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.

Gabe Me a Code

For some reason, I remember reading this Garfield cartoon  as a kid, and it has really stuck with me.  I guess I thought it was pretty funny!  Well, poor sweet Finn is struggling through a cold!  He is just so congested! He can’t eat, he can’t sleep well.  *sigh*  It is really heartbreaking! And tiring for Mommy and Daddy, too.  He is only eating about ½ at one sitting of what he was, so he is also eating 2x as often.  Add to that the getting so congested in his sleep that it wakes him up, and you get the picture…  This started about a week ago, so we are really hoping we are on the downhill side.  

In the meantime, there is some good that came of all this!  When you are congested, and your oxygen flow is only 1/32 L, there comes a point when the cannula in your nose plus the swelling is more of a fight than a help.  So, after asking about that Monday night when we saw our pediatrician at a school function (I know, I’m *THAT* mom), we started weaning him pretty aggressively.  He was off oxygen support most of the day Tuesday – only putting it back on for feedings, then was on overnight on Tuesday.  Wednesday, we followed the same routine, but I know I forgot to hook him back up for at least 2 feedings.  Plus, he had completely removed the cannula and tape in time for his middle of the night feeding, so we just left it off the rest of the night.  Thursday, we went on another excellent adventure (more on that in the next paragraph), and we had him on O2 in the car to and from, but the rest of the day he was off – including overnight!  So, by Friday, we has COMPLETELY OFF OXYGEN SUPPORT!  He has done great since then – even with fighting the cold!  So, here are the first few pictures of Finn with no oxygen support!  No more cannula and no more adhesive on his face!

Room Air test on Tuesday

 

No Cannula on Wednesday

 

So, Thursday was one of the BEST days I have had in a very long time!  After we got up and got around to get the big kids off to school, Britt, Finn and I loaded up and headed for Edmond.  First stop, my friendMel’s house!  Melissa is a sorority sister of mine and thanks to facebook we have been able to keep up with each other over the last few years.  She had agreed to watch Finn for a couple of hours while Britt and I got to go to a special event for our church.  I am so thankful for loving friends who care about our family!  She and Finn has a good time getting to know each other – and the treats we brought for her and her 1 year old to share helped, too!  Next stop, LifeChurch.tv Edmond.  Pastor Steven Furtick  (author of Sun Stand Still, lead pastor of Elevation Church in North Carolina, my own personal spiritual leader) was scheduled to tape two sermons on God’s Favor, and the host team coordinator at our Stillwater campus MADE SURE we had a spot for this taping since we are both such HUGE Furtick Fans (Finn is the result of many Sun Stand Still prayers)!  It was everything we expected, and more.  He is such an amazing man of God, and excellent preacher, and just plain fun to be in his presence!  The first week of his talks, “Finding Favor” can be found this week on Church Online.  Don’t miss next week, when he talks about “Walking in the F.O.G.”  It’s incredible!

After we came down off that spiritual high a little bit (I have heard week 1 twice now, and I’m still high – might watch it again this afternoon), we went back to Mel’s house to get our baby, and just chatted for a bit.  It was nice to be in the presence of another Mommy and to just talk about our kids.  But after some time there, it was time to minister to another Mommy I have recently been introduced to.  Next up – Mercy NICU – Finn’s old stomping grounds.  We had alerted a few of the staff that we were coming (and bringing treats; that seems to be Finn’s (Britt’s) trademark), but we were also there to meet a new friend who had just started her long micro-preemie NICU journey 2 weeks ago.  After much ooh’ing and aah’ing over Finn in the little lobby area of the NICU by nurses, nurse practitioners, and one of his neo-natologists, I scrubbed up to head back and meet little baby Savannah.  She is so tiny, and has such a long way to go.  Being in that room immediately flooded me with memories and reminded me just how far Finn has come.  After just a few short minutes in her room, the door opened, and in walked Britt.  Without Finn.  My first question (as, I am a GOOD mom) was WHERE IS MY BABY???  Well, the nurse practitioner said she had a report to write, so she just took Finn from Britt, and off she went with him!  It was really nice to have Britt in the room, too.  We asked lots of questions about Savannah, prayed over her isolette and for her family, gave her the book Finn had brought for her, and spent a long time just being in there with them.  I know how much I cherished visitors to help the long days go by faster.  But, we had to be getting back to Stillwater, so it was time to find my baby.  Which was a little harder than I thought!  I went out of the baby’s room, looked to the nurses’ station, and did not see him.  There were several nurses there (none I recognized, of course), So I just said “Um, Where’s my baby?”  He was around the corner with the nurse practitioner and one of the doctors.  Just chilling out, being a big boy!  I forget how far we have come until I see a tiny 1 pound 9 ounce baby in an isolette with all those wires and tubes, then a few moments later see my big 10 pound son sitting up in someone’s lap, watching the flickering screen of a computer.  Savannah’s Mom thanked us for coming and said seeing Finn gives her hope.  That makes me happy.

