Home......is where the heart is.

The night after surgery was rough, to say the least. After we updated our last post we went up to find our girl awake and restless. The nurses were also in the middle of relocating her to a different room in the PICU. The new room was more for nurse placement, nothing really regarding Danielle.

And she was fussy, and I mean fussy. You obviously know our girl as smiley, silly, giggly.... this girl was not around. She had several doses of extra strength Tylenol and they were not cutting it. She was also starving so I fed her for the first time after we got the ok for a bottle and it was thankfully a success.
We spent the rest of the night trying to make Danielle comfortable. Held, back in crib, pass her to Daddy, then Mommy, then back in crib...it was a process. It was also incredibly sad seeing her in so much pain. Anytime she moved her head she cried. As we expected, even if the surgery would have been completed, the incisions are in the same place, at the base of her head and there is one up top. These make it difficult for feeding because of how we are use to feeding her. We now have a new technique and she is thankfully taking to it ok.

Just before midnight we noticed she had rubbed the bottom bandage off. There was a little blood, so that called for the Neurosurgery team to be paged. Unfortunately this has been a bit of a challenge and it has happened a few more times. I was able to see the incisions, they are somewhat 'c' shaped and look ouchy. Her heart rate was rising, this mommy was sobbing, seeing her so uncomfortable was tearing on my heart. We made the decision to give her some morphine to make her more comfortable and hopefully allow for some sleep....for all of us. She was out in just a few minutes, although it only lasted for 4 hours. We of course stayed right in her room, not wanting to leave her side. 4am rise and shine our girl was up, hungry and ready for some Tylenol. It seemed the sleep helped her comfort level a little bit, she was still fussy but not acting quite as agitated. Shortly after 530am the Neurosurgery team came in and checked her out. They notified us she would be getting a head x-ray and her actual Neurosurgeon would be up later in the morning.

Feedings continued to go well and once we were able to place her on her tummy and get the pressure off of the side of her head she seemed way more comfortable.
Late morning our doctor came in, checked her out and said if we are comfortable we could go home. We were both shocked to hear this but we all agreed that she had been very stable over night and because he didn't do the actual procedure, she came off the anesthesia ok, there was really no reason to stay....or as he said spend more money. I do love his honesty. So he also talked of our plan of action going forward.

Did someone say home?! We saw our first big smile when this was mentioned!

We will go back a week from Wednesday to have her stitches removed. 2 weeks after that we will go in and have this special MRV scan. This is a special scan done by his Neurosurgery team and special Neurosurgery Anesthesiologists. He then notified us that the more evasive, major surgery will take place after that scan on April 16th. So until then we rest, snuggle and love on her and pray for remarkable healing.

We arrived home yesterday afternoon and got settled. Danielle was due for Tylenol when we arrived home yet being home seemed to calm her immediately. This was the exact reason he felt comfortable sending us home. Her and Daddy took a 3 hour nap together and Mommy headed into work.
Sitting at my desk I received a knock on the door. It was our doctor, our Neurosurgeon, he also is a customer of ours and he did mention he would be coming in yesterday afternoon. The sales associate said he walked in the door with his wife and immediately said he needed to talk to Holub. He came in and asked of Danielle right away and how quick they were able to get us out of there. I shared with him how nervous I continue to be of the 2 incisions in the back of her head, after all the two incisions both go all the way down to her skull. He looked at me and with ease he says, 'she'll be fine (insert accent) she has 3 layers of stitches under there, she won't hurt it. 3 layers' he said. I looked at him and said 3?.... and he spoke over me and said, 'yes, 3 layers of stitches under those top stitches so 4 layers total. Do not worry.' WOW, I had no idea, and silly us not realizing that since this was intended to be brain surgery he had to go that far down to see what he saw. Remarkable. So that put some ease in my mind for now, knowing there is a lot of 'protection' although I am still a little nervous. he also said he had put a blocker in before he closed her up in 2 area's, that pain blocker probably lasted for about 6 hours after surgery, that explains why her pain intensity increased that first night and why morphine was needed. He couldn't send us home with anything stronger than Tylenol because they cannot have her sedated at all right now and most of the stronger pain meds have sedative in them.

Two incisions, deep, thru to her skull. 

 You can see the spots of blood that ooze thru her bandage when she is on the back of her head, ex. during changing. Tummy time right now is crucial.

Last night brought more sleep than the previous, and we were more comfortable at home, yet getting use to things and being ultra careful. She has really been grinding her teeth a lot and I think its from her nerves and masking the pain. She has only had 1 dose of Tylenol since shes been home and today I may give her another to take the edge off. She is eating good and we have seen smiles. When she is held she melts right in and does not move. I know what is on Mommy's agenda for the next few days, snuggles galore.
We have to set up nursing care again and once that is all in place this week I will be able to venture back to work. Dylan is coming home from Des Moines today and our family here will be helping with him as Danielle is not able to leave the house. Keeping her safe from germs and infection is our TOP priority right now. Washing hands before we even reposition her is a must. Nothing that we aren't familiar with, brings back memories from our NICU days that is for sure.

Yes, they always give you after surgery, her bag of hair :-( Those little curls will grow back in time.

 So for now we hopefully remain status quo. Keeping her safe, protecting her more than ever and remaining thankful for the blessings in our life recently....the care of the best doctors in the world, doctors that put themselves in the parents shoes and look at their patients for who they are. Feeling incredibly blessed right now and taking things one day at a time. We have today to snuggle our children and we are sooo thankful.~