Days 65-69

Day 65: Sunday, January 1, 2012- Happy New Year, Walker! This is just the start for us! You will have a fabulous year, I just know it!

We skipped another night because I'm still not feeling 100% and R has a sore throat. Walker is still on CPAP but is on room air and we don't want to get him sick. Room air is 21% and that is what you and I breathe.

Tonight at 6 pm, they increased his feeds to 15 cc; that's half an ounce. We're making progress! Our little bird was having some issues gaining weight because they were lowering his TPN and trying to increase his feeds and was having trouble evening out. He is now weighing 3 pounds 6 ounces.

We call all the time since we are unable to go. All. The. Time. So much that the last time I called, 5 minutes ago, she said: "When was the last time you called?". She was trying to see if there were any changes. I think it's funny.

Walker is measured every Sunday and today he is 16.5 inches long! Long and slim!

Day 66: Monday, January 2, 2012- You are having a feeding intolerance kind of day today. Or so say the new doctors. Who by the way, don't call like Dr. Keaney did and let me know when things change or what's going on. I don't appreciate that all too much. Come back, Dr. Keaney!! Okay enough, I know...

He's up to 15 cc and they had to hold two of his feedings last night and one this morning. They hold the feedings if he has more than half when they pull his residuals. When I say hold what I mean is, they check how much was left in his stomach. If they can tell that the it looks like it was starting to digest they call the doctors and most of the time they put it back in. This afternoon they put him on a drop that was an hour instead of thirty minutes. This happens in preemies. Sometimes they just need more time. 

Walker has ROP (retinopathy prematurity). It's been at mild/moderate but it's to the point now where we need to decide on a treatment to prevent it from progressing. We've decided to forgo laser surgery, where he would be put under, in a operating room and lose his peripheral vision. We choose to have both eyes injected with Avastin at the bedside. He will have that tomorrow.

So, unfortunately, at the 9 o'clock feed, Walker had a lot of residuals so the nurse contacted the doctor and they decided to lower his feeds to 11 cc and get an x-ray. When we called at 10 the doctor had not contacted the nurse.

I usually have a gut instinct about things and my gut is just saying that the feeds were increasing too fast. Walker is stubborn like his Momma...and Daddy!

Day 67: Tuesday, January 3, 2012- I got a phone this morning at 1 am saying that feeds had been completely stopped and that Walker was receiving TPN to fulfill his nutrition needs. The residuals were coming out too high and they ordered an x-ray to look at his stomach. There's not air in the gut so they think he has a blockage or another hole. Needless to say, I've gotten little sleep filled with horrible dreams. Please, God, don't let it be another hole or blockage. Let it be a feeding intolerance. I can handle that.

I called at 3 for an update and Walker is getting his eye procedure so I'll have to wait to hear if he's had his upper GI yet. What a horrible day for a special little baby.

This is NOT how I thought the beginning of the year would start out. I'm ready for Walker to get on the brighter side of the street.

Walker's upper GI has been moved to tomorrow morning. The eye procedure and the GI were too close together in times and they didn't want to upset him that much.

Day 68: Wednesday, January 4, 2012-

We had to make a deposit to the milk bank today. Our outside freezer is full and these 50 bottles that I took, didn't even leave a dent in my supply. The milk bank can't accept anymore because my spot is full in their freezer. We are having to buy a deep freezer to keep storing all this milk. I pump during the day every two hours. It's my job. Whenever Walker starts eating full feeds, someday, he will be well supplied that, who knows if we will actually breastfeed.

Day 69: Thursday, January 5, 2012- Fabulous news! Dr. Naik, Walker's surgeon, came by today to discuss his screens that showed the blockage. Her recommendation was to insert a feeding tube that goes through his nose or mouth, directly pass his blockage and to continue feeds. I'm ready to plump this boy up! Walker will not be going back to surgery to connect his intestines for four more weeks, so he will be eating, (praying for NO MORE COMPLICATIONS), for FOUR weeks! We will definitely be seeing a weight gain and releasing some of the bilirubin that is building upside of him.

