2 steps forward

Wow, it has been a month since our last post.  I wouldn't believe that if I didn't see it with my own eyes.

Most of the delay was because of logistics.  "Free time" is non-existent and we've made changes that we needed to wait-and-see about.  Another barrier was more of a mental one.  The past month has been hard.  It is a completely different "hard" than sitting next to a plastic box hoping your baby fights hard enough to make it another day, so how can I complain?  Our difficulties are more of annoyances now and probably experienced by every person who has 2 young children.  However, I have been "real" on here to date, so I will share our updates with you.  Tone is hard to read so this is more of a "please get me another cup of coffee while you are up" kind of tone than a "Woe is me, my life is so terrible."  We love our life right now.  We are just very tired.  And we are barely keeping bottles washed much less the rest of our chores.

The twins loved on momma for their first Mother's Day:

We did have a chance to visit the real Zoo with our triplet friends.  It was a blast.

Updates:

Oxygen

Since our last post, we had a couple changes with oxygen.  For 2 weeks, Scarlett went without oxygen during the day.  Unfortunately, we had to put her back on a constant flow of 0.2 ml this week.  This was a little heartbreaking, but we would rather deal with the inconvenience than the health issues that come from her not having enough oxygen.  We have now tried to wean Grayson 2 months in a row without success.  The best case scenario for him is to be at room air by the end of July but I am not very optimistic.  On a related note, Grayson has decided that the nasal cannula is his favorite "handlebar" when he is upset, which at a minimum is about every 2.5 hours when he is hungry.  He either grabs the cannula where it goes into his nostrils while he is trying to put a non-existent pacifier in his mouth, or he reaches up with one or both hands and grabs it near his cheeks and rips it off.  Several times we have slipped away while they were sleeping and came back to him wearing his nasal cannula like a necklace.

We are no longer using apnea monitors which had adhesive pads under the armpits.  I am thankful because they were not very sticky so we would reinforce them with tape which really hurt their skin.  I asked our medical supplier, Good Night Medical, for "Lead Belts" that would have helped this issue but they can't even deliver oxygen when needed.  When they collected the monitors they said they finally arrived the day before, but I don't trust a single word from them.

We are now using Pulse Oximeters with sensors on the bottom of their feet held in place by an adhesive band and a piece of velcro.  This is much better for their skin, but can give off inaccurate readings whenever they kick or move their foot.  Therefore we can only use them when they are sleeping.  For the most part, we leave the lead on most of the time, and only turn on the machine (and possibly plug the lead into the machine) when they are asleep.

Feeding

I love my daughter an incredible amount, but bottle feeding is a NIGHTMARE.  She will cry because she is hungry, suck on her fingers, but then reject the bottle nipple.  We have spent the last couple days trying new nipples without success.  Most feeds take about 45 minutes of fight before she eats for 15.  Too often, she is so tired from fighting that she falls asleep.

In her last BPD checkup, she was not growing at a rate we felt comfortable with and one of the issues may have been that her tongue was getting fatigued because she was "tongue tied."  This is where the tissue that connects the tongue to the mouth won't allow the tongue to move around very much.  We took her to an ENT where they simply cut the tissue further back with scissors.  She did not notice until later when the pain medication wore off, but her bleeding mouth broke my heart.  She has started breastfeeding longer, so I believe it was the right move.  But she needs additional calories and needs at least 2-3 bottles each day.

Grayson would literally eat every waking second if he could.  He wakes up like clockwork to make sure he gets his meal.  In our last check-up, he was in the 97th percentile for weight-to-height.  I would love that if he were taller, but his weight is around the 50th percentile while his height is less than the tenth percentile.

Temperament:

I always get smiles on demand from Grayson.  Sometimes even when he is screaming his head off that he is hungry!  Scarlett is a little more selective with her smiles but will usually reward mom and dad if they try hard enough.  Otherwise she is pretty straight faced.  She is pretty quiet while brother babbles.

Grayson LOVES his pacifier.  Scarlett LOVES to grab things.  She will grab her toes and pull them to her feet.  This has been a little problematic for the pulse-ox probe on her feet.  We are expected to use them for 3-5 days and hers seem to last about 20 hours.

Physical Therapy:

We have private physical therapy visiting the house weekly and have officially been admitted into the Help Me Grow program.  Grayson may have some issues the PT is working with, but because they are inconsistent, we aren't 100% sure what is a true issue and not an attitude and/or other issue.  For example, this week he showed signs consistent with left torticollis, but last week showed consistent signs of right torticollis.  This could be because his neck muscles are tired, or could have something to do with his vision, or could be because he was being a brat one or both days.

Scarlett will be getting a "headshape helmet" soon because of flattened spots on her head from laying in a certain spot too long while in the NICU.  We were hoping her head would "pop" back out on its own, but it hasn't yet.  We have some concern that this will put extra weight on her neck and set us back when it comes to her torticollis, but we only have about 7-8 more months before her cranial bones should set and fuse together.  Additionally, there is some evidence that using the helmet earlier leads to a decreased overall duration.

