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.

Days 140-144

Day 140: Friday, March 16, 2012- Happy 20 week birthday, Walker!Adjusted age: 5 weeks!

Horrible weekly birthday for Walker. We could see he was having a very hard time breathing and test were run. He has bacterial meningitis and we are being told that they caught it fast. He had a lumbar puncture that is a spinal tab WITHOUT deadening the spot and without pain medicine. Only thing the boy had was a little sucrose water on his pacifier.  I'm writing this a day late so forgive but I've forgotten a lot. I'm heartbroken and so sad for my baby.

Funny thing too. When they made rounds they decided to remove Walker's name from the Level 2 list until they get this thing under control. We got the phone call within a couple of minutes after they said this that a bed was ready for Walker.

So for parents with babies in the NICU, we are quite familiar with the saying "the NICU rollercoaster". I was really beginning to think we were at the end of our ride. I haven't been sleeping because I've been so worried about my baby. My body aches with pain of sadness and defeat. I've watched two babies celebrate their first birthdays in the NICU and I've watched countless babies leave before us. We continually hear how strong we are and how people couldn't do what we do. He is my child. He is my heart, soul, my whole life. There is nothing I wouldn't do for him. But this infection has brought me to my breaking point. 

Day 141: Saturday, March 17, 2012- Walker's respiratory rate is better today. They discussed taking him off of CPAP and I think that's too fast and if he needs the extra pressure, give it to him! His body is fighting so hard and that shows in how much he is sleeping and also his platelet and blood count.

So, Walker has gram negative rods bacteria growing inside of him. It's a pretty serious bacteria that has a 50 % death rate if not treated fast and effectively. We found out today that he has serratia again and also E-coli in his urine. His spinal fluid did not grow again which is great news. Walker was taken off one of three of his antibiotics.

Today, I was complete mess. I taught myself early in life that there's no reason to cry. Crying gets you nowhere and just makes you feel like crap. That was not the case today. Immediately approaching Walker's bedside I broke down crying. It's so hard hearing other families so happy about their neonate and full of energy. Since we've been in the NICU so long we've accumulated a lot of friends. They always come check up on Walker and talk with us. Today was like no other day and I couldn't take it. A little birdie, who LOVES Walker wanted to do something for us but didn't know what. Currently Walker's spot is right on the corner near the milk fridge and the ice machine. It's pretty loud. A PCA always makes sure that Walker has a screen for privacy. They came and put a message in my ear about a private room opening up and that I should talk with the charge nurse and ask about moving. My reply, choking back tears, "I don't want to talk to anyone right ". She told me she understood and would be my advocate. So Walker is currently residing in his private room with a window that faces the Children's Garden. I'm so thankful for those ladies and feel overwhelmed with love from them. Walker too. So thank you to L&D and no, I'm not talking about Labor & Delivery.

Day 142: Sunday, March 18, 2012- SO clearly my episode of tears yesterday has made quite a stir around the NICU. Today while we were there, we were visited by fellows and attendees that used to work with Walker. There is something about Walker that grabs the heart strings of strangers and they always check up on him. I guess I have been so strong and put on such a good front that the thought of me crying my eyes out yesterday was a lot for these people. I actually felt embarrassed but also cared for.

Walker is showing signs of improvement. He's alert and awake and can't be without his paci! We got to hold our sweet boy today and that by itself was enough to put us in a better mood. He's a hungry boy, but feeds will might start tomorrow. The blood cultures have not grown which is fantastic news.

We are so glad that Walker is slowly getting back to being himself, but with every new or different movement I'm thinking about the long term effects of meningitis. Dr. Google is not my friend and I already feel defeated and we don't even know anything. Walker will have a brain scan and repeated hearing test in 21 days. His ophthalmologist is already scheduled for Wednesday for his two week check-up. I'm praying hard that everything will be okay for Walker. I can't stand that my boy was chosen for this rocky of a start for the beginning of his life. 

