More Pictures

More pictures we took to remember our Cranio Synostosis story.

"If you think this looks bad, you should see the other guy!"

 

The other guy:

We were told early Sunday morning that we would be spending another night in the PICU. Then Dr. M. came and told us that she just looked too good to stay. So as soon as we get that Art-line out we were ready to go.

Let's put it this way, she was NOT a fan of having that thing out... neither was her mom. I took a few pics, without really looking and then deferred to dad and nurse.

It took a little while for us to get transferred. Which was A-OK with us. We were able to watch almost all of the Bills game.  

The swelling really started to subside in her face on Sunday. By the end of the day her black eye nearly was gone.

 

About to say good-bye PICU...

 

On the move.

Snuggled in, enjoying the change of scenery. Or something like that.

Almost done!

Settled in:

While the nurse was getting us oriented a surprise was delivered.

 Tim asked who they were from and I said I would check after the nurse left. Good thing I did. They were from him, and just about the sweetest thing he could have ever done.

 

We were just about to go to dinner and then we had some surprise visitors! 

Aunt Rosi and Uncle Ray came for a visit. Bearing gifts of roses and pumpkin bars.

What a great first night on the Peds floor!

We were told we had to stay on the monitors for the majority of the time.

But when we were unplugged, we enjoyed every second! 

After dinner we came back and we got to go for a little walk. So awesome.

 

Still just so- Happy!

This was Sunday night, notice how great her eyes look!

BABY JAIL!! Her first crib!

She didn't hold back her smiles. This was her smiling at Veronica our nurses aid.

She was probably my favorite. Mercedes' favorite too!

 

Monday afternoon we found out that we could leave on Tuesday.

Next thing to get done- X-Rays.

The grey strip in the back is where the doctor cut.

The grey in the front is her suture that never closed. 

The greyed out lines is where the doctor cut slits to allow for rapid reshaping by the brain.

If you look close towards the back you can see where he separated the back suture.

 

 

Here is Mercedes in her "Daddy Rocks" shirt. 

There is a "34" on the bottom, we made these to celebrate Tim's 34th year.

And what a year it's been!

More Visitors! We had a couple of friends come earlier in the day. My dad's first cousin Pam and her two daughters were in Iowa City for a check up and they stopped by. We visited for about an hour and it was wonderful!

Then later in the afternoon a friend from college came by with her son. This was also a very nice visit. It was really nice to hold a happy baby who didn't have any cords hanging from him!

Then on Monday evening my brother, sister-in-law and their two kids came to visit.

We got to leave the hospital for the second time! We went to eat at Poncheros. It was nice, but I was ready to get back to my baby! Unfortunately Paul wasn't able to come in. So the boys hung out in the lounge.

The next day was a pretty busy one. It was discharge day. The next picture isn't for the faint of heart. It is a picture of what it looked like under all those bandages.

Next came the ugly helmet.

But she lights it up with those eyes for sure!

Walking out the door!

Pictures from home:

In an effort to decorate the helmet we bought plenty of stickers and people have got to "put their mark" on Mercedes!

 



Business As Usual

We have been home for a week now and the most surprising thing is that things are normal. My clean house lasted for about two days. Two glorious days. The kids came home Wednesday evening and it was a very emotional reunion. Our oldest came in the door crying, so thankful to be home with us. I asked her if her tears were tears of joy and she said yes. She was happy to get to do the things she did, she just missed us. Which is ok, because we missed her too. All of the kids were so thankful for the people they stayed with. They all had a great time and we were so happy to know that they were being loved and fed and well cared for. Thanks again, from the bottom of our heart for that. We really do know how blessed we are to have such amazing family and friends. We had a nice evening at home. It was so very peaceful. We were all very happy to be back home as a family.

