Standing and Walking and Eating, Oh My!

The common theme in life with Beckham is that everything is always done in his own time. It was that way with coming off 24/7 oxygen support (which he was on over a year despite most of his doctors saying he shouldn’t have still needed it), it’s been that way with all of his surgeries and recoveries. Every milestone he’s hit has been when he’s ready, despite how hard I’ve tried and pushed for milestones in the past. I guess my obsession with needing to be in control needed to be challenged or something!

The first time Beckham ever pulled himself up to a standing position all on his own was on 9/7/18. He was 17 months old and after months and months of building back up his strength, plenty of physical therapy, and a lot of encouragement from mom and dad, Beckham was finally able to pull himself up to stand. From there he began cruising along furniture pretty cautiously. It took another four months before Beckham took his very first step by himself. On 1/21/19 he took two single steps, catching himself on the couch or in our arms. These tiny steps were exciting but it took a few more weeks before he had the confidence to give walking an honest try.

On Friday, February 8th, Beckham actually started walking! Mykel and I were together at one of his doctors appointments and while we were waiting, we encouraged him to walk back and forth across the room to one another. Beckham has “played this game” many times before, but never without holding tight onto one of our hands. After about 10 times back and forth he finally realized he could do it all by himself! Beckham went from taking 1-2 single steps, to 4 steps, to 6 steps, to walking the entire hallway of the medical building! We stuck around for another 20+ minutes walking everywhere possible and screaming with excitement. All of this happened in a span of 5-10 minutes and he’s been walking more and more every day ever since.

This is such a huge milestone for him. Mykel and I are insanely proud and we were both emotional as we drove home that day. Beckham passed out in his car seat pretty quickly after all that work and physical exercise. While he was sleeping peacefully in the back, Mykel and I were able to recognize all that we’ve each been through and how far our little warrior has come. We shared tears of happiness thinking about all that Beckham has been through. But he doesn’t ever let that stop him. He’s just a few months shy of two years old, and is finally walking. Something we’ve been wanting and working hard towards for a very long time. Not only is he walking and taking his first steps, but he’s starting to walk all over the place like he’s been doing it forever. As of today, he can now stand up from a sitting position without any help! He’s gained the strength to squat down and pick something up without just falling on his bum like he used to. He can climb on and off the couch and is challenging himself daily.

In addition to these physical achievements, Beckham has continued to make progress with his oral eating. As I’ve shared previously we started an intensive feeding therapy program that was 5 days/week for 6 weeks. Unfortunately two weeks into the program, our insurance decided to deny paying for feeding and occupational therapy through the Phoenix Children’s Hospital program. They claim that we should switch these services to the state and have someone from the department of disabilities come into our home instead. Our feeding team is trying to fight this still (it’s now been a few weeks since we had to stop going), and it’s been incredibly frustrating. For insurance to deny and stop these services to a child who is making such huge progress is ridiculous. Especially when what they are trying to get us to do instead is nowhere near the same thing.

I don’t want this road block to put a stop to Beckham’s progression, so we’ve been working our butts off at home. I’ve taken all the tools we’ve been given so far and have been working with him every day. We have also continued to see our GI feeding program director and dietician weekly (these are considered regular doctor appts so insurance can’t deny them). Each week we’ve been decreasing the amount of tube feeds that Beckham gets, while increasing the amount of food he takes orally. We are also keeping a close eye on his weight to make sure he doesn’t lose too much. Thankfully he’s actually gained weight two weeks in a row! (His weight gain has only been a small amount of ounces, but gains are far better than loses in weight, especially for a heart kiddo.) The biggest thing that’s made this possible has been his acceptance of Pediasure supplemental drinks. As long as Beckham can drink 2-3 of those a day he will receive the necessary amount of calories and nutrition, while allowing him to build his skills and tolerance to table foods.