On Friday, we did take Finn to the doctor to make sure he didn’t have RSV or the flu (which he does not) He weighed in at 10 pounds 13 ounces, and we captured this cute giggle on camera:

After a pretty lazy weekend, and suffering through the dreaded time change, today it was back to routine.  SonnerStart was here earlier for Finn’s evaluation, and he is right on track!  Even showed off a bit by “dancing” and smiling to his favorite song:

 

Here’s to another week!  Knowing I cannot ACHIEVE favor, I have to RECEIVE favor (-Steven Furtick).  Finding Favor with God in the things I do, nurturing my family and making sure they are all where they need to be when they need to be there, and watching Finn grow (and get over this cold), preparing him to be a world changer in the future.  Easy, right?

State Night (and other news)

Lady Gaga, Swoosie Kurtz, Katy Perry, Tom Wopat (Luke Duke),  Bruno Mars, Dolly Parton, Michael Jackson, Miley Cyrus, Buddy Holly and 2 of Johnny Cash.  Snow White, Abe Lincoln, Henry Ford, Sarah Palin, and Hawaiian Princess Kaʻiulani.  Barry Sanders, Brandon Weeden, Tim Tebow and a skate boarder named Ryan Schekler.  Plus about 50 others I can’t recall.  What do all of these famous people have in common? They were all at Westwood’s 4^th Grade State Night last night!  It was AMAZING!  The kids did SUCH a great job, and we all had a blast going from booth to booth learning about each of the 50 states, the celebrity that was being represented, and getting snacks native to that state at some.  (You could bring snacks for the crowd for extra credit – my girls were ALL OVER this step!)  We really enjoyed asking questions and listening to the kids give their spiels, while Jake just went from station to station getting food.  He saw someone with fried chicken, a complete stranger, and then asked her where she got it, because he NEEDED some chicken!  LOL!  We also had grapes, cantaloupe, ice cream (thank you, Buddy Holly), wild rice, pineapple, dried cherries, blueberry muffins, sunflower seeds, and pickles- among other treats.

Emma represented the state of New York and dressed as a pop super star that is hugely talented and legendary for her strangeness, Lady Gaga.  Her costume consisted of a “bubble” dress, red tights, silver glitter high heels, a microphone (from our Wii) Gaga-esk wig, and outlandish make up.  She brought pizza bites as her snack for her station.

"Lady Gaga" telling Jake about New York

Lara chose to research the state of Nebraska, and her celebrity look alike was Swoosie Kurtz who is currently on the sit-com Mike & Molly on CBS.  He costume was an awards ceremony worthy coral dress, the highest heels she could find, and “show” make up – with a prop of an “award” and actress of Ms. Kurtz quality might have won.  Nebraska is the Cornhusker State, so her snack was popcorn.

Swoozie Kurtz posing with her popcorn

In other news, Finn is FIVE MONTHS OLD!  

He may be colic-y, but he sure is CUTE!

As of yesterday, he has been with us for five whole months.  It really doesn’t seem possible.  Time is going so quickly.  I would estimate his weight to be 10 pounds 10 ounces, and he is 21.5 inches long.  Pretty much right on track with his 2 month old peers.  We are weaning the oxygen this week – hope to be off completely by the weekend!  He is sleeping soundly right beside me with no oxygen assistance, and we shall see how the rest of the day goes.  He’s a trooper, for sure!

Been BUSY!

I hinted at the end of my last post that I had a fun little adventure coming up the next day!  We sure did!  Not only did Daddy stay home on Thursday to get caught up around the house and to rest a little bit, but he also had Friday off.  But it was not as relaxing.  We were all 6 up and out of the house by 8am.  The 3 big kids off to school, and Britt, Finn and I off for our adventure.

This was Finn’s first trip that wasn’t to a doctor’s office or my mom’s house for a couple of hours.  We were off to Enid, America!  Finn (and therefore Britt and I) had been invited to “speak” at the Oklahoma Blood Institute staff meeting this month!  They love for blood product recipients to come and show them what all their hard work translates to.  While I knew I was speaking, and basically what I should cover, I really had no idea what to expect!  We made the trip in slightly over an hour, and Finn did really well in the car.  Once there, we were introduced to the crowd gathered in a small conference room, and I got to tell our miracle story – that included 6 blood transfusions!  The audience was GREAT, and my friend who invited us to speak even had a few pictures she stole from facebook in a slide show for me to use along with my talk!  What a nice surprise!  The audience was so receptive – ooh’d and ahh’d in all the right places – and they were SO EAGER to meet Finn when I was done.  Britt had been out in the hall with him, and it was like winning an academy award when we showed our sweet boy off to the folks in that room.  They were so impressed by his fight and his triumph!  I really enjoy public speaking, and they asked some excellent questions, so the whole experience really quite enjoyable!

