Molly at the Moment

Well, as most of you know, Molly was scheduled for another laser surgery and an MRI this week.  On Friday morning they called and told us Dr. Buck-miller isn't available this week.  Rescheduling with her wasn't a problem, but unfortunately, getting a new MRI slot was tricky.  So we don't go back until December 16. 

These past few months have been a major stretch of faith for Nathan and I.  After her last surgery, Dr. Buck-miller's office called and told us that they are referring us to a neurosurgeon, because Molly's hemangioma seems to be particularly symptomatic despite the aggressive treatment plan.  "Why a neurosurgeon?" you may be asking yourself-- well to look at the lesions in her brain of course!  "What lesions?!" you may be asking yourself-- the ones they found when she was 3 weeks old and failed to mention to us... 

I guess you can imagine the terror that hits your heart when you hear that your child has something wrong with her brain.  Thankfully, it was fleeting terror.  We quickly started reminding us about all the truths that define Molly's life: God has already healed her;  He has begun a good work in her and will bring it to completion; He has a plan for her life, to prosper her and not to harm her; He works all things to the good of those who love him... I could go on and on. 

The neurosurgeon wants a new MRI, because a 3 weeks old brain is nothing like an 8 month old brain.  They are going to do the MRI at the same time as her next surgery to limit the number of times she goes under anesthesia. So since August we've just been waiting and praying and praying and waiting for this upcoming surgery . 

We really believe that her MRI is going to be clean with no lesions, which is how we have been praying.  When her surgery got bumped, we prayed that God would give us the right surgery/MRI time.  And yet when I got the call that it wasn't going to be until December 16, I immediately began to worry!  We won't be able to see the neurosurgeon until December 20th now, so if he wants to do surgery, it will more than likely be a January surgery instead of a December one-- which is a HUGE difference for us financially.  Nathan quickly reminded me that we prayed for the right time, and we have to believe that December 16 is the right time.  And if we believe that Molly is healed, then why are we worrying about surgery?! So we have another month to work on the praying and waiting :) 

Why is it so hard to rest in God?  I so want to get on the phone and strive and strain to get a different MRI date, and I may very well be able to, but I know that's not really what I'm supposed to be doing right now. 

Just a quick note

Hello friends! 

Just wanted to let you know that we've moved Molly's surgery up to this Friday the 26th.  She was scheduled to go next week, but while we were in Vicksburg, the beginnings of an ulceration appeared near Molly's eye.  The doctor wanted to go ahead and get her in.  In a swift and miraculous answer to prayer, the ulceration appears to be gone already! 

Thanks for your continued love and support!

last week

today

Surgery recap

Hello to all our blog reading friends!

Molly's surgery was this morning, and it went well.  We had to be at the hospital at 5:30, so we did end up getting a hotel room in Little Rock.  Neither Nathan or I got very much sleep though, so we are left wondering, would we have been more rested if we had woken up at 2am and just drove straight in to the hospital?!?!?! Not sure.  We'll have a lot more to consider if we are in this position again!

Molly was very intrigued by her early-morning adventure

Molly was all smiles when she woke up and very laid back the entire morning.  We even turned off the lights while we were in her pre-op room and let her sleep for another 45 minutes while we were waiting for her time to go back.  I think we are in a sweet spot of her being old enough to go a bit longer between feedings, yet not old enough to understand what's about to happen, so she is just her normal happy self.  This made the wait for the procedure much more peaceful for Nathan and I. 

my beautiful blue-eyed girl

have Mr. Monkey- will travel

While we wait, we meet what I assume is pretty much all of the staff that will be in with Molly.  We are pretty familiar with all of Dr. Buck-Miller's staff at this point, but we always have a new anesthesiologist and nurse anesthetist.  I did not really like the anesthesia team the last time we were there, but I had much better vibes from this one!  They took a lot of time with us, which is wonderful because the anesthesia really is the hardest part about the entire surgery. 

As usual, Dr. Buck Miller is very reassuring.  She told us that Molly is responding so well to the propranolol, that we may not have to continue the laser treatments for the whole year-- great news (particularly since our insurance is changing tomorrow)!  But she will want to see Molly again in about 2 months for another treatment.  She also told us we have to be VERY cautious about Molly's exposure to the sun- even when she's in the shade.  If her spot hyper-pigments and turns brown, there is no laser that can correct it.  So please be understanding of us, if we decline your invitations to outdoor events-- it's nothing personal :) 

Coming out from the anesthesia was much rougher on Molly this time than last.  This was hard on us, because it was unexpected.  But by the time we made a stop at the coffee bar and I pulled the car around (how long does it take to move your car literally maybe 500 ft-- well that depends on how many one way streets and construction cones stand between you and your destination...), Molly was well on her way to dreamland.  She slept most of the way home.  And has continued to sleep most of the day.  We just had a couple of hours of happy time with her which is very reassuring.  Hopefully she'll continue to get better and better! 

Thanks for all of your prayers and well-wishes!

headed home- can you see her milk mustache?

Just a quick note

Hey everyone!  I just wanted to remind you to keep sweet Molly in your prayers this week.  Her surgery is this Thursday.  She turned 16 weeks on Sunday-  what a big girl she's turning into!  When I say she's 16 weeks, it seems like she is so old, yet at the same time 16 weeks seems like an awfully short amount of time.  She has taken us on quite a ride these past few months :)  We continue to give God praise for all the joy she has given us.  We are so blessed to have such an amazing daughter!
 

