Monday, April 16, 2012

Days 165-171

Day 165: Tuesday, April 10, 2012- Today we found out that the line they want is called a broviac, which is surgically implanted. Shucks! We didn't want that one but there are a lot of things we didn't want.

We want Dr. Naik to preform the surgery since she has followed Walker since day 5 of his stay at TCH. Once she finds time, they'll need to watch the placement and then after a couple of days, we'll go home! 

Today we found out that the TPN and Omegaven that Walker will come home on, has one company in Texas. They only take patients who have Medicaid. Private insurance does NOT reimburse them. Walker does not qualify for Medicaid. Our case manager worked something out with the company and they agreed to take Walker on a patient! YES!! Thank God!
"Snuggle wuggle was a bear. Snuggle wuggle had no hair..."
 Walker was also seen by the developmental clinic that will follow him for a couple of years. His adjusted age is 8 weeks and he's falling into his adjusted age milestones pretty well! The doctors were actually very impressed with what he can do. They said for everything that he has been through they expected him to be pretty behind. They will see him in 6 months in their clinic and reassess. They are also in contact with ECI (early childhood intervention, finally my degree is coming in handy!).

Walker's weigh tonight is 4,125 grams. He's 9 pounds 1 ounce!

Day 166: Wednesday, April 11, 2012- Car seat education was a breeze and I'm a very well prepare Mommy! DUH! Here Walker is in his car seat. He was SO happy!
He had his eye exam today and we don't have to be back for a whole month! Awesome!

Walker had PT and the same thing, he needs more tummy time! He doesn't get any real tummy time, so we can't wait to get him home.

Papa and Nana showed up for a visit and Papa FINALLY held Walker. He's a little scared of the machines but with Walker swaddle he couldn't wait to hold him.
"Where's my paci?"
"That's okay. I got my thumb!"
Today we had Nurse Sarena and she is a sweetheart! We love her! Too bad she is off for 5 days and won't be back until Tuesday. Dr. Naik hasn't gotten back with the team on a date for his surgery. I think they need 48 hours to make sure that it is correctly in place and that he is gaining the appropriate amount of weight.

Tomorrow is a busy day for me. The group that will deliver Walker's TPN and Omegaven is meeting to teach me how to work the pump and fix everything that he will need. Once this is done, we will have completed all we need to take our baby home. Hurry up Dr. Naik! I want to set a date! I also have to meet up with a financial counselor to get things situated for the home delivery. The GI clinic has decided, for right now, that the TPN and Omegaven should run for 20 hours out of the day. So, today we practiced turning everything off from noon to 4 pm. Since summer is coming and it's too dang hot in Texas during those times, we might switch to something that would allow Walker to have a great summer! 

Walker's weight tonight is 4,155 grams. That's 9 pounds 2 ounces.

Day 167: Thursday, April 12, 2012- Walker passed his hearing test! YAY! We knew he could hear, but having proof makes me feel better. After you have meningitis you have to have a repeat hearing screen.

Today the lady from the company that will deliver TPN and Omegaven came to show me how to use the stuff. It was pretty short and simple and just a small orientation. The day we get discharge a home nurse will be at our house to get us situated and hooked up.

Tonight we watched as a team of people tried to save a 30 weeker. It was very sad. We held Walker extra tight tonight and told him how blessed we were that God gave him to us. You ladies who complain about being miserable and huge at 40 weeks pregnant, you need to think about the alternative, not being pregnant the expected time to grow a healthy baby.

Day 168: Friday, April 13, 2012- Happy 24 week birthday, Walker! Adjusted age: 9 weeks
We celebrated his birthday with a small surgery. He had his broviac implanted in his right neck and also his circumcision.  We actually went before the scheduled time! Something that doesn't always happened.

Right before he went back.

How many pictures do I have like this now? Oh yeah, three!
We thought we would shop up and he would look pretty bad, it's what we are used to.  We went back to the PACU and what did we see? A happy baby kicking his legs and moving all over the place!

He did amazing and it was fast. Dr. Naik wants to see him in her office in a couple of weeks. She can't believe how big he has gotten.

Yesterday, they said that Walker failed his car seat test in the last minute because his heart rate went down to 87, but today the NP said that she counts that as passed because he was sleeping and he's a term baby and at his age, that was okay. They mainly look at saturation levels and his were fine.

Walker is weighing in at 4,235 grams. That's 9 pounds 5 ounces!

Day 169: Saturday, April 14, 2012- Doing great! I've been biting the bullet and not bringing 0-3 months clothes for Walker, but tonight Nurse Esther said, "He's too big for these now". Ouch! Right in the gut, Nurse Esther! I'm in denial my baby is growing up.

Day 170: Sunday, April 15, 2012- We have spent all day at the house. I'm homesick for my baby so bad tonight. But I know it'll only be a few more days and he'll be home. I have to have things just perfect for him.

I haven't taken many pictures these last couple of days but here's one of his room. I'm so excited! They are finally up!

Walker's weight tonight is 4,250 grams. 9 pounds 6 ounces! His length is 54.1 centimeters which is 21.4 inches.

Day 171: Monday, April 16, 2012-What a day! The papers have been written! He's coming home!
I learned how to make bottles today. I had his prescriptions filled. The last little bits have been done! Tomorrow our baby will be coming home!

He's so funny!

We are SO excited! It feels like Christmas Eve night and we're little kids. We went out to eat at one of my early pregnancy cravings and really didn't say anything. There was this one point in triage when we knew I was 2 centimeters dilated and they were about to admit me, and we both started crying. We sat in the hospital bed together and cried and said "no matter what happens, he's our son".

He's really not crying, crying. He's getting angry.

Dr. Premkamur stopped by today. That was tough to swallow down. That man saved our son's life, no doubt. He is an amazing doctor, he's done amazing things and will continue to be an asset to the TCH. I can't believe that this incredible man will not be a part of our lives anymore. He did ask if we had a care bridge page so he could keep up with Walker and I gave him the blog address. So Dr. P if you are reading this, I know we've said it many times but thank you! Thank you for all you did. You paved the way for the doctors following you and you are the reason we are able to take our son home.
R lifts him up like this and says "Simba". Walker loves it!

I hate goodbyes, remember? Hate them!

Dr. Dariya stopped by too. He is the fellow that was on Dr. P's team. He's an amazing doctor who will make an incredible neonatologist one day. He has everything that you would want in a doctor: intelligence, bedside manner and he's friendly.
My last night in a hospital crib.

"Tomorrow I'll be home!"

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