Friday, January 20, 2012

Days 80-84

Day 80: Monday, January 16, 2012- Last night I couldn't sleep so I cleaned the living room. I was sitting on the couch about midnight and decided to call to get an update. I started to feel uneasy while the phone was ringing. When his nurse, Cheryl came on the line, she told me that Walker was having a lot A's & B's and the doctors were at the bedside observing him. She said that if anything changed that she would call. I went to lay in bed and all these bad thoughts went through my head.

Walker ended caffeine on the 13th. He was on caffeine to remind his body to breath. All preemies that are small like Walker are usually on it. But he needs to be off so his body can learn on it's on. He still  has the help of a little oxygen from the nasal cannula. I will be really sad if he has to go back on CPAP for selfish reasons; like not being able to kiss all over his face and play with his hair.

And....he's on CPAP. But only for a couple of days. They ran a blood test and Walker's blood was very low. Just in case you have no idea on how your body works, you need blood to carry oxygen. So put two and two together and that's why he was having trouble breathing.

I left early today and have had a horrible headache all day. My normal remedies have not been working and honestly, I think this is the first horrible migraine that I've had since giving birth. That is a miracle for me!

 Walker is weighing in at 4 pounds 4 ounces, 1940 grams. He's almost 2 kilos! That's such a great news!

Day 81: Tuesday, January 17, 2012- Happy 4th Birthday to Walker's cousin Isabella!

That migraine really wiped me out. We didn't go tonight because I'm just exhausted. I've been laying on the couch and had to drag myself off the couch to pump.

Thankfully, Nurse Esther has been on these past two nights. We LOVE her! I called for an update and she left a note because she knew I would call and want to know his weight.

The blood has helped Walker. Seems like it was just what he needed. Hopefully CPAP will be off in a couple of days. Baby needed a break and that's fine.

Tonight Walker is weighing in at 1950, which brings up to 4 pounds 5 ounces.



Day 82: Wednesday, January 18, 2012- So Walker is off of CPAP and is on room air. No breathing support! We are just trying out and seeing how he does. He looks super cute!

Today Nurse Courtney told me I could bring some blankets to decorate Walker's bed and also some clothes that button up the front. I'm really excited! They might have to leave the arm with the PICC line hanging out the top. Whatever! I'll get to see my baby in clothes!

Krista came to see Walker today and took some fantastic pictures. I'll have to post them when she emails them to me.

UPDATED: Here are Krista's pictures! They turned out really good!

"Um, may I ask who you are?"

"YAY! I have a visitor!"

Cat nap time!

Rockin' the hawk!

"I'm so sorry, but I'm so sleepy all the sudden"

"Come see me again, Mrs. Krista!"


I also was there when Dr. Naik (the surgeon) came by and brought up surgery. She said that they would go in one time and connect and remove the blockage. That made me very happy. Then she said that she wants to wait until Walker is 3 kilos. That would mean Walker would need to be 6 pounds and 10 ounces.

Dr. Rhee came by and said he checked Walker's growth chart and he is averaging 500 grams every two weeks. So you do the math. That's four more weeks. So, for four weeks I would be watching my baby just gaining weight. That's it. She did say that if his liver started to show signs of regression, that she would go in sooner. That's unacceptable to me and we will be discussing this.

I don't feel like Dr. Rhee and Dr. Naik are on the same page. There are other instances, which I won't get into, that they are totally different pages. And after surgery on December 14th, Dr. Naik said she would go back when he was 2 kilos OR 6-8 weeks. Then two weeks ago I had the nurse ask what we were waiting on and she said 2.5 kilos. And now today she says 3 kilos.

In the NICU you aren't supposed to hold on to anything the doctors say because it's always getting pushed back and things are always getting rearranged, but going every day and watching my baby grow on TPN and not being able to eat breastmilk is plain torture. One of the fellows does agree with me and said she will bring it up and that they will discuss this with Dr. Naik. R and I will also be consulting with her and if she doesn't give us a mind blowing explanation, we will be asking for a second opinion.