Molly- then

Molly- now

Specific prayer points-

- We won't know until Wednesday afternoon what time Molly's surgery time is/when we need to check her in.  Please pray that God will have the perfect surgery slot for her.  We would like to make all of our travel on one day, so that we can avoid the cost of a hotel room.  So we are praying for a check-in time of 9 or later, which would enable us to make the 2.5 hour drive in the morning.
- Please pray that she will not need a steroid shot this time.  The shot was the hardest thing for her to recover from last time.
- Pray for Dr. Buck Miller and the rest of her  team, that they will have steady hands and the wisdom to make the right choices for Molly's treatment.
- Pray for tact for those who will encounter Molly after the surgery.  This may seem like a silly request, but Molly's face will turn black over the entire area that they laser.  I know I will be increasingly sensitive to what people will say about her face.  So I guess this really boils down to pray for me!

Thank you for all of your love and support!

Surgery Re-rescheduled

So, we found out last week that they are raising the out-of-pocket max on our health insurance policy effective July 1st.  We've already hit our out-of-pocket for Molly, and though we anticipate we will hit the new one too, we'd like to delay another round of hospital bills as long as possible.  SO we've rescheduled her surgery once again.  What day you ask?  June 30th.  Oh the difference a day makes!

Surgery Date

Hey guys! 

I just wanted to let you know that Molly's next surgery is scheduled for June 24th.  This time they will definitely be lasering her entire hemangioma.  Please keep praying for her sweet little face!

update on Molly

Sorry it has taken so long to write out an update. It has been crazy since we got back from Little Rock!   Molly's surgery went better than expected.  Dr. Buckmiller did not laser Molly's entire hemangioma, which gave Nathan and I a great sense of peace.  That means we are not facing any extra risk of scarring.  Selfishly, I was also excited that she didn't have an ebony and ivory look going on for Easter!  Dr. Buckmiller only lasered the ulcer by her mouth.  She also gave Molly a steroid shot at the ulcer, which we didn't know she was going to do until about 30 minutes before her surgery.

Molly has been pretty irritable ever since we got back from Arkansas.  I'm not sure if it was the steroid shot, the round of antibiotics they put her on, or the increased dose of her propranolol that they gave her, but she has had a lot of tummy pain/ reflux.  She has also not been sleeping very deeply and wanting to nurse more frequently.  The nice 3 hour schedule I had her on prior to surgery is out the window!  She nurses every 2 hours, often for an hour or more.  It is like she is a newborn all over again.  It has been a little disheartening to make such a retreat (particularly when it comes to nighttime sleeping), but last night she went 6 hours between feedings, so I got a wonderful 4 hour stretch of sleep!  Hopefully we are turning a corner as the steroid and antibiotic work their ways out. 

On the plus side of things- the surgery clearly helped!  There is a significant amount of fresh, new skin growing inside her ulcer.  It also seems to be much more shallow the past couple of days.  We cannot wait for her ulcer to be healed, so that she can play an explore with her hands.  Right now we keep her swaddled for the vast majority of the day, which is so sad when we unswaddle her and see how much she enjoys stretching and swinging her arms around.  Inevitably though she gives her ulcer a big swipe and it starts bleeding and she screams, so we will keep on with the swaddling until she's all healed up. 

Also, the increased dose of propranolol is making a huge difference.  Her hemangioma looks better every day.  It is also bringing the swelling around her eye under control.  She has both of her big beautiful eyes open most all of the time now.  It is so wonderful to see! 

Molly with a big round belly right after eating!

Thank you so much for all of your prayers.  They are working!  God is faithful and merciful. 

Surgery Scheduled

As you may know, Molly was born with a segmental hemangioma (we were initially told it was a port wine stain, but the specialist corrected that).  It's my understanding that the discoloration on Molly's face is caused by extra blood vessels in that area.  When we met with Dr. Buckmiller a couple of weeks ago, she started Molly on propranolol to help combat the swelling that is associated with the growth stage of the hemangioma.  The propranolol has already had a dramatic effect on Molly's swelling, but the hemangioma can be in a growth state for up to 18 months, which is why some of her swelling still remains.  Molly will be on the propranolol for at least a year.  Dr. Buckmiller also told us that she would want to do laser surgery on Molly when she was 3 months.

just before her propranolol treatment

after just a couple of doses her eye opened

Well, one of the ulcers on Molly's face is unfortunately located right by her mouth.  The propranolol helped her other two ulcers heal completely, but between her feedings and the tendancy she has to drag her arms across her face or even just burrow her face into your neck this ulcer just gets too agitated to heal.  In fact, it seems to be getting worse instead of better, so last week I called Dr. Buckmiller's office to talk to them about it.  Dr. Buckmiller doesn't want to wait any longer to do the surgery, so we are taking Molly back to Little Rock for surgery on Friday.  It is technically outpatient surgery, but we will have to stay overnight to ensure that Molly doesn't have any complications coming off of the anesthesia.  She has already undergone general anesthesia for her MRI and MRA a few weeks ago, so we do not anticipate any issues. 

The laser surgery will be breaking up the superfluous blood vessels, allowing the extra hemoglobin to leave the area.  This will help promote healing of the ulcer as well as a lessening of the discoloration.  But first, Molly's hemangioma will turn deep purple or black as the blood is initially released from the blood vessels (think about when you stub your toe and you get that black spot under your nail from the blood).  Two weeks after the surgery, her face should be back to the color it is now, and from that point it will get progressively lighter.

Surgery this early has a greater risk of being unsuccessful from a cosmetic standpoint, so please join us in praying that sweet Molly won't have any scarring or permanent discoloration because of this surgery. 

If you'd like to read more about Molly's condition, I recommend this article by Dr. Buckmiller.  She is one of the foremost specialists in vascular anomalies.  I do not recommend google-ing-- too much conflicting, fear-inciting information!