A milestone – of sorts

In the beginning, we counted things by hours.  Soon, that got to be days. Days turned in to weeks, finally.  We’re almost to where we can say months, but not quite.  Today, it’s a milestone we can count in weeks.  We have been home for 12 weeks today.  84 days.  That’s the exact same amount of time we spent in the NICU.  It almost doesn’t seem possible.  Some days, it feels like we have been home a lot longer than we were there.  Other days, the memory of our NICU days seems like it was YEARS.  But, I am very happy to have reached this milestone.  It gives me a sense of normalcy.  It reinforces the fact that Finn is home, is getting healthier by the day, and he is part of our family!

Since my last post, it has been a whirlwind of changes and steps taken to care for Finn.  Colic is still the monster we deal with every night in this house.  It’s painful for all of us!  The girls complain that it keeps them awake, Jake comes out of his room several times to check on him, it simply breaks my heart, and Britt is the one holding, cradling, and trying to comfort him most nights.  Plus, now he was so constipated!  We had called the nurse mid-week and been told to stop the Poly Vi Sol with Iron drops and to add Karo syrup to his bottles until he pooped, but I wanted a more permanent solution.  We went to see the pediatrician again on Friday as Finn’s congestion was back (both RSV and Flu negative), and the colic had escalated to a point I was not comfortable with.  He seems to be in such PAIN, and there has to be something I could DO for him.  After reading on the Internet (I know, I know…) Dr. Google had me convinced his inguinal hernia HAD to be bothering him.  So, we walked into the appointment DETERMINED to get some answers.  Here’s what we came away with:

• ·         An 11 pound 6 ounce baby

• ·         Monitor only at night (YIPPEE!!!!!!!!!!!!) – reevaluate at the 6 month visit

• ·         D/C the Poly Vi Sol with Iron until the CBC at the 6 month visit

• ·         Change the formula from Similac NeoSure to Gerber Good Start

• ·         e.  Today, it'A REFERRAL TO THE PEDIATRIC SURGEON FOR THE HERNIA!!!

All of this is such great news.  Finn is growing well – his curve is mimicking his full term peers.  We only have to put the heart and apnea monitor on him at night, so he is much more FREE to carry around the house and to take places (although we are still staying home as much as possible until RSV and flu season is over – he has one more Synagis injection next week).  Discontinuing the vitamins with iron and changing the formula should relieve the severe constipation.  The iron contributes to that, and the formula was iron fortified PLUS high calorie and THICK, so we’re hoping a thinner formula means he will drink more ounces and therefore take in more liquid, consequently  helping with the constipation – but not effecting his weight gain.  (The transition has not been smooth by any means.  We started it late Friday, and it is now Wednesday.  Yesterday was his first good intake day.  He is still constipated, though!)  But most exciting to me, is the referral to the surgeon!  YAY!  So glad to get this process started.  They called with our office visit appointment for evaluation on Monday, and it is not for a few more weeks, but it feels good to have that ball rolling.  Hoping to get him some relief SOON!

In the meantime, it’s Spring Break here.  And it has been raining for 3 days – no end in sight.  The big girls are with their other dad, so it is a bit quieter around here.  Jake has been a tremendous help, and we have enjoyed our time together!  He is thrilled that I rented a Wii game he likes for him from Redbox, and yesterday we tried to go to the movies, but we got there and discovered it was sold out.  We have plans for an adventure tomorrow, but every time I see a weather forecast the chance for rain goes up, so we may have to change our plans a bit for that.  The good news about tomorrow is the girls come home!  And Britt has the rest of the week off.  So, on Friday, all 6 Dream Weavers will be home and together for a day.  Sounds good to me!

SO proud of my little man and how far he has come!  We are creeping up on 6 months old SO QUICKLY!  MONTHS!  We can count in months… He is still fighting the good fight.  Seems like the last 2-3 weeks have presented us with some struggles, but we keep moving forward, and that’s all we can do.  Finn is truly a miracle, and we are so blessed to be his family.

Soon Enough

I just gave Finn a bath.  (he is now sleeping soundly in his swing.)  He really likes the bath.  Getting "dressed" afterwards, not so much.  He enjoys lounging in the little blue tub, letting me squeeze the water out of the tiny soft washcloth onto his belly and legs, and he really likes getting his big round head scrubbed.  Finn takes his baths in our big bathroom, in our big tub.  The kids bath in the hall is too small and has too much other kid clutter for mommy, so our bath it is.  We have a LARGE jetted tub in our bathroom, that is up off the ground quite a bit, so I can't just lean over and wash him like I would with a regular tub.  So, the blue infant tub goes in the end by the spigot, then I have a little one step Rubbermaid step stool (that is older than dirt and has about 10 colors of paint on it) that I put in the other end for me to sit on so I can reach Finn.  (I learned this method from my husband.  It's how he used to bathe our dog, Einstein. *tear*)  It's really pretty comfy and gives me quite a nice vantage point for the bath.  I like it!  But, when the bath is over, neither one of us likes it.  It is a bit of a gymnastics feat to get OUT of this tub like this while holding a wet baby wrapped in a towel (MUCH easier this week without the oxygen support, but still a challenge).  And once I get out, I transfer him to the changing table, where I have the monitor belt, leads, wires and Velcro closure all set out and ready (pictured) - along with a clean diaper and change of clothes.  This is when the waterworks begin!  He hates getting dressed!  I remember when he was brand new at home he was so STIFF and I was worried about it and talked to our SoonerStart Child Development Specialist.  She said we would watch it and hopefully it would get better.  The stiffness has dissipated, but he still hates getting dressed.  First, I slather him up with smell good baby lotion - being careful to avoid all parts of the body that come in contact with the monitor belt and leads (ugh).  Then, I put the clean diaper on (sometimes I'm a little too slow on this step).  Then, I have to get the monitor parts together: attach the wires to the leads, put the belt under the baby, put the lead with the white wire under right arm, black under the left, pull the belt securely around baby's chest, affix the little band aid shaped Velcro tab.  All on a wriggling, crying baby.  THEN, clothes.  We've had a heat wave of sorts the last few days, so for now that's a short sleeved onesie and some socks.  MUCH better than earlier in the winter when I actually had to do layers and keep him warm!

Our bathtub set up. You can see my feet/ankles outside the top of the tub.

But, VERY SOON we will be done with the heart and apnea monitor.  It has not alarmed in weeks, unless one of us forgets to plug it in and the battery goes down, or we step on the blue cord and the leads come unplugged (the final step of the bath/get dressed precess when I bring him back to the living room is plugging the 2 lead wires into the blue patient cable that goes to the machine).  The home health company representative usually comes to Stillwater on Tuesdays.  We hope to be able to call this coming Monday and tell them to pick up all the oxygen tanks, the concentrator, AND the monitoring equipment.  It feels like we have been doing this forever, but soon enough, Finn will be FREE and off of all of his "leashes" that have been confining us for weeks.  It can't come soon enough for me.