Friday, March 30, 2012

Days 150-154

Day 150: Monday, March 26, 2012- Walker's feeds have increased to 48 cc and he's taking 3 bottles a day. I got to feed him one time and my little snuggle bug fell asleep and didn't finished.

Walker is weighing 3,790 grams. That 8 pounds 6 ounces. Lost a little. His diaper rash is improving.

Day 151: Tuesday, March 27, 2012- Walker has been sleeping through the night and is starting to stay awake longer during the day. R has been at a class for work these past two days and he gets off early. By the time we get to Walker he's either sleeping or starting to fall asleep. Today R held Walker and he was showing off how he can hold his head up by himself. He's been working hard and he was doing so well! He laid it down when he was ready to shut his eyes.
"Why aren't you holding me Mommy?"

"What does your sticker say?"


"I do kisses, I really do."

"What's out there?"

"What's that moving out there?"
 Lazy Nurse Tuesday got tired of putting Walker's pacifier in his mouth, so she taped it to a rolled up rag. Clever? Not so much. He already has a powerful suck which complicates things with feeds and all she did was make him suck even HARDER to keep his paci in.

I'm having a huge issue with his nurse leaving him in a dirty diaper, when he has a horrible diaper rash, only for me to change it whenever I show up.

Day 152: Wednesday, March 28, 2012- Happy 5 month birthday, Walker! We love you so much big guy!
"Are you going to put my paci in my mouth or do I need to throw a fit?
"Oh, oh! Don't scare me again Mommy!"

Ugh. I would have totally taken Nurse Tuesday over Nurse Wednesday today. Walker is great with his hands. He can pull anything out or down. Today he pulled his OG tube out and it needed to go back in. I had a feeling before Nurse Wednesday even began, that it was going to be terrible. He was having a fit and she stuck his pacifier in his mouth to calm him while you thread it through. He was not having it and pushing back and holding his breath. He started getting distressed and turned blue. I had to turn the oxygen up all the way and now that I think about it she didn't call or ask for help at all. Usually they have RT come by and assist. It was very traumatizing for me and I can't get the picture of my limp, blue baby sitting there. HATE THAT NURSE!

Thankfully, Nurse Esther is there tonight and she loves Walker and will take excellent care of him.

Walker weighed 3,930 grams. That's 8 pounds 10 ounces.

Day 153: Thursday, March 29, 2012- Ugh, Nurse Wednesday is back and with a trainee. Not happy. Walker's bottle feeding during the day didn't go so well. Tonight he is with Nurse Denise and she gave me some excellent pointers in feeding him. FYI for those with babies and think you just put the bottle in their mouth. Wrong. It's so much more difficult with a baby. You have to pace and help close their mouths to get a good suck.
"Please don't drop me Daddy"

"What are those people doing out there?"

"Fake smile"

 They really are sleeping too. R gets in trouble because in the NICU you aren't allowed to fall asleep with a baby in your arms.

Day 154: Friday, March 30, 2012- Happy 22 week birthday Walker! Adjusted age: 7 weeks.

Walker's feeds were increased to 58 cc, that's right under 2 ounces. He's almost there! Today he got his 4 month shots. You have to be 2 kilos before getting your shots, so Walker got his first round of shots at 3 months and his second at 5 months. He'll always be a month after the recommend age.

Nurse Courtney put Walker on the list for volunteers to hold him. He loves to be held and well, he's 5 months. He is awake longer in the day and doesn't like being in bed all day long. I'm sad about it. I don't want anyone holding my baby that I don't know.

While holding Walker, he rolled over. I put him on his boppy to see if he would, and he did! He's getting so big! He's even starting to smile more. 
"Who's that?"

"What are you saying about me?"

 Papa is leaving for a job in St. Croix for 2+ months so he came to see Walker before leaving. Must be nice!

Tonight Walker is weighing 3,945 grams. He's 8 pounds 11 ounces!

Thursday, March 29, 2012

Preemie Pen Pal Group

Like I mentioned so many times, The Bump is great site. I've met some really great women from there. So much so, that we've formed groups on Facebook that are private and only viewable to certain people. It's all about friendships. We'll remember these people for the rest of our lives when we think back to our pregnancies and our babies being born.

I've always been the type of person who has had a ton of friends. I love everyone! Seriously, I do! All my friends are different but just alike in many ways. Most of these women that I have met on the site, I have never met in real life. Today I received a gift from one of them.

K, C's mom, who was also at TCH for over 3 months, has been an amazing friends through this whole NICU journey. It's almost as if God whispers in her ear when I need something because I always get a gift or a note to let me knows she's thinking of us or something to lift my spirits.

I'm in a mood of moods today. I hate the NICU and all the people in it. Even Dr. Dariya stopped by and I completely ignored him. The hospital is wearing on me and I'm so ready to be done with it completely. You think you understand or might think you know how I would feel; but you have NO idea!

Anyways, back to my gift. She had mentioned to me last week she had something for me but her little girl was sick and asked for my address. I love snail mail! Inside my mailbox, after my horrible hospital daily visit, were these:

The Preemie board has been my go-to board. These ladies get it. Very few have experienced what we have but they get it nonetheless. Lengthy NICU stays, feeding intolerance, BPD, CLC, desats, CBC, OG tubes, PT, OT...all these words that you don't have to explain what they mean; they get it!

