Monday, April 30, 2012

Walker is 6 months and his first ER visit

"Mommy and me at Adam's 1st birthday party. I had such a good time!"
 So, R lost the 6 month sticker so I don't have one. I was upset for a week about it.

He's doing so well at home. Remember that weird eye thing I was talking about? Well I had read online that it could be premature optical nerves and I'm pretty sure that is what it was. Every time his eyes would go "crazy", it seemed like he was trying to look up. Now he is able to look up and the craziness has stopped. He does cross his eyes when he's trying to focus on himself in a bathroom mirror. I'm not concerned about that and think it's funny. He self corrects himself too.

He's sleeping through the night. He goes down anywhere from 8 or 9 and wakes up between 7 and 8. He takes 6-8 bottles a day, 80cc. His TPN/Omegaven is set for 16 hours a day. We turn the pumps on at 6pm and it goes off at 10am the next morning. So those are our free times with a free range baby. 

His neck control is amazing. He likes to sit in my lap and work on his core, but you put that baby on the floor for tummy time and you would think we were torturing him. He HATES it! But sorry Charlie, you have to do it!

I'm a tough Momma, no doubt. I'm pretty by the book but do things at my own time. I'm not concerned with Walker hitting milestones because if he's going to achieve them, he will and if he doesn't it doesn't mean we will love him less. He has to work harder and we know that and he'll do things at a slower pace. Even our pediatrician said, don't worry about things right now. He'll catch up.

Our first ER visit, post leaving the NICU was interesting. Every thing was wonderful and Walker was doing fine all day. I changed an explosive poopy diaper and I'm looking at it thinking how his circumcision is completely healed now, and then a couple hours later changed a pee one. And that's when we saw it. Walker's foreskin on his penis was swollen and black and purple. Yeah, cue what-the-hell-just-happened-moment.

We took him to TCH's ER and everyone is dumbfounded. They had to ask if he's been dropped or had any injury to his genital areas. Um, no. I hate questions like that but I know they have to ask them. We were seen by the ER doctor, urology and surgeon and it's a broken blood vessel that burst and then started to clot.

So, what do we do about? They put numbing cream on his area and then injected more numbing stuff for comfort. Then, with the HUGEST needle known to baby-kind, he stuck the penis in numerous areas. Like dug and poked and prodded. And then squeezed the penis area to release the blood. Blood, blood, everywhere! Walker of course took it like a champ and just whimpered a little in the beginning. I know it was numb but come on, you would feel something. They recommended Tylenol at home but he's only needed it once. He's so strong.

And lastly, I love my baby. Like really, really, deeply, wholeheartedly, LOVE him. We know how blessed we are. But having him home and the reality of it, is so much more that it would make anyone mushy.

We have three doctor appointments this week. Last night at the ER Walker weighed 11 pounds! He's growing and gaining and happy!

Thursday, April 26, 2012

It's your turn!

My husband has been fantastic, he really has. But he agreed to work overtime this weekend and I'm not too thrilled about it.

So tonight I handed over the baby and told him to do ALL the things that I do when he gets home from work. Why? Because.
1. He needs to learn
2. He's his child too.

Typically, when R gets home he has it pretty easy. I hand over the baby for about 30 minutes so I can do some things like make TPN and Omegaven and get everything started, cook dinner, wash bottles, make bottles for the next day, pick up Walker's and my mess from the day, and start Walker's laundry. It's a lot.

R always has an opinion about how to do TPN, when he hasn't even been trained. Now, I'm fine with criticism. But when you don't know what the hell you are talking about and you're trying to tell ME how to do it, then there's going to be a problem.

So I handed Walker over tonight and told R, "It's your turn". I'll update how that went.
Update: I made the bottle, gave Walker his medicines and did his laundry. I couldn't help it.

Yesterday, we went to Kemah to celebrate big cousin Adam's 1st birthday. We can't wait for his birthday party this weekend. Here are some pictures of the cousins.
Nana and the boys. Adam is 6 months older than Walker. He doesn't look that little next to his giant cousin, does he?

 He LOVES his car seat and staring at that cute baby he sees in the mirror!
 I have a very great friend M that works for a Texas Senator. She surprised us with a Texas flag that was flown over the State Capitol the day Walker came home! It is the most special, awesomeness gift ever! We were so happy and surprised and grateful. Thank you M!
So, last weekend and earlier this week Walker stopped taking my hard earned breast milk. I have three freezers full, so you can imagine the heart ache. It doesn't hurt that he likes formula, it hurts all those sleepless nights. Oh well, my baby is eating, gaining weight and is happy. I'm not sure if it was the adjustment period of getting used to being at home but tonight we are trying to reintroduce breast milk mixed with Elecare. We've been giving him Elecare, a special type of formula. He needs more calories. Anyways, hopefully he likes it.
UPDATE: Walker was NOT having the breast milk. It's either Lipase or lactose intolerant, I'm convinced. I'm thinking Lipase. Poor guy. Cried and cried while trying to feed him and then threw up. Never again!

