Winchester and Charlottesville NICU

On Sunday morning, I was released from the hospital. Kayleen came to pick me up because Michael had a few errands to run before going to the NICU. We stopped at Walmart to get a few things and then we went home. I was in desperate need of a shower. So I took the fastest shower that I could possibly take given my state, semi-fixed my hair and out the door we went.

We arrived at the NICU, "scrubbed in" fingers to elbows and Michael and I were escorted to the end of a very long hall. And in his isolette, there he was under two bili lights. I cried when I saw him. They put him on a CPAP machine to help him breathe better. His face was swollen from the CPAP. I could barely recognize him.

Sunday, October 14, 2012

And then our nurse said it: "It's best if you don't hold him today!"

That devastating sentence that no mother wants to hear.

Leaving that day was hard. At some point, you have to leave. I felt like I was a bad mom if I left him. The overwhelming guilt of leaving him still makes me feel sick to this day.

Monday, October 15, 2012

 Day Two of the Winchester NICU: Still couldn't hold him. :(

Facebook post: "For those of you who don't already know, Cole was transported to the NICU in Winchester and is breathing with the help of a CPAP. They are still trying to get his jaundice levels down and clear up his pneumonia. Please add my sweet baby Cole to your prayers tonight."

Tuesday, October 16, 2012

Finally, on the third day, we got to hold him! :')

Going into the NICU experience, all I could picture were a bunch of sick babies in a big, open room. Really, I didn't know what to expect. But he was in his own private room, we had 24 hour access to him. We could sleep over if we wanted to. They had showers, a semi-stocked kitchen, computers and a family room. It really put our minds at ease.

Our biggest questions were: Why can't he breathe on his own and what was his estimated date of going home.

At first, the doctors thought his breathing problem was from the pneumonia. After several days of antibiotics, Cole started breathing better. He was only on the CPAP for a couple of days before they weaned him down to an oxygen nasal cannula.

Facebook post: "Cole is showing improvement since yesterday. His oxygen is almost on room level and I finally got to hold him for his feeding. :) please keep the prayers coming!"

Wednesday, October 17, 2012

Facebook post: "Our sweet baby Cole is doing so well! They removed him from the CPAP and is now on just an oxygen cannula! They increased his feedings and is only under one bili light! Thank you all for your prayers and kind words. Michael and I truly appreciate it."

Friday, October 19, 2012

Several days on the nasal cannula and they had weaned him down to nothing! I will never forget the day I walked into his room and he had nothing on his face. No CPAP, No Nasal Cannula, No Tape...just his NG tube for his feedings! AND his eyes were WIDE OPEN! He was like a real baby.

Facebook post: "No more bili light! No more arterial line! One more dose of antibiotics tonight and then they are taking his umbilical iv out! No more nasal cannula and I'm about to breastfeed for the first time :') :') :') I'm so happy!"

Saturday, October 20, 2012

Sunday, October 21, 2012

Facebook post: "Sweet baby Cole is 100% healthy! In order for us to go home, he needs to learn to eat! Please continue to keep us in your prayers! :)"

Monday, October 22, 2012

Tuesday, October 23, 2012
Facebook post: "Please continue to keep our new little family in your thoughts and prayers! Cole took 17ml tonight from a bottle! He's one step closer to coming home! :')"

Thursday, October 25, 2012

Friday, October 26, 2012

Saturday, October 27, 2012 

He ate 48ml by bottle! In the days before this, he had only been taking 10-20ml by bottle! On this day, our nurse told us to go ahead and bring in his car seat for his car seat test. Since he had been bottle feeding, gaining weight and was weaned from his oxygen cannula, that he would be going home shortly, probably within a couple of days!!!

Sunday, October 28, 2012

Michael and I took the morning to get Cole's crib put together.
(Okay...Michael put it together. I only helped a little at the end.) lol

We were SO HAPPY! Finally! We couldn't wipe the smiles off that day! We were so excited to bring our little man home! I called several times to check on him and he had taken several full bottles! Michael and I packed up the car seat and took the all-too-familiar drive to Winchester.
 
