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. 

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