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.