After spending the day with Cole, I swaddled him up and laid him in his crib. He was sound asleep, so I kissed his sweet forehead and put the side of the crib up.

We left that night in between shifts and went down to the lobby to meet up with my grandparents! I hadn't seen them since I had Cole and was so thankful they came to visit me! :') While talking with them, I had a bad feeling. So on the way back to the car, I told Michael I was going to go back and check on him. When I walked into his room, I could see the nasal cannula taped to his face. The night nurse was in his room charting and even though we had never met, she held out her arms and I collapsed into them. I was so sad that we were going backwards. They warn you constantly not to celebrate too much because it's not uncommon for them to backslide. But you never want to believe that!

Monday, October 29, 2012

Facebook post: "Cole was put back on oxygen last night. They did a chest xray this morning and his lungs were still hazy. Please continue to pray for our little man. We want him to come home! :("

I worked all day and drove straight to the NICU afterward. I had been calling for updates all day. He was still on the cannula and throughout the day, they had to keep turning his oxygen up. His doctor decided to do an echocardiogram to see if there was anything going on with his heart. He came in to his room when I got there that night to tell me that he has a Patent Ductus Arteriosus.

HUH?

He tried to explain it to me but I was stuck on the fact that he had a heart problem. He told me he was going to try a round of indomethacin to try to close up the "hole."

As soon as Dr. Lee left the room, I turned to Google.

Patent Ductus Arteriosus (PDA) is a congenital heart disorder where a newborns ductus arteriosus fails to close, as it should, within the first couple hours of birth.

Tuesday, October 30, 2012

The next couple of days, he was given the cycle of indomethacin (indocin) which required an empty stomach. He did fine with it. He wasn't inconsolable as I was told he might be. He was just his normal, sleepy self.

Wednesday, October 31, 2012

Facebook post: "Cole had an echocardiogram done yesterday and they found that he has a PDA. They were thinking that was the reason he isnt breathing properly but they did other tests yesterday and determined it wasn't effecting his breathing. Please pray the PDA fixes itself and his lungs begin to mature quickly! I want to bring our little guy home :("
 

After working all day, I couldn't wait to get to my sweet baby. It was his first holiday! Halloween! I got to his room and OH. MY. GOODNESS. He was in a little Halloween outfit! SO CUTE!

Thursday, November 1, 2012

I had taken the day to spend with him, anxiously awaiting the results of his echo to see if the hole had closed or not. Finally, around 3pm, Dr. Lee came in with the good news! The indocin had worked! The hole in Cole's heart had closed!

Friday, November 2, 2012
Cole was doing well since the hole in his heart had closed but he still wasn't breathing on his own. Dr. Lee told me that they would keep checking his blood work to keep an eye on everything and if his breathing didn't get better within a couple of days, he would re-do the echo to see if the hole had opened back up.

Saturday, November 3, 2012
I had stayed the night in his room and took every opportunity to snuggle with him! They ended up doing another echo and determined that the hole in his heart had reopened. They decided on another round of indocin to try to close it again.

Facebook post: "Please continue to pray for my sweet baby today. They are starting the medicine to close the hole in his heart and withholding feedings for at least 36 hours."

Sunday, November 4, 2012

I had stayed the night again. They had to keep turning his oxygen up throughout the night and by morning, he was on the highest flow. Dr. Lee came in during rounds and gave him a thorough look over.

"I am very worried about Cole. He's a sick little boy. He has me stumped and I cannot figure out what it is that is causing his breathing problem. As it stands right now, he is on the highest flow of oxygen. The next step for him is back on the CPAP and I'm not okay with that. He should be home by now."

