Thanks for asking...

Many people have been asking if there is any news about Amelia's surgery, but we are truly in a holding pattern until next Thursday when we will find out whether or not an O.R. is available on the 7th. It's even hard for me to know how to pray, but it usually goes something like this, "Lord, it would be really wonderful if Amelia would be able to have her surgery next Friday, and we are asking you to provide an O.R. and to keep her healthy in that case. But I have seen time and again, your ways are not my ways. Help me to trust you."

As much as I want Amelia's surgery to be done on Sept. 7th, I have to be careful not to put my hope in that specific date, but in Jesus. Hebrews 11 says that faith is being sure of what we hope for and certain of what we do not see. I am NOT sure that her surgery will take place next Friday, but I am CERTAIN that the God who came to redeem a broken world has it in mind to heal our baby girl and see her whole and complete whether that be in September, October or on the day she sees His face in heaven. It's only the timing that's up in the air...

Psalm 31:14-15 But I trust in you, O Lord; I say, "You are my God." My times are in your hands.

In your prayers for us, thank God that He has kept Amelia healthy since her cold, and ask Him to make a way for her surgery to take place at just the right time. Thanks so much for your prayers and support! We promise to update you all as soon as we know something next week...

Nineteen Days

As of today Amelia is officially healthy again. Nineteen days since she first started sneezing and sniffling. Incidentally it is also nineteen days until her new surgery date (we hope!) of September 7th. So my apologies to everyone who we may interact with over the next two and a half weeks. If I seem to treat you or your children like they are harboring the plague, please forgive me---I'm a mom on a mission.

We have a date...sort of

I spoke with the OR scheduler this morning and she said we now have a date of September 7th for Amelia's surgery.

This is definitely an answer to prayer since the surgeon's schedule is so booked. There are several issues, however. Amelia is now scheduled as what's called "best case". Apparently the regular OR "block time" on that day belongs to neurosurgery and Dr. Perry (the pediatric neurosurgeon) has another case already scheduled in that slot. Dr. Ewend and Dr. Van Aalst are both available on that day, but the question is whether an OR will be available. (Dr. Ewend is the chief of neurosurgery whom we met with several months back. He routinely performed these surgeries with Dr. Van Aalst prior to Dr. Perry's arrival.) Amelia's status as "best case" means that we will not find out until the day before whether or not she is a go for the 7th. Her pre-op appointment is now scheduled for 12:45 on Thursday Sept 6th and we should find out an answer at that point.

The scheduler is still holding the October 5th date for Amelia as a back up in case the surgery on the 7th does not work out. She could not give me any idea what the odds are for her actually having the surgery on Sept 7th. (FYI--after Dr. Van Aalst's scheduling glitch last month, he had tried to get Amelia in as a "best case" on that Thursday, August 2nd, but there was no OR availability that day.)

Meanwhile Mya will start kindergarten on August 30th or 31st (we don't get to find that out until the day before either!) and Owen will start preschool on September 10th. Healthwise we are all doing better, except for Amelia whose runny nose is still lingering.

So that's the news...thanks for your continued prayers!

The obvious prayer requests are
1. That Amelia is in full health for September 7th
2. That an OR will be available on that date

Now for a few pictures. :)

Here is a lovely picture of the top of Amelia's head which shows the narrowness that will be corrected.


And here's just another pretty picture of our sweet girl.

Pieces of the puzzle

The roller coaster ride continues. Yesterday the O.R. scheduler told me the first available date for the surgery is October 5. Brian and I then sent an email to Dr. Van Aalst (who is on vacation for two weeks) asking if there is any chance the date would be sooner. He wrote back quickly and said he would speak to her about getting the surgery done in late August or early September. No idea when we'll hear the final word on any of this.

Meanwhile I am attempting the nearly impossible feat of keeping our family germ-free, realizing that Amelia could catch something from which lingering symptoms could lead to another cancellation of a surgery even a few weeks away... (She is still sniffling with her cold which she started a week ago). While I recognize that I have little to no control over this in reality, I still feel the need to be as vigilant as possible about hand washing and about what I allow the kids to be exposed to. Already it is exhausting. Of course Owen decided to celebrate his birthday today with a trip to the doctor because his cold had worsened an he had spiked a fever. He's now on antibiotics, poor guy. We also made the heartbreaking decision not to attend Brian's brother's wedding this weekend (Brian will attend without us) because several family members have had viruses recently.

Another interesting piece of this puzzle is Mya (who now appears to be healthy, thankfully!). She will be starting kindergarten in the end of August and the timing could possibly conflict with Amelia's surgery. In that situation, I know my mom would step in and do a wonderful job, but I still feel incredibly torn at the idea of not being there to support Mya through such a major transition (she has never even been to preschool).

I know in my heart that God really is in control of all of this and that there is no sense in me worrying about it, yet I wear myself out daily doing just that. I can't wait for the day when I can look back on this crazy time and say, "Wow, that was tough, but God really carried us through."

Psalm 61:5-8 Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation. He is my fortress, I will not be shaken. My salvation and honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, O people, pour out your hearts to him, for God is our refuge.