I've been pretty passive for myself about things and the long term plan, but clearly now is the time to bring out the aggressive person that I am.

Tonight Walker is weighing in at 4 pounds 6 ounces, 1985 grams. He is also on nasal cannula. He's temperamental and it doesn't seem like his nurse is very friendly. We'll see what tomorrow brings with Nurse Courtney during the day and Nurse Esther at night.


"Just kicking it in my bed, with my hands behind my head!"


Day 83: Thursday, January 19, 2012- Nurse Courtney told me that I could blankets to make Walker's bed a little more "fun" and pretty. AND CLOTHES!! That is so exciting! He can only wear clothes that button up the front right now because he still has lines and the arm with his PICC line has to be outside of the sleeve for easy access!

He looks SO freaking cute! He's actually a little too long for preemies but that's okay.

Nurse Courtney put in an order for the physical therapist (PT) to come by and work with Walker. If he really isn't going back until he is 3 kilos, which will be quite awhile, then he's going to get some exercise with PT. He was out like a light after they came. Baby worked TOO hard!

Another BIG milestone today, they are trying to see if Walker can maintain his body heat without the warmer on. That's why he has all the blankets on top of him. He was swaddled.


Sleeping baby

Kangaroo time with Daddy

"I know this isn't my Mommy because she doesn't have a hairy chest"

Relaxing in my monkey sleeper from  the Wheeler's

Aunt Julie came to visit me and snapped these two lovely pictures. 

He's pointing: "See my clothes?"
Walker is weighing in at 1,995 grams. He's very close to 4 pounds 7 ounces.

I also have to speak about my friend, K whom I've never "met". I "met" her on The Bump preemie board and her daughter C was in the NICU at TCH for 71 days. We have a common bond. She knows what I'm going through and the halls and walls of the NICU. She's even given us a few pointers on parking and other things. Yesterday, C had a follow up at TCH and she left me note that she had left Walker a present. I thought just a card possibly but to my surprise, she left some good stuff! Walker got a bag full of goodies such as California Baby products and a grooming set! She also left me some really yummy smelling hand lotions. She understands the cracked, chapped, dried hands! She is fabulous! Not because she gave Walker a gift, but because she doesn't even "know" me or my family and she is constantly checking up on us. It's not just her but ALL my other Bumpies. Complete strangers fall in love with Walker's story and how strong this little bitty baby is.

You love you children no matter what. You feel it, you show it, it's apparent. But something about knowing and feeling that other people love you child, it is indescribable.

Thank you all!

Day 84: Friday, January 20, 2012- Happy 12 week birthday, Walkie! You are 37 weeks GA, so he is technically considered full term! I can't even begin to imagine how big this little guy would have been if everything had went smoothly in my pregnancy.

















Well, R talked with the surgeon today. She had a Skype conference call with all the surgeons and they all agree conclusively that a baby like Walker will benefit if they are bigger size. They suggested at least three months of recovery time. She said it's not set in stone but that she is thinking the second week in February, if not the end of February beginning of March.

So R and I just started planning a huge celebration. If our baby is spending the majority of his first year in the hospital, then dammit, we're going to celebrate the day he comes home! And then a couple months later, his first birthday!

We went for fajitas and I came home with a gift from one of my Bump friends, M. At her shower she received a preemie outfit somehow and when her and her husband, B, were going through the stuff, B said, "Why don't we send this to Walker?". Isn't that SO sweet? It's in the washer and he will wear that tomorrow.

Walker is weighing in at 2,035 grams tonight. He is 4 pounds 8 ounces. Tonight he has a nurse that is a traveling nurse who's never worked with him. When we left she was trying to figure out how to put his pouch on. Lord help me. I had to leave because I was getting very anxious and stressed out. 

