"Just Me and My Boy" (12/18/13)

It was Wednesday morning in the Ronald McDonald house.  We woke up, got ready, and headed down to the main kitchen to grab some breakfast.  We slept pretty well in our new ‘home’.  After going through the loss of Colin, I thought that I would have trouble sleeping but I hadn’t.  I slept fairly well.  It is probably because I usually cried before I fell asleep over the loss of my baby and that in it self just wears me out.  I would still get up twice in the night to pump but other than that, I had no problem sleeping.

Good Morning Nathan! 

We made it over to the NICU around 10ish.  Soon after we would arrive, the Fellow named Rose would come over and give us an update on our little boy.  She would give us all the numbers such as the ventilator settings, his diapers throughout the night, how much his feeds are and then anything specific going on with him and the plan for the day.  This day Nathan was once again, doing well.  They said that he would be getting a head ultra sound at some point that day because at that young of a gestational age, babies are very susceptible to brain bleeds so they just have to make sure that he doesn’t have any.

When we weren’t doing Nathan’s care, we would just sit by his incubator in recliners that they have for parents.  The 2 spots next to Nathan were vacant so we had a lot of room to sit by him and sprawl out.  As I was sitting by him, I was making a list of everything that I wanted Kevin to bring back from Columbus for me.  I basically had 3 shirts and some yoga pants with me and if I were going to be here till March, then I would need way more items than that.

It was around lunchtime and we headed down to the cafeteria to get some food.  I remember sitting at the table and starting to tear up because I missed Colin.  Kevin then showed me a text from his younger brother, Jeff.  It basically said that Colin was a great big brother for protecting his younger brother.  And I completely agreed.  Some people might look at the fact that since Colin only lived a short time that he was the weaker of the two.  But we looked at it like Colin sacrificed his own life to save his younger brother and to give Nathan a chance to live a wonderful life with his Mommy and Daddy.  It was just so hard to think that Nathan would grow up never being able to play with his brother and do all the fun things twin boys would get to do.

After I pulled myself together, we went back up to the NICU.  As we were sitting by Nathan, a woman named Jeanne came up to us and began to explain that she was part of a DHA research project.  This was a study of the effect DHA has on mothers’ milk and how that helps and effects preemies.  She explained that if I wanted to be a part of it, all I would have to do is record my food and drink intake for 3 days every 2 weeks, take DHA pills and get blood drawn every few weeks.  And all Nathan would have to do is get some blood drawn.  She said that they would only collect his blood if they were drawing blood for other reasons as well.  They wouldn’t poke him an extra time just to get a sample for this study.  I told Jeanne that I would be happy to be a part of this study to help preemies.  So she took some of my blood, gave me the DHA pills and handed me the sheet for me to track my food intake.

While we were talking to Jeanne, Sue, Nathan’s nurse for the day, had put him on his side and propped him up so he was on an angle.  Sue was one of our top 5 favorite nurses.  She was a tiny bit of a thing, about 5 feet tall, and had worked in the NICU for about 30 years so we absolutely felt comfortable when she was taking care of Nathan.  She also had really bad hips so Kevin enjoyed talking to her about Physical Therapy.  I promised all the nurses over the course of our time in the NICU that if Nathan came home with us a healthy and happy baby, that Kevin would give free PT to all of them that needed it.  But with Sue being so short, the only thing was that she had the incubator at her level.  So if I wanted to help, I would have to sit on a chair to make it comfortable for me.  It was just funny because when we would walk into Nathans POD and saw him 2 feet lower than normal, we would know that Sue was his nurse for the day.

While Nathan was on his side, that looked like the most comfortable for him.  It probably seem that way to me because that is the way I sleep but I would think it also felt good giving his back, belly and neck a break. You can see in the video below Nathan on his side.  He is moving his little hand.  I loved when he moved around.  

After a little while, I got to do skin-to-skin with him again around 2:30 in the afternoon.  For the forth time, I offered it up to Kevin but he said he would do it next weekend when he came back.  So we got Nathan out of his incubator and back on my chest.  In the picture, you can see how tiny he actually is. 

