Days 40-44

Day 40: December 7, 2011- Walker's dopamine dosage was dropped from 20 to 17.5 and his vent settings are pretty low. The pressure is 24 over 6. Supposedly one of the bugs that grew inside of Walker has a tendency to aggravate the stomach. As soon as he is on a lower dosage to completely off of dopamine, we will start feeds.

Walker was seen by the pediatric ophthalmologist.We are waiting to hear what he has to say.

Look what Krista made Walker! Can't wait to take his picture in this!

Day 41: December 8, 2011- Man I'm stressed out. Walker is fine. His stomach is funny and I just wish it would hurry up and heal or get better or whatever is happening with it, would stop. My anxiety/stress is so bad that I've scratched my legs and stomach all up. We are so ready for this kid to catch a break.

Day 42: December 9, 2011- Happy 6 week birthday, Walker!They lowered your dopamine to 10 and you aren't really having it. By the time we get back up there tonight I'm sure they will have raised your dosage. You have developed the jaundice that is effecting your liver. The doctors have suggested a new drug that is not approved by the FDA but that TCH has been using for 4-5 years and has had great results. I just don't know why God would do this to you or to us.

Day 43: December 10, 2011- Walker's dopamine was raised and then lowered. They mentioned an exploratory surgery to look at his intestines and see if there's an obstruction, rupture, or blockage. His stomach is distended and although they thought that his belly was basically sleeping, they x-rays haven't changed and they want to investigate further. When the surgeon walked in to discuss the procedure I felt like going around the room and punching her, the nurse, my mom and R because I was so upset. They keep mentioning that after surgery that he will get really sick and I hate that. I know they are preparing us but it's still aggravating.  And they I started thinking about Grey's anatomy and wondering if she was surgeon like Christina; a hungry surgeon ready to operate on anyone. We stayed the night at the Ronald McDonald House inside of TCH so we could be there in the morning.

Day 44: December 11, 2011- Horrible nights rest! I woke up every hour because I was afraid I was going to over sleep. Even with two alarms set. There was no precise time set but sometime between 7 am and noon. We waited, waited and waited. Walker was receiving blood and the catheter slipped out of place and his arm began swelling up.

I'm delirious. Anyways, Walker is set up to have surgery tomorrow. Worst case scenario they'll take out the blockage, bring one part of the intestines to opening of the stomach and connect the other to a stoma. He'll be on TPN longer and there's so many complications like feed intolerance and not being able to absorb nutrients.

So basically, it all sucks. My poor baby didn't ask for any of this and it's sad. R keeps saying, "He doesn't know any different, H. This has been his life since birth and he doesn't know any different.". I'm not sure how that's comforting but he tries. Love R.

Six Week Check Up

Today I went for my six week check up. Um, that kind of hurt!

Anyways, I lost a total of 11 pounds. None of which was baby weight because I only gained 2 pounds total while pregnant. Nurse Maryanne came in the room and started to ask questions about what happened and all the details. And then finally said with an nervous look, "I'm sorry I have to ask, did he make it?". I think I gave her an insulted look and said, "Of course he made it!". I'm so proud of Walker! We went on with the appointment and she was eager to ask questions, I told her he is weighing 3 pounds 4 ounces and she was amazed. Walking into his office they asked if I had any pictures and I showed them some I had on my camera. They loved all his hair. I've been so busy that I forgot to send the edible bouquet we had planned to send to the office. And now I'll need to send some pictures also.

Dr. Milner and I discussed birth control and R and I had already discussed it also. There's no way I'm having plastic implanted inside of me, so the IUD was out. The other two choices were the shot and then protective sex. The thing about birth control and me is this: there isn't a reason for me to be on it. Yes, to have a monthly period but I don't ovulate on my own which is the key concept to getting pregnant. It took a lot, but not as much as other people do, but it did take a lot to get pregnant in the first place, so I think we are okay. Plus, we both are tired and mentally exhausted, that when it's time for bed, that means sleep. Another thing is that when I had stopped birth control, it took a good 3 months for my body to feel like me again. I can tell a huge difference between the way my body is on and off birth control. I like it without. R and I know we want more kids but our main focus right now is Walker.

