech. She says a lot of words in the back of her throat-for "blanky", she says "inky" and for please she says "ease".  She jabbers a lot, which is so cute!  I love watching her "talk" to me-she is so expressive and makes all kinds of gestures and then looks at me like, "I just told you something, aren't you going to answer?" Oh I love that girl.  She is really going to miss her big sisters now that they'll BOTH be in school this year.  I love watching them all together.  I have the sweetest girls ever:) If the older girls are sad, Nora gets a very concerned look on her face and will go over to them and hug them and pat them gently.  Lina and Belle are very sweet about letting Nora play with them and love to teach her new things.  I'm going to miss my little helpers while they're at school!

Next week, we will be making another trip to NY.  This trip, Nora will be having an airway procedure.  They will either inject bleomycin or do laser treatments.  They decide once they are inside I guess.  Please continue to pray for Nora!!  I was feeling great about the procedure-she's had it before and has done great. And then someone posted a bad experience their child recently had after bleomycin, and I felt the knots in my shoulders start trying to strangle me.  I *know* that I don't need to worry, because God will be in control no matter what happens, I just need to constantly remember to cast all my cares and worries on Him, and remind myself of all that He has already done.  God has never disappointed us.  He has always given us all that we need, and so much more!  Things might not have always gone the way we would have planned, but we trust that God has a greater plan than we could ever come up with.  We would really appreciate prayer that we will continue to feel peace, and also that Nora will be spared from negative effects and that things will continue to go well. Thank you so much for praying-we are so incredibly grateful!  I doubt I will update again before we leave next Tuesday (the procedure will be Wednesday, the 9th) My sister Lydia is coming with me this time (If you don't know and are wondering...I have 6 sisters (and one brother:) very handy for travel companions during these trips! I love my family:) We will only be gone 4 days this time, which will be SO nice! Re-entry is much easier after a shorter trip.  Anyway, I will try to update soon after the procedure!

We made it to NY on Tuesday, and Nora had her surgery Wednesday. It was only two hours this time, which was nice.  I thought they were going to work on the area under Nora's right eye, but when we talked with the Dr before surgery he said they were going to work on the chin area.  It really doesn't make a difference, it'll all get done eventually:)  
The Dr was very happy with how the surgery went-thank you for praying! Every time I walk her back to the operating room and leave her on the table, it makes it so much easier knowing that she is in God's hands, and that she has many, many people praying for her. 
It took her a while to get off oxygen after the surgery.  She most likely just had a bunch of gunk in her lungs that she needed to cough up/get suctioned out. They did a chest X-ray at midnight the first night we were there, and she wasn't too happy about it. She was really fighting us, which wasn't great for the x-ray tech, but all the screaming and squirming helped her cough up a bunch of secretions, and she started breathing better after that:) It was a long, sleepless night, but the next morning she was able to get off the oxygen. They wanted us to stay another night for observation to be safe, so we got to hang out at the hospital for another day.  It wasn't the most fun for the adults (my sister Tonya came with us for the beginning of the trip) but Nora had fun walking up and down the halls, schmoozing the doctors and nurses:) We were all very ready to leave the next morning, but ended up not being discharged til 3:30 because the doctor hadn't sent the paperwork and was in surgery:-/ But we eventually made it out! We picked up Nora's prescriptions before dropping Tonya off at the airport, and then headed back to the RMH in Long Island. (thank you for your help, Tonya!)

Nora fell asleep pretty early Friday night, and then slept in til 10 on Saturday-that was SO wonderful.  And so good for her (and me;-)  You just don't get good rest in a hospital.

My sister Jenna flew in Sunday morning-it is so nice having another adult! There are a lot of people here at the RMH, but everyone is busy with their own appointments and things.  And when you're chasing a busy little girl around, it's hard to have a real conversation with someone else that is also trying to keep tabs on their own little munchkin:)

Sunday morning Nora woke up with a little red spot on her cheek, and this morning (Monday) she woke up with another red patch near her right ear.  She had a follow up appointment this morning, so I was able to ask the Dr about it.  He thinks it is a reaction to the antibiotic she is on, so she is stopping the antibiotic and changing one of her other meds.  So hopefully that will take care of it.  We would really appreciate continued prayer for healing and protection for infection!  You could also pray that her heart rate would stay above 60.  Her heart rate has been lower than usual at night, which is normal for her when she is on steroids.  When her HR goes below 60, her monitor screams, and I want to throw it out the window;-) Last night it dipped more than usual-I am hoping that will not repeat tonight! She seems to be feeling great though.  You would never know she just had surgery.  She is running around, making lots of new friends and having a blast with all the toys here. 