His whole hand fits around the first segment of my pointer finger.  I don’t think people realize how small he was.  It is hard to tell in pictures because he looks just like a little baby in the pictures.  Until you are actually next to him and touching him, I don’t think you can really grasp it. 

While I was holding Nathan, Kevin decided to head home to Columbus.  He kissed me; he kissed Nathan, and left us alone for the first time.  It was now just Nathan and his Mom.  Kevin wanted me to text him with updates all the time, which I was happy to oblige.  But right after Kevin took off, the doctors came over and told me that they needed to do the head ultra sound so we needed to put him back.  Although I could hold him forever, I wanted to do what was best for him so I put him back in his bed and went to go pump while the techs did the Ultra Sound.  They said we would get the results the next day.  Little did I know that that would be the last time I would hold my baby for a few weeks.

When I got back from pumping, they said that he handled the US very well.  Nathan was such a good boy when it came to things like that.  He was a strong little boy and I was a proud Mama.  He was on his back when I got back and was waiving his arms and legs around.  He would always grab his tube which worried me (you can see him doing it in the picture below).  I didn’t know if he was strong enough to pull it out or if he just wanted to place his hand somewhere but he would ALWAYS do that.  So this time, Sue grabbed some loose wires that were not being used and tried to use reverse psychology on him.  She said, “Nathan, I do NOT want you to grab these wires!”  It worked for a second but then he went right back to grabbing his tube.  Oh well!

I sat by Nathan for a few more hours before I called my mom to come pick me up.  She had arrived to the RMH a little bit after Kevin left.  So since it was almost dinner-time, she came and got me and we went out to Max & Erma’s to grab a bite to eat. Once we finished dinner, my mom dropped me back off at the NICU around 8:30pm.  Elizabeth was Nathan’s nurse that night again.  It was always nice to see a familiar face taking care of my baby.

I spent about two hours with him.  I did his care and he was doing great.  He was still having wet and poopy diapers and he was getting 4 mL of my milk.  Elizabeth said that he was being bumped up to 5 mL at his midnight care.  When Nathan was doing well, it meant I was doing well.  His glucose level was up pretty high so they started him on an antibiotic and was pumping him with insulin as well.  We just needed to get that number down to a normal level.  But when Elizabeth checked his glucose level at 9, it had gone down to 197!!  That was a big change from being in the 200’s previously. 

While I was sitting by Nathan, there was a baby directly across from him and he apparently wasn’t doing well.  Jonda was that baby’s nurse that evening.  She had been my baby’s nurse once so I knew who she was.  She came over to me and said, “This baby isn’t doing very well so you might want to leave since you just went through this with Colin.”  In all my time spent in the NICU, I never once saw this baby’s parents.  I appreciated her coming up and telling me, but I wasn’t going to leave my baby sooner just because a mom is about to go through the same thing that I went through.  I automatically texted Kevin and told him what was going on.  He asked me if I was alright and I told him that I was fine.  I told him that Nathan was doing well and that there was no reason why that was going to happen to me again.  They brought in dividers to give the family privacy for when they got there.  I overheard Jonda saying that she called the parents and the father was coming in but the mom was not.  After about 15 min, an African American man who looked in his early to mid 20’s, showed up.  He walked into the POD, looked at his baby, and then walked out and that was the last I saw of him.  The baby was also a twin whose sibling had already passed and he was a 24 weeker, just like Nathan.  I had to believe that Nathan was not going to experience what his neighbor and his brother experienced.  I had to believe everyday that he was going to come home with Kevin and I.  Nathan deserved for me to believe in him.  What kind of mother would I be if I went to see him everyday expecting it to be his last.  I had to treat this time in the NICU as if it was just going to be a bumpy road to a lifetime of happiness.