So all you mean, ugly people who are reading this and thinking to yourself, "She'll be pregnant in three months tops", go on with your rude self!

Dr. Milner seemed to be real beat up about my pregnancy. I asked questions about next time if I would be high risk and he said no but he would monitor me closely. The same results came in that my placenta tested positive for a severe infection. There's no real reason. All my other tests from pregnancy came back all clean, it was just a fluke. If it had to happen to someone, it was going to me!

Overall it was a good appointment.

Days 35-39

Day 35: December 2, 2011- Happy 5 week birthday, Walker! Walker had an ECHO of his heart yesterday and the cardiologist said that his PDA is large. We'll get to that at a later date. The infection is what we are working first and foremost. 

So, the previous hospital took a culture to grow the bacteria in Walker's blood. They told TCH on the 1st that the man in charge was only working from 8-8 and wasn't in and to call the next day. TCH called shortly after 8 and a they have a policy of keeping it for 48-72 hours, so hopefully it will come within the next few days. They are calling for the sensitivity report on the bacteria, to determine which antibiotics will kill it. He is still on antibiotics but they want to make sure they have the right ones. As of last night, they decided to bring in the infectious disease team to analyze Walker and make their own predictions. Walker is now on three antibiotics that they think will work until they get the sensitivity report. 

They also took out the PICC line because he was still testing positive for an infection at TCH and PICC lines are easily infected. He's oxygen was lowered to 28% and as soon as we get rid of this infection, hopefully we can lower the pressure. He seems to be doing better this evening compared to when I came in the morning. He's moving around and opening his eyes unlike the lethargic Walker we were seeing.

R had an absolute fabulous time shopping online for Walker. He picked out outfits from Carter's all by himself during the cyber sales. He didn't even call to ask for sizes. Some of the outfits might never get worn and I've already asked if we could take them back for the correct sizes in which R's response was, "I'll cut the sleeves and legs off if it's too hot". I don't think so, honey.

A man standing on a bridge holding a sign that says, "Jesus loves you" while waving to drivers. I needed this reminder.

Walker is so advanced at sign language. His ugly and mean IV.

Love you too, Little Bird!

Daddy picked this out just for me!

Day 36: December 3, 2011- Walker's baby shower was today. He got so much stuff! Auntie Amber hand painted his letters to match his bedding in his room! They are beautiful! I can't wait for R to hang them. He also got a lot of monogrammed stuff and Momma LOVES things with her name on it and I know he will too!

Walker's PICC line was removed due to it being infected. The infectious disease team came by again and were asking R questions, I was at home getting dressed for the shower. His tummy is funny. They are still concerned and don't have any definite answers. They are stilling watching him for NEC, but is still not showing signs. Thank you Lord!

Walker had his first bath since arriving and as much as he didn't like it, we know he felt a lot better and went to sleep pretty fast after.

Surprisingly, Walker is requiring very little oxygen. Actually, he's at 28% at the highest. They are working on weening him off the pressure. At the previous hospital they were saying that Walker needed to be transferred to an oscillator which they did not have. That was not the case when arriving at TCH.

Right now Walker is showing more characteristics from his Daddy, what did he get from me? Difficult, deep veins. :( Poor baby!

Birth cloths and towel

My little bird!

After the bath. His hair is falling out from sleeping on his left side. It's already growing back though.

Walker's letters laying in his bed. Don't they look great?!

Day 37: December 4, 2011-
R and I got a room at the Ronald McDonald house so we could spend the night close to him. There are two Ronald McDonald houses. One on Holcombe that is the BIG house and then rooms within TCH. Our window was directly across from Walker's.

No big changes for Walker today. They are keeping everything the same and letting him  have a day of rest. Tomorrow they are thinking of stopping one of the three antibiotics, but they'll discuss that tomorrow. 

View from our room.

View from Walker's room.

 "They thought they would be sneaky and try to tape my thumb, but I broke free so I could suck my thumb!"

"Miss Emily gave me this Precious Moments prayer baby. He's now my bed mate!"

