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.

All Babies Cry

Some babies cry A LOT!  FRW would trend toward the latter category, I would say.  Wikipedia defines infantile colic as a condition of a healthy baby in which it shows periods of intense, unexplained fussing/crying lasting more than 3 hours a day, more than 3 days a week for more than 3 week.  I’m not sure we’ve been dealing with it for 3 weeks yet, but 3 hours 3 days a week qualifies.  Some days less, but it’s still there.  “They” also say it is usually in the early evening, and Finn’s tends to be from about 8pm to about 11pm.  But I’m calling it colic.  Emma has THE WORST COLIC EVER, so I am an experienced mom, and I know what this is.  It’s colic.  And it’s so frustrating for us all!  I also know it will end as abruptly as it as started, so we will survive.  In the meantime, my heart breaks daily as my sweet baby cries and cries for no evident reason.  Poor little dude!

In the meantime, another week has gone by.  Jake’s Power Rangers party was changed to a Star Wars party at the last minute since I couldn’t find party supplies locally, and it was a GREAT time at the Oklahoma Wondertorium!   We had never been there, and it was so fun and the kids and adults all loved it!  Jake got loved on by so many people, and his room is now full of fun new toys to keep him busy.  Also, the RSV shot situation has been resolved.  Last Friday, I got the 2 phone calls that got that ball rolling, then on Monday I was informed the medication was overnighted tome to show up on Tuesday, as well as the name and number of our home health nurse.  The meds arrived at 1:30 on Tuesday, and the nurse got here about 4:00 to administer the shot.  It was about 4 days late, but we are approved for the next few doses so it won’t be so hard next time!  My dog is still gone, and I am still sad about it.  Britt found us the PERFECT puppy on Craigslist earlier this week, but it was spoken for before we could get ahold of them, so the search continues.  And I am still jobless.  I am happy to be here at home for the time being, and I am determined to enjoy it.  I still feel like a puppet on a string in this area of my life, but it is what it is, and God’s plan will prevail.  I just need to be patient and prayerful and the answers will come!

Our big excitement of the week was the follow up article the O’Colly did on Finn and the OBI blood drive.  I was contacted about the possibility late last week, then this week a photographer came to the house on Monday, then a reporter interviewed Britt and I separately (due to the home health nurse and RSV shot) on Tuesday. On Thursday morning, the front page of the Daily O’Collegian featured a HUGE picture of me and sweet Baby Finn! 

CLICK HERE for the link to the article.  I think they did a really good job.  Donating blood is a simple thing to do and it can affect lives on so many levels.  We are so grateful for all the strangers who have helped us out along the way.  Whether praying for us, supporting us financially, and especially those who donate blood regularly to provide for needs of people that need that kind of support.  If it were not for the generosity of other people, Finn might not be here with us today!

As of the nurse visit on Tuesday, Finn weighed 8 pounds, 14 ounces and was just over 20 inches in length.  He is growing so quickly these days!  He will be 4 months old on Sunday, and his adjusted age is 4 weeks.  It seems like we just came home a few days ago, but he has been home 1 month and 6 days.  In the past week, he has started to sleep a little longer during the night.  We used to feed him 3 times overnight, and we are down to 2 – or just one depending on how the schedule goes during the day, and how early we need to get up the next morning.  THIS is a major milestone for me, as I really need my sleep! LOL!  He still eats every 3 hours during the day, and still sleeps A LOT during the day as well.  My mom and my sister-in-love are thrilled that they have both gotten to see him with his eyes open for more than a few seconds at a time lately!  He finally enjoys his swing, and he likes to lie under his play gym and watch the things hanging above his head.  He is still on supplemental oxygen at ¾ Liter for 24 hours a day, as well as the heart/apnea monitor.  I am REALLY hoping to change some of these statistics when we go for his 4 month visit to the pediatrician on Tuesday. This is my prayer request!  We NEED to start weaning the oxygen as he keeps pulling the cannula out of his nose, and I am SO OVER the heart monitor that only goes off with false alarms.  UGH!

The other project I am working on now is for the 4^th grade STATE NIGHT at Emma and Lara’s school coming up in a few weeks.  Each student is assigned a state, and they have to do a report on the state as a famous person from that state – as well as a report on that person. The person reports were due last week, so now we are working on the STATE part – as well as costumes.  They are supposed to dress up as that person for the presentation on State Night.  Lara has the state of Nebraska, and the famous person she chose was Swoosie Kurtz.   This costume will be pretty easy.  Lara has the perfect looks for this character, so we just need a “red carpet” dress, and perhaps an award to carry.  Emma has the state of New York.  Her “person” she chose is Stefani Germanotta.  Lady Gaga.  Yeah, we had to ask the teacher if that would be acceptable. It was, so now I am on a costume hunt!  I got a dress that I think will work perfectly.  Now for a wig, some shoes and other accessories. WHEW!  I can’t wait to see how this turns out for both of them!  They are pretty excited!