I don’t want to jinx anything, but as of Friday we have officially stopped ALL tube feeds! This is a crazy concept for us since Beckham has been 100% tube fed for over a year now. It’s a little harder and scarier to let go of tube feeds than I would have ever expected. He still receives his medications and some additional water via tube, but that’s it! We go back in next week for another weight check and to make sure he is continuing to drink and eat enough calories. But as usual, Beckham has gained the reputation of being a rockstar! That’s literally what his dietician said last week. Even without being in the actual IFT daily program he is showing everyone what he’s made of. And it’s all been in his own time. 6 months ago he would not have been ready for this. Despite how hard we all wanted it and our once a week feeding therapy appointments, Beckham decided when he was ready to take that leap. And we are so proud of him for it.

Next week we head back to Stanford for another cardiac cath. This cath will provide the most up to date information on how Beckham’s heart, pulmonary arteries and lungs are doing. We will find out if his last cath in November made any long term differences, or if things are getting worse. We already have a good idea based off his echos and know that another surgery is imminent. But we are praying that caths, artery ballooning, and whatever else they can do will allow us to safely put surgery off as long as possible.

Overall, 2019 has started off to be a pretty dang good year for our family. I know we have some major challenges ahead of us, but I’m grateful for these positive experiences and the progression that we are making right now. I’m now 31 weeks along with baby #2, which means we will be holding this little peanut in our arms in just 8 short weeks! A few weeks after that our baby turned toddler will be turning 2! And Mykel will have successfully completed (and dominated) his first year of medical school! April is going to be absolutely insane and just thinking about everything at once gives me anxiety. But I have a feeling once we get to meet this new little one, and once I can kiss his sweet chubby newborn hands, feet and cheeks, that everything will work out.

So here’s to 2019. Starting off strong. Accepting the craziness. And praying that another open heart surgery can safely be pushed back as long as possible.

Xoxo,

Heart Mama

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Milestones

In one week Beckham will be 21 months old. That’s approximately 639 days we’ve been able to hold and love on our miracle baby. Well, minus the days and weeks after his heart surgeries that I could not hold him. But you better believe I loved him extra hard during those days to make up for it. And in less than three months we will be adding another baby boy into the mix. This pregnancy has gone by so fast and I feel like there’s still so much to do before baby comes. But do you want to know what my number one focus has been lately? Planning Beckham’s second birthday party!

This may seem silly or even a little ridiculous to some. Especially with how young B still is, it’s not like he will remember how great his birthday party was. I guess the truth is I do it more for myself. But if you knew how precious each birthday and each milestone really is with a medically complex child, you might be as ridiculous as I am. Because the joy that we feel celebrating every year, month and day with Beckham on this earth deserves to be celebrated. Of course I hope and pray every day that he lives a long, meaningful and happy life. But the truth is that his heart and anatomy are unpredictable. There are days where I have a hard time balancing reality, expectations, and always staying positive. For the most part I do a pretty damn good job staying positive and looking forward to the future. But the harsh reality is that I know too many heart warriors who have lost their battle on this earth and gained their angel wings. This is my biggest fear in life. We continue to love and remember each of those warriors. And I’m not even just talking about heart warriors, but cancer warriors, medically complex warriors, angel babies who never made it this earth, and many more.

I’ve learned through this journey that we can’t live in fear. Doing so is far too exhausting and not to mention unhealthy. Having a medically complex child allows us to have a unique perspective about living in the moment and celebrating each joyous milestone. I remember hearing the statistics before Beckham was even born. Each year over 40,000 babies are born in the US with a congenital heart defect. 8,000 of these babies will not live to see their first birthday. That is 20%. And this statistic includes any and every CHD. Who knows what the numbers are for complex CHD’s. I always told myself that if we made it to Beckham’s first birthday then that meant we were in the clear. I cried a lot during that first year. Those first 5 months of letting B grow at home before his first open heart surgery I spent a lot of days in bed, just holding him. In some ways, the anticipation, fear and unknown leading up to that first surgery was almost worse than the surgery itself.