"Daddy thought it would be funny to lay him on me. I grabbed him and started to snuggle with him"

Day 38: December 5, 2011- No real changes with Walker, which is good. They are weening him a little more on the vent. The ID team wants to keep him on the three antibiotics for a couple more days and then they'll talk about taking him off one if not two of them. They seem to be working. They are still keeping a close eye on his belly. It's still pretty big. He had some fluids today. They were able to lower the dosage of dopamine but nothing drastic.

When we got there, Walker was so happy to see us. He even gave me a half smile! He was wide awake with his eyes wide opened and looking around.

Miss Emily, who is a NICU nurse at a hospital near by, gave Walker some really good presents at his shower. She gave receiving blankets that the nurses can use to make his bed when he's better and a matching blanket to cover his bed with. She also gave him the Precious Moments praying baby and these disposable cameras to leave at his bed side. I left a little note so the nurses know to take pictures of Walker when we are there.

We walked my parents out and then went to the milk bank to pump. When we got there someone donated little crocheted beanies and ornaments we could write Walker's name on and hang on their Christmas tree. We were so excited and happy!

I think I forgot to mention that they found two different bugs growing and removed his PICC line, which was infected. The PICC line is a central line and is used instead of sticking Walker in multiple places. When we went back to his room, they noticed that the two IVs they have in both arms had blocked off and Walker's left arm was really swollen. The right arm was showing signs of blockage in a small area. They immediately called in some who is really good at putting in lines. (Clearly, I forgot the name of his job). They were able to find a good vein in his head again. They decided to give him some sedation because they were going to put in another PICC line.

Walker's pressure was lowered again today. He's still on about 25-28% oxygen and 26 on the pressure. 

When is the easy train going to pull through Walker-ville? Because we are ready to jump aboard. 


Day 39: December 6, 2011-
We pulled down one of the $5 trees we bought from WalMart the day after Christmas last year. We aren't fake tree people but with our circumstances of always being back and forth between places, we decided this year we would use one of them as our main tree.

Walker's blood count was low so they called for confirmation for giving him a blood transfusion and also platelets. The ID team came in and said that he can be taken off two of the three antibiotics, so that's a good thing. He has had one culture come back negative and needs two more to be taken off antibiotics completely. They are thinking by the 12th that he will be completely off.

Last night they had to shave areas of Walker's scalp to try and find a vein. My poor baby looks like an 80's rocker with his new do. I want to cry. You can really tell how much hair he had. They should've just shaved it all. I'm sorry but it's the little things that upset me, along with the major things.

 Do they look alike or what?

Days 30-34

Day 30: November 27, 2011- Mommy decided to give your space and let you rest for most of the day. Daddy and I came to see you later on when he got off of work. As soon as we stood by your bed you started over-sating. You were so excited that we were there. Then when we were saying our goodnights and goodbyes you started desating. You weren't happy we were leaving. We probably won't have a lot of pictures this week, as you get used to your new gear. Your feeds have been increased to 10 cc. You also left Nurse Siby 3-4 dirty diapers. Nurse Siby has taken care of you since your first night in the NICU, I think you really like her. Unfortunately, she is going to India for a month and tomorrow is her last night with you until the new year. How surprised she will be on how big you have gotten when she comes back! You were also taken off your lipids IV! Big step Little Bird! You are almost off of TPN and completely on breast milk!

Day 31: November 28, 2011- Happy 1 month birthday, Walker! You are at 28% oxygen and are enjoying your 10 cc of feeds. Mommy is still giving you your space while you adjust. It's a little hard too but I know it's what you need. Okay, Little Bird, we need to talk about this desating. This was Nurse Siby's last night before going on her trip and you and your little girlfriend (little baby girl next to Walker), are giving her a run for her money. Nurse Sheri had to suction you today and pulled out a big mess of stuff and tonight so did Nurse Siby. You were really moving around and pulling up on your knees and pulling your booty SO high in the air.

Mommy thinks I will have SO much hair when I get to go home.

Can you see my Alfalfa sprout? It's on top of my head. Just like Daddy's!

