Sunday, May 17, 2015

Summer of 2014 Part 3

I really want to move on with the my journaling but feel so hung up on this summer and the need to explain every detail about our journey with Christian. I have a lot of it written down in my journal so I will document what few pictures I have of the summer on here with captions.  I don't want to ever talk about breaking my phone without getting the pictures from this summer ever ever again. Oh, and get ready for a few pictures that  show some guts (literally).

Our last night living in the city. It was really the perfect Boston summer evening in the garden with friends. Those two years in the South End changed my life  and I wouldn't change one minute we spent there. The good and the bad.

Fourth of july fireworks on the charles. This was the first time that I left Christian by himself in the hospital. I was so nervous as he had been going through narcotic withdrawls after his most recent surgery. He could not get off the fentanyl and had shakes and was extremely irritable. After walking down by MIT from HBS, Beau, my dad and I sat down on the banks of the charles and watched the amazing display. I love the fourth of july and I love fireworks. I was spending the night at the hospital that night and right after I parted ways with the guys it started to pour. It went from 0-100 in .01 second and was unlike anything I have ever seen. What made it even more crazy were all of the people on the streets who had just finished watching the fireworks. Everyone was searching for some kind of shelter because of how heavy it  was raining. When it didn't look like it was letting up I finally just hopped on a hubway bike in the rain and booked it over to the hospital. It was quite the adventure.

Christian's G-tube was always a source of annoyance. The constant retaping on his little cheek and drainage got really old. Not to mention having to reinsert it so many times. 

For my birthday, Beau came and got me (the day after the fourth of july) at the hospital early in the morning and dropped my mom off. When I went down to the car to trade places with my mom, she gave me the cutest potted plant and a painting of a mother holding a baby with an angel looking over her shoulder. We had both felt many many angels as we took care of Christian every day in the hospital. Beau took me to Walden pond where we jumped in and swam across the length. It was so exhilarating! We ran into the Fitzpatricks at the pond and chatted with them for a bit. We hurried back and got ready for the whole family to go to Kimball Farms. One of my favorite places in New England. We got lunch, listened to some live oldies music, got on the bumper boats and batting cages and of course finished with some ice cream. My dad was in heaven! It was a great birthday and I was so grateful for Beau in making such an effort to make me feel some joy that day.

Beau learns how to change oil

Before Beau left his job we got to use their Fenway tickets one last time. We didn't last long and it was a hot muggy night but it was fun to be there. I remember we barely missed the rain coming in and were sure to get a yummy hotdog!

More hospital crib pictures.

Tennysons main playspace for the summer became the Prouty garden in the middle of the Children's hospital complex. We spent many hours chasing the bunnys around, lounging under the big tree and making friends. I usually sat with Christian in the shade on a blanket while Tennyson got his wiggles out. Those were some of my happiest moments of the summer. Being able to be together as a family outside on a beautiful day was amazing and all the world felt right.

 One of the friends Tennyson made. He would push her around the garden and she would just laugh and laugh.

Bowling together for the first time at Derek Staples birthday party. 

Dinner at Amsterdam Falafel. One of my favorites! The Fitzpatricks were amazingly generous to us during our time at Childrens and would watch Tennyson AND Christian at the same time so that Beau and I could go on a date. It was such a huge sacrifice for them with 3 little ones of their own. it makes me teary just thinking about their love and service.

Beau finishes work at Audax on August 1st. Bittersweet but mostly sweet.

Walks with Christian

Chunking up on his miracle food Omegaven
I could do a series of posts about the amazing miracle that Omegaven was to us during our time at Boston Children's. It suffices to say it saved Christians life.

Special delivery from Hickory Hill farm thanks to Poppy Jewkes! I am so lucky to have such generous in laws with such good taste.

Now.. Where to put all of it?

Grandma Becky came while I was in Utah for my sisters wedding to keep Beau company. They ate the hospital omeletts, had excel lessons and lots of long conversations over snuggles with Christian. When I got back we made sure to take her to our favorite.. Kimball farms. She was a natural in the batting cages. 

