3 Weeks Post Op

Well, we made it to 3 weeks. This past week, I've been able to give her a REAL bath for the first time since the surgery. It's been wet cloth baths since now, and I'm so glad that's behind us. I believed she missed her little baths, cause she loves the water. I do intend to get her back in the pool again soon too. We still have to keep the incision clean as it heals, so we still have to be careful of that. I put aquaphor on her incision a couple times a day, hoping that will help it heal well. It already looks so much better than when last I posted. She woke up sick today with congestion and dry/bark coughing, so hopefully that doesn't stay around too much longer. Eve has it too. Other than that, she's been doing great, being a normal baby, with normal laughs and play and normal tantrums. :) She's eating well, still trying to get used to the taste of food. She's so used to unflavored Elecare formula, I think she'd prefer yuckiness like that. eeeee.
She had a 9 month check up with the Ped. wednesday. She was healthy, but there was one thing we all noticed. Tesh is still a little behind on her large motor skills. She not extremely far behind, but the Dr. suggested that we go ahead and get OTs involved to help us, help her get moving forward with her skills. :) She's not yet crawling, but she will roll all the way around. She is not yet leaning on things to stand, but is sitting up much steadier than before surgery. I'm not too worried about any of this. I'm sure she'll catch up at some point. With her eating very pureed foods now, I can't see her as a true 9 month old anyway. Not sure what we'll do for her 1st birthday, but I'll just be glad that we made it to her 1st birthday with all we've been through with her.
The household is still under a little stress, trying to get used to all this still. Isaiah is doing decent. Eve has been having accidents almost daily since just before surgery, and she's been potty trained for a while. I just wish I knew what was in her little heart making her feel so insecure. I know she's having to deal with all this attention on Tesh, but it doesn't matter how much more attention I give Eve, the accidents keep coming. Tesh is still timid with people touching her head, but rightfully so. Me, as mom, is trying to find the middle road to laying down the law with the kids, but showing grace at the same time and, of course, taking care of kids vs. cleaning house is always every mothers agenda. Josh, my husband, is working like a dog, trying to make up for lost time. Which brings to me to my side note for prayer. We are struggling financially. Josh has missed a lot of work for 3 reasons. Job change for summer time (he works at the school during school days), Tesh's surgery and various appts. (which other family have been SOO gracious as to take me so he can work) and then the work that he does, doesn't always need him everyday, which is so bittersweet to see his face still when the household wakes up. I love spending time with my husband, God knows I do, but we know that when he's home, he's not getting paid. We know that God will provide somehow, but our mortgage company isn't so forgiving. :( I'm being transparent about this now, cause we need prayer for provision. We know He'll come through for us somehow, like He always does. He has blessed us in so many ways, and has taught us to live frugally cause we know that when we are in the thick of the ministry, that we won't be making very much. We do not wish to be wealthy, but want to make enough to give and live. :)
I thank you all for continued prayers for Tesh's recovery, and for the provision of our finances, but also for a calmness in Eve's heart. OH, and for Josh, for strength and wisdom on running the household. He has been so faithful to our family, and I will always be proud to be his wife.
Here's some pics from our bath a couple days ago, and then today!

Bathtime! Let's get that dried blood and antiseptic off.....

Much better!!

Today!!

Happy Friday! God is good!!

2 Weeks Post Op:)

Since I've last posted, we celebrated the 4th of July on the 9th, (due to it raining on the actual 4th, lucky us) and have celebrated my brother Noah's wedding to my new sister Emily, on the 16th. :) Just yesterday, we took Tesh back to Iowa City to take her suture stitches out.
So needless to say, it's been non-stop partying ever since we got home. :)

Tesh loved the grass and the fireworks, until an overstimulation occured and we had to start heading back to our van to go home before it was all over. We saw the finale walking back.

I painted Tesh's toenails, for the first time for the wedding. I also tied a black and white bow on the top of her helmet. ( I think I've gotten way more comments about her helmet, more than ever, after I did that. LOL)All the kids were pretty good during the event. Diva Eve was having a little trouble, but that's usual. :) God love her. Isaiah was all about being there to see everything. Easy going Tesh enjoyed the day's events, but then crashed by the reception. :)

Give a 2 year old your bouquet.....

This was similar to my hair style for the wedding. :) She wanted to wear her hair that way.

He was enjoying himself SOOO much. :)

I was terrified to get her stitches out. I rebandaged her incision on Saturday and found that her skin had overgrown over the last inch of stitches in the back. I cried my eyes out, and lo and behold, one of my dearest friends Stephanie calls to check on us. She reassured me, (backing my husbands words) that she'll be fine. I also had my "craniomom" to ask questions to too. That helped as well. But still, as my mother in law drove us to Iowa City, I couldn't help but wonder, "how in the heck are they going to get these stitches out without hurting her, especially with that overgrowth?"

