Today we had our first follow up appointment at Children's. Matt took the day off as it's quite the feat to travel with this guy right now. Good news, Ben gained again since his last check up. He's now 7lbs 5oz. On a funny note, as soon as he was put on the exam table he pooped on the technician. Lol it's just his way for saying he's done with all this medical stuff. Then half way through his ECHO ultrasound he had a meltdown for milk and needed a bottle interrupting the test. Lol he does keep us laughing throughout all of this.
Next, we met with the team who was very nice. His ECHO actually showed no further signs of pulmonary hypertension. I was dreaming they'd say this would be enough to take him off oxygen and see you in several months. A girl can dream. However they're still concerned about Ben's slight retractions or increased effort to breathe. Instead of a green light to go, we are now seeing a Pulmonologist on Friday who will help us navigate the breathing. While I'll take the fact the pulmonary hypertension is resolved, I was disappointed that we are now seeing yet another specialist. Though I respect that "we need to figure this out." The team was very supportive about what we've been through and what lies ahead. We got our appointments made for Genetics and Neurology and early intervention assessment. So much follow up. Its like a part-time job on top of the full-time job of being a brand new mom. Then next week is the Ear Nose Throat doctor. At MGH PICU they found the weakened airway or "laryngealmalacia". I'm hoping that could just explain it and with time and growth and strength this will all resolve? Still holding onto hope despite how difficult this all feels at times.
After our appointment we saw my cousin Brianne who ironically is a nurse in the same cardiology clinic. It was nice to see a familiar face in such an unfamiliar place. Thankful for all the good providers we've had along the way.
After Children's we went to the Pediatrician to have a stitch removed from his umbilical site where he had a central line in the NICU. Thankfully, we have 3 days to enjoy of no doctors.
After a long day we all settled on the couch for some lounge time and relaxation. (Aka Matt putting on several episodes of Ray Donovan) Ben did some "tummy time" kicking and squirming around and moving his head and neck. It's so hard to believe sometimes that his adorable perfect little boy has anything wrong with him inside. I look forward to the days we can leave all this behind and just focus on the sheer fact we have this incredibly beautiful baby boy and nothing more.
On Saturday was Ben's one month birthday. He wore his Rocky Balboa fighting grey sweatsuit. He's already taught us so much. Life is precious. Ben is precious. And we have to savor the good moments with the not so good ones.
Due to Ben's current state we were told to stay home for this Thanksgiving. It will be relaxing and wonderful all the same though we'll miss seeing everyone. Hoping we'll be up on our feet more soon. In the meantime Ben is sending out some snailmail to say hi and thank you to all his friends and family so stay posted.