A sideways description of all of the craziness that was happening in Christians bowel. Trying to keep our family up to speed during this whole ordeal  was tricky. We figured a visual might help.

Post-op surgery number 3 (the BIG ONE)  This was the surgery that all of our prayers and fasts had led up to. Our surgeon had the OR booked all day because it could have potentially taken that long depending on what they found when they went in. The surgery went miraculously well considering how his bowel had looked 8 weeks earlier when they had to open him up. It was our first bit of good news since Christian was born. 

Puffy Christian after surgery

During his NICU stay after this surgery his incision got infected..wah wah! I was on it like a hawk! taking pictures every day to see if it was getting better or worse. Poor Christian was in so much pain and the darn NICU fellows wouldn't give him any pain medication. Needless to say this mama got her boy some drugs. Seriously? look at that scar and tell me he wasn't a 10!

A happier Christian on the floor. I lived for those smirks

Another tender mercy this summer was all of the one on one time that Beau was able to spend with Tennyson. After basically working non-stop for the first 18 months of  T's life, Beau learned how to take care of and go on adventures with his first born. It sort of made my heart burst with love for both of them.

These are some of our last pics in the hospital with T loving on baby C. I love the picture where it looks like the whole world is spinning but they are in focus looking at each other. I could tell from the beginning that these boys have a special relationship and love for one another. Tennyson is still pretty rough with his little brother but we're learning. 

Monday, February 16, 2015

Summer of 2014 part 2

It makes me cry when I even think about it but by some divine destiny nearly all of our pictures from this summer have been lost. My phone got water damage at the beginning of October and despite a valiant attempt to recover the photos on it- they are lost forever. Around the same time Beau's iphone from the summer disappeared and with it all of the photos he had on there from our time in the hospital as well. Ugh it makes me sick thinking about it but oh well. Move

Christian got puffier and puffier (a side effect of all of the fluids from his first surgery) but when he was finally off of the fentanyl drip (continuous pain medication) we were transferred to the floor. My mom was there when a bed opened up and we were taken to 10 east. This is just one floor above where we spent 6 weeks with Tennyson the year before. I got the phone call at home and began packing a bag with one weeks worth of clothes along with toiletries. Beau dropped me off at the hospital and as I lugged my duffle bag through the lobby and entered the elevator I got as close as I've ever felt to having a panic attack. Luckily I was alone (which never happens) but my breathing became shallower and I thought the walls were closing in around me. The long road of recovery with my boy seemed to be stretching out ahead of me with no end in sight and the painful memories of Tennyson's stay were flooding in.

I held it together and found room 1025, the room my mom had relayed to me. It was shared room and we had the bed space right next to the door. The worst. I walked in the room and sat down in the chair next to my mom who was holding Christian and reading a book on her kindle. I didn't even wait for a hello before I broke down sobbing. I knew the mother in the bed space next to ours was there but I didn't care, I felt the heavy weight of a long term hospital stay pressing down on me and I just COULD NOT do it again. I was making this very clear to my mom between sobs, my duffle bag still on my shoulder. She looked at me and began the only "firm" conversation she's had with me in my adult life and during all her time with our family over the events surrounding Christian. And it was exactly what I needed. She told me to pull it together. That I COULD do "this" looking down at Christian as the object she was referring to. Sitting in a room and holding Christian while I waited for him to have surgery was not hard. We would take it one day at a time and we would take turns but that we could sit and be with Christian for 6 weeks and wait for him to get his surgery. As we were sitting there and she was giving me my pep talk, our nurse walked in the room. Sue. My mom introduced us and explained that I had spent 6 weeks in the hospital with my first son and was having a bit of PTSD. She wasn't overly empathetic but assured me that we were going to get through this. Little did I know that she would not only become one of my close friends over the ensuing weeks and months but an angel and advocate for our son.

After Sue left the room my mom also introduced me to our roommate who was also named Amy, a nurse, and her son had a similar diagnosis to Christian. I was polite but not in a state to socialize unlike my mom. Over all of our time spent in the hospital I was always to impressed with my moms friendliness and sincerity with the various people we met and interacted with. She was continuously giving every person the benefit of the doubt and was not shy about sharing her love with every child and parent she met. She made sure that every person at Children's felt like a part of a camaraderie and that we all needed to help each other. We needed each other.

