Monday, April 9, 2012

Days 160- 164

Day 160: Thursday, April 5, 2012- Weight loss. The night before Walker was 3,930 and tonight he is 3,920 grams.

Day 161: Friday, April 6, 2012- Happy 23 week birthday, Walker! Adjusted age: 8 weeks.

Weight loss and the decision to start TPN was made a for sure thing. For sure Walker will come home with it. That means that I will have to be schooled on how to do things and everyday a home nurse will drop off a new bag and switch it out. When they begin to think I can handle things on my own they will only drop the bag off.

So with that news, Walker is expected to be home next week sometime. They have to watch his loose stool and don't expect it to get rock solid, but do expect it to start thickening up. That might take a couple of days. We're thinking the end of the week.

How do we feel about this? My husband is happy and would take him home with anything if it meant he was home. I took it like a straight blow to the face. I want my son home, I want my son to grow, but that doesn't mean I have to be happy about what he is coming home with it. Some people: He's coming home! Right, he is. Obviously these people have no idea on what TPN does for your body. It's horrible on your liver and can cause renal failure. He'll be seen and watched for these and also for kidney stones. The standard time we are looking at is 3-4 months of TPN. That time limit is when they think Walker's intestines will "catch up" and mature. He'll continue to be fed and at home he'll be fed on demand and we're hoping that that time will be shorten. I have to give credit to those with micro-preemie mothers who work. I am so thankful that I have this time with Walker. If Walker would have come home this week, he would have had three doctor appointments, Monday, Wednesday and Friday; with his pediatrician, eye doctor and GI clinic.
Half naked baby!

You know that cheerleading move table top? We learned it in our TIFI years and when he eats I always say, "table top".

Walker started TPN tonight. We also tried a new bottle with him. When he comes home we won't have the same nipples they have and so we are trying to find a bottle he approves of. Avent was not his favorite, which is weird because he LOVES their pacifiers. 

Walker weighed 3,935 grams.

Day 162: Saturday, April 7, 2012- I hate his nurse today. She is just plain awful. We've had her before when walker was going to extubate back in the day. He doesn't like her and it showed. I'm black listing her tonight.

Today we tried Dr. Brown's bottles and we have a winner! He took that bottle like a champ. Good thing too, because we had already bought a couple when first finding out we were pregnant.

Walker's poop has started to change consistency which is a good thing. They are wanting it to not be so watery

Walker is weighing in at 3,955 grams. He gained 20 grams and is 8 pounds 11 ounces.

Day 163: Sunday, April 8, 2012- Hoppy Easter!
Happy Easter from Mommy and her Bunny!

"I'm not real sure about these bunny ears Mommy."

"Are you allowing this Daddy?"

Cutest little bunny butt ever!

Walker's Easter basket from the Easter Bunny who hops by Walker's house.
Walker got Leap Frog's MyPal Scout. He is too fun! You can program the green stuffed animal in the back to say your child's name, favorite color, favorite snack and favorite animal. You can also select songs from their song list. The funny thing is that it says Walker's name like, wal-KER! Emphasizes on the KER and says it really loud. He also got car seat toys. We tried hanging them from his links going across his crib, per PT's suggestion, but it didn't work out too well. He also got his favorite pacis in two new colors Mommy searched for. I found these three cardboard books in the $1 section of Target. The Berestein Bear's is the best. It actually IS a story. The other two are snippets. It feels like they took out huge chunks. He also go Carter's "Somebunny Loves Me" outfit. He looked pretty darn adorable. He was such a good baby that the Bunny hopped over to Nana and Papa's and left a basket there also.

So next week we begin the process of getting Walker out of there! I have to do CPR training, car seat education, learn to make bottles with the dietician, and learn all about TPN and how to administer it and how the machines work.

I find some of the things quite humorous. Car seat education consists of an PT or OT following you out to your car and making sure you know how to properly place the car seat into the base and also to make sure you have properly installed the base. Then, they make you place your baby in the car seat to make sure you know the proper way to secure your baby. Now, the part I find humorous about this is that tons of people leave the hospital 24-48 hours after they have their baby. Do THEY have to go through car seat education? NO! They wheel you out and on you go. I look at people's pictures on Facebook of their children in car seats and I see children, fasten in their car seat, incorrect. But because they have full term babies, clearly they are more competent in child rearing than a person with a preemie. Feel my sarcasm?

Walker gained 20 more grams tonight. He's at 3,975 grams which is 8 pounds 12 ounces.  He is also 53.5 centimeters, which is 21 inches long!

Day 164: Monday, April 9, 2012- CPR training was a joke. It lasted about an hour only because one dad had to take a phone call and we waited on him. That lady read things off a piece of paper. But I did meet a mom who went full term and didn't realize she had a placenta abruption. Crazy stuff there but he baby girl is doing very well and she's on her way home!
My CPR test dummy.

Wednesday I have car seat education. Today was a shitty day all around. I get there only to be asked if I've stopped pumping. The milk bank didn't call me to let me know that yesterday he ran out of breastmilk. Someone put it in the orders that I had stopped and that he was a full formula baby, which is WRONG! I worked hard for that damn milk and I have three freezers full. I was livid and still am when I think about it. Dumb ass techs.

They can't give a time estimate only at least another week. I love Walker and when I'm with him I forget about it, while until the machines go off for no reason, but I'm seriously hating that place. I'm sick of driving, I'm sick of the nurses and doctors and people that are just plain awful. I want my baby home where I can hold him all day and night and never get any sleep and all you hear is crying in my house.

Walker can't go home with the PICC line that is in his leg. He needs a more permanent line, per GI doctors orders. The choices are one that IR can put in or one that has to be surgically implanted and he'll have to go under anesthesia and all that stuff.  We're praying for the minimally invasive one.

Today, a couple from CPR were getting their car seat education and getting discharged all in one day. Hurt like a bitch to see them smiling and watch them place their baby in the car seat. I know our day is coming, but it feels like we will be there forever. Crossing our fingers, toes and eyes that Walker will be home before his 6 month birthday.

I've said it once, I'll say it a time or two more, but it's not fair. There are people out there who do awful things to their perfectly healthy children and then people like us. Who love our child dearly and to the moon and back a couple of times.

Walker weight tonight is 4,040 grams. He is 8 pounds 14 ounces. 

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