"Merry Christmas" (12/25/13)

This is not what I had imagined.   I didn’t think I would be waking up on Christmas morning, so far from home and spending the day with my 3-month pre-mature baby who is fighting for his life every day while my other baby is looking down on us from Heaven.  I was supposed to still be pregnant with these little guys and spending Christmas with our family as we continued to be excited about Colin and Nathan’s arrival in a few months.  But, here I am.  I am in a situation that I never expected to be in and a situation that I cannot change.  I was in a place that I didn’t want to be in but yet at the same time, I didn’t want to be anywhere else.  Nathan was here. Nathan was my Christmas present.  Nathan was my entire world and I had to give him as much love and support as my body could possibly give.  It was time to go spend Nathan’s first Christmas with him and make it as happy of a Christmas as we could possibly make it.  But to be honest, whether it was a good holiday or not was all up to him.

Kevin and I arrived in hopes that Santa had delivered another great day for our sweet baby.  His nurse today was named Brianne.  As you walk into the entrance of the NICU, you can see Nathan’s room straight back so we can always see if there are people in his room or if there is someone we know or don’t know working with him.  We didn’t recognize Brianne and had never seen her before around the NICU.  You have to understand that we have to blindly put all our trust in Nathan’s nurses and Doctors and hope that they are giving him the absolute best care that he can possibly have.  I have not had any complaints thus far but Brianne kind of rubbed Kevin and I the wrong way from the get-go.

Brianne looked like a little bit bigger version of Carly Rae Jepson, the singer of “Call Me Maybe.”  Throughout the day, while we watched her take care of Nathan, she seemed to just ‘do her job’.  Nathan is a human, he is a baby, and just because he is so very tiny, I would like his nurses to treat him as if he was a real baby….because HE IS! She wouldn’t talk to him and she didn’t even crack one single smile…all day.  There was another nurse that was taking care of the other 2 babies in isolation and Brianne and her seemed to be friends.  That nurse, named Kim, had big teased bleach blonde hair with a LOT of eye makeup.  They seemed to care more about talking with each other and reading their magazines instead of keeping an eye on the babies.  I felt like when I would ask her questions or tell her to come in to help me with something, that I was inconveniencing her.  But I didn’t care.  If I have questions about my baby or if I think something needs to be done in way of care for him, I am going to step up and say something.  Kevin and I are Nathan’s advocates because he cannot speak for himself.  Luckily, I had been a NICU mom long enough to know how to do certain things and know when to intervene so if I thought something wasn’t being done right, then I could say something.

Enough about grumpy nurses, lets talk about my Christmas miracle.  He was having another great day.   Santa did real good.  There was one thing that happened at his noon care that scared me a little though.  While we were turning him, his breathing tube came undone for a moment.  The oscillator started beeping and when Brianne tried to restart it, it wouldn’t restart.  Brianne grabbed the Neo Puff and began breathing for him.  I am freaking out inside.  Nathan’s numbers were fine.  It didn’t seem to faze him at all.  Brianne yelled to Kim to go get Sandy, who was the respiratory therapist for the day.  Kim just calmly strolled out of isolation to go find her.  All I wanted to do was yell, “RUN!!!!”  Sandy came and fixed it and Nathan was back to being hooked up to the oscillator.  All was well but that made my heart beat a little bit faster.

Nathan next to my iPhone

When they weighed him the night before, he weighed 750 grams, which is the most that he has weighed at this point.  You could definitely start to tell that he was becoming much thicker than when he was born.  We wanted to start taking a growth picture of Nathan.  But pictures don’t do his size justice and him next to Kevin’s hand is hard to imagine because Kevin’s hand is not ‘average’.  So we thought….what is an object that we could put next to him that pretty much everyone knows the size of.  An iPhone of course!  So I put my iPhone in a plastic bag (it’s a 4S if that matters to anyone) and stuck it next to him.  You can really see how tiny he is next to that.  Every week, I wanted to put that in there so we could see how much he was growing.  I would have done the same thing with the boys if they were born at a normal gestational age, so why not do it now?

At this same care, Nathan went up to 11 mL of my milk.  It made me so happy the more milk we were allowed to give him because the more milk he got, the more he grew and became stronger.  We would think way into the future to what it will be like when Nathan is much bigger and can do way more things.  The other two babies were in cribs and not in isolates.  Their parents were able to pick them up and hold them while they fed their baby a bottle.  Not for us.  Not yet anyways, but someday.

Today was the first day that we gave Nathan a pacifier.  They said that it was good to give it to him so he can practice sucking.  It was also good for him to suck on one while he was getting his milk through the NG tube because then he would start to associate the sucking and swallowing to a full belly.  Kevin got lots of pictures and video of me feeding my baby.

Giving Nathan a Pacifier (it's the same color as my glove)

I’ve said it before and I will say it again; these tiny tiny moments that I had with my son, meant the world to me.  Just feeding my child was an absolute joy.  No, I am not like most mothers who get to cradle their child in their arms while their baby gets milk straight from the source.  I don’t get to have those skin-to-skin moments with him whenever I want.  I don’t get to see those beautiful eyes looking up at me in those moments when a mom feeds their child and know that the baby is perfectly content just being in their mothers’ arms and they feel completely safe.  I didn’t know if my baby was in pain or if he was happy. All I had to go off of was the numbers on his monitors.  He didn’t smile, he couldn’t cry.  I knew nothing.  The only time I could literally SEE emotion from him was when he would be having something done to him and he would grimace with pain.  That’s it.  That is all I got.  It was heartbreaking to see that.  I was in the dark with so many things.  Did he know I was his mom?  Did he know I was by his side every single day of his life…just praying that someday I get to take him home and we can have a happy life together?  I didn’t know these things.  I could only hope that he knew who I was and knew that I loved him with every single ounce of my being.