 

That night began the first stress I really had over the whole experience. Sleeping was a bit of an adjustment for Mercedes. So in the middle of the night when she woke up, we checked her bandages and they had leaked. We were told we would not need to change Mercedes' bandages unless they got wet, so there in the middle of the night, the first night home, we needed to change bandages. It was a little stressful. Especially considering that the hospital said they would send us home with some just in case. Well, they forgot to get us more so we only were sent home with two. It takes five bandages to cover her stitches. We did what we could with the two. Thankful the top stitches didn't leak and stayed dry. And then Mercedes went back to sleep for 5 (almost uniterrupted) hours. And so did her mom. Enter the first day of watching Iowa Public Television in the morning for the kids before Mom and Mercedes got up!

Thursday proved to be a pretty good day after we got over the bandage issue. The hospital called and told us if it happened again to call. We got some new bandages, thanks to a special friend that came over. She first checked Walmart and Walgreens for bandages and then when that proved unsucessful, she came and watched the kids so I could run and get some. I found something that would do at CVS and was greatly relieved to have something just in case. The rest of Thursday found us getting back into a routine. It also found us getting back to fighting and arguing. Like I said, business as usual.

Here is a picture of how she spends a lot of her time. Up in a high chair, where no one can get her. Prior to this experience she didn't know what a toy is. She is quickly learning.

Friday morning Mercedes woke up with more wet  bandages. The swelling on her head was still very pronounced, another reason to call the doctor. So we changed the bandages early in the morning and then called the doctor later in the morning. They told us a little bit of leaking is normal when there was still so much swelling. The swelling is a bunch  of fluid pooled and it needed a place to leave the body. They said if it didn't go down then she wouldn't be able to get her stitches out, cue new worry. But other than that, they weren't all that concerned.

The next problem we ran into was also related to her bandages. The bandages we bought had a sticky plastic backing- not a good combination with a sticky cloth helmet. So the helmet tugged on her bandages when I took it off one day and that didn't make our little princess very happy or her mom.  Luckily, I had a nurse close by, my sister, and we got better bandages purchased and put on and everything was good as new. Its funny though- as I was stressing about these few days while I was out getting new bandages I realized how silly it was to be stressing. Hadn't we been blanketed in prayer? Hadn't everything we needed/asked for been taken care of? Why be anxious, why be stressed? It was this moment that I resolved to not worry about this endeavor any longer. Even if an infection occured, even if we had to change bandages a million times. We were going to be OK. Again, I have all the friends, family, and strangers that were praying so feverently for us to thank for this.  Friday night my sister bought us pizza and it really was a celebration. A celebration for prayers answered and in thanksgiving for how awesome our God is.

Time since has also been business as usual. We had some good friends over on Saturday. Which also saw the beginning of the helmet decorating. We bought a variety of stickers  to choose from and it has been really fun to see her helmet get covered with love. Literally. By the time we are done with her helmet, I doubt there will be a single space left for another sticker. A couple of people have even brought their own stickers from home. Such a fun time! So far I can remember *most* of who the stickers represent. By the end- unless I start writing things down, I definitely won't!  Again, just so thankful for all the love!

We had a service on Sunday night for my nephew/neice which passed away before he/she was able to be born. It was a beautiful service and my neices did such a good job celebrating the life of their sibling.

Monday we got back into the groove of school. Hitting all the goals I had for the day. Including having a mommy's helper come over and get my garage completely organized. Through all of these things Mercedes has just been a champion. Her smile is always quick to the surface. Someone remarked that with her smile you can hardly tell she is even wearing a helmet! I couldn't agree more. She has been a  bright spot for us this past week. A source of comfort and love. We couldn't be more thankful for her. Her swelling is almost completely gone. She hasn't had to have her bandages changed again. We go this Friday to get the stitches removed. Then she will likely wear her helmet till Christmas. She only takes tylenol once or twice a day. And a vitamin once a day (if we remember!) She is about as chill as she has ever been. Like I said. Business as usual. Mercedes is happy, the kids are kids. Tim and I are great. And I am in second place in my fantasy football league.

Life is good.

HOME!!

We have made it home. My heart is so full. I can't even begin to describe the emotions. I will definitely need some time to process this. So much love. So much understanding. So much awesomeness!

I get home to a clean house. Did I say clean? I mean immaculate. They washed my walls and everything. Wow. It is crazy that in the past five days I have cried more tears of joy and gratitude than fear and anxiety. That is all thanks to the love and prayers and support of our family and friends, and heck, even strangers! Thank you.