I forgot to mention that the dietician decided to lower his TPN/Omegaven to 16 hours! Woo hoo! We see her next Friday and I'm anxious to see what she says. And also to see if he's gained weight. He feels heavy and is filling out his clothes more.
 He is so precious! I LOVE getting to stay home with him and he's a very easy baby. The only torture I make him endure is tummy time. Our little guy hates it! But you know what, what baby enjoys it? All with time, all with time.

Tuesday, April 24, 2012

Pictures of our 1st week home!

We had an appointment with his GI doctor on Friday. We are supposed to go with her scale since they will be following Walker closely and regularly. He weighed 10 pounds 4 ounces on their scale. We meet with the dietician again in 10 days and he'll be weighed again. Hopefully, crossing fingers, we will be able to cut down on the time his TPN is ran throughout the day.  These pictures are from that day.
"Are we at the stinkin' hospital again?"

"Chilling in my stroller"

Hey there happy blurry guy!

"My dad is SO funny!"

"Do it again Dad!"

"Stop it! You're so funny!"

"Hello lady!" A lady walked in and this is the face she got from Walker!

 Texas weather is the best. It's been a good 80 degrees for a week. Then BAM! A day of rain and cool weather blew in. Walker has outgrown newborn sized clothes and when we went shopping for 0-3 months, we bought shorts. So I had to stuff his chubby body into newborn clothes. This is what he thought of it.
"Are you serious Mom?"
 We had two birthday parties in one day. One, that we weren't invited to but seeing as it was family, we showed up. Don't even get me started on that. The second party was for a sweet little 1 year old girl. We decided to put Walker in the Baby Bjorn since it is the easiest way to lug him around.
Dad practicing.
 For the record, Walker loved it!
Crashed after his busy day of birthday parties.

Chub a wubba!
These next pictures are of Walker watching the dogs walking around. 
"You see that Momma?"

"What are those things?"

"Get it away!"

"Get it away!!!"


Thursday, April 19, 2012

What are you doing now that he's home?

Good question! We have two doctor appointments this week, back to back Thursday and Friday. Today we went to the pediatrician's office for the first time. That was fun! He had a wrap sheet to go over and kept asking the same questions. Hey, it's a lot to take in. 5 1/2 months is a long time to be in a hospital. Thankfully, he is affiliated with the hospital and can access Walker's history through the computer system. Makes things SO much easier! AND, his specialist can email him within the system to keep him updated. Walker was weighed today and he is 9 pounds 12 ounces and 22 inches long! He's gained 4 ounces and grown a half inch since being home! We go back in two weeks for a weight check and to update on what the GI clinic says.

 Tomorrow we see Dr. Carter in the GI clinic, which also means we are back at the hospital. We don't expect her to lower the time on TPN/Omegaven just yet. We don't really know what to expect or how often we will have to see her. I'm guessing every other week, but we'll find out soon. Hopefully we can start upping his bottle feeds. Even Dr. Anderson, his pediatrician, is hoping that too.

We've been hanging out at the house. R is taking the 3 am feedings and we're hoping he'll continue that when he goes back to work. I do have to admit that last night we let Walker make his own schedule and he ate at 11:30 and slept until 4 and then woke back up at 8. He has to eat 8 bottles a day, so we have to wake him and feed.

 He loves his swing. He sleeps in our room in the pack n' play napper and honestly, he seems to really love it. When he's tired he needs his space. He watches the dogs and cries when they block the sunlight from the window. He loves to be held and we happily oblige! He loves his car seat and the car. He loves sunlight and being outside.

He does not, I repeat, DOES NOT like to be held cradle style! He likes to be up on your shoulder looking around. When he eats he needs it to be quiet. He can feed with the TV on but as far as loud conversations, he doesn't like it. Hey, he's still learning people. It's funny because in the hospital they were so worried about his pooping, dumping as they call it. Meaning that he would eat and it wasn't absorbing and simply dumping out of his body. Not happening at home! They were concern about how many diapers a day he was going through also. Here, he poops a good one time a day. 

That is all!

Wednesday, April 18, 2012

We're HOME!

After 172 days in the NICU level 3, we are finally home. And where we belong I might add. Is this real life? If I'm dreaming don't wake me up. This is just too good!

We can not say thank you enough to all of you who have followed us with love down our journey to getting Walker home. But stick around because the real journey has just begun. Walker can't wait to meet all of you!

Our first night as a family of three, in our own home, is coming to an end. My eyes are heavy as I'm listening to the Baby Einstein soother that is by Walker's pack n' play in our room.

He is adjusting well. He never wants to be put down and we don't want to put him down either.

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!"