Dr. Lee made sure I understood the next course of action if he got any worse. As he and the other doctors were walking out of the room, Cole's triple beat alarms went off. It seemed like they never stopped. My nurse and all the doctors came flooding in. They worked on him for quite some time..

Dr. Lee came over to me and told me that looking at his blood work and how he is doing right now, that he was in heart failure.

Kayleen came to visit him for the first time! :')

Monday, November 5, 2012

HOLY BREAST MILK! lol Every nurse that came into my room always complimented me on how much breast milk I had...lol It's a very awkward thing to be complimented for...lol

Wednesday, November 7, 2012
My sweet little baby just kept getting sicker and sicker and the nurse had called me at work to tell me that the Indocin did not work this time.

Thursday, November 8, 2012

I woke up that morning with a HORRIBLE cold sore. I had to go to the doctor and he lanced it open from the inside of my lip because it had become the size of a golf ball. My doctor said stomach virus, lack of sleep, poor diet and overwhelming stress were all triggers for me. He said it was by far the worst cold sore he had ever seen. He gave me some medicine to calm it down and an antibiotic because they had to lance it.

But then came the worst news ever. When I got to the NICU, they told me that I could not visit until it had completely scabbed over because if Cole caught it, it could be deadly to him. :(

Facebook post: "Please continue to keep our family in your prayers. They are continuing to wean his oxygen and he's still working on eating!"

Sunday, November 11, 2012

By this time, my cold sore was well on it's way to healing. I could visit my sweet baby! He wasn't feeling well on this day! :( He was so tired from trying to breathe.

Wednesday, November 14, 2012

Walking in, we knew that they had to re-do his IV which was never easy for Cole. They always had a hard time getting a vein because they roll. Unfortunately, they had to put it in his scalp.

Dr. Lee came in to talk to us. He said that he was going to order an echo for first thing in the morning and go from there. He told me that I needed to decide which hospital to send Cole to if it came to surgery to close the hole in his heart. He gave us a list of hospitals to decide from.

Thursday & Friday, November 15 & 16, 2012

Thursday morning, I was at work and I got a call from Dr. Lee saying that it was time to move Cole. There was nothing else that they could do for Cole and that he may need a PDA ligation (surgery to close the hole in his heart.) I told him that we had decided on UVA. He told me that he would get the ball rolling and that they would be on their way to get him.

I immediately called Michael and thankfully he had a short day at work so he was already on his way home.

I don't even remember that drive home for me.

I got to the house and started throwing clothes and bathroom necessities into a suitcase. I can remember walking around aimlessly, not knowing what to pack or for how long. Before I knew it, we were out the door, on the way to Winchester

When we got there, our nurse had all of Cole's belongings packed up and he was ready to go.
Dr. Lee came in and made sure we understood everything that was going on.

I sat and held Cole like I'd never see him again. I knew I'd be reliving the transportation nightmare all over again. I suddenly felt anxious. I didn't want UVA to come. I wanted to just sit there and hold my baby and wait for all of this to go away. I was shaking when we got the call that they had arrived to the hospital.

But when the team from UVA walked into his room, I felt relieved. I didn't feel like they were there to steal my baby. I actually felt happy to see them. I was smiling!

They checked Cole over to make sure he was stable for transport and let us kiss and cuddle and love on him before they put him in their portable isolette.

I watched them walk him out the door and down the hallway. I turned around, looked at his empty room and then at Michael. This was the first time he had been out of that room in a month. It was weird to look at that room without seeing him in his crib.

Michael and I gathered Cole's stuff, our nurse brought us all of my breast milk that I had stored there. 68 full snappies! That's crazy! And there was more in their freezer but they let us keep it there until we came home. Finally, we made our way to the car. We were leaving for UVA. As devastating as the NICU experience was, I was sad to leave. I never want to forget those days, even if they were nightmare-ish most of the time. That's where my son got his start, his first bath, ate his first bottle, where I saw his first smile.

