4 weeks post op....

It is hard to believe what our little girl went thru 4 weeks ago, yet what she has gone thru for the past 4.5 years.....when we were yearning for this surgery to be behind us for so long. There was so much that led up to getting to this point that it is almost hard to believe. While we are extremely happy with the end result and so happy our girl is on her recovery road there is still so much to be cautious about.

In December 2012 our lives were rocked with the news that this surgery needed to be done stat, it could not wait any longer. As a Mom, I wasn't sure how I was going to get thru such a serious ordeal. As parents, our fears outweighed being able to focus on anything other than our worries and we needed to quickly overcome that. After the first surgery date was halted we quickly learned it was purely out of our hands, out of our control. After the first surgery had to be halted and our daughters life was saved, we quickly learned that we had our hearts in the hands of a higher power. After the second surgery was changed so last minute, and again our daughters life was saved, we even more so learned to give thanks daily, for life it to precious. It is so easy to go thru each day with as busy as life is and not stop for a minute, look around and forget to thank god for giving us another day. In the last 6 months our family has learned this, and there is not any day that we don't stop and give thanks.
Fast forward to now and it is crazy to think of how much we have worried, fret, feared for, we ask why?....when we knew once we put our hearts in the hands of an angel our world would be complete. And it is, we have a very healthy, happy little girl who continues to amaze and perplex us every single day.

The first week home was very rough. Danielle was in quite a bit of pain and the muscle relaxer and Tylenol just weren't cutting it. There is nothing worse than seeing your child so uncomfortable. She would hardly eat, she fussed and cried and was just uncomfortably. We left the collar on her as long as we could. We had been told that it would take 12 weeks, yes 12 weeks for those muscles to heal. After all they moved all of her neck muscles for her last surgery and it would take a lot of time for them to strengthen again in the correct place. When I got 14 refills from the doc for the muscle relaxer I knew something was up...

I took the collar off when I began to see it rubbing on her new shunt. It was beginning to leave a constant red mark and I knew that meant breakdown under the skin which we absolutely could NOT have. So the first few days we took it off during the day and had it on for sleeping only. She gradually began to show us how strong she was and wouldn't wince in pain when the collar was off.
Bottle feeding was a big struggle. She would only eat for Mom and that wasn't even all of the time. She had lost so much weight that I was really getting concerned. After all the only reason we got discharged from the hospital was because we agreed to have labs done by our local Ped doc to check her sodium levels which had been high from surgery. Well those levels don't go down without good nutrition. And also her recovery is SO dependent on good well rounded wholesome nutrition.
High sodium levels can cause a whole list of problems including seizures and even your organs shutting down. Danielle's level was 146 and 150 is high and once your level is at 150 it can quickly go to 170-180 and that is trouble. So it was way more concerning than I thought.
The first Friday home the labs were the same at 146. The doc at the U allowed us to stay home over the weekend and recheck on Monday. Monday's labs came and so did a fever. After a CBC and sodium check her level went down to 145 which meant it was going down and we were in the clear. The CBC came back fine which was a piece of mind.
We ended up giving Danielle the muscle relaxer every 4 hours round the clock because of her discomfort and the bottle was gone quick. After a call to the U and a new muscle relaxer she began to come around.

Memorial Day weekend Dylan and I went out of town and Danielle had 6 days alone with her daddy and that proved to be just what the doctor ordered. The house was quiet, she got lots of snuggles and it was like a light switch was flipped and our girl was here! Happy and ready to eat again! It was great she began taking full bottles and full pouches of food, sleeping good and showing us some new things!

Since then she has continued to do well. We have had to give the muscle relaxer now maybe once every other day for the past two weeks. She has been eating her bottles decent, full ones for mom and 3/4 ones for the nurses and daddy. She is taking food very well and we have added the net chewer back, putting food in that for her to get our kind of food that comes thru the net. This also helps her chewing and she is doing good. She has been sleeping really good and we've even had to wake her up a lot more often than we ever had to before.

Incisions looking really good! And remember,

this big one did not have any stitches...it was glued!