Walker looked so cute tonight. He's starting to make sounds and tonight he was making that grunting "I'm in heaven" sound when sucking his pacifier. LOVED IT!

I held Walker tonight and he was opening his eyes and playing "peek-a-boo". He even gave us a smile! When it was time to put him back in his bed, he was not happy. He was crying and desating and his heart rate was high. He was really upset! 

He's doing very well and I think this is a full second day where he is on room air! Next step: nasal cannula.

Walker is weighing 3 pounds 8 ounces. He gained two ounces!

The NICU Rollercoaster Ride

UGH! Our NICU is a rollercoaster ride for sure!


Walker has ROP (retinopathy prematurity, google it) and we opted out of the laser surgery treatment for the injections of Avastin in both eyes. Seems to be working. Crossing fingers. The reasons for not choosing laser surgery, that is the most common procedure for ROP is because Walker would definitely lose all peripheral vision. He would have to be intubated, taken to the OR and put under anesthesia. We didn't want to subject Walker to another surgery when there are other options. The injections of Avastin, often used for cancer treatment, is not approved by the FDA but studies have been done that have seen a great regression in ROP. So we went for that. We know that we are a fantastic hospital and that they have many treatments that aren't approved by the FDA and as Dr. Steinkuller said, "They aren't approved, because, well, we don't ask for them to be". This is the second study that Walker is a part of.

Making these decisions weigh heavy on my heart. We pray we are making the right decisions and choices for Walker. I research everything that they bring up. I speak with the nurses, my friends that are nurses, The Bump Preemie board, and I pray.

Walker started having feeding intolerance and we found out tonight that there's a blockage. Thankfully not a hole like they suspected, but a blockage means very minimal feeds for at least 3 weeks until they are able to go back and connect everything and take the blockage out. This would mean in possibly three plus weeks, he would go under anesthesia, be intubated (anytime a baby goes under anesthesia they are intubated), and he would have recovery time. It took about two and half weeks for us to try feeds again. I've calculated this all out and he would be feeding again in 20's of February some time. A couple of days ago, our hearts really thought he would be discharged earlier than we expected and then this all occurred. Who knows when we will be able to talk Walker home and for him to be completely off machines and on feeds. 


We haven't spoken with the surgeons yet. They could come back and say something completely different. He will be on full TPN, which is horrible for the body for long term periods; that's why he's on omegaven. He's yellow. Some many other things....

I look at Walker and I see complete beauty. He is a gift and he is gorgeous! When they talk about all these things happening I look at my baby and in my head I'm thinking, "They are talking to the wrong person. Look at him, he's perfect".

Then I think about "what the hell happened to my beautiful pregnancy followed by a healthy, beautiful, full term, baby boy". I was robbed.

And then I think about my Bump friend and how she lost her twin boys a short while after having Walker. They were preemies also. I think about my friend losing her baby about the time we found out we were having a boy. And we have Walker here. We give praise, even when we don't want to, we give praise for having Walker here another day. We give praise for the littlest of things. But the biggest thing we give praise for, is that for some unknown reason, God choose us to parents to this amazing little boy.

Happy New Year!

I love New Years. Not so much the partying aspect but the whole concept of starting a brand new year. It's a fresh start. When the clock strikes midnight, leave all those problems in 2011.

2011 was a great year for us. We celebrated our two year anniversary, I graduated with my Bachelors,we found out we were expecting our first baby, R started his fourth year in his apprenticeship, and much to our surprise, we welcomed Walker a little earlier than planned.

I could not be happier to start 2012. My baby will be home hopefully in the next couple of months. Our lives will change for the better. The quietness will soon be replaced with a crying infant. There will be little piles of baby clothes to wash every day. The house will smell of a baby. And we can't wait!