It was getting late so and I called my mom to come pick me up.  I said Goodnight to Nathan and said a little prayer for the baby across from him.  I know exactly how that feels to about to loose a baby and it is not something I wish on even my worst enemy.  I took a ‘Goodnight Daddy’ picture to send to Kevin and then left Nathan for another night.  I missed him every second I was away from him and was always anxious for it to be morning so I could go see him. 

Because I was leaving after 9 pm, I had to walk through the ER because the main doors were locked.  If anyone wanted to come in to visit someone in the hospital after 9, they would have to go through the ER.  The employees call up to the department to check to make sure there is a patient by that name and then they get a slip.  They walk to the door to the lobby where they are greeted by police officers.  The officers escort them to the elevator and depending on the department they are going to, they either escort them all the way up or they take them just to the elevator.  Since UC was not in the best part of the city, I was glad they did this, because after 9, I hate to say it, but the ER looked like a homeless shelter.  It was packed and it smelled like an ashtray.  I hated walking through there by myself.  I mean, it was December and it was cold so I am sure there were people who just thought of something to go to the ER for so they could stay warm.  It was just another night in the UC hospital.  Until tomorrow…..

Goodnight Dad!!!

"The Ronald McDonald House" (12/17/13)

We woke up fairly early so we would have time to get ready and head over to the Ronald McDonald House between 9 and 10.  We went down stairs and had breakfast with Kevin’s Dad before he took off to go back home to Canfield.  We loaded up the car, said our goodbyes and headed to the RMH. 

Main House of The Ronald McDonald House Cincinnati

The Lobby

We pulled up to this massive structure that was guarded by a gate.  We pressed the CALL button and told them that we were The Kane’s here to check in.  They opened the gate and we found a parking spot.  We walked into the main entrance and the place was beautifully decorated for Christmas.  A huge Christmas tree in the foyer and a Christmas village was there to put everyone in the Christmas spirit.  Although it was the holiday season, Christmas was the last thing on my mind. 

The person at the front desk told us to have a seat and a wait for a manager to come and get us oriented with the place.  After about 5 minutes, a woman named Barb, came over and brought us into the office area and had us have a seat in a room with a couch and a television.  She told us that we would watch a movie about The RMH and then she would be back in to go over everything with us.  To me, the movie was all about how it is so nice for the RMH to serve food 3 times a day.  There was a family who just went on and on about the fact that they provide meals.  Yes, that is a very nice thing but I don’t see why we needed to watch a 10 min movie on it. 

After the movie, Barb came back in and went over the policy and procedures.  I was a little taken back by all the rules that were in place and that we had to follow.  I just lost one of my sons and my other one is fighting for his life every day and I really just needed a place to sleep and shower.  To tell me I have to follow all these rules was the last thing I wanted to do.  There is a huge white board in the lobby and it has every families name and when you are in your room, you have a magnet that you have to move to “IN” and when you leave, you have to move it to “OUT.”  You have to wear a lanyard when you are in the building so people know you are a resident.  You have to use your room at least once a day. You cannot have snacks in your room.  The refrigerator in our room was only meant for water and breast milk.  And the one rule I couldn’t believe they were telling me I had to do was that you have to visit your child at the hospital at least once a day.  Why the hell were they telling me to do that?  That is all I WANT to do!  I understand why they have all these rules but I just felt like I was being treated like a child and I just needed the freedom to do what I wanted. 

The RMH is run solely on donations and volunteers.  But Barb said that residents are encouraged to give $30 a night.  Now granted that is much cheaper than a hotel, but we didn’t know how long Nathan was going to be in the NICU.  I was hoping we would be in Cincinnati until the end of March because that would mean Nathan would be going home with us.  So that is at least over 100 days at RMH.  Then right after she told us that, she said that she saw on our paperwork that we had twin boys. My parents put in the application for us and they must have put down that we had twin boys.  I told her that Colin died that past Saturday so we just have Nathan now.  She got up and came over and gave me a big hug since I started to cry.  She said that they would waive the $30, which was very nice of her.  She also gave us a bag that had a stuffed animal in it and a blanket and some kids things.  That was sweet and I could only hope that Nathan would play with that someday.