She will have her stitches removed on Friday morning (under anesthesia this time) and then (as long as everything goes well) we fly home Friday night.  Thank you so much for praying-we are so grateful for how God has been working in this little sweet cheeks! 

It won't let me upload pics at the moment, and I don't want to stay out here any longer (I don't get wifi in our room, so I am sitting out in the hall) I'll try again later;-)

7-10-15

Nora has been doing really well! I usually make excuses about why I haven't updated, but really-this time the reason is because there wasn't much to say! No news is good news;-) Nora has completely recovered from the infection over Memorial Day-thank you for praying!  Once she was able to start the Sirolimus again, the swelling on the right side of her face went down, and the new incision was able to heal.  

It has been a really nice summer so far. Last summer, Nora still needed to be hooked up to machines for most of the day, so we couldn't go out much/for very long. Now she is wireless and goes everywhere!  She loves being out and about and in the middle of everything.  

Before I go crazy with pictures-we are heading back to NY next week.  Nora has another de-bulking surgery scheduled for the Wednesday, the 15th.  This time they will be working on the front, right side of her face under her eye. We would really appreciate prayers for protection for Nora and her sweet, sweet smile during the surgery. Oh that smile melts my heart. Please pray for wisdom for the doctors and all involved in her care.  Last time she lost a lot of blood during the surgery, and there were a couple issues the days following-please pray that there would be no complications and for a smooth recovery! And also that she would stay healthy in the days leading up to our departure.  I don't like being a germ freak, but I don't want a little cold to throw us off schedule! (For those of you that may have heard we were having trouble finding a place to stay (the Ronald McDonald House in Manhattan is full) we are going to be staying at the Long Island RMH and commute.  You could pray that they will have room, bc there is a small chance that we could show up and not have a room!) 

We are so thankful for how well Nora has been doing, and how smoothly things have gone so far.  We know it is only because of God and all the amazing people that are so faithful in praying for her.  I was recently talking to a friend that had just received good biopsy results-she was saying that she knows the good news was only because of God and prayer. Her doctors had been pretty concerned about it, but she had many, many people praying for her.  It was such a good reminder to give all glory to God.  Sometimes when we get good news or things get better, it's easy to think "phew-that was close!" and forget about all the prayer and the powerful God that protected us from who knows what.  (That makes me think of the lyrics from that ancient song, Angels,  "Near misses all around me, accidents unknown, Though I never see with human eyes the hands that lead me home" good old Amy Grant;-) Anyway, with Nora, there are so many times (every day really!) when things could have been so much worse, but because of her faithful prayer warriors, her little light has continued to shine bright and happy, and we are so thankful for how God has been answering the prayer on her behalf.  This little girl certainly keeps her angels on their toes! She climbed/fell out of her crib the other day when I had my back turned for two seconds. I turned around just in time to see her diving over the side of the crib. But she was fine! She is such a monkey/daredevil. The other girls were/still are as well, but it makes me more nervous with Nora because of her trach.  But, so far, we have not had a real trach emergency.  (In the beginning, there were things that felt like an emergency/were scary, but now we know what's normal/what to do;) With each of her surgeries/procedures, there are so many things that could happen, I don't even want to think about it. But God has protected her, and she has exceeded everyone's expectations from day one! We want to thank and praise God for the amazing work He is doing, and thank you to all of you that have been continually praying for sweet little Nora.  We are so grateful! In addition to all the prayer support, we are incredibly thankful and grateful for all of you that have been so generous financially, making these surgeries/trips to NY possible.  We will never be able to thank you enough. We thank and praise God for you, and pray His blessings on you in return, and that we will be a blessing to others as well. 

Now for some pictures of this adorable little miracle...warning, there are a lot:)

A few weeks ago we were at a get together and Nora was being extra cute-I couldn't pick just one pose;-)  She was pretty excited to see Aunt Jenna (who had been in Spain the last year)

 Aunt Lydia got a good smile too:)

 Nora loved the little chicks at breakfast on the farm

 When Nora first figured out how to climb up the slide, she would sit at the top for a while, as if trying to muster the courage to descend;-)

One can never be too safe when walking around outside

 Oh I just love this face! And those sweet little hands!! This was the first time she was really interested in eating ice cream.  She usually doesn't like things that are cold or too sweet (she didn't get that from me!)