When Beckham had his third open heart surgery last April, just 3 days before his first birthday, I realized that you’re never “in the clear” with complex CHD. The number of adults living with TOF/PA/MAPCA’s is very small. Thankfully it is increasing as medical advancements and research continues. In the last decade, death rates for CHD’s have declined almost 30% due to medical advancements and research. This is why we push so hard for CHD awareness, fundraising and research. Because despite this significant decline, CHD’s still kill twice as many children each year than all forms of childhood cancer combined. These facts and statistics are unacceptable as far as I’m concerned. We can do better. And we have to do better for our heart warriors. For Beckham.

Why am I including these CHD facts in my post today? Because this is our life. And the lives for millions of heart warrior families out there. Plus my favorite week is coming up: CHD Awareness Week. February is the month for CHD and the entire week leading up to Valentine’s Day is all about spreading CHD awareness. This year our family will be donating to the kids inpatient at our local Cardiovascular Intensive Care Unit (CVICU) at Phoenix Children’s Hospital. It’s something I’ve wanted to do for a while now, and I’m excited to finally get started and continue donating regularly. We also plan on branching out to provide NICU donations later this year. We’ve recently reached out to our friends and family, asking for donations to help us purchase new toys, books and gifts for these kids and families. We are so grateful for the donations that we have received thus far. It means so much to us that people want to help. And it will mean so much to the families to know they are being thought of and remembered as they battle CHD. If you would like to donate and help us bring joy to the children and families currently inpatient we would truly appreciate any help we can get. Having lived in the hospital ourselves, we definitely know how much these donations mean to these families.

If you would like to donate here are a few links to do so:

PayPal: PayPal.me/MMFrey

Venmo: @mykel-frey

There is currently no cure for congenital heart defects. Yes we have surgeries, procedures and medications to help, but CHD is a lifelong battle. So I will continue to go overboard, celebrating every moment and milestone. I will keep taking a hundred photos and videos of every bit of progress that Beckham makes. I will throw him parties to celebrate every year. Because every day he fights with each beat of his perfectly imperfect heart.

Xoxo,

Heart Mama

Happy Thanksgiving, Merry Chrismukkah and Bring On 2019

Just like that the crazy holiday season is over and we are now in 2019. The last three months of the year are always hectic and go by way too fast. Especially when you add in weekly medical appointments for both Beckham and I, a trip to Stanford, a trip to Portland and end the year in LA. But it’s been so fun seeing so many friends and family.

So because I’ve really slacked at posting about our holidays and travels this is going to be one jam-packed blog post with photos from the last couple months. Fair warning, you probably won’t make it to the end, but if you do I’ll be pretty impressed.

Thanksgiving

This year was our first year having Thanksgiving “on our own” aka as grown adults and not with either of our parents. I would add without family except that we’ve learned the last few years that friends are family. And we are lucky enough to have some of the absolute best! Our friends Jamie and Dan offered to host Thanksgiving at their house so we made our favorite dishes and headed over there for the day. Between our two families and their Aunt Joanne we had quite the feast. It was legitimately the most food I’ve ever seen at a holiday meal, even with past gatherings having more people. We had so many appetizers, a big turkey, delicious sides and of course desserts. And leftovers that lasted daaaays. It was a perfect day and we were grateful to have the perfect people to spend it with!

Portland

Next up was our trip to Portland. This one was just Beckham and I (Mykel had a total of 7 tests in the span of 9 days so we figured it would be a good time to head out of town). It was also my first solo flight with B since we usually drive everywhere besides the two flights we’ve taken for caths at Stanford. Luckily things went pretty smooth and we had very kind people around us who offered help when I needed it.

