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