We got there, and immediately our nurse LOVED the helmet bow, saying she'd never seen anything like that before. :) Lonnie, the PA, came in to take the stitches out, and said that the overgrowth is normal and that it's fine. As I held Tesh close to me to hold her still, she already started throwing a fit because of the restriction. She hates her head being messed with, so as I watched Lonnie clip each stitch, I new she wasn't hurting her, and that the scream I was hearing was all, "Leave me alone!!" ( I know her blood-curdling pain scream, and that was not what I was hearing) So that made me feel a lot better. After that, the stitches were just sliding out, like everyone said they would. It was over. She was free of stitches.... well mostly. There are some stitches that will desolve after a few months, but now we can work on helping this incision heal even more, allowing it to scab.
Isaiah and Eve were so cute during the whole process. We had them in the room, and they were watching with such curiosity, but when Tesh really started getting mad, they started singing to her, which helped a little, but it warms the mother's heart. Isaiah and Eve bicker a lot, but come together as a team, when one needs them to, and I love it. I hope they never lose that.
We got to see another x-ray view that was taken after surgery. It showed us where the other cuts were made during surgery to encourage the brain to push the skull out on the sides as well.
Let me explain this one last thing, by the time we are helmet free, there will be no more gap at the top, BUT the suture will "gel" together. It will be a flexible material of skull that allows for growth still cause it's not hard actual bone. We still need to be careful with her head as if it were a newborns head, but there won't necessarily be "a gap" there. The fear is that it will continue to fuse together again too soon. That will require another surgery later. But our hope is that it will not fuse together again too soon, and she'll be free of the worry of cranio-.
I haven't had to give her tylenol in almost a week. She's doing excellent. She's eating foods again, ....slowly... but eating them better. She's not gaging and wincing like she was before. I'm going very slow and very small bits though. Her hair is starting to grow in a little. I think she might have 1-2 mm on there. :) Her incision looks so much better without the stitches.

Nurse Lynn taking the bandages off for the last time. :)

She recovered quickly from that. lol

PA. Lonnie taking the stitches out! :)

Kids watching and singing. Here's the x-ray photo. Now, you have to look carefully, you can click it and see it bigger, but there are 2 grey lines on top (where the mouse/arrow is) going down, ...those are the cuts. There is also a cut in the back where you see the gap. That was an extra cut because of the progress of the fusion where the sutures come together. The mass on top, outside of her skull, near the back, is all swelling :( No more swelling today though. :)

Pictures from today. You can see where it is better already, and where time will make it better. I'm very pleased with the outcome thus far.

There are some antiseptic still stained on her incision site from after the stitches were taken out.

Here's the ever-so-popular helmet with the BOW! :))

Bumper sticker -

Live it up!!

Official One Week Post Op.

Well, we made it. One week after surgery, she's healing well, playing and acting normal, and best of all, getting back to her routine of eating, awake, and sleeping. She has been doing so well, I know I'm witnessing God's hand upon Tesh.

She's getting back to her normal self. She's starting to calm herself to sleep again, with little fussing. She's eating her bottles, better now that we switched to one size bigger bottle nipple because her dysphagia is improved. I haven't fed her food yet, but intend to this weekend. We have to start slow with that. She's back to eating every 4 hours, awake for 2 hours, and taking her naps. She'll wake a little earlier in the morning from time to time, but I'll give her tylenol and she'll go back to sleep until her internal clock wakes her again and it's time to get up. I haven't had to give her tylenol around the clock anymore. I'll only give it when she seems to be fussier, which almost only happens maybe twice a day, if that. I've peeked at her incision and it looks so healthy still.  She still finds humor in her siblings running a muck around the house. I thinks she's much happier to be back with them. She's already bumped the back of her head on my floor. I freaked out. She's ok though. :) Then (you'll see in the pics) while taking a nap, she took her cap off, and stripped half her bandages. What a mischievous little girl :)

As I sit today writing this post, I feel very blessed. Even looking around my messy house, I have three healthy kids playing, one perfect child with our Father, and a husband that would die for this family. I am very blessed.

Here's some pics over these last couple days while we've been home. You'll notice that her head shape isn't a LOT different, but it'll shape out over time. The kind of surgery she had isn't a quick fix. Her brain needs the time to push her skull in the appropriate shape. Her sutures are now open to allow that to happen. It's a slow process, but there will be progress. We just have to be patient. I just feel better knowing I don't need to worry about inter cranial pressure anymore. Phew! So glad to be on the other side! Happy Birthday to ME!!

If you look closely at that second picture, you can see where she peeled off her bandages.

This left picture was actually very sweet. She woke up early, and Josh was getting ready for work. I put her next to me, and she went from sitting up, talking constantly, to laying her head on my belly and slowly falling  asleep. I, then, rested until she woke again. I didn't get much sleep during that, but I wouldn't have traded it for deep sleep without her in my arms.

Sisters at play. Evey wanted to match Tesh with her helmet. :) so cute.

welp! She likes PLAYING with her helmet. Not to fond to wear it, but she's does decent with it. We don't make her sleep with it on. Here, we're getting ready for a nap. :)

Thank you for all your prayers.

God Bless!

The (ugly) Helmet! and.....home!

Well, she didn't like the prosthetics guy very much but we got it done. He first tried on a smaller helmet but her everpresent oblong shape still hindered that, so he went with a little bigger one. She still trying to get used to it. All the discharge papers are going through and we'll be released in no time. I'm excited to go home and feel very very grateful to God about His hand in all this. I couldn't ask for more with this experience. Everyone around us was great, Tesh has been healing so nicely and wonderfully, I feel good coming home.
Here's some pics of her ugly friend called "the helmet". She'll wear this for 6-8 weeks for protection.

As I'm finishing this post up, I'm sitting in my living room, on my wonderful couch, with our whole family home and together. :) It's so good to be home.

Look at the top of her head, you can see the gap that was cut.