A couple weeks ago Grant Wood began coming again and so did her pre-school teacher to round out the school year. It was absolutely amazing seeing her during speech therapy the therapist said. Danielle was showing her skills amazingly well. Hitting the switch with no assistance or que at all and identifying colors and showing she knew when the color they were asking for wasn't on her tray. These are all VERY positive and exciting signs as she continues to show us how smart she truly is. Just because she doesn't communicate with her words does not mean that she doesn't know certain skills. She shows us in other ways and for being a 4 year old, well she is just about right on.
PT also came and noticed how way LESS stiff she is. That is a BIG plus we have noticed since this last surgery, she has way less tone.  She is rarely stiff.
It was sad to end the school year and say good bye to her teacher and also our most fantastic Speech Therapist from Springville who was so kind to help us out. If it wouldn't have been for her the past 2 years I am not sure we would know half of the things we do today. She was a key person in helping Danielle figure out how to show us her skills. We will miss her dearly.
Now it is on to Kindergarten and we are super excited for that to begin in August!

Besides being less stiff and showing us her cognitive skills she has been VERY talkative. Very! This has been one of the most touching things for Brad and I to see. Not only is she talking back to us when we initiate conversation with her she is also responding back to other people in many different environments! AMAZING! She has been responding with 'yea' to her therapists when asked a question, she has been chatting with us in the car, out in public places and even with her brother. Before she would usually clam up and be silent when we were out away from the house, not any more! Sister has a LOT to say and we are loving every word of it!
We start back to Witwer this week and are super excited for our therapists there to see the new Danielle in action.
HOLD UP.....
While we have all of these amazing and exciting things happening we also need to still be very cautious. Today was a good hard reality check of that. I got Danielle out of bed this morning, took off her onsie and looked down and let out a gasp. I saw this.....

That red circle may not look like much in the picture BUT in person it was a huge red lump, or knot under the skin. This is very concerning for a couple reasons, first of all it came on so fast and second of all that is her shunt tubing, from her new shunt that is balled up under there. That is very worry some because that is how the fluid drains from her shunt down into her abdomen. So instantly I was in panic mode. And since it was only 630 am and Neurosurgery didn't open until 8-9 I had to wait. The nurse arrived and immediately saw it too. I left to take Dylan to childcare and had the Neurosurgery number on speed dial. I called the Resident on call and our doctor's nurse and they both told us to come in right away. We could go to the ER or head to clinic. I opted for the clinic because the ER didn't make any sense to have other docs involved other than Neurosurgery.
We were already schedule to be in IC today for a Urology apt and Urodynamic study but this was taking precedence.
We arrived and instantly they sent us up for a shunt series which is a series of x-rays that show the shunt tubing, and also a CT scan. We also ended up doing the Urodynamic test so we didn't have to reschedule that for the 2nd time. By the time we go the scans and x-rays done it was 230 and back to the clinic we went. Danielle was such a good girl but the poor thing couldn't have any food or drink just in case they needed to intervene. She was a trooper and still managed to put a few smiles on her face.

But when we were in for the Urodynamic study she was really nervous I could tell. she instantly broke out in hives. This had happened one other time before her last surgery and it broke my heart. Today she had them everywhere. They went away while we were waiting for the CT, then we got in for the CT and they instantly came back again. Broke my heart.
After the scans we ended up seeing the Neurosurgery resident on call. She was perplexed and instantly said she had no idea what was going on. There had been another patient taken in to Emergency surgery and that is where the Chief Resident was. But Jenelle the Resident immediately took a picture and sent it to the Chief Resident who was in surgery. She also sent us right up for labs and said we would probably be staying the night for observation. That was just what I feared, and admission.
After labs we returned to the clinic, poor girl got hives again during labs :( We waited and waited, the clinic was wall to wall people and not even a seat in the waiting room. Thankfully they got us right to an exam room and we waited for the Chief Resident. She came in and also was perplexed, so perplexed that she also feared the worse that her tubing may be disconnected. She reviewed the scans that were taken today and looked at the x-ray and just couldn't figure out why it was first of all balled up and second of all red. It was obvious we were at the right place at the right time because her Neurosurgeon had been called in for the Emergency Surgery therefore was thankfully in the Clinic and wanted to see Danielle. The Chief Resident turned it over to him because she was also at a loss.
After review of the scans numerous times and the x-rays it was determined that her shunt tubing on the left side, the new one, in her neck is looped up. How, we have no idea. He compared the x-rays today with the x-rays from may after that surgery and it was fine then. He said it could have happened after the last surgery when they had the re tractors in there holding the neck muscles back but he wasn't sure. And he really had no idea why it was red. If it were infection then the entire shunt tubing track would be red not one specific area in a circle. He said unless she happened to knick it or get bit by something on that exact same spot. I mean seriously what are the chances of that?!!!! I swear, only our poor girl.

