Blessings for Benton: 2016 Recap of the Bertram Family of Four!

So it's hard to believe it's 2017 and over 8 months have passed since I wrote my last post. It's a time for New Years resolutions and one of mine is to be better about keeping my blog up to date and not let life run away without capturing these moments. Not only is blogging helpful so that I can better process my feelings but I also think it's important to showcase Benton's journey as other parents of micro preemies might want to know what life looks like 3 years post NICU. So with that being said it's time to update the blog!!!

Aurelia + Benton = Twinsies!!!

Love these little love bugs

8 months is a long time so I have much to update you on-- I will give you both the short and sweet version and one with more of the twists and turns. The short and sweet of the past 8 months is this- our little family of four is doing amazing - Benton got his gtube out in June, he is speaking more every day, and he is off all of his heart meds and now is only on asthma meds and a daily vitamin. His progress is nothing short of a miracle. In addition, we went on our first family airplane trip all the way to Hawaii for Christmas and it couldn't have gone better. Aurelia is crawling, babbling and feeding herself. God is indeed good.

Pure Happiness <3

First Time Playing Together

Getting Ready for Bed with my Two Little Loves

Now back to the long version :)

Adjusting to being a family of four definitely took awhile. While Aurelia has seriously been an absolute angel sleeping well, not colicky, and latching easily it is always a seismic shift to welcome another member to your family unit. After the first month when we were inundated with visitors it was time to settle into a new routine. I was lucky enough to have a 5 month maternity leave and I wanted to truly know what it was like to be a stay at home mom of two and boy did I get that experience. I have to hand it to every stay at home mom out there it is a tough job but also the most rewarding. I cherish those moments every day now that I am back in the office. Over the summer we took advantage of my maternity leave and took a road trip to Michigan (Aurelia's first trip out of state), headed to the Eastern Shore and went to the beach (both kids were not fans), enjoyed outdoor picnics and concerts, and even went to Annapolis to eat crabs. All of these adventures helped not only solidify our family unit but also provided Benton the opportunity to truly explore his surroundings and go on adventures.

Our Trip to the Eastern Shore

Fun times in Annapolis :)

Not a fan of their first outing to the Beach

Starting in April we officially took Benton out of winter isolation and threw him out into the world. now that he was mobile and had been off oxygen for almost 6 months we felt it was time to let him explore and get more socialized. We began by taking him to the playground multiple times a week and enrolling him in a little music class. Entering such new environments definitely put Benton outside his comfort zone. Each trip to the playground would cause Benton to try and run away from the other kids and escape after about 5-10 minutes; with similar behavior at music class. During this same period, I was also lucky enough to get him accepted into a Strong Start playgroup which has really helped him socialize better over the past months. Despite his rocky start Benton has become much more socialized over the past 8 months especially since we hired a nanny (when I went back to work) who takes him out daily to storytime, playground playdates and many other activities with kids his age.

Our Handsome Boy

Participating in the Strong Start Playgroup

Since April he has truly blossomed in every possible way. His speech which was really just some small babbling or silence in the early part of the year kicked into high gear around September and then in November went into overdrive. Now it seems like every day he is saying more and more words, identifying everything in books and pictures, and has even started to ask questions and say random phrases like "whatcha doing mama, "oh boy"', and "correct" (if you pick out what he is asking for). He also sings and knows all the words to dozens of nursery rhymes. When his speech picked up in November I truly breathed a sigh of relief and honestly felt my shoulders unclench for the first time in the over 3 years since his birth. I know it may sound silly but until that moment I was never sure he would have a "normal" or typical outcome in life. For so many years I felt like I was waiting for the other shoe to drop...after your kid is born at 23 weeks and they tell you to say goodbye to him and his oxygen levels are below 50% for hours upon hours on end --- lets just say the odds for a typical childhood aren't good. When Benton learned to crawl - I breathed a sigh of relief, when Benton learned to walk - I cried tears of joy, when Benton no longer needed a feeding tube-- I couldn't believe our unbelievable blessings, but throughout this all Benton wasn't talking and I guess I felt that might not change. Despite the encouragement by his therapists, speaking was the last piece of the puzzle - the one thing that very much differentiated Benton from any other his peers NICU or otherwise. Finally this Fall we saw real progress on this front and every day I am so grateful to hear him talk. Every utterance is music to my ears, every new word a wonderful surprise and when he strings words together I can't help but cheer. God is indeed good.

Family trip to Put-In-Bay, OH

Summer splash time

The last time I updated Benton was still on multiple medications each and every day with his most important medicine being his pulmonary hypertension medication for his heart (sildenafil aka viagra). This medication used to mean the difference of being hospitalized and on a ventilator to being able to be off oxygen and at home -- very important if you couldn't tell :) Since January we had started weaning the sildenafil and by May our cardiologist was ready to pull the plug and fully wean off the meds. We honestly couldn't believe it. We were so ready to be off this med- it is incredibly expensive and our insurance is a pain in the ass to get it covered but we were always willing to jump through those hoops if it meant we had the medication and Benton could be home with us. Well as the cardiologist said Sayonara! As of May he went off his sildenafil and as of august we went back for a checkup to confirm his echocardiogram and EKG looked good despite the lack of medication. All the tests showed that everything looked amazing and according to the doctors we don't even have to go back for one whole year!!!!! With that medication weaned Benton now only takes his asthma medication for his chronic lung disease and a regular multivitamin. Our little boy is truly amazing!!!

Spring Picnics

Aurelia Doing Tummy Time and First Time Sitting Up!