We can't wait for all of Walker's milestones, his first birthday and the holidays at home with him.

We hope that the new year brings you good health and a year full of great memories. Don't forget that this is a leap year, so take that extra day and make it count.

Much love to you all!

Days 60-64

Day 60: Tuesday, December 27, 2011- Anxiety and tears have set in. Dr. Premkamur transitioned out yesterday and said goodbye to R when I was at the milk bank. Just now Dr. Keaney called and gave me an update and said goodbye. I had to swallow down the lump in my throat. I am so sad. I HATE goodbyes more than anything in this world. I don't think of these doctors as doctors, they are our friends. We see them and the nurses, and the hospital for that matter, more than we see family or friends.

They decided to play with Walker today. He's on room air and using the tube like a CPAP. They are going to try to extubate him today. I'm not telling anyone. If we show up and you are, what a surprise for Daddy!

He was surprised! You are on CPAP! You are doing well too! So happy! The nasal plugs came out and you were holding up pretty well by yourself. I'm so proud of you little bird.

Surgery is talking about starting feeds tomorrow, Daddy isn't so sure about that. He thinks it seems too early or too fast.

Day 61: Wednesday, December 28, 2011- Happy 2 month birthday, Walker! Like your new monthly ties? So cute, buddy!

Walkie Talkie, you are SO loved! Today Auntie Jenn came to see you while in town from Colorado. She brought you some cute clothes too and a little bracelet with your name on it. Andy came to meet you also. He brought you a Texans football and Astros bib, pacifier and bottle.

You are doing very well on CPAP. Tonight at 6 pm, you will get your first feeding since surgery. I think his last feeding was 10 cc about a month ago. That's right, folks, Walker is starting feeds again. Prayers, prayers and more prayers.

Walker still loves his paci and I think he is so happy to have it back! Dr. Dariya rounded with the new doctor, Dr. Rhee, and the rest of the group. Dr. Dariya was SO excited that you were doing so well on CPAP and told me about starting feeds. I'm going to miss him. He is the last go from the group. Tomorrow is his last day.

I decided to forgo holding you tonight and let Daddy. He was SO excited! His heart was racing, he said. He was really nervous and when Nurse Esther asked if he was comfortable he said, "I don't know I've never held a baby before. Am I doing it right?" He has held a baby but he was just so nervous! You loved it too! You fell asleep and when we put you back in your bed, you didn't even mind the lights being turned on. You love us and we love you!

Day 62: Thursday, December 29, 2011- You are doing very well, my little bird. Aunt Julie and Aunt Judy came to see you and to their surprise, Daddy was holding you again. No changes, you are taking your feeds as they come. Sometimes they have to skip a feed and re-feed what was left in your stomach, but the good news there is that it looks slightly digested. You just need a little bit more time and by the next feed, you are ready for some more! SO PROUD OF YOU!

Yesterday, the surgeons came to stitch up the stoma since you are passing stool through a "man-made" hole fine. Nurse Courtney said that they were digging and taking out stitches in your incisions and really messing with you today. You got a nice dose of morphine to relax you. Thankfully you had a nurse there that you like, since Mommy wasn't able to come up during the day.

You looked really yellow today. I'm not sure if that's from the Omegaven or your liver but I will be checking on that tomorrow.

Day 63: Friday, December 30, 2011- Happy 9 week birthday! You are 34 weeks GA (GA= gestation age, have I told you that?)

At 6 pm they started feeds of 8 cc. Crossing our fingers, toes, eyes and anything else we can cross, that all goes well. We need to plump you up!

Mommy had a field day shopping for you. It's a little hard because preemie is too small at the moment and you can't even wear clothes. I don't know when you will be able to. Maybe after surgery to reconnect, but even then the surgeons need access to your wound area. Patience Momma, patience.

Anyways, I went out and bought you a couple of things to put in your closet. All newborn because you will be in that for a while, we are assuming. I do have to say that you might be the best dressed little boy.