So after she went over everything and we signed everything we needed to sign, she got another woman to show us around the place.  It is truly a wonderful place for families that have kids with illnesses.  Some of the kids stayed there and you would see children with masks on or ones that have baldheads from cancer treatments.  There were 2 sections of the RMH.  There was the main part where we started in and then there is a second part that is connected by a 2^nd floor bridge.  We would be staying over in the second part, which was quieter.  It also had a separate kitchen.  The main kitchen that they would serve all the meals in was in the main part but this kitchen still had everything if we wanted to make any meals.  We had our own section in a freezer and in a refrigerator that we could put anything in that we wanted.  We also had a cupboard with a lock on it that we could put anything in as well. 

We finally got to our room on the 2^nd floor.  The key fab that hung on our lanyard opens up our room.  We walk in and it is just a little bigger than a hotel room.  It has 2 queen beds, a dresser, a television, a mini-fridge, a built-in with a hanging closet and drawers and then a bathroom.   It was a nice room and I was hoping it would be my home for the next 3-4 months. 

Now that we were oriented with the place, we were on our own.  We decided to unload the car real quick and then head over to the NICU.  We would unpack everything later. I wanted to see my baby and I had already taken up a lot of time at the RMH.  After a couple trips up and down what seemed to be the slowest elevator known to man, we were ready to head over to see our sweet sweet boy. 

Once we had arrived, Nathan seemed to be doing very well again.  I can’t tell you the joy he brought me.  To touch him, to hold his tiny hand, to look into his eyes, it warmed my heart and I would get so happy.  The amount of love I have for this little tiny person is nothing like I have ever felt before.  Once again, I got to do skin-to-skin with him.  I offered it up for Kevin to do again but he let me do it for the 3^rd time.  I would never argue with him.

Me Kissing Nathan

Holding my Baby

 Now that we were in the RMH, we left the NICU around 5:30 so we could be back in time to eat dinner at 6 pm since that is when they serve it.  So after sitting by Nathan for 5 hours and doing his care when he needed it, we headed back to eat dinner. 

Since we cant be in the NICU until after 7:30, we ate dinner then we spent the rest of the time unpacking and making our room as homey as possible.  I would not be living out of a suitcase because I was not planning on ever going back to Columbus until Nathan was coming home with me.  Since Nathan was doing so well, Kevin was planning on going home so he could work.  He would work Mon-wed, come down on Wednesday since it was his early days and spend a few hours down in Cincinnati, then drive back that night and work till Friday and come back for the weekend.  That was the plan as long as Nathan was doing well.  When he would leave, my mom would come down and be my driver since I was not allowed to drive.  She wouldn’t be able to go in the NICU with me so it would just be my boy and me.

We headed back to the NICU to spent a few hours with Nathan and to say goodnight to him.  I would be able to do one of his cares in that time frame.  He was getting a few more mL of my milk that I would bring in, and his diapers were a very good amount.  I can’t remember what day it was but Kevin had stepped out of the NICU to go to the restroom or something and I was changing Nathans diaper when we got his first poopy diaper.  You would have thought I had just won the lottery.  I yelled so loud that he had pooped!  I was so proud of my little boy.  His bowls were working and his kidneys were working too.  I was such a happy Mom.  The nurse asked if I wanted to save the diaper for Kevin to see.  I thought about it but then realized he wouldn’t care to see it, he would just be happy he had one.  It’s clearly the little things in life that make me happy.

We said goodnight to our little man and headed back to the RMH.  I told Nathan that we would just be 2 blocks away so we were not that far away from him if he needed us.  Once we arrived back, Kevin started to pack up things since he was planning on heading back to Columbus the next day given that Nathan’s status was still good.   We had our first night in RMH and all went well.