 She kept trying to share with her BFF Quincy

 Nora LOVES the guitar.  As soon as Evan gets home, she says her little version of "guitar" and makes a little guitar playing motion. 

Nora really likes water, which is kind of unfortunate, because it is very dangerous for her to be in water with the trach.  I brought the little pool for her when we were at our friend's pool, but she lost interest quick and wanted to be with the big kids.  I let her sit on the steps for a bit, but she was trying to dive in, head first, so that ended quickly.  

If you made it this far-thank you again for all the love and support! 

XO

Nora had an ENT appointment on Friday, and as soon as we got into the exam room, she started pointing to the door, wanting to leave. This was the first time she had done that. I wondered when she would start dreading the Dr:-/ She was happy to stay once I let her play in the water-she loves to clap her hands under a running faucet:) 
The drain had not been draining as much the past few days, so we decided to take it out. It is sooooooo nice to have that out. Nora also had most of the stitches removed. The Dr left 5 stitches in because the incision still isn't looking great. The right side of her face is still warm and red and firm, so she did an ultrasound to check for pockets of saliva. It showed two, but instead of draining them right away, we are going to wait to see if they'll reabsorb by themselves. Nora was pretty upset after the drain and stitch removal, so we thought we'd give her a break. I let her play in the water again afterward, which put a smile back on her face:) 
Nora seems to be feeling fine. She has endless energy, which I think she siphons from me;-) She is still not eating much/anything by mouth, and we have had to really slow down the rate of her tube feedings so she doesn't throw up after each one. Lina and Belle never threw up when they were babies, so I guess Nora is just making up for that! I think she's gone a little overboard. At least it's not projectile like when she was real little. Although that was kind of nice, because sometimes it wouldn't get on her clothes, so at least I wouldn't have to clean her AND the couch/carpet/everything within four feet. But enough about puke.

This crazy little bag lady loves to wear hats and take off her pants

We will go in again next week to remove the rest of the stitches and hopefully she won't need anything drained. Please pray that her incision would heal and that whatever is causing the issues on her face would be resolved! And as always, please pray that she would stay healthy:)
For those of you that may not have seen/heard about it on Facebook, my sweet friend Abby is doing a T-shirt fundraiser for Nora. If you're interested in purchasing a shirt to support Nora, check out this link
https://www.booster.com/nora-fundraiser
(Many of you have asked if it is ok to share the link-you are always welcome to share anything I post. We appreciate you spreading awareness and recruiting more prayer warriors:)
And as I already said on FB-Nora is so lucky to be loved by so many.  We are so grateful to all of you that have helped lighten the load of this journey and have made Nora's surgeries in NYC possible! We are overwhelmed and humbled by your generosity. We thank God for His provision and pray His blessings on you as well!
Hope you all have a wonderful weekend!!

surgery updates (warning: it's a long one)

Nora likes to put her blankie over her face and then gently tap it-that makes everything OK;)

I've said it before, and I just feel the need to mention it again...if you read something and you think to yourself, "that is not right" it probably isn't.  So please feel free to correct me!  Especially other LM moms-you probably know what I am trying to say and can explain it much better.  I only pretend to know what I'm talking about;-)

Also, this is a rambling warning-I don't have time to go back over it all, and if I don't post it now, it'll be another month before I do;-)

Also, I made a Facebook page for Nora to hopefully make it a little easier for people I am not 'friends' with on FB to follow Nora's progress ( https://www.facebook.com/noraslittlelight ) So I think you'll get a notification when there's an update?  I'll keep the blog because there are some family and friends that aren't on FB.

For those of you I'm friends with on facebook, some of this is old news...

We made it to NY without any issues. Evan came with this time since it was a bigger surgery.  Nora loved having her daddy all to herself:) 

Nora's surgery took a little over 6 hours, and the doctor was very happy with how it went! I wish I could tape everything the Dr says, because I always think I'm going to remember everything, and be able to regurgitate it in a way that makes sense, but that is usually not the case. In a nut shell, it was a very difficult surgery with risk of nerve damage, but it was very evident that God was guiding the Drs hands and protecting sweet Nora.  The Dr said that none of the nerves had been touched, and when he checked them on the monitoring machine, it showed that they were at full strength. That's what I like to hear!  She does have one area of her mouth on the right side that doesn't move like it did before the first surgery.  I haven't asked about it yet, partly because I am a little afraid of the answer.  The Dr had said that it can take over a year to regain complete function, so I am praying that is the case.  