Day 143: Monday. March 19, 2012- Walker, oh sweet Walker. Where have you gone? You've succumbed to this angry, hungry baby. They are taking Walker's feeds really slowly and Walker's a hungry little man.

Hated his nurse today. She had the nerve to say, "he cries a lot". Um, isn't he a baby? And an almost 5 month baby at that. He doesn't like sleeping or being in his crib anymore. Rude ass.

ID team came by and said that he will be treated for 21 days and then a brain scan will be performed. Depending on what that shows, like an abscess, he'll need medication longer which would mean a longer stay. Time will tell. His hearing test will also be performed at a later day. Walker is an extraordinary baby, so much so that his meningitis caused by serratia has very few studies performed because it is so rare.

So the infection was living in his gut. Having a foreign object, such as a PICC line, is like a moth to a flame. Bacteria will head straight to the line and begin infesting. That is exactly what happened. Walker's had 3 or 4 PICC lines, 2 have been the cause of the infections. So the thought of putting another one in his arm, terrifies me. Today we had to discuss putting another one in. Either way, until Walker is off of TPN, he has to have one. Ugh. I'm not happy and stressed out.

The positive outlook we are taking from this is that he has 3 weeks to get to full feeds, off TPN and time to work on his suck, swallow, breathe with a therapist three times a week.

I do have to say that I couldn't get through the days without my husband. He is nowhere near the perfect man but he's there for me when I need him.

Day 144: Tuesday, March 20, 2012- Walker's feeds were increased today. He is doing well with his food. He was supposed to get another PICC line but they rescheduled for tomorrow. They want 72 hours and 3 negatives from the culture before placing another one in. Nurse Courtney, knowing how worrisome I am about another one, brought up the idea of putting something else in. The team doesn't think that Walker will need TPN for very much longer so they just want to place a PICC for the time being.

Today, Walker just wanted his Momma to hold him close and nothing else. Leaving was very hard. We had to place him in the swing and then sneak out. Physical therapy has started working with him again.

The one thing that is worrying me the most right now is Walker's eyes. When he finally started waking up from the sickness, his eyes started doing this thing were they move side to side pretty fast. Sometimes even up and down. Side to side is normal but up and down isn't. The team knows, as well as the ID team, and they both don't think that is a side effect from anything that has taken place. Tomorrow is his two week eye appointment and I hope his ophthalmologist can tell us something. I do know that it has improved so that is a plus.

Grabbing onto Lambie

"Don't think about taking the Lamb away!"

Don't worry, it was only an under the armpit thermometer check.

Momma, Walker and Nurse Courtney

 And finally I'm leaving you with this, you've heard me talk about Nurse Courtney numerous times. She's amazing. The connection between her and Walker was instant. You think all nurses would be incredible but they become numb to the everyday situations and basically, they aren't. Courtney is fabulous and what a great way to celebrate her is by nominating her for our local newspaper Salute to Nurses 2011. If you feel compelled to join and celebrate Walker's fabulous nurse, the link is here: Salute to Nurses 2011.

I would also like to welcome the viewers all the way around the world! Welcome!

Days 135-139

Day 135: Sunday, March 11, 2012- So today we took a step back. For the past couple of days we've noticed Walker breathing harder and last night it sounded wet. Today at 6 pm, he was put on nasal cannula at 25 cc on oxygen and given a dose of Lasix. We're both kind of bummed.

Walker is weighing in at 2,490 grams. That's 7 pounds 11 ounces. He is 49 5/8 centimeters.

Day 136: Monday, March 12, 2012- Feeds have been increased to 22cc for one hour. Off two hours.

Walker is weighing in at 3,505 grams. Still 7 pounds 11 ounces, almost 12 ounces.

