No News is Good News

 11/17

Currently Sitting in a Recovery Room

We can't count the number of times we've said, "We should write a blog to update everyone on Mack" over the past two months. We're sorry for the delay and we're not sorry -- life at home has been so good and so busy.

We're currently sitting in a recovery room waiting for Macklin to wake-up from an MRI. In order for him or any infant to have an MRI, they need to be sedated. It'll take a couple hours for him to come out of it, but he'll be back to normal in no time. Today did bring back some flashbacks -- the multiple cords attached to him, the host of people surrounding him, and watching him get carted away from us again. This time feels much more controlled, but it's a reminder to us that those first 90 days of his life are still so vivid in our minds.

So...What Has Mack Been Up To?

It's going to be hard to fit all that Macklin has been up to in the past two months into a concise blog post. Overall, it has been a wonderful time together and he has been doing so well. We haven't had any scares (except the one morning he woke up and his head was blue...we rushed into emergency mode...just to find out his blue bed sheet had left residue on his head - false alarm), and Macklin has been attacking all goals laid out in front of him.

Courtney's been able to still be on maternity leave and we are so thankful for the support of her company and team to allow her the time to be home and take care of Macklin. It has become a full-time job to chauffeur Mack around to all his appointments and manage his schedule. He's basically a local celebrity with all the people who want to see him, typically averaging between 2-4 appointments a week. Alongside this, Courtney is on the phone constantly with numerous providers, insurance, and hospitals. All these are good things as the continuation of care for Macklin is an important part of his journey as he develops and grows.

Developmentally, Mack has flourished since coming home. He was quite far behind after being bedridden in the NICU for 90 days, but once he was given freedom, he started developing quickly. For the most part, he is on track developmentally even for a 5-month-old. Some nurses have even used the word "normal" with us at different checkpoints, which is a word we never knew if we would hear associated with Macklin. His newest tricks have been rolling all over the ground, growing two teeth, laughing, and interacting with his big sister. He's truly a pure joy to be around every day.

Areas of Growth

Macklin has been working extra hard to gain weight. He was stagnant in weight gain in the first month of coming home, so we added a GI specialist to our doctor list to visit and started fortifying feeds. We also got to collect poop (this is quite the adventure!) to be tested and sampled to see how his absorption is processing in his body. The fortifying helped a lot and he's gained 2 pounds in the last three weeks and no issues were found in his GI tract. We need him to keep gaining weight and sucking down more ounces of milk every day.

The MRI today will be sent to Dr. Orbach in Boston who we have continued to work with closely for the next intervention Macklin will need for his Vein of Galen. Mack's follow-up echos and other appointments have shown some really good numbers for his heart and blood vessels -- God continues to answer our prayers!

Finally, Mack's developmental milestones are the other areas we continue to work with him on. He has some low tone muscle in his legs that is a direct result of his brain injury. We hope it is not limiting in his life and just means he won't be an Olympic sprinter. We do lots of rehab activities with him at home and his next goal is to sit unassisted. He is also working on some speech items to get some new vowel sounds in his vocabulary.

We aren't sure when his next surgery will be, but we would guess sometime this spring. Dr. Orbach does not take an aggressive approach to intervention and wants to monitor all the signs to let Macklin show us when he needs another surgery.

It has been so good to be home and to feel God's faithfulness in his promise to love us even through the hard stuff. We continue to pray fervently for more miracles, to give thanks for all that God has allowed us, and to love on others who we know are going through their hardest life moments.

"Let not steadfast love and faithfulness forsake you; bind them around your neck; write them on the tablet of your heart" (Proverbs 3:3).

Specific Prayer Requests:

• For a miracle, that this MRI would come back and doctors would be astounded that the Vein of Galen is gone!
• For continued weight gain, that the fortified feeds and GI system would provide Macklin with strength and growth.
• For developmental goals, that Mack would continue to hit every one he's challenged with and stay on track to be a "normal" infant in this world.
• For mom and dad, that we would find ways to get our buckets filled, work through our grief and trauma, and obtain ample amounts of sleep so we are our best selves!
• For Keira, to continue to show us what true love looks through the eyes of a big sister.