Hope Deferred

No news on a surgery date today.

I have made calls to the new case manager (our original case manager is leaving UNC) and to the OR scheduler, and I have no answers on a new surgery date. I expressed to both of them my hope that the surgery could be rescheduled sometime this month, before Mya and Owen start school--expecting that a whole army of germs will be entering our household once they do.

My conversation with the OR scheduler was disappointingly familiar--she told me she is waiting to hear back from neurosurgery. (This was the person I pestered weekly for months until we finally secured our Aug 3rd date). I asked if she could give me a ballpark date and she said AT LEAST September because Dr. van Aalst already has cases booked ahead of us in August.

Meanwhile Owen and Mya keep asking me if they are allowed to kiss Amelia yet.

So here's my verse for today: Proverbs 13:12
Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.

Let me just be honest and say I think this whole thing STINKS....the colds, the decision to postpone, the waiting, wondering, and worrying...The first half of that verse pretty much sums it up. At least I know God gets it.

No Surgery Today

Well, we're back home already. After checking her vitals, we met with Dr. van Aalst and the anesthesia team. Amelia's cold had not worsened since last night, but she is still slightly stuffy with occasional sneezing. As the team explained, her cold increases risks of other infections post surgery - including pneumonia - and while she was "OK" enough that they would have performed the surgery had we said yes, both Dr. van Aalst and the lead pediatric anesthesiologist said they would opt not to do it today if they were in our shoes. So the clear choice was to wait. Dr. van Aalst suggested we would be on the priority list and that we would be scheduled within the coming month (but not the next two weeks). We should know early next week.

So THANKS for all the prayers. While we're disappointed, we know God has this figured out and that this will happen at the right time. We'll keep the blog updated as we find out about a new date and other developments. Until then...

Tomorrow Morning

We are planning to take Amelia to the hospital as planned at 6:30 am to check in for her surgery. At that time the anesthesiologists and the surgeons will determine if there is any reason why she is not healthy enough to undergo the surgery. If she is healthy enough, they will proceed as planned and the surgery will take up to five hours. If the surgery is cancelled we will come home and immediately update the blog to let you all know. Otherwise please pray for Amelia tomorrow morning as she undergoes the surgery.

Some ways to pray:

--That Amelia will respond well to the anesthesia.
--That the surgeons will use great skill and be completely focused on Amelia during the various stages of the surgery and that there would be no unexpected complications.
--That her body would respond well to the surgery and begin the healing process immediately.
--That the pain medications would work appropriately.
--That as she begins to wake up from the surgery she would not feel panicked or afraid, but that the Holy Spirit would envelop her and cradle her, especially when we can't.
--That when her eyes are swollen shut in the days that follow that she would be comforted by our voices, our touch, and our scents.
--That we would experience the comfort and presence of Jesus throughout all of this.

We are definitely feeling surrounded by the prayers of so many people--many who don't even know us or Amelia personally--and we are so very grateful.

We will update the blog as we are able tomorrow and afterward.

Amelia's First Cold

Amelia definitely has a cold. She probably has some postnasal drip, because she has a rattling cough. Her nose sounds a bit stuffy, and she is sneezing a lot, but it is not runny (so far). She does not have a fever.

At 4:30 a.m. (after I fed her) I was on my knees, crying out to God to heal her or somehow allow the surgery to go on as scheduled. (It still may be possible depending on how she is doing.)

Ironically this is her first cold.

Five Months Old!

Today is Amelia's 5 month birthday. These are the pics I would usually email to family and friends, but since everyone is already checking the blog...here they are! As you can see, now she can not only suck her thumb, but her toes as well! And yes, after five months she now has her very OWN teddy bear and no longer using stand-ins from her big sister. ;)

The kids are colds are still pretty bad--snot is everywhere. I must have washed my hands a thousand times today between caring for them and then for Amelia. They are being really careful about not touching her, which is sad, but also sweet.

As for Miss Amelia, she is doing okay--she has been sneezing a lot though, which worries me, and tonight when I was tucking her into bed she had a little stuffy sound in her nose. I'm trying not to freak out because as much as I dread handing her over to the surgeons on Friday, the thought of having to postpone it feels like death to me.

With the scheduling roller coaster and now the threat of illness, I have been hit time and again with waves of uncertainty this week. I have those moments of panic where my heart sinks down into and my stomach...

A friend sent me Isaiah 26:3-4.

You will keep in perfect peace him whose mind is steadfast because he trusts in you.
Trust in the LORD forever, for the LORD, the LORD, is the Rock eternal.


...in those moments of panic, that verse has come back to me again and again. (Nothing like a little crisis to get you to memorize some scripture!) In the midst of so much uncertainty there is no way for me to find peace EXCEPT in the Lord. So much is beyond my control. But when, by His grace, I am able to shift my focus to the Lord instead of my circumstances, I DO find peace. I may not have control over all of this, but He does! And I truly believe that He has Amelia's best in mind and that He knows far better than I do when this surgery needs to happen.

So, trusting in Him, we DO continue pray for her health and for the surgery to be Friday if at all possible.