But back to the recent surgery...they removed part of the parotid gland in her right cheek, along with over a centimeter thick of diseased tissue (the lymphatic malformation is all intertwined with the tissue).  The tissue that is left still contains disease, but if he removed it all, the skin would just rest on bone.  So she will have some sclerotherapy to hopefully scar the cysts and keep them from being able to inflate/flare up.  The Dr also checked her airway while she was under and was very happy with how that looks.  He thinks she only needs a few more airway surgeries before getting the trach out!! It was so great hearing him talk after the surgery, I love good news and when doctors are happy:)  It is so evident that God is working in Nora's little body and using this surgeon to heal her.  We are so grateful that we are able to travel to NY and work with this surgeon and his team.  

The part that looks like a 'U' on her cheek is the drain inside.  It comes out in back of her ear. It's kind of hard to see, but that long tube drains into a bulb that is emptied several times a day

It took Nora longer than usual to wake up after surgery.  She had lost a good amount of blood, so they were debating giving her a blood transfusion. Her numbers were right on the edge-they said if she didn't get one, her numbers would improve, but if she did get one, they'd improve faster. They went back and forth for a day and eventually decided against it. Nora was still needing oxygen the day after the surgery (she is not usually on it at all) So they did a chest x-ray that showed what looked like a small air leak, which could have happened during surgery.  They said that it wasn't a huge deal right then, but if it got worse, she would need to be transferred to a different hospital.  That made me nervous. If you haven't been to NYC, picture a million one way streets with cars parked on both sides, and bumper to bumper traffic.  When we were walking to the hospital the day before, we saw an ambulance stuck behind a garbage truck that was stuck behind a car with it's trunk open and no driver in sight.  I hope the person in the ambulance wasn't seriously injured! I decided that if Nora needed to be transferred, I'd just throw her in the stroller and take her myself;) But thanks to the prayers of many, Nora improved and her x-ray the next morning looked great:)  

Nora was definitely grumpier after this surgery.  The only time she was happy was when she would FaceTime with her big sisters-she'd just keep hugging and kissing the phone-it was adorable.  I love my little sweeties:) Nora slept a lot and just wanted to be held when she was awake.  It was a good week before she was back to her smiley self.  I can't imagine what that feels like-having your face sliced open and folded over for 6+ hours while they scraped away at it, and then walking around with a surgical drain hanging out the side of your neck! Poor sweet baby-she's been through more than most people will go through in a lifetime.  But I know God will use it all for good. 

Evan left the Sunday after the surgery, and my mom came the Tuesday after.  Thursday we went to have the stitches removed.  I was going to count them but forgot. I'd guess 60-70? It was definitely less than the first surgery.  They used the same incision as last time-it starts at her right ear but this time only went to the middle of the underside of her chin.  Poor Nora-the stitch removal was pretty traumatic.  Last time she was much smaller and easier to hold down.  We had all worked up a good sweat by the time it was done!  About halfway through, Nora wriggled her arm loose and brought her blankie up to her face like she does, and then was calm.  We let her keep it like that, and she let us take out the rest with no problem. I felt so bad-if I would have known that would have helped, I would have let her from the start!  I will remember that for next time.  

I had to put this picture up because it just makes me laugh-Nora was not impressed with Miss USA (She was very sweet, and Nora warmed up to her after some coloring, and playing with her crown:) The RMH is so great about having activities for the families

Our flight home was uneventful-it was so nice to get home! We were gone for 10 days this time.  It's a little harder to get back into life with the longer trips, but I am so thankful that we get to come home!  Many families that we meet at the Ronald McDonald House have to stay there for months at a time.  Staying at the RMH definitely helps keep things in perspective. 