"Discharge Day" (12/16/13)

Monday December 16^th.  I knew it was the day that I would have to leave the hospital and be farther away from Nathan.  I didn’t want this day to come, but I guess it was time.  My parents and Father-in-law came to the hospital that day to help me pack.  My parents were heading back to Columbus that day as well.  They had been staying in the same hotel room that Kevin and I stayed in when we first arrived in Cincinnati.  My Father-in-Law was going to stay in town for one more night. 

Kevin and I spent as much time in the NICU as we could before it was time to leave to go to the hotel.  We were in the NICU around noon when Nathan’s nurse said that we could do Skin-to-Skin again!  I am one lucky mom! Two days in a row!  I asked Kevin if he wanted a turn to hold his son.  He said that he wasn’t going to take away something from me that made me so incredibly happy.  He was such a good husband (still is) and I was not going to argue with him.  So we did the same thing.  We put curtains around his incubator, I got prepped and I held me baby for another hour.  That time spent with my son was so special to me.  His skin against mine felt so natural and he had that new baby smell.  I kissed his forehead multiple times again and just was completely in the moment.  Nothing could bother me.  It was just me and my son.

Mid-afternoon came and it was time to get my discharge papers and head out.  We told Nathan that we would be back later that night to kiss him Goodnight but we would be gone for a good 5 hours or so.  Kevin and I only packed a little bit of clothing when we originally came down to Cincinnati because we weren’t planning on being here for this long.  Throughout our time in L+D, my mom was taking Kevin’s clothes to a laundry mat because he only had a few items.  So with that said, we had to run to Target and get some clothes and essentials such as underwear, socks, some shirts and I needed some nursing bras because I clearly didn’t have any since I wasn’t planning on pumping 3 months early.  I also had some prescriptions that I needed to get filled.

My nurse that day went through all the discharge papers with me.  We made sure we had everything out of our room, we hugged all the wonderful Labor and Delivery nurses that had helped me and we left the hospital.  Two of the nurses, Bridget and Becca gave me their phone numbers.  They said if I needed anything, to give them a call.  If Kevin was back in Columbus working and I needed to be driven somewhere, they would take me.  That just goes to show how much these people became family during my time in L+D.   There was also a nurse, Alicia that was one of my very first nurses in L+D.  She was the one who tripped over my monitor chords that first night.  Anyway, she came up to me and told me that she had Fraternal Boy/Girl Twins.  They were born at 27 weeks and her daughter didn’t make it but she still has her little boy.  She cried to me and I cried with her.   She gave me her email and told me to contact her if she ever needed to talk.  I had heard other stories throughout my time in the hospital of twins being born, whether they had TTTS or just being born premature, and one twin would survive.  So hearing those stories gave me so much hope for Nathan. 

As we were walking out of the hospital, I realized that this was my first time feeling fresh air since December 4^th.  I had been on the L+D floor, which is also the floor the NICU is on since December 4^th.  So for 12 days, I had not left the hospital.  We drove 20 min south into Covington, KY to get to the hotel.  Upon arrival, we were supposed to have a hospital grade breast pump waiting for me.  I asked the front desk if it had arrived and it had not.  We got up to the room, and we called the DME (Durable Medical Equipment) provider to see where it was.  I was due to pump and was going to need it soon.  The people at the number we called didn’t really know what we were talking about and seemed to have no record of a pump to be delivered.  I started freaking out and thinking that we were going to need to go back to the hospital and sleep in the NICU because they had a pump.  I called Bridget and asked her if I could borrow a pump from the hospital.  She told me to go to the Nurses Station when I got back to the hospital and they could rent me one.  At least I had a plan, but I was going to be a bit uncomfortable until we got back to the hospital.

Kevin went to his dads’ hotel room for a little bit to have a few beers while I put all my clothes away.  We were going to stay in that hotel until we figured something else out or got into the Ronald McDonald House.  We were on the waitlist so we didn’t know how long it would be until we got in.  I relaxed for a bit by myself before I got ready to go to dinner.  The plan for the night was to go to dinner with my Father-in-law and then head back to the NICU to spend an hour or two with the little man.