To the future... Mercedes has to wear her helmet for the next six to eight weeks. We can take it off when she lays down for bed, but that is about it. They said we can have it of when she is just sitting with us in a chair, but they don't know our dogs or our kids, so we will just leave it on whenever she is awake. This just leaves us with the tricky task of decorating it so it isn't so ugly. For that we have come up with an idea. A lot of people sign casts when someone breaks an arm, we decided that we will let people "sign" her helmet with a sticker. If anyone wants to pick out a small sticker and put it on her helmet you are welcome to. We have to approve the sticker of course.We don't want anything innapropriate (for example, Nebraska stickers), unsightly (Nebraska stickers), or vulgar (Nebraska stickers), etc.  We will buy a variety of stickers you can choose from, or you can bring one you have found on your own as long as it meets the above guidelines. If anyone lives far away but still wants a mark on her "cast" you can email me and tell me what you would like and we will see if we have it or feel free to send it in the mail. We are happy to receive visitors. If you are healthy and are in the area and want to come by and see Mercedes feel free. Just get in touch with me and we can make it happen.

So now we just have to manage her pain with tylenol, and give a mulitvitamin with iron for blood supply. There is still some swelling in the back of her head from spending a lot of time on her back, so we are trying to give more tummy time and holding upright to help that. She can't do any crazy playing, but other than that, she is all systems go.

I will update the Pictures blog one more time before too long. I may also do a few more blogs updating how things are going adjusting to home as well. No promises moving forward though. Eventually this blog will go back to being neglected or just my random thoughts. In the meantime it has been nice to have an easy way to put these crazy few days on "paper". 

Who says my helmet is ugly??

I can make anything look good!

Monday, Monday, Monday

I have to admit, I have been looking forward to this Monday, today, for a long time. I saw it as the day we were past all the hiccups and bumps. The day we find out about the rest of our days. As far as Mondays go, it was pretty good. Tim worked from the guest room we were staying in. I am sure that was a bit stressful, but you gotta do what you gotta do. We found out that we are in fact being discharged tomorrow. We went for X-rays. We will get those explained to us tomorrow. We never did see the way her head looked before. This will be interesting. We found out a bit of a timeline as well. They have a discharge nurse who was very helpful. We will get new dressing on her head tomorrow. She will get a helmet that will protect her new (and rather large) soft spot as well as the stitches that will remain for a couple of weeks. She will wear the helmet for about 6-8 weeks. Then we get all our medicines from the Pharmacy and then we get out of here. It is all a bit surreal. As glad as I am to get her home. As much as I am looking forward to a decent night of sleep. As crazy as I miss my kids. I am still a little nervous. Even with knowing full well that things will be ok and she will be fine, the anxiety over the unknown sure knows how to creep in! I am sure once the next 6-8 weeks goes by, we'll look back and see how passing the stress was, until then, I just have to keep reminding myself that it will be ok.
As an added bonus and something going into this Monday I did not expect, VISITORS! We had three different groups of visitors come by today.. The first were cousins of mine from my home town. They were such a joy. It felt great to laugh and have some good company. The next group was a friend from the Church I went to in College and her baby boy. Man was he adorable. They were so sweet to visit. She was part of the surprise care package we received. The last was my brother, wife and two kids. Their daughter was such a great time and some more baby snuggles were just the ticket to a great and fun night. We went out to dinner, which was the second time we have left the hopsital since we got here. It was nice to get away, but it was sure hard to be gone. My sister in law understood that, all too well.

The night ended a bit different than I anticipated. There is a lot of emotion in a place like this and the magnitude kind of hit me all at once. The thing I kept repeating to myself was it is not for me to know. With so much pain and suffering around, it is hard to give thanks. But I will anyway. There is just so much to be thankful for.

I spoke too soon!

Dr. M. came in and determined she is doing too well to be on an intensive floor. So we are headed to the pediatric floor. I have been informed that the nurses there are a little bored right now and are looking forward to playing with a cute baby! Music to my ears!