Nora was doing really well after we got home. Then I noticed that her cheek was warm and red where the drain was on the inside.  I called about it, and they said as long as she didn't have a fever, it was fine.  This past Saturday, she woke up from her nap feeling a little warm.  I took her temp and my heart sank as I saw the numbers climbing.  It was only 101.1-normally, I wouldn't take her in for that, but because of everything else, I told Evan I was going to take her to the ER (because of course it started on a weekend!:)  When he was kissing her goodbye, he noticed that there was swelling on her neck around the entrance of the drain.  The redness and swelling started spreading before our eyes, so I grabbed her stuff and headed out.  By the time we got to the hospital, her temp was over 103 and the right side of her face and underneath her chin were bright red and swollen at least an inch out.  

They admitted her and started her on two strong IV antibiotics.  It took a while to control her fever, because she kept throwing up, but eventually, it came down.  The drain was infected and she also had tracheitis (an infection in her trach). I feel like there was something else...maybe it was just that they were worried about her heart rate being so high and thought she may develop a blood infection? (she didn't:)  They ended up having to re-open her incision about three inches and replace the surgical drain inside her cheek.  While they were in there, they cleaned everything and drained pockets of saliva that were causing some of the swelling.  They also Botoxed the spit gland...this is where I really just don't know...something about the partial removal of the parotid gland from the initial surgery causing saliva to leak? Maybe? It all makes sense when they explain it, and I think I understand, but when I try to explain it, I sound like Mr. Bean.  Any way-the botox will help dry up/control the secretions and hopefully prevent it from causing future issues.  I was nervous about Nora being opened up again, because of possible nerve damaged.  But Dr Waner (in NYC) gave me his cell number so Nora's ENT here could call him about where he left the nerves. Together, they decided on a game plan.  I'm so thankful that Nora's ENT was the ENT on call over the weekend-God is so good!  She knows Nora so well and I trust her completely. She has done such a great job with Nora.  We are so grateful to have such amazing medical care.  

Nora loves her daddy (and her crown;)

After 4 days, they were happy with how Nora was progressing and were comfortable sending her home.  When I picked up the bag of meds from the pharmacy, I couldn't believe how heavy it was.  I weighed it when we got home-5 pounds! That's 25% of her weight!! Two of the meds are every 6 hours and one is every 8 hours. And I'm supposed to strip the drain every 2 hours (during the night I only do it the two times I'm up to give the med).  The swelling seems to be improving a little each day.  Normally they put her on steroids for swelling, which takes care of it pretty fast.  But Nora had just ended a two week course of steroids a few days before this all started (she is always on them after surgery) and since she's been on them so much, they want to try to avoid it, if possible.  The Dr said that she had a hard time stitching Nora up because the flesh was in such bad shape-which I guess is caused by the steroids?  And from being opened up so much?  Whatever the case, we are praying the meds shes taking will do the trick.  We saw the Dr yesterday and she was happy with how Nora is looking, so we will keep doing what we are doing.  

A huge Thank You to all of you that have been praying for Nora.   We are so encouraged to know so many are lifting her up, all over the world!  It was kind of scary for a bit, but we felt a peace knowing that God was taking care of everything. While Nora was in surgery, I read Psalm 139. Verses 13-16 were especially comforting to me, "You knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth.  Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be"  Nora is fearfully and wonderfully made, and because God has all her days planned out, there is nothing for me to worry about.   I may not understand the 'why' of everything, but I know it will be used for good.  Thank you for coming along side Nora and our family as we continue on this journey!  I don't know what we'd do without you!! Please pray for continued healing and protection from any more infection/issues, and also for wisdom for the doctors as they make decisions regarding her care. Her heart rate was a little higher last night which can sometimes mean trouble-please pray she stays healthy!!

Despite the recent excitement, Nora is doing great!  She was pretty miserable for a couple days, but she is back to running around and tackling us with slobber kisses:) She loves being outside now that the weather is nice.  When Lina and Belle are outside without her, she stands at the door looking out longingly. The girls will come to the window and make kissy faces and then run off, leaving Nora jabbering away at them. I love hearing her "talk".  She's added a few new words to her vocab and a lot of signs.  Oh, she is such a sweetie.  She is so funny.  She does this thing where she shrugs her shoulders up by her ears, looks at you with a big smile and squinty/mischievous eyes, then puts her fists up and squeezes her muscles while laughing-she thinks she is just hilarious, and so do her sisters.  She has them rolling on the floor laughing with her antics (although I have to say, they're pretty easily amused;-)  

If you've kept reading this far- I'm sorry for writing a short novel;-) But seriously, thank you for taking an interest in Nora's story and for your prayers.  I can't say it enough-we are so grateful for all of you. God bless!