{Side story: on our flight home while in line to pre-board Beckham was signing with me and asking for “more” “please” to keep watching his iPad. The lady behind me in line tapped me on the shoulder and asked if we spoke ASL (American sign language) and signed as she spoke. I told her that we only know a little bit and Beckham just started learning. She went on to tell me she is deaf and I used what little sign I knew and also spoke to explain I took a class in college and love to learn ASL. She invited us to sit by her on the plane and sign and we had the best time as she taught us (or refreshed my memory) so many signs. She adored Beckham and shared her story with us how she was hard of hearing as a child and went completely deaf in her early twenties. Sign language is such a beautiful language and it made me excited to keep teaching Beckham until he is able to use his words. I felt like this woman also genuinely appreciated having someone to talk/sign with during our flight. I know this was a completely random side story but it felt special and is something I want to read back on someday and remember.}

Back to our Portland trip! Beckham and I were SO excited to see my parents but they might’ve been even more excited to see us. We spent 10 days there and packed in everything we could. Even then we still didn’t get to see everyone we would’ve liked to. A few of the highlights of our week included the obvious seeing friends and family, play dates, my moms group Christmas brunch party (a group I’ve been a part of since B was about 3 months old when we went to a new moms group through providence), getting a pedicure, the Portland Children’s Museum, and even a trip to Aloha High School to visit our Warrior Sparrow family! Unfortunately we didn’t get to see my brother, sister in law or Beckham’s cousins because they were fighting colds. It was a huge bummer and I’m still sad we couldn’t see everyone. I guess that just means we will have to make another trip soon!

Since moving away from Portland I’ve realized how much I miss it and love it there. If I could have the weather of Southern California with the people, culture and food from Portland, I would be in heaven! It’ll be interesting to see where Mykel and I end up. Obviously wherever we go for his residency might play a role, although I’m secretly hoping we can just stay in Arizona so we don’t have to move again!

Overall Beckham and I had a wonderful time visiting “home” and here is an assortment of photos from the entire trip.

Christmas

Christmas this year was pretty low key. We decided to stay home and Mykel’s parents came over in the early afternoon to open presents and for a nice ham lunch. Unfortunately I missed a few days in a row of my anti-nausea medication and really paid for it all day. I threw up multiple times and spent a lot of time laying on the couch. Despite that we had a wonderful Christmas in our little Arizona home.

The thing I was most grateful for this year was to be home for ALL of the holidays. And not only home but relatively stable and not dealing with narcotic withdrawals or the awful surgery recovery period. I know far too many families who spent the holidays and/or Christmas in the hospital this year and they were all on my mind all day. While many were focused on opening presents and being together as a family, there are so many others who’s only Christmas wish is for their child to be healthy. I also want to give a shout out to all of the amazing medical care givers out there who spent the holidays working and taking care of their patients. Having spent Thanksgiving inpatient last year it meant a lot to me that our medical team was still there by our side instead of at home with their own families. It takes a village both at home and sometimes inpatient at the hospital. So to everyone who has been a part of our village I just want to say thank you. I genuinely appreciate and am deeply grateful for each person who has supported us, helped us, loved us, and cared for us during our journey with CHD. We are truly blessed and so lucky. I don’t think I could ever express just how grateful we are for each of you. But I’ll certainly always try.

This Christmas was definitely a lot more fun with Beckham being old enough to open his gifts – and love them! He had a Mickey Mouse filled Christmas and 99% of his gifts were all about Mickey. The only dilemma we had is that he was so excited about each new toy that he didn’t want to move on to open the next gift. And he was completely spoiled from friends and family both close and from afar. Some of his favorite gifts so far include his new Mickey water bottle, a little Mickey push car, a blow up Mickey ball playhouse, stickers and his new paw patrol toothpaste (although he’s barely seen the show he somehow loves paw patrol whenever he sees it). These are just a few of his favorites so far, but he pretty much goes between all of his new toys and has fun spreading them around the house. I’m also pretty excited to use the OdySea Aquarium family pass that we were gifted this year and I know it will provide fun days and even better memories.

