3 Months

Chase turned 3 months old on the 19th. WOAH (insert Joey Lawrence here)3 months? Really? Where did the past 3 go? Hrumph....

Anyways. I tried so so hard to do cute pictures of him and it just was not happening. I tried to iron on a "bowtie" that said 3 months onto a onesie, it wouldn't transfer. So I ghetto-ly wrote 3 months on the onesie. Chase did not want to participate either. BOO!!!

I got this picture of him the next day:

It works.... I made this:

What a difference 3 months make.

Bonus: He keeps trying to laugh. He doesn't quite have it down yet, but I will post the video on YouTube soon.

That's all for an update I have. I will leave you with one more picture which is my new favorite:

^_^

Some light in our tunnel!

We had our revision postop yesterday. Dr. B said that his ventricles were very small so she decreased his pressure setting from 0.5 (the highest) to 1.0. This means his shunt is working properly. This also makes me think that it hasn't been working properly since November 18th when we had our first overnight stay.

I've come to realized that a lot of people don't really know what Spina Bifida is, and the sad part is that it is more common than it is acknowledged.

So my faithful readers I encourage you to to check out the following sites:

Spina Bifida Association

Spina Bifida Association of Illinois

and since Chase has hydrocephalus:

Hydrocephalus Association

Hydrocephalus Kids

Spread the word. Help others know what Spina Bifida and Hydrocephalus is!

And here is a pic of Chase from this morning:

Did we meet our deductable for 2012?

I'm pretty sure we did. Chase had his first revision yesterday. The catheter that went from his ventricles to his shunt device/pump was clogged and he was bypassing his CSF through his burr hole, which in turn was collecting around his shunt site. His neurosurgeon decided in clinic Tuesday that it needed to be done. Bryan took him down Wednesday for the procedure and stayed with him overnight. He is home and doing well and we're hanging out together tomorrow. :)

He will be starting his PT and DT through Early Intervention on Tuesday. I'm actually really excited for him to be starting, although, I think I double booked the therapists...

He will go back to see the neurosurgeon on the 17th to check how he is doing from surgery.

That's all I've got for now.

Here ya go:

-e

Happy New Year!!

It's going to be a fun year, I can already tell. We're hoping for no hospital stays this year, so this means we cannot have any shunt malfunctions!!!

We did have an overnight stay on Christmas Eve. Chase's shunt site was quite swollen. They observed him overnight and said there are no signs of it malfunctioning. He had a x-ray and CT and both showed no signs of obstruction. The Doctor had said that some fluid may have leaked out from the hole and collected around the shunt. Since there was no sign of a malfunction, they didn't seem concerned and they sent us home.

Santa left some presents at the hospital for Chase since he didn't know if we would be back in time for Christmas. Chase got some ornaments, some books and a Beanie Baby Crab. Santa also left a lot of presents in Chase's room, but was unable to wrap them :)

We have our first Spina Bifida Clinic on January 3rd. We will see all of his specialists that day which will include his neurosurgeon, his urologist and his orthopedic. This will be the first time we see his orthopedic specialist and I'm interested to see what she has to say about his legs and feet and movement of them.

I think that's all I have for an update for now. I'll post an update after his appointment on Tuesday...

-e

A month later...

Sorry. It's been over a month since my last post. Sorry to keep you hanging. It turned out that they let Chase go home the next day, November 15th. They taught us how to change is wound dressings and administer his antibiotics through his PICC line. And he was home...until November 18th. On November 18th we went in for an MRV (and MRI of his ventricles) I left Children's and as soon as I got off of I94, I got a phone call that we needed to bring him back because his ventricles were enlarged and they wanted to observe him in case he was having a shunt malfunction. So back we went. They let us go the next morning because his vitals didn't show signs of him having a malfunction. So, we had him home for his first Thanksgiving. :) The Friday after Thanksgiving, we had a repeat MRV, which showed no changes from the week before and the took out his PICC line since his back was healing so awesomely. He also had his first visit with his pediatrician. He was 9lbs 1oz and 21 1/4 inches long. I went back to work on December 7th :( It was quite hard since I didn't have a whole lot of time with him, but I know he is in great hands. Well that's all for my update. He has his 2 month checkup on December 27th and then he sees all of his Spina Bifida doctors on January 3rd. Here is hoping everyone has a great holiday! -e

Still at CMH

I talked to the nurse this morning. She mentioned that Chase's wound looks great and that the neurosurgeon want's him to be there until his antibiotics are finished which will be 11/18 and that she wants his wound to be monitored for a couple days after that. I'm guessing the earliest he will come home will be on 11/21, and that's the best case scenario. We will have to do wound care at home which we should be learning about tonight. This will leave 13 days until I go back to work. Not a lot of time.

I feel so shafted with the whole experience. I worried the second half of my pregnancy. I was induced. It took 27 hours for me to deliver. The myelomeningocele was never found on any of the multiple studies I had done. Now, Chase has spent 25 of his 26 days of life in a hospital in Chicago, and I haven't been able to really experience life as a mom. It all defiantly turns me off to the idea of having another child.

As bad as it sounds, I can't spend all day there with him. If I take the train in I get to the hospital around 830am, by the time B gets there it's already around 7pm. That's roughly 11 hours later. By that time, I'm spent, both physically and emotionally. We usually spend about 3 more hours together with Chase, so B gets a chance to visit. This totals to about 14 hours. So by the time we leave and get home it's 1130pm, and then I have to pump, so I'm going to be sometime after midnight, to wake up and be ready by 6 for B to take me to the train station...it's exhausting. I can't do it and it's in Chase's and my best interest not to do things this way, as I become an angry, sad, emotional, crying mess.

On top of long days as I described, I can only stare at him for so long. It's not like I can hold him normally, dress him, bathe him, sit him in a boppy, etc. He has to lay, tummy down, on a sponge mat. He's hooked up to a monitor and when his sensors fall off (as they always do)the alarm goes off. It's quite a hassle and it's quite frustrating. I just can't do it all day long. (Plus, the cafeteria food sucks and I am SO sick of eating McDonald's)

I'm about ready to just go back to work. This is where I know I could never be a stay at home wife/mom. Part time, yes. Full time, I would pull my hair out.

Well. I'm thinking I'm done with the pity party post for now. Here is where I leave you with my favorite pic I have (so far):

-e

Number 4

As I was getting ready to leave for the hospital last night, the hospital called. They said Chase's wound was leaking spinal fluid and they needed to take him to surgery to explore the wound to find out where the fluid was coming from. They had also mentioned that he may need a drain in his back or the possibility of needing his internal drain shut off and an external drain placed again. Above all, he was not coming home.

On our way to the hospital, the neurosurgeon called and said it was best to take him now since there was an opening and she didn't feel comfortable waiting. So, like the first time he had surgery, I didn't get to see him before he went.

When we got to the hospital, we went to the surgical waiting room. We were only there for about 10 minutes when the surgeon came to talk to us. She said that it was old spinal fluid that was retained in the wound and not leaking from the dura mater, which was very good news. He did not require any drains, but they left the wound open, which will have wet to dry dressing changes and will need 7-10 days of antibiotics. The downside is that he will have to stay in the hospital until the round of antibiotics is done (insert sad face with tears).

So, this is where we are at with things. As always I will update if/when things change.

Like last time, I will leave you with this:

-e