How is it May already?

Every time I finish writing a post, I tell myself that I won't put off writing so long the next time. It's like when I tell myself that THIS handful of m&ms will be my last...good intentions, bad follow through;-)

Nora has been doing well.  Her heart rate issues have gone away-thank you for praying! They stopped soon after she finished her steroids, so we're pretty sure it was from that.  She did see the cardiologist, and he wasn't concerned since she wasn't having any other issues.  He did have her wear a Holter monitor for 24 hours, just to make sure everything was working the way it should, and everything looked fine.

While Nora was on the steroids  it made her extra hungry, which really helped with her oral feeding! She would eat a whole piece of string cheese or a whole container of yogurt in one sitting, whereas it would usually take her at least a day to finish just one of those things.  All the extra food helped her gain a little weight, which her GI doctors had been wanting to see. Unfortunately, she got sick shortly after she stopped the steroids, and when she is sick, she doesn't want to eat by mouth.  She is now healthy, but she still isn't wanting to eat much by mouth.  She seems to gag or throw up if she eats anything that doesn't dissolve on its own.  We are thinking there might be a little flare up of the lymphatic malformation near the esophagus that is causing her discomfort?  Who knows. She seems to be doing fine besides that.  

One thing we've been really excited about is Nora's speech.  We have been teaching her sign language, which she has been picking up on really well.  She loves to watch "Baby Signing Time" (I would highly recommend the series-it is a great way to learn!) She is able to do quite a few signs, which has been very helpful. Nora has also been making a lot of noise which is SO fun to hear.  There have been a few times that we thought she may have actually been saying words.  The past couple days, she for sure has been saying "up" along with signing it, which is so exciting to see/hear! She is a constant reminder of God's greatness.  I remember cleaning out the baby car seat before bringing Nora home from the NICU-there were tons of cheerios and cracker bits left over from Belle.  I was a little sad as I cleaned them up, thinking that I'd never have to do that for Nora, since she would most likely not be able to eat by mouth.  But now, when I take her out of her seat, there are all kind of snack remnants underneath her and it makes my heart happy every time:) For a long time, Nora made absolutely no sound.  When she would cry, you could see on her face that she was NOT happy, but she made no noise.  After a while, we started hearing little squeaks every once and a while.  Now, she is starting to speak! Maybe eventually the excitement will wear off, but I still just love every little noise she makes:)

Next week is Nora's next surgery already! We leave Tuesday, May 5th, and her surgery will be on Wednesday, the 6th.  She will be having another de-bulking surgery this time. They will be working on the right side by her ear and a little under her chin.  This will be a big surgery. Please please please pray for our sweet little girl.  There are nerves that control her sweet smile and other facial movements that could be damaged. Please pray for steady hands for the surgeon and everyone involved in her care, and protection for her sweet smile and other facial functions.  

I don't know why, but I am more emotional about the surgery this time.  Maybe because she's older? I just love her so much and wish I could spare her from any pain.  I don't like being so helpless.  I was looking back at pictures of her incision right after the first surgery, and it made me sad to think of my poor baby having to do it all over again. But I know it is so necessary, and I am so grateful that she has the opportunity to receive such great care.  And most importantly, I know that God has Nora in the palm of His hand, and whatever happens, it will be good. And this surgery will be so helpful for her. It should allow her a lot more movement (right now she can't really look down or to the right easily) and hopefully help her sight and hearing.  I don't know if I've ever mentioned it before, but because her right eye doesn't always open as wide as it should, her right eye isn't as strong as it should be and has trouble focusing.  It also wanders at times, so we are supposed to try to put a patch on the good eye for a couple hours a day.  Nora is not a big fan of the patch, so that doesn't happen as much as it should.  We are hoping that eye will be able to open wider after this.  She also has hearing loss in her right ear due to compression of the ear canal.  The pink head band that she always wears (or should be wearing;) is actually a bone-conducting hearing (the hearing aid is usually hidden behind a flower:)  We are hoping that this surgery will help to open up the ear canal, and eventually eliminate the need for the hearing aid.  

We are so thankful for all of you that have been following Nora's story-we are so encouraged by you.  When I start thinking about all the things that could go wrong, I have to stop myself from thinking about it and force myself to just pray.  It is so comforting to know that so many of you are praying with us as well! Please pray that Nora will stay healthy so that we can go to NY as scheduled.  And please also be praying in advance for protection during the surgery and Nora's sweet little face. Thank you!!