Sunday, January 15, 2012

Days 75-79

Day 75: Wednesday, January 11, 2012- So, the doctors don't think that Walker has an infection. They think he might have been tired so they are running some blood tests. Nothing is showing up alarming or high that would lead them to think it is an infection. So, we'll see. They are trying to ween him off of the nasal cannula because nurses have mentioned that they have taken the cannulas off and he's been sating fine. Which is true, but we think he's too tired and likes what he is on. He is on 150 cc of oxygen. Not bad. They've been able to lower him to 125 but he has a lot of A's &  B's. Finally, Dr. Rhee said to leave him alone at 150.

I'm not too sure how I feel about Dr. Rhee. I've always been an over-analyzer and the other day he said something that I could've well over-analyzed. R met him for the first time and we were discussing feeds and surgery and he said, "We have time. You guys just be parents. Be here with him, read to him...just be his parents". Later on I told R, "What the hell is that suppose to mean? What does he think we've been doing?". So he's somewhere in between my love and shit list. His team however, are on my shit list. They are horrible. They never call to update. I heard them reviewing Walker today and the guy kept calling him a "she". There's a sign that is at all baby's beds that  states their last name and sex, Walker's sign clearly says Emery BABYBOY. Sometimes I want to pull his diaper off and shout, "He's ALL boy!".

I went today because R is very tired. I don't know if you remember or not but my husband is pretty strict on bedtimes and has been going strong for almost three months. We don't get home til pretty late each night and then he wakes up to go to work with little sleep.

I got some alone time with my boy and I have to say, it was really hard to leave him.

Last night Walker weighed 3 pounds 12 ounces. 

I love this OH face he makes!

His smile is contagious and fills our hearts!

Look at his pretty hair.

This is how he sits when I hold him. He's wrapped up, don't worry. I unwrap him just to see and touch all of him

Just relaxing in my bed and sucking my thumb.

Our precious baby!




Day 76: Thursday, January 12, 2012- Since we didn't go last night to see Walker, I was dying this morning to go see him. I'm really loving Mommy and Me time. Just the two of us.

Walker is rooting! Since he is NPO, nothing by mouth, when he would root I would give him my finger. You would had thought he was getting the good stuff! He started stroking his hair by his ear and falling asleep. I would start to pull my finger out and he would get fussy and start moving around. He's going to be a champ with breast feeding, I know it!

Last night they took him off this really big antibiotic and put him back on these other two because he was starting to look like he was coming around. Today, he was crying when Nurse Courtney was messing with him, which is a good sign and let's us know he's feeling better.

WE HAVE A 4 POUNDER!! Walker finally made it out of 3 pounds and we are SUPER excited! Such a great night!

He thinks I have a voice of an angel!



Day 77: Friday, January 13, 2012- Happy 11 week birthday, Walker! Walker's gestational alert is 36 weeks.





Vogue-ing
"These are my fingers, huh?"


My Daddy is such a meanie!






Day 78: Saturday, January 14, 2012- Walker is up to 4 pounds 3 ounces, 1890 grams. He is a hair shy away from being 17 inches long. He's a growing boy! Now I'm regretting all those preemie clothes. Crap!
Okay sleepy baby, it's time for a bath.

"Don't ever wake me up for a bath again!!"



Tonight, Daddy gave Walker a bath for the first time. He did a good job too! Walker really loves bath time and when he gets scratched, rubbed, massaged or scrubbed on his back. I didn't get any pictures because I was assisting. R is so worried about hurting or breaking Walker.

That bath wasn't so bad.
Day 79: Sunday, January 15, 2012- Dr. Premkamur came to see Walker today. He's the doctor on call tonight and it was SO good seeing him! We miss you Dr. Premkamur, A LOT!! I had a talk with Walker and let him know that if something is going to wrong, it needs to be tonight so Dr. Premkamur can assess.

No changes for Walker today. I recently became obsessed with Wubbanub's after a Bump friend had her baby, and I HAD to get Walker one. I looked online and I can't wait for it to shipping to me so I was lucky to find out that the gift shop sells them. We got Walker a lamb. It's too cute and he LOVES it! Another plus side, it's a regular newborn size nipple and he took to it like a champ!