Look at this picture Aunt Julie sent me.

It's safe to say, YOU LOOK JUST LIKE DADDY! I can't wait for you to get bigger so we can compare this picture to you.

No residuals after your first 8 cc, so you got another 8 at 9 pm.

Day 64: Saturday, December 31, 2011- Mommy was concerned that you are losing weight at a pretty rapid pace. Last night you were 1480 grams, which is 3 pounds, barely an ounce. I had your nurse ask the doctors today and they aren't extremely worried at the moment and have decided to increase your feeds to 10 cc.

They've decided to put your feeds on a pump that goes for 30 minutes to see if that helps you digest the whole thing easier. At 6 o'clock you didn't have any residuals. You just need time. Everyone is in a rush. Not us sweet pea. Whenever you are ready.

Mommy is particularly upset tonight. This is the first night in your 64 days of life that we have been a part. I'm sick. Daddy's sick. You have your Nana, Papa, Uncle P and Great Grandparents to blame for that. That house is constantly filled with someone who is sick. Mommy is so sad to not see you. Don't worry though, I'm making Daddy call regularly to check up on you. Mommy barely has a voice. 

Days 55-59

Day 55: December 22, 2011: Last night you had two doses of morphine. You are not a very happy camper. Everything else with you is fine. I just think you are tired of the breathing tube, which is understandable. Nurse Courtney let you suck on her finger today and you really enjoyed that.

How am I forgetting this? Dr. Arnold stopped by with the camera crew when you were desating. You keep moving your breathing tube either too far down or pushing it up. Patience my little one, patience. Everyone thinks you are the cutest thing with your little Santa hat on. Tonight, you were pulling it down over your eyes and getting upset when Mommy would pull it off.

You had a HUGE stack of letters from all of your friends! And then when Mommy went to pump, she came back to even MORE letters! You are so loved! Even the nurses were fighting over who's baby you were!

Day 56: December 23, 2011: Happy 7th week birthday, Walker!

Tonight we celebrated Christmas with Aunt Julie and Uncle Tim. Mommy and Daddy got Love You Forever with a sweet note in the inside. Daddy bought that for NeNe and she would read it to him and cry each time. Tonight when he read it to you I was surprised he was doing so well keeping it together. When the son holds his sick mother, he stopped and got choked up. I don't think he ever thought he would love you THIS much. You are so very special to us.

Tonight we learned that Walker is pooping..YAY.. but that it's not coming out of the stoma. It's coming out before and they think that there's a hole. They are going to follow up with Dr. Naik  tomorrow and see what she says. I really hope she doesn't ruin my birthday and say you need surgery again. You are doing so well.


Day 57: December 24, 2011: Mommy's 27th birthday! Papa's 60th birthday too!

Papa is 60!

Day 58: December 25, 2011: Merry Christmas, Walker! Someone was a very good little boy these past 2 months! You got so many presents from the people who love you! You got: books, toys, blankets and clothes.

Day 59: December 26, 2011: Well sweet thing, the talk about extubating you today is now over. They aren't. You started to have some Brady's before they got there and they want you a 100%. They think it's the position of the tube and not you, so that's positive. I think that too, but was silently hopeful that today would be the day. I cried in the milk bank after finding out the news.

Dr. Pemkamur transitions to research tomorrow and in steps your new doctor, Dr. Rhee.

Mommy's anxiety has fully arrived. All your doctors are leaving us and I'm finding it hard to breathe.

Days 50-54

These pictures were taken last week and I had full intentions of using them for our Christmas cards, but time got away from me and no Christmas cards this year...again!

Day 50: December 17, 2011- Walker is off his blood pressure medicine completely and his urine output is looking good. Hopefully he can keep it up. His fentanyl was lowered to 3 mcg, we started at 5 after surgery. Slowly but surely. Today he was a little more swollen compared to yesterday, but he's still the sweetest thing!