Even though we were extremely scared, Michael and I knew that surgery was what was best for Cole. We stopped on the way to Charlottesville and took a picture in front of the overlook...and I'm so happy we did. Michael and I were okay. We had been thru a lot in the past month but we were okay. We were ready to get Cole the help that he needed.

We arrived at UVA and went straight to the NICU. We had to re-learn how to scrub, their entrance and sign-in procedures and new rules. And finally, we got into the NICU where my sweet baby boy was. They had him under a warmer in the critical care section. Not strapped into anything, no nest, not cuddled with a blanket or laid on a water bag. He was in an open room with tons of other babies, people flying around everywhere. It was not what I had expected. My baby needed peace and quiet to heal and he was in the loudest room in the hospital. I might as well had taken him down to the cafeteria. :( Sitting in critical care was hard.

We were unable to secure a room at the Ronald McDonald House that night so we had no where to go. We had no money for a hotel room since we had been traveling back and forth from Martinsburg to Winchester every day...our savings was well drained. The social worker for the hospital had asked us if we had gotten into the Ronald McDonald House and after she learned that we hadn't, she set us up in one of the rooms they had there in the NICU for parents.

Facebook post: "For those of you who dont know, Cole was transported to UVA today. Were hoping for some answers tomorrow. Please keep my sweet baby Cole in your prayers."

We went to bed late that night and the next morning, I was back with my sweet boy. My nurse told me that Cole had done well overnight and had done all of his feedings by bottle! WHAT!? I was so proud! I, of course, asked about them putting another NG tube in so he could rest in between bottle feedings. His nurse said as long as he ate his bottles, they saw no need for an NG tube. That made me nervous but I trusted that they knew more than I did. I only knew what I was used to and the NG tube is what I was used to! She also told me that he had come down from a 5 flow to a 1 flow. She told me that he was almost on room air. WHAT?!? He came here in heart failure and just all of a sudden, he's getting better? I couldn't process that.

While I was feeding Cole, one of our nurses from Winchester called to check on us! :') At that point, I was semi-losing it. The wide open NICU was more than I could handle. I was used to extremely quiet, no talking, no noises, no beeps but Cole's and I was bombarded with TONS of noise! And to make matters worse, I wasn't able to pump in private. I had to go to a pumping room with several other moms, sometimes you had to wait in line. It was crazy. Thankfully, they moved us to the back since Cole wasn't an emergency case anymore. The back rooms were semi-private. They were still wide open but they were sectioned off and Cole had a crib and a privacy curtain.

We kissed Cole's sweet head that night and went for dinner and to check into the Ronald McDonald House. I don't even know what I was expecting that night walking into the RMH but I have NEVER been so thankful.

For those of you who don't know, The Ronald McDonald House is for the families of children ages newborn to 18 to stay, worry-free, while their child is in the hospital. They do ask for a $15 a day donation but they will not turn you down if you can't pay. You are given your own private room, much like a hotel and you share a bathroom with the people across the way from you. There is a full kitchen with your own areas to put your food. A living room with a TV and a playroom for the other children. They also had washers and dryers that you could use free of charge along with laundry detergent, fabric softener and dryer sheets. Clean clothes was definitely the farthest thing from my mind when packing for UVA.

Saturday and Sunday, November 17 & 18, 2012

Michael's parents ended up coming down to stay with us for the weekend. And Michael's grandmother, aunt, uncle and two cousins came up from Southern West Virginia to see us as well! It was nice to have a lot of support while we waited to see what the doctor had to say about Cole.

Facebook post: "Update on Cole: Still here at UVA. He has been doing all of his feedings by bottle. He is still on oxygen but the doctors arent sure why he still needs it. If he hasn't weaned by Thanksgiving, they said it will be time to look into doing the surgery. Please continue to pray for our little family."