Christian was on TPN total parenteral nutrition. This consisted of a yellow bag full of fluid, electrolytes and sugars and a syringe full of lipids. He would get one bag and syringe every 24 hours and that was all his care really consisted of was changing these two things and checking his bandaging.

My mom left either taking the T (which we had taught her to do) or a cab- her preferred transportation method. I got settled in with Christian and began reading. After a few hours my bum started to hurt from the chair and I was tired. Really tired. Beau came over that evening after work and helped me get my bed set up. Then we laid down on the blue plastic pull out chair/bed and he held me so close. I needed it. I was so nervous for what the night would bring especially with a room mate. Her TV had been on playing various shows all day and it just felt weird being so close together but separated. I just wanted my own room so badly. It was late so after a little while Beau grabbed a gingerale from the kitchen room and headed off to catch the T home. I settled into go to sleep after saying a prayer. I fell asleep to the "click click" of his IV pump and the muted TV noises of the show being played in the next bed over. Above me was a window out to the hallway where the fluorescent light filtered through the curtain and the "ding ding" of various call lights and alarms could be heard. Every 20 min either Christians or his roommates nurse would come in to do something. But I did it. I got through my first night. And it wasn't even that hard.

Tuesday, January 27, 2015

Summer of 2014 part 1

Here we go. I am currently traveling for 2 days straight so I have nothing but time to finally document this last summer. Already, as I think back it feels like something in a dream. Was that really our reality for 4 months? How on earth did we get through it? I'm hoping to answer all of those questions and more through these series of posts.

I left off with Christians birth story in sending him over to Children's hospital with Beau. I had been able to hold him and love him for a few minutes after he was born and then I was alone. So very alone. The nurse took me up to the postpartum floor and left. I was still on the postdelivery "high" so I was happy, excited, optimistic. After a few hours I got a facetime phone call from Beau. They were in the NICU at Children's with Dr. Mooney, the on call general surgeon. I listened closely as Dr. Mooney explained what he had found in examining tiny Christians bowel and what the plan was. But despite my best efforts I couldn't hear him very well. After he finished Beau got on the phone and explained to me that they had found an atresia (closure) upstream in  Christians colon and a perforation up near the stomach. This meant that we would be waiting at least 6 weeks until they would attempt surgery on it. 6 weeks of waiting and then we would start at the beginning with feeds and working to go home. The average hospital stay for all Gastroschisis babies is 6 weeks and that immediately became our minimum. Essentially the clock to measuring Christians discharge date had stopped. The news was devastating to say the least. I cried. I cried hard. The kind of cry where you feel so much sadness you can't cry hard enough to let it out. Alone in my postpartum room I buried my face in my pillow and let my desperation out through my sobs and tears.Complications like the ones he had happened in 10% of Gastroschisis babies, I knew this because I had researched all of the different outcomes and possibilities. Of course we were the 10%.

It was hard to accept because  I knew the chances were slim but I had a date I wanted to be discharged by.  Prayers, fasts and an experience I had in the temple during my pregnancy had me convinced that Christian would have a miracle. I interpreted this as him defying the odds and having an off the chart stay of 2 weeks. Friends came to visit me and I tried to stay cheery. Their visits definitely helped take my mind off things but I was sad. The next morning my mom brought Tennyson and Beau to the hospital and I got ready to check out. I'm not sure why but the nurses seemed shocked I wanted out early so I could go see Christian. Weird.

We made our way across the street to Boston Children's and I was speed walking. I ached to hold him. We checked in with security and got our parent badges. When they asked for an estimate for how long we would be admitted that heart sinking feeling of "longer than we expected" came back. We took the elevator up to the 7th floor and approached the NICU reception desk. We once again had to sign in give our names and wash our hands. She opened the door for us and told us which pod he was in. As we rounded the corner and I saw him laying there I of course burst into tears. You never forget seeing your baby like that for the first time. All hooked up to machines and wires and laying there alone. When he heard my voice he opened his eyes and looked at me. I KNEW he knew his family was there. I talked to him and kissed him. I asked his nurse if I could hold him and she said yes but that we would have to wait for the respiratory therapist to come over and help with the ventilator. We eventually got him transferred and comfortable in my arms and we just stared at each other for a few minutes. It was so so special. This moments uniqueness became especially obvious to me as I looked back on it the following weeks when his eyes were swollen shut and he was in too much pain to hold. Our spirits once again connected and I felt his love and strength.