I'm up on my knees...

Really up on my knees...

"I don't know where I'm going, but I'm going"

Day 32: November 29, 2011- We hit another road block...again. Walker was reintubated around 12:30 this afternoon. I'm getting so fucking pissed. I know I can't help it and neither can he but I'm pissed with the situation R and I have been given and we just want Walker to be all better. It's not fair all these babies, younger than him, are doing much better. Seeing Walker was hard tonight. My baby is lethargic and not feeling so good. The doctors think he has an infection. Tonight he started back on antibiotics, TPN (lipids and electrolytes), no breast milk for this boy. He also had an IV put in for a blood transfusion and was given morphine for comfort and a medicine to paralyze his body so the vent could work for his tired little body. The medicine that would paralyze him will wear off, don't worry!

Holding Mommy's hand

"I'm sick Mommy"

My poor sick baby.

Day 33: November 30, 2011- No changes in Walker. His culture tested positive for an infection so at least we know the root of the problem.BIG CHANGES for Walker. Around 8 pm the NNP called and said that Walker's oxygen levels weren't that great and we needed to discuss transferring him. Thankfully, R and I had already discussed that when they brought up transfer that we would take him to Texas Children's. We carefully made our decision and actually R said by the first weekend in December if Walker hadn't made progress, that we would be transferring him either way. Another thing to be thankful for is the little birdie that felt compelled to tell us the night before what would happen when we asked for him to be transferred somewhere else. Walker had been on a high level of oxygen all day. His blood gases weren't good, he was put on a small dosage of Dopamine to help him pee which then led him needing Dopamine for his blood pressure, he was getting a blood transfusion and then before the transport team came, they had to put an IV in his head for morphine.

With everything that is stated above and the on call doctor, Dr. Patel, suggesting he be transferred we knew that we were about to start with the doctors. Dr. Bedi called and wanted to talk to R, fucking sexist like the man makes the decisions or something. Anyways, when R was on the phone with him he wouldn't like him get a word in and was saying that the transfer wasn't "medically" needed because all of sudden, Walker was doing a whole lot better. So better that he was on the highest setting on his vent and didn't come down, yeah right. This is what they do, they don't want to lose patients so they tell you everything is fine so you won't transfer them to a hospital where they have no control and are no longer Walker's doctors. Things got heated between Bedi and I when I got on the phone with him and that son-of-a-bitch had the nerve to ask me, "You are willing to risk the life of your child transferring him? He's unstable". First, don't EVER say that to me! EVER! I let him have it after that comment, that made me blow a gasket. Thankfully we weren't face to face because I might of slapped him. Secondly, my child is now unstable when you just said he was stable? Make up your mind. All in all, this Momma won and probably will be selling my soul to pay for Walker's first car ride in an ambulance. Literally.

My lid is open and Nurse Anne is getting me ready to leave!

"There's Nurse Anne! I really liked her. She took really good care of me."

"Daddy talking to me before I left"

"All strapped in and ready to roll!"

"My first ambulance ride!"

"My first time outside"
See those white folders? That is Walker's file, front and back! 

"And we're off!"

Day 34: December 1, 2011- TCH is a whole new world for us. We are the little fish in a new big pond. We don't have regrets making the decision for Walker, this is where he needs to be. Having a micro preemie is hard. You cry all the time, for the good days and for the bad days, for what his future may or may not look like. Watching Walker getting hooked up to all the monitors that we now have to learn what is what, is completely different. After birth he was whisked away and R watched all that. He was already hooked up when I was able to go see him in the NICU. I had a month at a hospital where I was already accustomed to all the machines and doctors and nurses.Walker's stomach was suctioned tonight and he had two syringes full of green bile. Anything green, is not good news. He was also tested for meningitis, where they go through your spine in the back.  My baby needs a damn break. He's working too hard and when he gets to a happy place, something bad happens again. I know he's a preemie, I know this common, but that doesn't comfort me. I can't believe I thought previous weeks were hard. Walker was weighing 3 pounds and 2 ounces yesterday and measuring 15. something inches. The weight gain is fluid weight.