So he was also very perplexed and for now gave us the ok to come home. BUT we now have to be extremely careful when picking her up. If we lift her too much on the sides of her abdomen when lifting it could cause that shunt tubing in her stomach to pull which would pull that part that is looped and could cause it to come disconnected, that would be bad. So we have a specific way to lift her and she still needs to be elevated and consuming as much fluid as possible to keep her bowels clear. It showed she was a little backed up and that can cause her shunt to not function properly.
So we are continually being reminded how incredibly fragile life it, how continually fragile our girl is and how much in our life can change in one day, literally over night. This is not a set back, it is just another reason to remember how careful we need to be with Danielle. We will do absolutely anything for her, and careful we will be.

We could not be more thankful for our amazing Neurosurgeon. I am sure it seems like we thank him also and give him a lot of credit, but it is he who gave us the continuing gift of our girl. She was brought here to teach us, love us and we are so blessed to be her parents.
Our next apt in IC is on the 20th where we will meet with Nephrology. And then the 26th, one day before our princesses birthday, where she will have another MRI and meet with our Neurosurgeon. I will also have to get her back in to see the Urology doc after today's scan to get the results.
Tonight we sleep well, for it is another day for which we have been blessed.~

For all of the craziness we are embracing, I thought this was very fitting for us Mom's, and Dad's alike:

For the days we are running on empty. For the days we just don't think we have it in us to read one more story, play one more game of Uno, wash one more round of sheets. For the days when we think everyone else has it together. For the days we're sure anyone else would do this job better.
For those days. You know the ones.
Repeat after me:

1. I shall not judge my house, my kid's summer activities or my crafting skills by Pinterest's standards.

2. I shall not measure what I've accomplished today by the loads of unfolded laundry but by the assurance of deep love I've tickled into my kids.

3. I shall say yes to blanket forts and see past the chaos to the memories we're building.

4. I shall surprise my kids with trips to get ice cream when they're already in their pajamas.

5. I shall not compare myself to other mothers but find my identity in the God who trusted me with these kids in the first place.

6. I shall remember that a messy house at peace is better than an immaculate house tied up in knots.

7. I shall play music loudly and teach my kids the joy of wildly uncoordinated dance.

8. I shall remind myself that perfect is simply a street sign at the intersection of impossible and frustration in Never Never land.

9. I shall embrace the fact that in becoming a mom I traded perfect for a house full of real.

10. I shall promise to love this body that bore these three children out loud, especially in front of my daughter.

11. I shall give my other mother friends the gift of guilt-free friendship.

12. I shall do my best to admit to my people my unfine moments.

13. I shall say sorry when sorry is necessary.

14. I pray God I shall never be too proud, angry or stubborn to ask for my children's forgiveness.

15. I shall make space in my grown-up world for goofball moments with my kids.

16. I shall love their father and make sure they know I love him.

17. I shall model kind words to kids and grown-ups alike.

18. I shall not be intimidated by the inside of my minivan this season of chip bags, goldfish crackers and discarded socks too shall pass.

19. I shall always make time to encourage new moms.

20. I shall not resent that last call for kisses and cups of water but remember instead that when I blink they'll all be in college.
... with love from one tired mother  (and father) to another. Go Well. ~