After I held him Beau had a turn and we took pictures. Our first picture as a family of 4 is of us huddled around his little incubator. Tennyson started to get antsy and push and touch everything in sight so my mom took him out into the hall. I opted to stay with Christian the rest of the day while Beau and my mom went home. How could I go home? What would I do there? But soon after they left I started to feel uncomfortable and and in the way next to his bed. To my surprise there weren't many other mothers next to their babies on the NICU floor. But I quickly learned that this is because there really isn't room for you there. They only had a few rockers so I was left with an uncomfortable swivel stool. I couldn't hold him so I held his hand talked to him and read a book. I soon began dozing off and my bum hurt from the chair but I couldn't bring myself to leave. My mother bear hormones were raging and I had already been apart from him for so long. I was pumping every 2 hours which was lovely in and of itself and so so exhausted. I finally called Beau to come pick me up around 6:30 to go home. On the way home I broke down again. I had more sadness then my brain and heart knew what to do with and I wanted to break the car window or smash something (I know I'm crazy). Usually when I get emotional I go running but 1 day postpartum made it obviously out of the question.

 I got home and went straight to bed. Aside from the pumping every 2 hours I slept like a rock. Every time I got up I would anxiously call his nurse, nervous for what she would say. Was he in pain? was he sleeping? Did he miss me? Was he scared? It was different every time. Sometime he would have had a hard time with "cares' (vitals, turning, suctioning etc) and would need a bolus of pain medication. Other times he would be sleeping peacefully. It didn't matter what the answer was I still cried. Like I mentioned those postpartum hormones are taken to a new level when they've got a crisis weighing down on them.  

The next few days were a blur. At one point Mary Staples came over with Marjorie to start the Ladies Group fairy- a daily thought or gifts from friends to show love. I just cried. How did I get such amazing friends? I then began getting something every day or so from one of my friends in Boston to lift me up. Not to mention all of the freezer meals that began pouring in. Being on the receiving end of so much service and love gave me a new perspective on mourning with those that mourn.

Monday, December 1, 2014

Thanksgiving 2014

We opted to stay close to home this year for thanksgiving.  An invitation to North Conway from some classmates was hard to refuse and it ended up being the most picturesque weekend. On our drive up there it began snowing and continued to snow through the night leaving over a foot of fresh powder the next morning. After night before prep for our thanksgiving meal the ladies hot tub'd under the fresh falling snow and the men sat around and chatted. The house we rented had two full kitchens which was a lifesaver for all of the thanksgiving dishes that were being whipped up. We woke up thanksgiving morning, got our snow gear on and played in the snow under the bluest sky. After a little while I went back in to start my portion of the thanksgiving feast we were going to have for dinner- Crostini's starter, banana cream pie and home made rolls and jam.

On friday we did some black friday shopping at the nearby outlets. I feel like there is no such thing as a good deal anymore. The outlets said they had a certain percentage off their clothing items but everything still felt so expensive just cheaper quality. I got one shirt and a few things for the kids and we headed out. But not before stopping at the Bavarian chocolate haus. Shops like this are what always get me in New England. This area of the country has quaint and classy and picturesque down pat.

The whole drive up we had a sing a long to Handels Messiah to get us in the Christmas spirit. I was giddy with joy!

Grocery shopping on thanksgiving eve in the snow proved to be quite the adventure.

Making a snow fort

watching the Macy's thanksgiving day parade

 My beautiful rolls

While we were waiting for Thanksgiving dinner to be ready and both our kids were asleep we decided to take a drive and poke around the beautiful area of North Conway. We parked the car and walked down the most beautiful snow covered path along a river. It eventually lead to a golf course where I dared Beau to make a snow angel.

I love him.