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

22 Days

Chase is 22 days old today. He has 3 surgeries so far. He now has an internal shunt to regulate his ventricles and the flow of his spinal fluid. The shunt is programmable from the outside of his head. We brought him home Monday night but he went back on Tuesday night/Wednesday morning for some wound complications. We're expecting to bring him home tonight as long as things are ok with his wound.

The neurosurgery team is very pleased with the movement in his legs and he was sent home with out having to catheterize him every 6 hours. He will have some bladder tests on Tuesday along with an MRI.

That's all I have for now. I will leave you with this picture:

-e

Coping

I've taken the morning off the last two days to try to catch up on sleep and maybe get the house back in order. I feel like a bad mother, but physically and emotionally I needed the break. It's hard to go from one extreme to another. We had 14 weeks to understand and plan and research and network anything and everything we could about Cerebellar Hypoplasia and in one day, that gets thrown out the window. I had time to cope with what was going to be and now I have to go back and figure out what is going on. I have to research and understand and cope and accept all of this new information. The difference is it is here and in my face and I don't have that time to fully understand before Chase comes, because he is already here. I don't understand why this wasn't found. I had the quad screen blood tests, the ultrasound that checks his neck, an amniocentesis, 2 fetal MRI's and multiple ultrasounds. How was this missed? I should have been able to prepare for this instead I was prepared for a totally different diagnosis. I didn't get to hold my son after he was born. I still haven't actually held him. He has to lay face down on a mat and his head can't be elevated. I didn't get that skin to skin contact people talk about that is so important. I feel it really and truly is. I feel it deep in my heart. So what now? Now I will google, and worry and learn and cope and hope he comes home soon. He will need a shunt placed. When this will happen, I don't know. I didn't ask. It was too much to take in and the first time I was told I was working on 4 hours of sleep and I was all alone. I've read that it could have been a lack of folic acid during pregnancy. I took the vitamins. I started taking them in September. I even chose cereal with folic acid in it. Why my baby? What about the "perfect" babies born on "I didn't know I was pregnant" who's mothers didn't receive any prenatal care. What about the teen mom's who have perfect babies. I followed the rules. I didn't eat lunch meat and I cut out my caffeine. Why me? Why my baby? He is so so cute. Why does he have to have this. It's not fair to him. 8 days old and has already had 2 surgeries. It breaks my heart. -e

Back to the OR

They took Chase back to the OR today. He is having an external shunt placed and they are washing out his wound. The shunt is being placed to prevent him from becoming hydrocephalic. The ventricles in his brain are enlarged and his wound is draining. Placing the shunt will help with draining the fluid.

No mother should have to go through this. Any of this. Anything like this. It's a horrible feeling, and I'm sure no matter what age a child is, the feelings are just the same.

I'm not too worried about the procedure. Chase is my superman. He will be just fine.

My biggest hope at the moment is that they can take his breathing tube out right away so he can stay in a normal room. I don't like the NICU.

Later

-e
-e

Day 3

Chase has been at Children's Memorial Hospital for 3 days. It gets easier day by day but yet it's still so hard.

The surgeon took his dressing off this morning so you can actually see his stitches. They're painful to look at. We're told he's not in a lot of pain. He has an order for Morphine, but seems to do just fine with only Tylenol.

We're staying a few blocks away from the hospital at a Ronald McDonald house. Its nice. I still feel awkward there, but it gets better. B will go back to work Monday but sleep at the house at night so I'm not alone.

I wish I could speed up time so he could come home. I love being in Chicago, but not under circumstances like this.

He still hasn't peed on his own. We/they are hoping it's from a lack of fluid intake and not a complication of surgery. He hasn't eaten since he hasn't really woken up from surgery. They don't want to really force him to eat because they don't want him to choke. He did get about 5ml of formula and he may get a ng tube so he can get some nutrients until he's ready to eat on his own.

I'll update as I can.

-e

He's here, but....

Chase was born Wednesday at 2:03am. He was 5lbs 13oz and about 20 inches long.
It turns out, Chase was born with a myelomeningocele which is a form of Spina Bifida. He was transferred to Children's in Chicago Wednesday afternoon and had surgery to close the defect yesterday. His leg movement after surgery has been good and we're waiting to make sure he is peeing on his own. He has been sleeping a lot because of his surgery, and has not eaten yet so this is hopefully most likely why he hasn't peed yet. We're hoping that he'll be home in a week or two. He's stong and a fighter so we are pretty confidant that this will hold true. We don't have lots of answers, so we will update as much as we can with what we learn.
-e