Starting to be more active. Holding Mommy's hand. His hands are identical to R's. Even the nail beds.

Day 51: December 18, 2011- Walker was so alert today. When we arrived his eyes were wide open and I got some really great pictures. His fentanyl, pain medicine, is at 2 mcg. Pretty soon he will be off! They gave him Lasix to help with the swelling and his urine output is really good. He's still pretty swollen but he looks better. 1 antibiotic is going and they will assess tomorrow when they want to stop or start a new one.

"Mommy! You're here!"

"No big deal, I'm Mr. Cool!"

"You're going to sing a song?"

"Do I like Twinkle, Twinkle?"

"Oh yeah, I love this song"

"Twinkle, Twinkle, again I demand!"

A really nice nurse secretary came by and asked if she could make Walker a sign. So happy!

Day 52: December 19, 2011- Walker was so cute tonight. He was showing us that not only has he grown but so has his little tongue! He was sticking it out and showing us. He still loves his fingers and I'm sure he can't wait to get a paci. His fentanyl was lowered to 1 mcg and hydro cortisone was discontinued. The bacteria that was found in Walker's belly was serratia. I googled it and found out that it could be deadly.

When we arrived there was a goodie bag to Walker and Mommy. Inside was a crocheted pair of booties and beanie. Can't wait to put those on him! A stocking, beanie baby, Bible, a charm in the shape of a baby boy with his birthstone in the middle, and a heart. All this was donated by the W.E.L.C.O.M.E Baby Ministry from First Baptist Church Pearland. W.E.L.C.O.M.E. stands for = Welcoming Every Little Child is Our Ministry's Endeavor. On the note in the bag it states, "W.E.L.C.O.M.E. was founded as a direct result of one mom's NICU experience with the loss of premature twins and later, a premature survivor."

They are great people in this big world. Some that are closer than we think.

Thank you FBCP! And Nurse Stacie from the previous hospital, whom I also went to high school with, has been such an amazing friend. I think Walker has won her heart! She arranged for us to get this care package and also has bought Walker a little something.

Today is your Aunt Megan's 28th birthday. I know she is your angel and is always with you. She gives you strength when you need it and comforts you when Mommy and Daddy aren't there. If she were here today, she would love you probably as much as Mommy does. She was an amazing friend and an overall great person. I've never seen anyone fight like her, well, until you.

Day 53: December 20, 2011- Walker had visitors tonight. Aunt Julie and Uncle Tim stopped by to see our Little Bird! Of course, Walker was sleeping. He started waking up just as they left. He's such a funny baby!

Today we had poop! That is such good news! He had poop in his colostomy bag, which means things are moving and working properly.

Walker's arterial line was removed today as well! That means that they don't need to monitor his blood pressure constantly. Little milestones!

They were also able to lower his vent settings. Pressures are 30 over 6. I have complete faith that with the swelling going down that he will be on CPAP in no time!

Walker weighed 4 pounds and half an ounce the day before yesterday, with Lasix, he was able to pee out most of the fluids and weighs 3 pounds 8 ounces.

Acting like a funny bunny!

Stretching!

Smiling at Mommy and Daddy!

Day 54: December 21, 2011-Walker had a good day today. No changes at all. We LOVE his Nurse, Courtney. He's a little flirt and when he hears her voice, he smiles!

Walker's little Santa hat that was a donation! 

I forgot to add this tidbit, the other day I posted this link: http://www.texaschildrens.org/parents/patientgreeting/default.aspx

You can write a little note to Walker and it's sent to his bed side. He had 6 letters today! They were all so sweet and made me teary eyed. He is such a loved little boy and we can't wait to share him with all of you!