I'm almost forgetting one of the biggest updates of 2016....Benton got his feeding tube removed!!!!! Yes, you read that right he is tube free! In one of my last updates I said he was no longer getting calories in his tube and by March/April they said we could even stop giving him water via the tube as he had learned to successfully drink from a straw and sippy cup. Once we were no longer using the tube for calories or water it was just a matter of time before we could be tube free :) According to our GI we could pull the tube once we hadn't used the tube for 3 months and kept his weight up. Well as of Late June we did a weight check and were given final permission to pull his gtube!!! Now I know I should have been jumping for joy that day but honestly I was so incredibly nervous and excited - basically just a ball of nervous/excited/anxious energy. While I couldn't wait for us to be tube free in theory the reality scared me. What if Benton started losing weight and we couldn't supplement and he ended up needing another feeding tube or another surgery? What if Benton got sick and we couldn't help keep him hydrated? But at the end of the day Joe and I knew he was ready to take this big step. What's funny is that while removing his gtube sound like a big scary ordeal in reality it took less than a minute. We laid Benton down on his bed and simply deflated the gtube's balloon, removed the tube from his stomach and put a band aid on top. By the next morning it was fully closed and had all but healed. Now his stomach looks like he has an extra belly button or a dimple where the gtube button used to be but that is all that remains of such a major aspect of my son's early life. It truly is unreal how something that affected every aspect of your daily existence can all of a sudden disappear. Benton's feeding tube had meant that we had to bring feeding tube supplies (feeding pump, extra bags, formula, extra buttons, and syringes) wherever we'd go and often we would need to find secluded places in public to give him his tube feeds. Now being tube-free we can just pack up his lunch just like you would for any other child-- what a weight that has been lifted!

The day the Gtube came out!!

Smiling since he is Gtube free :)

Other major developments: Since Benton was turning three we had to be reevaluated for therapy services by the D.C. Public School system which would also use the evaluation to create an IEP (individual education plan) for Benton once he started preschool. During the evaluation Benton was a little wild. He had been going through a stage (at least we hope it's a stage!!) where he liked to try and escape from rooms/park/music class/etc and also wasn't listening to directions very well. This compounded with his delayed speech and his refusal to show off his fine motor skills meant that while we easily met the criteria to continue therapy services it also led the evaluators to recommend placement for Benton into a special education only classroom rather than an inclusion or general education classroom. This did not make us happy in the least bit. One of the main reasons being that Benton's therapists believe he needs to be around high performing peers to model good behavior and show off their speech and language skills so he can continue to make great strides. Another reason being that the special education only classroom near our home is in a school that is not well respected on the Hill. Not that it's a bad school but it's test scores are definitely lacking...it's an option but definitely wouldn't be my top choice. After the evaluation we made the decision to keep Benton home working with his current speech, occupational, feeding and physical therapists for another year and potentially start pre-k in the Fall of 2017 when his cohort would normally start school. We felt that if Benton was a typically developing kid he wouldn't start school until Fall 2017 anyway so why rush him especially since he was born premature. As we approach this coming school year we will tour the schools and see what is a good fit and also see if he has made enough progress by the Fall to get placed in a general education or inclusion classroom.

Corn Maze at the Pumpkin Patch

Fun Times with Family

Pumpkin Festival at Butler's Orchard

Aurelia's turn at in the Pumpkin Bumbo

Getting ready for Halloween

The Family as Old McDonald's Farm for Halloween

Finally, in November we had Benton's latest pulmonology checkup as well as a hypoxic challenge. The hypoxic challenge was to test how Benton would do a in a reduced oxygen environment like that of an airplane. We were doing this test so we could travel to Hawaii for Christmas for our first big family vacation!!! Well the hypoxic challenge was very interesting- first they tried to put a hood over Benton's head but he was having none of that. Then they put a mask on his face and pumped 15% oxygen into the mask (rather than the 21% of normal room air). Throughout the test, the staff took pulse oximeter readings every minute for 20 minutes and then took the mask off and tested Benton's oxygen levels as they rebounded post-test Benton did amazing! He had baseline oxygen levels of 95-97 and when taking the test his oxygen levels only dropped to 92. Even though he had such a great showing during the test his pulmonologist couldn't say that Benton absolutely wouldn't need oxygen on the flight since the test was only 20 minutes and we would be in flight for 12 hours. Overall Benton's lungs are doing the best they ever have and so while we are allowed to fly his pulmonologist ultimately recommended we bring oxygen on board our flight. Good thing he did because while Benton did well on the two 5.5 hour sections of the flight he couldn't keep his oxygen levels up on the direct flight home so we eventually ended up using our portable oxygen concentrator in flight. Even though it was a pain to carry a portable oxygen concentrator, supply bag and pulse oximeter along with the plethora of other items you need to carry when bringing two kids on board a 12 hour plane ride (we brought everything but the kitchen sink!), the plane ride was so incredibly worth it because we got to arrive in beautiful Hawaii!!!!

Benton's Third Birthday!

Our two week holiday in Hawaii for Christmas was one of the best of our lives. Benton and Aurelia got to try out swimming in Tutu and Grandpappy's pool, we went on daily adventures and checked out the beach, saw friends and family and ate tons of yummy food. Aurelia and Benton got to really know their cousin Sunny and Sunny and Aurelia got along famously. I can't wait to watch them all grow up together!

Overall the past 10 months there have been huge changes for our family. We have welcomed a new member to our family, Benton has made massive strides across so many fronts, and we went on our first major family vacation. 2016 could not have been more exciting and amazing for our family and we hope for continued progress in 2017. I started this blog post talking about New Years resolutions and keeping this blog more up-to-date is one of my New Years resolutions I plan to keep so please check back for future updates.

Some more fun pictures of our family :)