Hard things

My dear friends,

I'm sorry.

I'm an on-again-off-again blogger... consistency in any social media form is just not my strong suit. If I am posting to instagram, then the blog gets forgotten—or vice-versa.  I don't know what my deal is really... I promise I don't neglect any of my children this way.

BUT this time I have a good reason for not keeping up... we have had a really HARD time since Ian's surgery. In an emotional, life-sucking, punch to the gut kind of way.  A week after Ian's surgery we started noticing things that at first I questioned. "Am I being an overly worried mother, or is this something I should be concerned about?"

Do y'all do this too? I want to trust my gut but I needed a little confidence to call the doctor. So Monday morning I was on the phone... left a detailed message for surgical at CHOA. I kept my phone in my pocket all day, waiting. And waiting. No call on Monday. Tuesday I called back and the recording says "do not leave duplicate messages"... Yeah, fat chance. By now I'm in full momma bear mode and my message was pretty direct. I NEED A CALL BACK.

So I started scrolling through my directory of folks we'd dealt with at CHOA, I called our urologist and emailed a PA over there, begging for a direct line or better way to get our doctor.

I finally got our doctor late Tuesday afternoon. She was concerned that he was still in pain and had a fever but didn't seem as upset by what I was seeing... which was gruesome to say the least, and I will spare you the details.

Right after I got off the phone, our urologist returned my call from my early frantic attempt. Sweet man. He was concerned and asked for me to send him pictures of the surgical site. He said Ian definitely had an infection and that he hoped we got ahead of this in enough time to let oral antibiotics work (he said "staph infection" and "we would need to go to the hospital if this didn't work." I panicked.

Looooong story short, this has been extremely difficult. It seems this surgery was unsuccessful and he will need to have another surgery with a temporary colostomy (to give him time to heal). The biggest victory has been that I feel like Ian and I have grown leaps and bounds. It was my prayer request to bond closer and that unquestionably happened.

Ian has been in a lot of pain, but has been in such good spirits despite it all. My sweet little boy was smiling from the moment they wheeled him back to us in the hospital and throughout this all. This has not been easy for him. Sitting has been pure torment. My precious momma took Mae to and from school every day. And we've been cooped up for two weeks. BUT his infection is gone. AND he is feeling much better.

We canceled our Thanksgiving plans, so it's likely you will see us at the Cracker Barrel, but here's my deep breath and my letting go.

Tomorrow is a new day. And I can do hard things.



 

it's oh so good

Today we had Ian's neurology appointment to discuss the small tumor they found on Ian's spinal cord. I guess I didn't realize just how much I was holding my breathe about this... because after we walked out of the doctors office I felt a giant boulder of stress leave me. 

It turns out Ian's tumor is not large enough to worry about removing now (and maybe ever!!). The doctor is very hopefully that it wouldn't cause him any problems. It's not just the size that mattered, but also the location. Ian's spinal cord ends at L2 ( and not L1 like most people) but this is very minor... and we were told today that the majority of cases like Ian's end at L3 or L4, which does pose a problem. Have I lost you yet?  It's very GOOD news. No surgery to remove the tumor, just keeping an eye on it as he continues to grow to make sure that nothing changes. 

 

Ian will still have a surgery for his anal atresia sometime soon, so he's not out of the woods (we would love your continued prayers), but this surgery we've known all along would happen.

And have I mentioned we have ROCKSTAR doctors. Seriously. We are so blessed to have all these medical geniuses caring for our family. 

ICU 2

Last night Jovie did very well. She's gone through an incredible thing and her body is still in shock. The breathing tube came out last night at about 12am and she is breathing on her own now. She is starting to wake up this morning and has been very upset. She wants me to pick her up and hold her but I can't and it kills me. 

They've already decided that she will be in the ICU for at least another 24hours. She's still on some support to control her blood pressure and something that is helping her heart pump. 

They warned me that today will be the hardest for her because she will be waking up but still has so many wires going everywhere she will have to stay still and we can not hold her and comfort her the way she wants. 

I will keep updating the blog when I can.  We can not thank you enough for your prayers for our girl. 

Surgery Tomorrow

Today we spent the day at the hospital getting ready for Jovie's surgery tomorrow.  This is more overwhelming than anything I've ever done. It was just an incredibly hard day. We met with nurses and doctors one after another describing in detail the surgical proceedure, every risk involved and all to expect when we see Jovie in ICU tomorrow after it's all done. I tried my best to hold it together in front of the doctors but all I really wanted was a sound proof room to go and scream and cry and get out this crazy feeling I'm having as the time ticks closer. See I know this surgery is not only necessary for her LIFE, but we will get an active little girl... A PINK little girl very soon. 

We have to be at Egleston at 6am in the morning and they will take her back to the operating room at 7:30. We heard different times for her surgery. We were told the surgeon will take 5-6 hours and we were told to expect 9-10 hours that she will be away from us. Whatever the amount is, we know it is not a small surgery and however long it takes doesn't matter as much as what they find as they operate on her and that everything goes smoothly. 

We heard today that the piece they are putting in to act as her pulmonary artery will need to be replaced by open heart surgery in 3-5 years from now. There are also many more times that she will have to do additional work on her heart through her main artery (catheter).  I know that I need to focus on tomorrow but I also know God needs to make me strong from this. There's more hard times ahead. 

My dear friend just sent this to me tonight. 

I  know God can do exceedingly and abundantly more than I can even think or ask. I am praying we will receive an unleashing of God's peace through this. Not little drops of his strength or a trickle, a powerful explosion of release as if a dam has burst to release a river of his peacefulness. 

John 14:27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

Jovie's Catheter

So this morning we arrived at the Sibley Heart Center at Children's Hospital of Atlanta. The nurses got Jovie set up with a little gown and the sensors that stick on to keep track of her vitals on the monitor.They didn't do anything at all that hurt her but she still was so upset by them. The doctors came by and introduced themselves and helped explain what was going to happen while they had her under anstesia. Every time anyone came into our room Jovie would show them they weren't welcome -- it's clear she knew something was up. They took her back a little before 10am and put her under and started the catheter, did blood work and an extensive ECHO while she was still. This way they have every bit of information to go by to make the best plan on how to fix this baby's heart. The board will meet today to go over everything and we will hear this week what they say. Her resting oxygen level was at 79 (it should be 100). While she was awake today it would go up and down, up and down from 60 to 74. 

When they came to get us after she was through they expected her to sleep for a while, but not Jovie. She woke up as soon they took her breathing tube out... Before we could even get to her. She was crying and very upset. Her little hand had the IVs and cords all over and the blood pressure cuff would tighten every 15 minutes and really make her mad. She is a brave little girl and I was glad to see that she was mad and acting like herself - this little tiger baby was determined to recover quickly. 

She was drinking and eating pb&j and the nurses were all impressed with our little girl's improvement. They started saying that if she continued to do well we would not have to stay over night for recovery. 

They told us Ian would not be able to be back in the room with us but when we got there they never questioned it. This meant that Cody didn't have to stay in the waiting room all day too. Ian was AMAZING! We woke him up at 5am and he seriously could not have been more happy and agreeable. He even got off the chair and got a toy to give to Jovie while she was upset. He gets a gold star today - everything went absolutely as best as it could have gone! 

God sure did answer our prayers today and we know all the prayers surrounding this day have been heard. Y'all, we were checked out of the hospital by 2:30!  We are HOME to rest and let Jovie recover here in her own bed.