Finn, Daddy and Mommy @OBI in Enid

A bonus to being in Enid – a trip to the in-laws!  We spent a few hours with them where they got to feed and love on Finn, and they even took us to lunch at the new gourmet hot dog place in town. That was Finn’s first trip out in public, and first trip to a restaurant!  He is back on quarantine for now…  The break from reality and getting out of the house made for an enjoyable day.  But, we had to hurry back to Stillwater to switch cars and get me on the road south to Oklahoma City!  I had another engagement to go to!

I met my sweet friend Jenny at First Church of the Nazarene in Bethany, OK for a Girls Night Live event featuring Mandisa and Laura Story.  If you go back to the blog entries around the time of my brother’s death, you can see songs posted on entries by both of these amazing ladies!  I have been a Mandisa fan since she was on season 5 of American Idol, and I love following her antics on facebook and twitter.  She is truly an inspiration.  Lucky for Jenny and I, we had early entry passes, and we got seats on the FRONT row!  It really was a great concert and a wonderful time of fellowship, singing, and dancing.  It was over a bit earlier than I anticipated, so I was back in Stillwater pretty early –just in time to get home to my sweet baby Finn who had just fallen asleep after what I hear was a VERY ROUGH evening!  He got off schedule and I suppose a bit overstimulated, and he had a hard time recovering.  But super dad handled it perfectly!

Jenny and I at Girls Night Live!

Saturday was fun as well.  That morning, after my husband shaved off his seasonal beard, the hair on his head, and his standard goatee and mustache (I was mortified, but am getting used to it), we ran some errands as a family, taking turns staying in the car with Finn.  After lunch, it was a GIRLS DAY as the twins, my mom and I went treasure hunting around Stillwater. We found some fun treasures, got some fun ideas, and enjoyed each other’s company.  Sunday was church and a lazy Sunday afternoon, getting the last few things ready for the girls’ “State Night” at school tomorrow night.  I can’t wait to tell all about that – it sounds like they are really going to have a good time and put on a neat presentation.   It was a fun weekend all around!  Now,back to quiet days at home with my baby for the week.  I think we both need it!

Time Marches On

This week had been all about Finn! But then again, haven’t they all been for a while now?  Finn has had some sort of appointment or intervention every day this week.  On Monday, his SoonerStart therapist came out to check on him.  The last time she was here was 3 weeks ago (she comes every 2 weeks, but last Monday was a holiday), and Finn was a totally different baby than the one she saw last time!  He was awake and alert, and tolerated tummy time so well!  It was such a joy to show him off for her, and she wrote a wonderful report!  Then, he was supposed to see the pediatrician on Tuesday, but she called late in the morning on Monday to tell us NOT TO COME!  She had already diagnosed 5 cases of RSV Monday morning alone, and she didn’t want my susceptible preemie in her germ infested office. Instead, we had a consultation over the phone, I asked the questions I had, and she told me to turn his oxygen down to a flow of 1/16 of a Liter!  WOOT!  This is a big jump down!  We were at ¼, so we skipped 1/8 altogether!  We will probably turn it down again first of next week, but we are SO CLOSE to being done with it all together!  Then yesterday, the home health nurse came out for her assessment and to administer his Synagis (RSV prevention) shot.  Finn weighed in at 10 pounds 8.5 ounces, and was 21.5 inches long.  Hard to believe he is almost 5 months old, and still the size of a large newborn! LOL!  He took the shot like a champ, and pretty much slept the rest of the day!

Today, Daddy is home with us.  SUCH a welcome break!  It’s so nice to have someone to talk to and to help me get things done!  I even got to get out of the house!  I mean, it was just Wal-Mart for 6 cans of formula and some milk, but STILL!  It felt so freeing!  We are enjoying each other’s company and just chatting and watching TV and playing with Finn while doing laundry and dishes.  Such a great day for us!  After Daddy was feeding Finn, he turned the camera on and caught a Finn sneeze that I want to share:

Tomorrow, we are taking Finn on a little adventure.  It’s a Mommy adventure, too!  I hope it all goes well, and I can’t wait to share it all with you!  But, it will be a bit before I can update!  I am also meeting up with a friend tomorrow night in the City to see Mandisa and her Girls Night Live tour!  Can’t wait for some good fellowship, some GREAT music, and to WORSHIP!