Monday, November 19, 2012

Michael had to go back to work so he left Sunday night with his parents. I stayed back with Cole and waited for the doctors to make rounds Monday morning. When they came around, they were pleased with his respiratory levels and gave the okay to remove him from the nasal cannula. I was so excited but so confused at the same time! I didn't understand how he went from heart failure to no oxygen at all in a matter of days with no changes made. UVA wasn't doing anything different than Winchester had done.

Tuesday, November 20, 2012

On Tuesday, the nasal cannula was removed and Cole's levels were staying up, he had very few desats and was feeding well. To add to my excitement, my grandparents were coming to stay with me for a couple of days!

Wednesday, November 21, 2012

Granny and Pappy had arrived late Tuesday night so we went for dinner and came back Wednesday morning! This was the first time Granny and Pappy had gotten to see Cole since he was born. :')

Facebook post: "Day 2 off of oxygen and doing great. He's had less desats today than he did yesterday. He received his last dose of Lasix today so the true test begins: can he continue to breathe on his own without it? Baby Cole and I miss Granny and Pappy but we can't wait to see Daddy in the morning :) hes going to be so proud of his big boy! :') prayers please :)"

Thursday, November 22, 2012

Granny and Pappy had to go home for Thanksgiving to be with the rest of the family but Michael was able to come back to be with us for Thanksgiving! We had a very nice dinner at The Ronald McDonald House and the three of us were able to be together. Cole was doing very well and the nurses and doctors started our discharge process by giving us reading material, telling us what classes to sign up for and such. We were so excited!

 My Aunt Chris sent us this picture of the little grandkids saying: "Wish you were here!" That really meant a lot to me. It was very hard to be away from our families during the holiday but The Ronald McDonald House and the support of our families really helped us get through it.

Friday, November 23, 2012

Saturday, November 24, 2012

Michael's parents came down to spend the weekend again and Tana, Michael and I took the CPR training for discharge. It was hard not to get excited since we had been at this point before but we were. It's hard not to.

Facebook post:  "For those of you who know me well, you know how hard it is for me to be away from my Charlie. I hope he forgives me for leaving him all this time but I know hes well taken care of! Thank you for putting your life on hold to take care of my first born. I am so thankful for my sister! :')"

Sunday, November 25, 2012

Facebook post:  "Tomorrow is decision day! The doctors will be redoing his echo, chest xrays and bloodwork to see if he needs heart surgery or not. Please keep our little guy in your thoughts and prayers tonight!"

Monday, November 26, 2012

Michael went back to work and I stayed back with Cole. When they made rounds that morning, our doctors talked for a long time and decided to release him the following day! Woot!

Facebook post:  "WE ARE GOING HOME TOMORROW! :) :) :)"

Tuesday, November 27, 2012
Our nurse began by taking all of his wires off. The first time in 40-some days I had held him with NOTHING on. He was free! Our nurse helped us pack Cole up, all of his clothes and blankets and out the door we went.  :)

 Facebook post: "I want to take a moment to thank our friends and family, acquaintances and perfect strangers for every kind word that has been extended to Michael and I. We are truly overwhelmed by the amount of support we received during the 46 day stay in the NICU, transports and the stressful rollercoaster of health concerns Cole faced. Thank you to those who prayed and continue to pray for our sweet baby Cole.... Thank you to those of you who let us know you were thinking of us, sent us a text, brought us dinner, sent gas cards, collected money, wrote a status, put us on a prayer list or simply showed your support by "liking" an update status about Cole. Thank you to my sister for taking such good care of Charlie. That was such a relief to know he was taken care of while we were with Cole. Thank you to both transport teams who let us be with Cole until the very last second, answered all of our questions and made a very stressful situation a little bit easier. We are grateful to both of the NICU teams. Every nurse and doctor took the time to explain everything Cole was going through until we understood and made it easy to get an update when we weren't able to be with him. Thank you to the Ronald McDonald House in Charlottesville for giving us a place to stay while at UVA. Michael and I are forever changed by the compassion and generosity we've been shown and can't wait to pay it forward."