Followup

Pardon me for dropping a few of the updates–I often post quick updates on Facebook, but forget to followup on this site, or vice versa.  So here are some items that my Caring Bridge family might not be entirely caught up on:

• Struthers is 5-1/2 months old now and weighs just over 10 pounds and is growing incredibly fast!  He is just out of his newborn clothes (they got much more wear from us than from the average ‘newborn’ since he was in them for 5 months)!  He smiles a lot and laughs at his adoring pup Einstein, his Daddy and “Monkeys Jumping on the Bed” from the Baby Einstein Pandora station.  He loves music of any kind, and seems to thoroughly enjoy classical and instrumental hymns. I’m not kidding–they calm him instantly and he can stay awake listening and cooing to them for hours!  He’s a little houdini who can work his way out of ANY swaddle!
• The reflux is steadily improving, but we still have a swallow study pending scheduling issues.  We added rice cereal to his milk shortly after bringing him home, and that has helped tremendously.  He’s increased his feeding volumes, though he’s nowhere near eating what a baby of his age should be able to take in a given feeding.  That being said, he made some major weight jumps and his pediatrician thinks he will catch up with his age/weight by about a year. While his appetite seems to be fairly healthy, feedings are still somewhat of a mechanical challenge.  He has a common “preemie problem” of thrusting his tongue (and all food, pacifiers, etc) as he sucks, rather than drawing it in with suction.  We are working with an Occupational Therapist who specializes in feeding on that, and it’s likely a problem he will outgrow.
• In some ways, Struthers is so much more advanced than his adjusted age of 10 weeks–he’s awake and alert nearly all day, sleeps all night, pushes his head and neck up and tracks everything and everyone.  But he’s definitely NOT meeting the milestones of a 5-month old.  Though I’m fairly convinced that he just might crawl BEFORE rolling over, and I wonder if that’s because of the reflux.
• The angiogram that I had back in January went relatively well, with the allergy protocol working well enough for them to use lots of contrast and capture good images of all my problem areas. The summary: Left carotid is unchanged and the dissections have healed well. Right carotid has a mild narrowing of about 42% and the 2 aneurysms are slightly larger but not to the point where coiling or stenting outweighs the risks of the procedure. Renal arteries looked better than expected as well with only the left renal artery showing mild FMD recurrence of 20-30%, again, not enough to intervene as long as blood pressure remains controlled. So the name of the game now is to control blood pressure (which has been beautiful on a very low dose of the one drug I couldn’t take during pregnancy).
• I had a hysterectomy in March, and that was emotionally and physically traumatic, quite frankly.  I have always bounced right back from procedures and surgeries, but this one…not so much!  They were able to go in laparascopically, but then ended up having to cut through my new C-section scar to remove some deep scarring.  I have never before taken the entire bottle of prescribed pain medications (I usually only take them a day or so then wean myself off), but I was taking them for a good 4 weeks, and fully needing the relief they provided me.  Eli was a real trooper with Struthers, handing him to me when I couldn’t get off the couch and taking him when he fussed for a diaper change.
• I came back to work just last week, at about 5-weeks post hysterectomy.  And though my physician wanted me out for 6-8 weeks, I’m really enjoying being back among my friends during the day, and I would venture to say I really needed that for my emotional health after 6 months away.   I am finishing up an assigned project at work that should end June 30, and then I’m not quite sure what my work life will look like!  But for now it’s great, and I have the most amazing support both at home and work!
• Struthers had a sleep study on Sunday night, and it confirmed what I had suspected at home.  Only 6 minutes into deep sleep, he had an apnea episode, and was ‘desaturating’ to 70% sporadically all night.  This simply means he’s not breathing deeply enough to get the oxygen his body needs while he’s sleeping.  And while we were hoping that the sleep study would indicate we could begin to wean his oxygen, I’m coming to terms with the fact that we will be carrying around an oxygen tank for quite awhile.  And in the scheme of things, I’ll take it!  He will eventually outgrow his BPD (bronchopulmonary dysplasia), as thankfully, the lungs generate new tissue for about the first 7-8 years of life.  But he will just be on his own little sense of time with that, as he has with everything else!  The whole experience was a bit traumatic, resurfacing the anxiety about being ‘unplugged’ from the NICU.
• We made a last-minute decision today to participate as a family in the March of Dimes walk tomorrow morning.  Struthers’ page can be found at https://www.marchforbabies.org/march/personal_page.asp?pp=5809494&ct=4&w=7352710&u=struthers.  We were so tangibly blessed by this organization over the last few months, and we’re grateful to be able to give back while celebrating our little miracle with a nice little stroll on a Saturday morning.  For those of you wondering about our need to keep Struthers from getting sick or catching anything, we will be taking appropriate precautions, and he will basically remain in the stroller fairly covered and with an obnoxious little carseat sign I had made that says, “STOP-No touching!  I’m a preemie and your germs are too big for me.”  I think that’s one place such a sign will be understood and respected…

As always, THANK YOU for your continued prayers~!
Eli, Cami and Struthers