Anyway, enjoy the pictures!
"Go TEXANS!"

"Oh, what's this?"
"I'm watching you, Lamb"

He sleeps like a little angel that he is!

"Hims my friend"

UPDATE: I forgot to add the steal we got today. I went to Babies R Us tonight thinking I was going to buy a bumbo. I have $30 of BRU bucks so I was prepared to spend, plus some left over change on a couple gift cards. Walking past their clearance I spotted a high chair that was originally $139.99 on sale for $119 with an additional 30% off. SOLD! It came out to $84 and with all my coupons and deals, we purchased Mr. Walker's high chair for the low low price of $40 total!


Wednesday, January 11, 2012

French Toast Casserole

I started a new tradition this Christmas and brought French toast casserole to our family's Christmas. Usually R wakes up early and gets us Shipley's but things have changed now. My immediate family and I head to my parent's house and the kids enjoy what Santa brought to Nana and Papa's house. Sadie now brings the donuts and we eat breakfast and open gifts. Can't wait for next Christmas with Walkie there.



Ingredients
  • 1 stick of butter
  • 1 cup brown sugar
  • 1 loaf Texas toast (We use Rainbow and cut the crust off)
  • 4 eggs
  • 1 1/2 cups of milk
  • 1 teaspoon vanilla
  • Powdered sugar to your liking
  • Cinnamon
  • Sugar
  • 9x13 pan
Directions:
  1. Melt butter in the microwave
  2. When melted, add brown sugar and mix well
  3. Pour the melted butter and brown sugar mix in the bottom of your pan.
  4. Beat eggs and add in milk and vanilla
  5. Layer the Texas toast on top of the brown sugar mixture.
  6. Ladle half of the milk mixture onto the bread 
  7. Sprinkle cinnamon and sugar on top. * I combine the sugar and cinnamon and mix them together in a cup before I sprinkle on top of the bread. There are no define measurements for the mixture. Sprinkle to your liking!
  8. Add second layer of Texas toast
  9. Ladle the rest of the milk mixture onto the bread. 
  10. Cover and place in the fridge over night.
  11. Bake at 350 degrees for 45 minutes 
  12. Sprinkle with powdered sugar and serve with syrup.


Days 70-74

Day 70: Friday, January 6, 2012: Happy 10 week birthday, Walker! You are in the double digits, WHAT!!

Today you went back to radiology to fget your tube put in and they couldn't get pass your blockage. Sad face. They are letting you rest the weekend and will discuss starting small, continuous feeds next week. The radiology people didn't even sedate you. They said you were the best patient and they've never seen a baby act so calm and still.

You are SO very precious! Everyone loves you!

R and I have been wondering about his primary nurse, Courtney. She hasn't been here lately and we know Walker has been messing her. Tonight when we arrived, we learned she was on duty but wasn't Walker's nurse. I'm not too sure what's going on with that. Tonight he had a traveling nurse and I was bit weary about her. I made sure to tell Nurse Esther to watch over you.

We LOVE Nurse Esther! She prepped and was Walker's nurse the night of his surgery and she very clean and takes care of business. She loves him too. She was off for four days and came over to see Walker and took over his nurse's duties. She told Nurse Nancy, "I've been gone for four days and I've missed Walker. I want to hold him.". Nothing makes us more comfortable with leaving him every night then having a nurse who clearly loves our boy. I know this sounds very strange but I'm tempted to ask the surgeons to plan around Nurse Courtney and Nurse Esther's schedule when they schedule his upcoming surgery. They are the only ones I want taking care of him after a big thing like that.

Walker loves to be held now. He was crying and was cranky when R arrived, I was pumping. He wouldn't stop for anything. Until I held him. He's such a tootie! I love him.

I laugh when he cries. Hearing your baby for the first time after 2 months, I always want to hear more.