We had reservations at the Moerlein Lager House at 6:30 pm.  It was on the river and all the nurses said it was a good place to eat.  Kevin and I would drive separate from Dad so he could just go back to the hotel after and Kevin and I could go to the NICU.  It was 6 o’clock and we pulled out of the hotel parking lot.  I had Kevin’s phone in my hand with GPS on it to lead us to the restaurant.  Within 10 seconds, his phone rings with a 513 area code number.  This interrupts the GPS so Kevin misses the turn.  I answer it because any 513 number could be the hospital and something could be happening to Nathan so it is important that we answer those calls.  It was actually the Ronald McDonald House.  They said they had a room open up and they wanted to know if we were still interested.  We told them ‘Yes’ and then they asked if we could check in that night or the next morning.  I told them we would be there the next morning.  We had just gotten settled in the hotel for the night and I wasn’t about to take time out of visiting my baby to go to the Ronald McDonald House (RMH).  We had to tell them a time they would expect us so we just told them between 9 and 10 in the morning.  At that point, Kevin had pulled into a parking lot since the GPS was being interrupted by this phone call.   We got the GPS running again and we got two blocks and RMH was calling again.  I ignored it and let it go to Voicemail because we needed to find this restaurant.  Then my phone rang and it was the hotel.  They said that my breast pump had arrived so that was a big relief.   

We got up to the restaurant and Kevin dropped me off so I wouldn’t have to walk very far from the parking garage.  I was still healing from the C-Section so I couldn’t do a lot of walking if I could avoid it.  As we were waiting for our table to be ready, Kevin said that the guy who called from the RMH REALLY wanted us to come that night.  Kevin told him that his wife was really tired and we were going to visit our baby that night so we wouldn’t have time.  He wasn’t thrilled by that response but too bad.      

We had a very nice dinner that was not hospital food and it was nice to have a change of scenery.  We had the view of the river from our table and the lights of the buildings were reflecting off the water and that was very pretty.  But as nice as this change of scenery was, I couldn’t wait to get to the NICU to see my baby.  There was no point in rushing because we couldn’t be there before 7:30 anyway so we just took our time. 

Dinner was over so we paid the bill and Kevin went to go get the car and pull it around.  We were on our way to see our baby and Kevin’s dad headed back to the hotel.  We got to the NICU and I was so happy to see my sweet boy.  Elizabeth was his nurse for the night.  She was a younger girl only a year or two out of nursing school but she seemed to be really good.  I helped, once again, with Nathan’s care and we hung out for about an hour and a half.  Elizabeth was kind enough to take a family picture.  Although we were missing a piece of the portrait with Colin being gone, we knew he was there with us. 

Nathan and his parents
(it is kind of blurry)

Nathan holding Mom and Dad's Hands

I didn’t want to leave the NICU.  I was going to be sleeping 20 min away from Nathan rather than down the hall.  He was doing well so I wasn’t completely nervous but I know in the NICU, anything can happen.  I was glad that we got into RMH and would only be a few blocks away starting the next night.  While in the NICU, I was able to pump and since the pump was delivered to the hotel, I didn’t have to go to L+D to get one. 

It was time to say goodnight to my sweet little boy.  I told Elizabeth to call me if anything happened but hopefully everything was going to be fine and Nathan was going to have a good night.

When we got back to the hotel, we picked up the pump at the front desk, I took a nice hot shower in a spacious shower and I crawled into bed.  Since they were double beds, I asked Kevin if he would be offended if I slept alone in one bed.  I just didn’t want him to roll and hit my incision.  And it was still painful to transition from lying to siting to standing so I didn’t want to bother him when I got up in the middle of the night to pump.  So we went to bed and it felt so good to be in something other than a hospital bed and I am sure Kevin enjoyed sleeping on something other than a stiff pull out couch.  But even so, I wish I were still in a hospital bed, still pregnant with my boys.