2018: The First Year Home

To say that 2018 was a big year for our family is a huge understatement! While 2018 brought some of the lowest lows I’ve ever experienced, it also brought some of the very highest highs. This year was truly transformational for me. They say that becoming a mama changes you, and becoming a medical mama changed me so much. Watching our boys kick butt and take names has been my absolute joy, and the opportunity to be their advocate and cheerleader is such a blessing.

I am truly blown away at how transformational 2018 has been for our whole family. It’s easy to miss little changes in the day-to-day, but looking back at the year leaves me with deep gratitude for what God has done.

January

January was a rough month. We were SO excited to have Ben come home January 1st but we spent most of our time that month going back and forth between home and the hospital. When Jack transferred hospitals, it was like we started all over again! We had to navigate a new system and new people and learn how to truly advocate. Somewhere in there, Ben nursed for the first time, which was a huge milestone, especially considering how crazy our schedule was. On January 25, Jack had surgery to place his g-tube and repair hernias and he came home on January 31st with oxygen and 100% tube fed. January took its toll on me but it was really awesome to bring both boys home within the same month… by the skin of our teeth!

February

We spent February getting settled in at home with two babies, home oxygen, and a feeding schedule that included nursing, bottle feeding, tube feeding, and verrrrry little sleep. We had everything set up in our living room to accommodate all the medical equipment.

We had outpatient ROP (retinopathy of prematurity) eye exams, weight checks, Synagis (RSV injection) shots, and visits to pulmonology. Jack also began speech/feeding therapy in February. I realized we were not given referrals for other therapies, so February was spent advocating for OT and PT.

We celebrated Valentine’s Day with steaks at home and took our first walk outside as a family. February was a hard, hard moth, but we survived!

March

March brought first real smiles which were very welcome in the midst of the chaos! I was balancing working mostly from home and running to appointments. We continued our ROP exams and other follow-up appointments and Jack had his first outpatient swallow study (which he failed). During one of our pulmonology appointments, we got cleared to take Jack off oxygen for about 15 minutes each day and I got to carry him upstairs cord-free for the first time for a bath. It was the first time I had held him without being tethered to something…in six months!

April

Easter kicked off the month of April and we took the boys to church for the first time! We started home health OT and PT and finally graduated from ROP exams! April was a BIG month for oxygen requirements. Jack got to start spending even more time off o2 and we got to spend time as a family in other parts of the house! He weaned off daytime oxygen completely later in the month and we even moved the boys to their own room upstairs for night time sleep. Jack’s g-tube came out accidentally and super dad replaced it so we were able to avoid a trip to the hospital!

We ended April with our very first non-church, non-doctor’s office outing–the zoo with friends! The boys got to meet lots of family in April, too!

May

May was full of surprises! Jack got to start taking small volumes of milk by mouth, and we started both boys on purees! I thought I was ready to be done with nursing and pumping, but I stuck it out a little longer and Jack even got to nurse a few times. I got to tandem feed the boys once, which was an experience I am forever grateful for. We saw huge leaps in feeding development for Jack and I got to celebrate my first Mother’s Day. The boys went for their first swim in our kiddie pool!

June

June was such a fun month! We celebrated Father’s Day, got to visit with my dad, and the boys went for their first swim in a big pool with our friends! They made big strides in head control and supported sitting in therapy. We got to meet the Titans head coach at a NICU event but the only picture I have from that day is of the boys with our favorite neonatologists, haha! Ben got his bottom two teeth in June and we took the boys’ first road trip to KY for my cousin Kara’s wedding. Jack passed a swallow study on nectar-thick consistency liquids which allowed us to start working more aggressively on bottling!

July

July is one of my very favorite months! We celebrated 4th of July with friends, I stopped pumping and nursing, we had Jack evaluated for lip and tongue ties, (confirmed!) Ben started sitting and holding his own bottle, Auntie T came for a visit, Jack ditched night-time oxygen and got his first two teeth, and we made a our first overnight trip to visit friends in southern Indiana! We started Jack in some additional OT to help with the restriction cause by his ties, and we learned so much that helped us determine next steps for feeding and gross motor progress.

August

August was a BIG month! Jack’s eating took off and we decided to go ahead and try a wean from tube feeding. It took much less time than we anticipated and he showed us he really wanted to eat and drink! We made the decision to go ahead and have his ties revised and immediately after revisions, his oral skills skyrocketed, as did his gross motor skills! We are thankful it ended up being the right decision. In August, Jack became 100% oral fed!! This was truly amazing.

We took the boys to their first Nashville Sounds baseball game in August, and traveled to our college town for a friend’s wedding. We also got to attend our first annual NICU reunion!

September

Birthday month!! Our friends and family helped us raise money to donate Zaky hands to our NICU, and we celebrated the boys’ birthday in a BIG way! We were so grateful to everyone who donated and who helped us celebrate such a momentous year. The boys also attended their third wedding of the summer!

October

I was excited to spend the first out-of-NICU October with the boys. There’s just something about October that is so much fun. We visited lots of pumpkin patches with friends, had fun at Boo at the Zoo with our favorite nurses, and went trick-or-treating! We had family pictures taken, too! The boys also had their one year NICU developmental clinic follow-up, and we dropped off the Zaky donations!

November

There’s a theme to November’s pictures, and I don’t like it! We spent a lot of time at the doctor’s office. Maybe the Target and Aldi trips are to blame, we’ll never know. The boys got their SMO braces for ankle support in November, Jack made his first ER trip, we celebrated Thanksgiving with friends, and visited a Christmas tree farm! The boys became super mobile in November. Jack’s crawling really took off and Ben started pulling up and cruising the furniture!

December

December FLEW by! The boys got their first ear infections, had eye exams, and rounded out their last speech, OT, and PT appointments of the year. It was so magical to experience the boys’ first Christmas HOME. The time at home with them this month has been irreplaceable, and Justin and I have been thrilled to experience so many really sweet milestones with them in the last week or so. They are independent, chatting up a storm, love to play and climb, and have started taking steps behind a walker! It feels like our babies are officially toddlers. *cue the waterworks*

1 surgery | 3 swallow studies | 169 therapy sessions | 58 doctor’s appointments

WE DID IT!

2018, you have been one H-E-double-hockey-sticks of a year but I can’t imagine it any other way. I am truly blown away by God’s blessings of life and health for our family, and I feel like we have had a front row seat to miracle after miracle.

Thank you for sharing 2018 with us! We can’t wait to see what 2019 has in store!