Day 137: Tuesday, March 13, 2012- Today was not a good day. I'm sick and tired of his team of doctors this month. I can't wait for us to move or it to be the end of the month. Back story: Last week the doctors mentioned something about Walker having Short Gut. I flipped out because it was the first I'd ever heard of it. Then, Nurse Courtney brought it up to Dr. Naik, the surgeon; to which she quickly dismissed this. The reason the doctors thought he had it was because of him having parts of his intestines removed and because his feeds didn't start out well. Dr. Naik quickly dismissed this and scolded them for evening telling us he had it. Well, they keep bringing it up. Only "suggesting" the possibility of him having it. I'm about to flip a lid! I'll use my words as my ammo but I'm going crazy. If they say it again, there will be a rumble in the Level 3

Of course Walker would have issues with feeds, he's never truly ate in 4 months. His gut would be immature to having something like milk in it. It all takes time and Walker will prove these doctors, watch him! Why would they speak this over my innocent baby? They tell you in that in the NICU always put off positive vibes to your baby. That they can feel it. Well, what the hell are they thinking?

My little Chub a Wub is still cute as ever!

Walker had a good night with Nurse Esther. He slept from midnight to five this morning. Momma can deal with that sleep schedule!

Walker has improved so much on his suck, swallow and breathe reflex. He did fabulous today!

Walker is weighing in at 3,600 grams. That's 7 pounds 15 ounces.

EDIT: I really dislike the doctor that was filling in for his doctor this month. Dr. Spear is really good and I retract my statement about him. But not so much about the fellow. 

Day 138: Wednesday, March 14, 2012- Walker's breathing is still not where it should. I was a complete mess today. He's breathing really hard and you can tell he's exhausted. They think it could be his chronic lung disease catching up with him. He's gaining weight at a pretty fast, but a healthy pace and his lungs kind of suffer from that. He needs time for his lungs to grow. He's still as sweet as ever and loves to snuggle with his Momma.

"Okay guys, are we three going to be best friends now?"

Look at his little face! "I want my Lambie but not right now"

"Hmmm"

Walker in his speckled big boy crib with his friends watching over him.

Dr. Spear gave an estimate of 10 days to 3 weeks for Walker to come home! His feeds are up to 32 cc! We are half way to full feeds and his TPN has been lowered too!

Day 139: Thursday, March 15, 2012- What a horrible day! I couldn't sleep last night and was freaking out about Walker. Last night they started Lasix to try to relieve some fluid around his lungs. Yeah, didn't work. I knew it was something more.

The only thing that makes him happy to be held like this and for Momma to sway.

Turns out Walker is pretty sick. He's fighting some infection and has been poked, prodded, drained, suctioned and squeezed all day long. His platelets are low so he's getting a transfusion along with two antibiotics. He was put on CPAP because he needed extra pressure to expand his lungs. He has an ugly scalp IV. There's so much to say and I can't remember it. Walker's been taken off the list for Level 2 until they figure this thing out. That's fine with us because we love his nurses and know he'll be taken care of really well from people that LOVE him. Who knows? Maybe we could go home from Level 3 like we want.

I've been cautious. Sometimes OVER cautious about who comes in contact with my baby. I'm not afraid to say it either. He's my baby and while people think he is doing so much better, which he is, he is still at higher risk of catching things. The hospital is dirty and is filled with sick kids. We can't believe it's taken this long for Walker to get sick, but he did. We're hoping for this infection to hurry up and pass us and we'll be on our way again. If you think I'm bad now, just imagine when he comes home. I have absolutely no problem restricting my baby from the world until I feel like he is ready for visitors. Once we're discharged from the hospital, I want it to be years if ever, before he is admitted again.Walker is finally peacefully sleeping and this Momma has been through a whirlwind today. I would take his infection times 10, if only I could.

"I'm here to make balloon animals for the kids". Even though he looks rough, doesn't he look like a clown with a little hat on his head? Reminds me of the clown in the movie, Uncle Buck!

What the hell just happened today?

On another note, we've bought the floors that R will begin laying down this weekend. Something positive to look forward to. It's Brazilian Walnut and it's beautiful!