When I say I didn’t take any moment with my son for granted, I meant it.  I was even so excited to see him Yawn for the first time.  Yes, I said Yawn.  I caught it on tape and I absolutely loved it!  The video was very funny because as soon as I started recording, he put his arm up near his face so I couldn’t see him.  I had to laugh at that.  He really did have his own little personality that Kevin and I were getting to know very well. 

Other than having a day full of taking videos and pictures of my baby, it was an all-around pretty good Christmas with him.  We were going back downtown to the hotel to spend the evening with our family.  So after we got Nathan all tucked in for the night, we took off right before shift change.

All Tucked in for the night.

Once we got back to the hotel, we gave everyone an update on Nathan so they could breathe a little easier.  He had a great day and he really allowed his parents to have a pretty decent Christmas.  We went back to McCormick and Schmidt’s and had another nice meal.  Then we headed back up to the room to exchange gifts.

Our family knew that getting gifts for them was pretty much the lowest thing on our list for the past few weeks.  I really just wanted to skip Christmas all together because it just didn’t seem right celebrating it but Nathan would have wanted us to enjoy the Holiday with our family who were kind enough to come celebrate it in a city that they are unfamiliar with.  My mom started off by handing Kevin and I each a present.  When we opened it up, it was the picture of the first day that I held Nathan and Kevin was right by our side.  Our first framed, family picture.  It was so kind and thoughtful.  We got some other things and then my parents gave me a present that was for Nathan.  When I opened it up, it was a very soft baby blanket.  It had a letter explaining what it was.  This was a blanket for us to use to keep Nathan warm with when we did skin-to-skin.  And then afterwards, my parents would hug it and it would be like they were getting a hug from Nathan.  And then vise versa.  It was like Grandma and Grandpa were giving Nathan a hug.  It was really sweet and definitely made me cry.

Another wonderful gift was one that my brother got us.  He told us the back-story behind it first.  The night Colin died, my brother was at a wedding with a bunch of his friends.  While I was still holding Colin, my dad had called him and told him the sad news.  My brother, obviously upset, told his friends.  One of his friends’ wife was a Neonatologist herself.  She shown some light to his friends on the kind of things that Kevin and I were going through.  Each of his friends (there were 10 of them) all pitched in $70 and put it all on an American Express Gift card.  $700! My jaw dropped.  People had been so generous to us throughout this whole thing.  My entire work had dropped off a big basket full of stuff the week prior, full of things to do in the NICU, magazines to read, and a TON of gift cards.  Gift cards to fast food, to restaurants, and gas gift cards since Kevin was going back and forth.  The generosity of people really was amazing and to have this $700 to use for food or gas was unbelievable.   I only wish I had all his friends there to thank them.

There was one more gift that was very special.  It was 2 candles in Swarovski glass candleholders.  One was to be lit in memory of Colin and the other was for Nathan and hope that he would get through this and make it home with us.  I decided to light them and just watch the flame flicker for a few moments as I thought of both my sweet boys.

All in all, it was not a bad Christmas, given the circumstances.  Kevin and I ended up spending the night in the hotel with them.  Kevin was going to get up early and drive home and go to work and my mom was going to stay in town for a couple days.

So we got ready for bed and I typed up my Nightly Update.   I will leave this entry with the Nightly update as well as a few more pictures of our baby. 

Nathan’s Nightly Update – 12/25/13

Merry Christmas Everyone!

Nathan gave us another uneventful day today, which was the best Christmas present Nathan could have given us.  Today at noon he went up to his 11 ml of my milk.  Once again he is completely off his IV for any nutrients and is only taking my milk.  Tonight at midnight he goes up to 12ml.   

Last night he weighed 750 grams and tonight he was 752 grams.  Also last night he was down to 33% oxygen but during the day today he was around the high 30's to low 40's.  We called around 10:30 tonight to see how he is doing and he was at 38% oxygen.

Today during his Noon care, his oscillator (which breathes for him) came unplugged and wouldn't restart so the nurse had to use a NEO puff and breathe for him until the respiratory therapist came to get the machine to work.  Nathan handled it very well and his SATS and heart rate didn't change but Mom and Dad were a bit nervous. Mom probably a little more than Dad.  But all is well and the machine started working again and Nathan was just fine.

He is currently on day 5 of his antibiotic out of 14 or so and he does seem to be tolerating that well.

One other thing that was cool to see was that he took a pacifier from me and would suck on it.  I will send a video of it in a separate email because of the size.  It was so cute.

We love you all and hope your Christmas was full of joy and happiness as you spent it with the ones you love.  I know we did!  Kevin and I spent most of the day with Nathan and then came downtown where my parents, my brother and Kevin's Dad were staying at the Westin Hotel.  We had dinner and presents and family time. 

Merry Christmas Everyone!

Love,

Kelly, Kevin and Nathan