I could not have received these cards at a better time. See what I mean about God whispering in her ear? I got choked up reading what these ladies, all around the US, whom I've never met, are cheering not only Walker on, but us too.

Thank you ladies for following our journey and cheering us on along the way.

Much, much, much love to you all!

Sunday, March 25, 2012

Days 145-149

Day 145: Wednesday, March 21, 2012- Walker had his PICC line place today AFTER his eye exam. Poor baby. He was not happy. Thankfully they gave him some fentanyl. It took them a while because the couldn't line to thread through, so they had to put one in his leg.

His eye exam went well and he'll be back in 2 weeks to see him. Another eye doctor was supposed to come by and see Walker and his "thing" he's doing. He didn't make it so hopefully he'll be there tomorrow morning. 

Tonight Walker is weighing 3,665 grams. He's 8 pounds 1 ounce.

Day 146: Thursday, March 22, 2012- Today was a good day for Walker. He took 17 cc out of 22 from a BOTTLE! That's the most he's ever taken. His feeds have increased to 36cc ever three hours and his TPN has been reduced. I forgot to mention that Walker has a wicked diaper rash probably caused by his antibiotic. His booty cheeks are chapped/blister. I feel horrible for him. Thankfully, Nurse Esther is with him tonight and tomorrow and then Sunday Nurse Courtney is back. I know they will take extra special care of his derriere. My booty cheeks hurt when I change his diaper. I stand there with them clench while Walker screams bloody murder. 

PT came by and worked with him and said he needs more toys. So after putting to him to sleep, I slipped out and went to find some. I got him the Baby Einstein Seas Dream Soother.
Walker loves oceans sounds and the animals move up and down and around. You turn that sucker on and he's out like a light! He also got a Moroccan rattle and a seahorse rattle. My Mom bought him links for Christmas that we will assemble from the head to the foot of his crib. Child life is supposed to bring a mobile. PT also said that Walker is tongue tied and will need to get snipped.

The ID team came by and are happy with Walker's progress and the antibiotic that they chose to use for the meningitis. His head scan is scheduled for April 3.

Aunt Julie came to visit Walker today and she got to hold him for her first time. Special moment for her. Uncle Tim is sure to be jealous of missing this visit for the Pokemon tournament!

The ophthalmologist consult didn't show up again today. Hoping for tomorrow.

Walker's weight tonight is 3,705 grams. That's 8 pounds 3 ounces. 

Day 147: Friday, March 23, 2012- Happy 21 week birthday, Walker! Adjusted age: 6 weeks. What an amazing day! It's beautiful outside and waking up I found on Facebook that it's the very FIRST, Parents of Preemies Day! Check out the website Parents of Preemies Day.

Day 148: Saturday, March 24, 2012- We had a good day today. Walker's nurse, Melissa, was a sweetheart and Dr. Keith (I don't know his last name) came by to see the little guy. He loves Walker. I can tell. He was excited to see him lift his head and work on his neck muscles. Dr. Keith looks like Sandy Frink from Romy and Michelle's High School Reunion but he's way hotter. I hope I didn't offend him when I said that but I couldn't hit on my son's doctor and correct it by saying, "You're way hotter, though". This month's doctors have been spectacular. Dr. Spear is really caring, funny doctor. Adele is so pretty and nice. I swear her voice is that of an angel. R agrees too. When she talks, you notice yourself start to fall asleep. But for some reason, I just can't get into the liking mode of his fellow. Hey, we can't all be friends right?
"Hey Momma"

"What do you mean Daddy's at home?"

"He's doing what to my room?"

Walker's feeds have increased to 40cc. He is weighing in at 3,860 grams. That's 8 pounds 8 ounces! Big Boy!

Day 149: Sunday, March 25, 2012- Today was such a good day for Walker and I. R is still at home with home repairs and Walker and I got to spend a lovely Sunday together. I imagine this is what our days will look like. We snuggled and listened to music. We bonded all day long together. 

Walker's feeds have increased again and I can't remember to how much. 43 cc. His diaper is still pretty bad. We're trying some new cream and hoping it works.

Today, OT came by to work on feeding with him. They used a new bottle, which I've also forgot the name. Basically it allows Walker to be in control. He has his suck down, but he needs more practice with his swallow and breathe. His desire to eat is there and he tries so hard. Makes me very proud. Most micro-preemies that haven't ate in as long as Walker hasn't, typically have an aversion to things in their mouths.
And Lyndsey made this new sign for Walker's door! He was due for a new one!
I was sadden to hear today that Adele would be leaving us tomorrow. Tomorrow is the opening for the Women's Pavilion and she, along with the attendees and everyone will move over to that NICU and nurse practitioners will oversee Walker's side of the NICU daily. I don't really understand the reasoning behind it, seeing as the new NICU is for early, feeder grower, not sick babies. The babies that deliver over there and need to be seen by a cardiologist or seem to need some type of specialty doctor will be transferred to the other NICU where Walker is. My personal opinion is that it should be the other way around. Although, I do have to say that it sounds amazing over there. If you just simply have your baby early and they need to have an uneventful stay, after you are released from your doctor's care, you are able to stay in a private room with your preemie. Every neonate will have their own room with a sleeping area for the parent's. How cool is that?

Walker's weighing in at 3,850 grams. Still 8 pounds 8 ounces.