Days 45-49

Day 45: December 12, 2011- Walker was scheduled to have his exploratory surgery today and as R and I were on our way the doctor called and said they were going to give him more time. They wanted to try an antibiotic to see how things go and we would wait for 2-3 days. Perfect! We arrived to the hospital in good spirits. Walker's in an open warmer and has been desating, we thought it was all the noise and the new bed he didn't like. They came in and bagged him to see what pressure he would need. They upped his pressure once. Then the desating happened again. Turned him up. All the way to 30 over 7. When he arrived at TCH, it was at the highest at 34 over something. They ordered a blood gas and also are doing a blood culture to check for infection. I'm sitting on the couch reluctant to call. I know what they are going to say. When we left he was already getting started on three antibiotics.

Walker is also taking part in a study for Omegaven. It is a fish oil based lipids that is better for the liver. Oh, did I mention that Walker's liver is sick also? Mildly so. Being on TPN, which keeps him alive, does damage to a person's liver if kept on too long. TCH's Dr. Abrams, along with Dr. Puder from Boston, have started a study in the states using Omegaven. Supposedly it does wonders for the liver.

We went for some retail therapy after the roller coaster day we had. 

Walker's stocking to put on his bed.

  Cloud B Giraffe on the go. He has a Velcro hook that we plan to keep on his bedside and when he goes into a crib. It plays soothing music and has a timer.

Day 46: December 13, 2011- Well, sweet baby. We arrived to your bedside to find your tummy VERY swollen, red and shiny; which is not a good sign. Surgery was inevitable. We waited and waited and waited. Finally at 12:30 am you went in and didn't come out until 4:30. Mommy, Daddy, Nana, Aunt Sissy and Aunt Julie were all waiting for you.

He had two holes, one at the bottom of the stomach and was easily reconnected with stitches. The second hole was by the colon and had to be removed. 8 centimeters to be exact. He has a colostomy; something we prayed he wouldn't need. Time will tell and they think he will get pretty sick in the next couple days while his body heals. He'll have another surgery in 6-8 weeks to removed the colostomy bag and reconnect his colon and intestines.

They have speculation that Walker did indeed have NEC at the other hospital that went unnoticed. 

They've prepared us that when we come tomorrow that he will be very swollen for a couple of days and he is expected to be very sick. 

We know that this is what he needed because after surgery his tummy was very flat and he looked like a baby, with a big incision. You could tell that he was uncomfortable. We are hoping that this is the start of Walker improving and progressing in the way he should. There are still possible complications from the surgery. 

Getting bagged for the ride to the OR.

Reaching the OR doors

Going in

There he goes

 

Day 47: December 14, 2011- Today sucked. Walker is on blood pressure medicine, pain medicine, more blood transfusions (yes, that's correct. Plural as in more than one. I believe 3 since surgery). It was really hard to see him. Hopefully these next couple of days go by fast because I hate seeing him like this.

Day 48: December 15, 2011- Walker was taken off of the blood pressure medicines. His blood pressure is doing well and they may be able to lower his dosage a little tomorrow. His vent settings are good and as of 10 pm tonight, his blood gas came back pretty good. His nurse thought they may lower his settings. Walker looked really good tonight. He opened his eyes and gave a half smile when I talked to him.

The saddest thing for R and I is you can really tell that he was in pain from his stomach. He just looks relieved and is acting like he does feel better. We are praying for his recovery to be fast and exactly what it is supposed to do.

My sweet angel baby.

Day 49: December 16, 2011- Happy 7 week birthday, Walker!

Walker is making little strides daily. Today he was weened off two of the three antibiotics and was also weened down to a very small dose of his blood pressure medicine. He was smiling and opening his eyes when R and I would talk to him. He is the sweetest little baby and his nurse today confirmed that before we even said it! His tummy looks really good compared to the previous days. The veins are not as prominent as they were. He is still sick and his intestines are healing.

We're just praying for a speedy but complete recovery with little to no complications.

Covering his eyes while Nurse Kristen assesses.

Daddy thought this was funny!

I'm 32 weeks GA and 7 weeks old!

R at the Christmas decorations.