LOVES his pacifier


Tonight I put Walker's swing together all by myself. I turned it on for R and I and we listened to the music and started falling asleep. Can't wait to put my little man in it! I wish I could get in it.

It has birds hanging from the top! My Little Snugabunny!



Day 71: Saturday, January 7, 2012: The Texans are playing their first ever playoff in history! We are so excited. I love Owen Daniels #81! So much that I asked R if we could use the name Owen Daniels as our boy name. He responded quickly with a "Hell no". Shucks! We are HUGE Texans fans. Today when we went to see Walker we grabbed his burp cloth from Krista and his football from Andy to take pictures with. In the picture you can see my Texans shirt and on the back it says "Daniels and 81". I know that he has done some humanitarian work at TCH but in the older units and I would absolutely LOVE for a private appearance and a picture of him holding Walker. Dr. Keaney and I discussed this before.


He is now doing this thing with his tongue where he has it out all the time. And sometimes when we talk to him he starts moving his lips real fast like he's responding to us. SO FUNNY!

ATTENTION, ATTENTION: We have a SERIOUS Momma's boy on our hands. When Walker sees me or hears my voice he starts crying and thrashing himself around. He might be little but he is so strong!

Nurse Courtney is back! YAY! She was out with strep throat. I told her we started to worry and were about to hunt her down. I'm not kidding. Walker needed her back.  When she took him from my arms, Walker immediately began crying and didn't stop for a while. I had to go pump and R stayed with him. When I came back, he was sleeping and then I started talking and cue tantrum. Love that baby!

Look how cute I am with my mouth closed!
Good news: Nurse Esther said that she would sign up to be Walker's primary nighttime nurse. That's a huge relief. She is fantastic!

Last night Walker weighed in at 3 pounds 11 ounces!

Day 72: Sunday, January 8, 2012: Walker is ROP free! The avastin injections worked! Dr. Steinkuller will continue with the weekly eye exams but he said Walker looked "Fantastic!". YAY!!



Day 73: Monday, January 9, 2012: Walker is on NASAL CANNULA!! HOORAY!

Walker's liver enzyme count is lower so that means the omegaven is working! Surgeons have suggested letting his gut rest for this week and maybe try a small, continuous amount of feeds next week. I'm not trying to sound pessimistic but I don't think he'll start eating until after the surgery. Also, Dr. Rhee said he hasn't talked with surgery yet (since it's a month away), but he kind of seemed to think they would do two surgeries. One to connect the intestines back together and then another one to remove the blockage. Hopefully Dr. Naik will only do one. I don't want him to have two surgeries. 





I can find my mouth!





I couldn't pick just one, so I gave you all a couple to look at!

Day 74: Tuesday, January 10, 2012: Seems as though the doctors think Mr. Walker is ready to be weened off the nasal cannula. He's taking to it very well. We could very well show up tonight and see a bare face. Well, besides the replogle.

They lowered his oxygen pretty low but he started have a lot of A's & B's so they bumped him up. His primary, Nurse Courtney seems to think he might have an infection. She said he was acting lethargic so they put him on some antibiotics. I guess we'll just see. 


Tuesday, January 10, 2012

Because every baby needs a poem



The poem that makes me think of Walker and one that will most likely always make me think of my kids (plural as in future), is E. E. Cummings "I Carry Your Heart With Me".

I Carry Your Heart With Me

I carry your heart with me 
(I carry it in my heart)
I am never with out it
(Anywhere I go, my dear; and whatever is done by only me is your doing, my darling)
I fear no fate
(For you are my fate, my sweet)
I want no world
(For beautiful you are my world, my true)
And it's you are whatever a moon has always meant and whatever a sun will always sing is you

Here is the deepest secret nobody knows
(Here is the root of the root and the bud of the bud and the sky of the sky of a tree called life; which grows higher than the soul can hope or mind can hide)
And this is the wonder that's keeping the stars apart

I carry your heart
I carry it in my heart

-E.E. Cummings

I love you so much, Walkie.