New Years

Last but not least was our trip to Whittier, California (LA) for New Years. Some of you may not know this but Mykel was adopted and recently got in touch with his birth mother Meredith. It was actually right around the time of Beckham’s birth when we were at Stanford that they began emailing back and forth after getting connected on Ancestry.com. Well since that time we’ve met them (Mykel’s birth mom and her husband) quite a few times. We’ve gotten along really well with them and made plans to visit their home and meet Mykel’s two half-sisters over New Years.

Relationships revolving around adoption and birth parents can be a very interesting subject. Many people do not know what to say or how to word things. And each person who is experiencing something like this can have an entirely difference experience anyways. So as a little PSA or education for anyone interested in what the proper wording is: Mykel’s “parents” are the ones who raised him. Meredith is his “birth mom” or “biological mom”. We personally prefer the term birth mom but tend to just call her by her name, Meredith. So when you ask about his mom we will automatically talk about his mom who raised him (Lisa). Obviously each persons situation can be unique but these are just general terms and wording that are universally appropriate.

Anyways, we had the opportunity to meet Mykel’s half-sisters and one of them is married so we met her husband and their adorable 7 month old baby boy. We weren’t quite sure what to expect or how they would even feel about it, but everything went even better than what we expected. At least on our end, haha I can’t really speak to what their feelings were. But I think we all thoroughly enjoyed getting to know one another and spending the last 4 days together.

The one thing I knew I wanted to do while visiting California was go to the beach. They took us to their favorite spot at Laguna Beach and it was absolutely beautiful. A little windy but overall the weather was great. I’ve said it before and I’ll say it again, the ocean just does something to my soul. It gives me peace, it centers me and it refreshes me. Not only do I love basking in the sun when I can, but the sound of the waves crashing and the feeling of the sand between my toes brings me such joy. It was so fun that Beckham was able to walk with us along the beach and dip his toes in the ocean. Although he wasn’t a fan of the cold water on his feet he loved walking back and forth on the sand. And those little foot prints in the sand were basically the cutest things I’ve ever seen in my life.

In addition to going to the beach, our long weekend was filled with lots of card games, delicious food and even better conversation. We went to downtown Disney and Beckham pointed out every single thing he saw with Mickey Mouse. The Disney store was fun until he got frustrated because he wanted everything in the store haha. To our surprise they had a Salt & Straw in downtown Disney so we were able to show them a small taste of Portland with some of our crazy ice cream flavors. If you don’t know what Salt & Straw is I suggest you google it. But basically it’s a slightly overrated but still fun and delicious ice cream place that originated in Portland. It’s also a typical tourist and local spot in Portland to indulge in ice cream, and they’ve grown and expanded to Seattle, San Fran, LA and San Diego.

Anyways we had a wonderful time and look forward to seeing them all again. We were welcomed in with open arms and are excited about these new and unexpected relationships we have in our lives. Plus it was so fun for Beckham to meet and have another little cousin to play with!

Well if you made it this far I am genuinely impressed. 2018 was a crazy year with our little nugget turning one, his most difficult and life threatening surgery yet, the most gratitude we’ve ever felt for bringing our baby home from the hospital to continue to grow and heal, moving to a new state, Mykel starting (and rocking) medical school, a surprise pregnancy, and everything in between. Somehow each year gets harder but also better and I have a feeling 2019 will be no different.

Some of my personal goals for this new year include living in the moment instead of worrying and stressing about the future (which is much easier said than done when things like newborns and open heart surgeries are in the near future… but hey I’m going to give it a good try), less TV and more books, decluttering and working harder to keep the house picked up each day, being more conscious about living a greener life with less single use plastic and making more environmentally friendly choices each and every day, and planning monthly family days that are meaningful in strengthening our own relationships and also serving others. I know it seems like a lot, but these are all habits and goals that will help shape me into the person that I want to be. As a whole I think I could say my number one goal for 2019 is to be more conscious about all of my daily decisions. And to use each day to work on bettering myself and my family.

Wishing you all a Happy New Year and hoping you can take the time to reflect on your personal goals as well!

Xoxo,

Heart Mama