The Lord is righteous in all his ways and kind in all his works. The Lord is near to all who call on him, to all who call on him in truth. He fulfills the desire of those who fear him; he also hears their cry and saves them. Psalm 145: 17-19

Home again

Nora and Grandma at the NY Public Library

We had a nice, quick trip. We made it to NY on Tuesday with no problems (besides Nora wetting through her diaper on the way to the airport;-)  As always, Nora did great, and slept the whole flight. When we got to the Ronald McDonald house, we saw Mario and his parents (Mario is a 17 year old with Lymphatic malformation similar to Nora's) They were on their way back to Switzerland, but we were able to chat for a little bit.  It's nice to see familiar faces:) 

Nora waving to her adoring fans

Wednesday morning we walked to the hospital and got all checked in.  Nora charmed the nurses and everyone around with her waves and kisses and adorable smiles:)  I took her back to the operating room and held her until she was put under-I love that I am able to go back with her and comfort her until she is out. It was a quick procedure-I think she was only gone for maybe an hour and a half? The Dr said he was happy with how Nora's airway had responded to the last procedure.  He did some laser work in her airway this time (last time he did bleomycin injections). Nora was more groggy than usual coming out of anesthesia, which was kind of nice. She usually wants to climb all over and makes it a challenge to keep all the IVs, wires and tubes from being pulled out! We spent one night in the hospital for observation. The nurses there are great-Nora had them wrapped around her little finger:) 

Nora loved taking the nurses on walks

While we were in the hospital, we met another little boy, Ostin, who also has a lymphatic malformation.  Each trip we have met a new family with the same condition-it's so nice to meet people who are going through similar experiences. Ostin and his mom are from Honduras and spoke only Spanish.  We were able to communicate with them through Tom and Emily, their sponsor family. Tom is a pediatrician, and together with Emily, they help kids in Honduras receive medical care.  Emily has a blog about their work in Honduras (You can see some pics of Ostin there)  http://esperanzahftc.com/ 

Nora bounced back from the procedure quickly.  The doctor did have some concerns about her heart rate going too low overnight, but everything else looked good, so we were able to leave the hospital on Thursday.  Friday Nora had a quick check up, and we discussed the next surgery. We scheduled a de-bulking surgery for the right side of her face in early May. That will be a major surgery-you could start praying for that one now! We flew home on Saturday and got in 30 minutes early! Unfortunately, it was a full flight so we weren't able to bring Nora's car seat on board (we don't buy a ticket for her since she is under two, but all the other times, there has been enough room for it)  So Nora did not sleep during that flight, but she played nicely on the floor by our feet, and had a grand time playing with the seat back pockets and the barf bags;-) I'm so glad my mom was there to help-thank you for everything mom!! And thank you to all the wonderful people that took care of Lina and Belle while I was gone!

Nora's little play area on the flight home 

Nora's been doing ok since being home.  She is on a steroid (to help reduce swelling from the laser treatments) which makes her a little cranky and messes with her sleep schedule.  Her heart rate has continued to go too low during the night, which causes her monitor to scream at me all night long.  When it alarms, it startles her and her heart rate goes back up for a bit, but it has been hovering around 60 for a good portion of each night, which is not great.  We spent most of the day on Monday at Children's hospital trying to figure things out.  They had us go to the ER since Nora is not currently being followed by a cardiologist, and the tests done there came back fine. There have been times in the past that her heart rate has been lower while on steroids, but never this low.  She is on a higher dose than she has ever been on, so we are thinking maybe that is causing this new issue?  She started tapering off of the steroids today, and will be done in a week and a half. We have an appointment with cardiology next Friday, but I am trying to see if we can get in earlier. We would really appreciate prayer for this.  I'm not extremely worried, since is acting normal while she is awake, but I would like it to be resolved as quick as possible.  And I would like to sleep again! Until I do, I'm thankful for the truth of Isaiah 40:29-31

"He gives strength to the weary and increases the power of the weak.

Even youths grow tired and weary, and young men stumble and fall;

but those who hope in the Lord will renew their strength

They will soar on wings like eagles; 

they will run and not grow weary, 

they will walk and not be faint."

Thank you for all your love and prayers-we are so thankful for all of you!