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

20 days left...

Unless I get induced next week. :)

My appointment on Monday was informative. I had a lot of questions that got answered. The nurse who did my NST said he did well and was an over acheiver and that if I wasn't required to sit there a whole 20 minutes, I would have been done with in the first 5. My fluid level was good too. We even got this awesome pic:

He usually turns his head so we can't see him. To be honest, I was so afraid that he would have facial abnormalities (don't judge), so seeing this image of him and his perfect little face, makes me want him here even more... I can wait until November though :)

I had also asked if he could be microcephalic. They said no. His head is small because of the CH, but not grossly small as seen in microcephaly cases. WHEW! That was a huge worry that went away.

Well that's all for an update. Here are my stats:

How far along are you: 37 weeks 1 day FULL TERM BABY!!

How big is baby: Per 10/3 visit: 5 pounds and two weeks behind.

Stretch marks: No new ones

Sleep: Not much. I've been up peeing more.

How are you feeling physically: Pretty good. My back and hips hurt. My feet are swollen. No more heels :'-(

How are you feeling emotionally: Anxious.

Best moment of the week: The 3D pic of Chase

Movement: He's a busy boy.

Cravings: Chocolate

Labor signs: Aparently, I've been having contractions? That's what the NST nurse said. I'm also 1-2 cm dialated

Missing anything: My prepregnancy clothes

Looking forward to: Still trying to get that house clean!

Random thoughts: If he has to come Monday, I'm ok with that. I would prefer him to be late, but I will accept an early baby.

-e

Should probably update

Yeah, I'm bad at this game, lol. I should probably type an update before my appointment tomorrow.

At last Monday's appointment, Chase was measured via ultrasound again and he in the 19th percentile of growth, which is not good. He has not grown much in 3 weeks. when they measure him, the measure his head twice, his femur and his abdomen and they find the percentile by an average of those measurements. Since his head is smaller due to his small cerebellum, the measurements of his head bring the rest of his measurements down. They say he is 5 pounds and 2 weeks behind.

We will have another growth scan on October 17th. If there is not substantial growth within two weeks, I will be induced and Chase will be here early. I'm not too excited about this because I was really hoping to be off work for Christmas. :-/

This also means that there is so much to do in so little time. I HAVE to get this house in order. It doesn't matter if Chase won't care. I CARE. He deserves to come home to a clean house. It's just my lack of motivation that stands in my way :(

Tomorrow (10/10) is just a weekly check up. We'll be asking a lot of questions pertaining to the 17th in the event I am induced. So, if I can remember, I will update on that.

But here is this special update :)

My stats:

How far along are you: 36 weeks 6 days

How big is baby: We were told last week he was 5 pounds and two weeks behind.

Stretch marks: No new ones..thank goodness

Sleep: Yes please.

How are you feeling physically: Tired and hungry and hungry and tired. And unmotivated. And hungry

How are you feeling emotionally: Anxious, scared, unprepared, nervous, apprehensive.

Best moment of the week: A new girl started on Thursday and she has caught on very quickly! I'm not so worried if I have to leave work early.

Movement: He has been moving a lot more the past week. It's almost like there is an alien in my tummy!

Cravings: Everything that has carbs and coffee. I've caved and had a few cups this week...(call the pregnancy police)

Labor signs: I don't think I've had any?

Missing anything: Sleep. Food. Un-swollen feet

Looking forward to: Having a clean house.

Random thoughts: Please Chase grow! Mommy is not ready for you yet!!!

-e