I have to admit that I am pretty nervous about the helmet.  It needs to be worn 23 hours/day.  As we have ventured into public we have mostly been in hospital or friendly scenarios (eg. church).  Most of the people we are with have some idea of what the babies have gone through, and most of the strangers look past the clear oxygen tubing.  But you can't look past the helmet.  If you do a google image search, some people decorate the helmet with a cute "Under Construction" theme.  Others make it cute and some people make it look like a pilot's helmet.  But regardless of how its decorated, this is a giant billboard saying "Come pay attention to me because I'm different."  I KNOW that it doesn't matter and that she won't remember these days.  But I'm also dreading the days for us that feel especially challenging, when someone who has no idea what is going on (not their fault either!) asks a question that probes too much and breaks my heart.  For example, the question, "Will they be OK?" or variations have been asked so many times that I am callous enough to say "So far things are very age appropriate, so we hope so," without the question registering.  But at night, when I go to bed by myself because the oxygen machines keep the babies downstairs and Trish needs to be there so she can breastfeed in the night, I lay down and my head starts racing.  Will they be ok?  Is something wrong with Scarlett because she's not babbling as much as Grayson?  Is something wrong with Grayson because he sticks his tongue out?  What will people say when they see Scarlett wearing a helmet?  Why is this stage so mentally demanding?  Why doesn't Scarlett want to eat a bottle?  What if she isn't eating enough and doesn't grow?  Is Grayson eating too much?  Is his weight the reason that his breathing/wheezing often resembles someone who just ran a race?  Why am I so tired but can't sleep?

I have spent most of the past month trying to meditate on a couple verses:

Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus. - Philippians 4:6-7

 Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing?  Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life. - Matthew 6:25-27 

Prayer Requests:

Please pray that the twins grow.  Their lungs especially, but also everything else.

Please pray for us as parents.  That God provides patience, wisdom, and grace and that we don't botch anything up too badly.

Half Birthday

Wow!  6 months!  I never thought that getting here would feel like an accomplishment, but then again, I never imagined having micro-preemies.  At this point, we are noticing the kids have very different personalities.  Grayson is extremely social.  He returns your smile when you smile at him and stares in your eyes with his big beautiful blue eyes.  He eats.  Boy does he EAT!  The kids are now ad-lib so they can eat as much as they want as often as they want.  Grayson typically downs about 4-5 ounces every 2-3 hours but does a decent job of sleeping through one of those feed times at night.  He lets you know that he is ready to eat by screaming!  In those times that he is awake and not "hangry" he might babble for you!

Blowing bubbles.

Scarlett is much more quiet and will let you know she is hungry by opening her mouth really wide, or munching on her hands.  If you still don't get it, she will let out a quiet whine.  She is almost exclusively breastfeeding but when she does take a bottle she typically takes about 3 ounces.  We think she is teething because she will chew on her Sophie, bottle nipple, fingers etc.  She doesn't give a whole lot of eye contact, but does babble some.  A surefire way to get a smile out of her is a "smooching" sound by kissing her on the cheek.  She has a special bond with her daddy that mommy is a little jealous of.  She will find me when I start speaking and will track me as I move around the room.  She doesn't seem to do that with the Physical Therapist who visits every week or for mommy.  I think its because my voice booms, something that did not work for my favor in grade school.  Mommy thinks it might be because she gets used to her voice during the day.  She does enjoy sitting in bouncers and kicking her feet.  She also LOVES looking at the ceiling fan and bright lights (windows, tvs, etc.)

We do need to thank many people for helping us get here.  We know that without the support of so many of you this journey could have been significantly harder.  From the people who were paid to help us (although based on the service we experienced most of these people are underpaid!): doctors, nurses, respiratory therapists, occupational therapists, physical therapists, social workers, psychologists, case managers and... , to our friends, both new and old, to our family.  Thank you.  THANK you.  THANK YOU!  Trish is working on Thank You cards so if you haven't seen one yet, know that we are especially grateful and are working to get you a card saying that!

You provided food when it was tough for us to find time to eat.  You lifted our spirits with flowers, cards, and gifts.  You made and bought clothes and toys for the twins.  You sent texts and facebook messages comforting to us, rejoicing and lamenting with us.  You donated to March of Dimes and supported our walk by walking with us and/or eating with us at City BBQ.  And most of all, you prayed with us and for us.  Many of you have never met us, and some of you may never have the chance to hold our babies.  This is the 80th post and below are stats showing where the readers come from and how many times the page has been viewed.

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United States	109872
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United Kingdom	64
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Estonia	58
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When I look at this, I am baffled.  I pour my heart into these posts but I know I am not JK Rowling, Steven King, or Nicholas Sparks.  I guess that most of my audience is within 3 degrees of connection and heard about the situation and read to see how our million dollar babies are doing (currently at $3.4M, but who is counting other than the people negotiating next year's insurance plan???).  I cannot explain how humbled I am to know that so many people are witnessing God's work first and second hand.  So THANK YOU!

Updates:

So the past 2 weeks have been eventful.  We made it to the aforementioned fundraiser where our team raised almost $200 for March of Dimes!  Then we did the March for Babies in Columbus.

All of our walkers with a couple nurses from Riverside! 

We finished!  

From left to right: The Shea family (Tim, Trish, Ethan, Grayson, and Scarlett),  Cindy and Gabriella Frey.  The Richards family (Matt, Shana, and Grant), the other half of the Frey family: (Pat, Dominic, and Cameron).

I was very thankful our first two outings were with fellow NICU parents because the extra eyes are helpful.  One of the kid's oxygen hose popped off the tank early on and another dad was able to point it out.  It's scary and embarrassing, but if you've been in this situation its probably happened to you.

I think I mentioned we were trying to wean oxygen in my last post.  Both kids moved down to a flow of 0.1 liters/minute.  Scarlett looks like she'll be ready for room air by the end of the month, but we had to increase Grayson back to 0.3.  He was always tired and once he started sleeping through feeds we knew something was wrong.

The last 2 weeks have had several alarms on their apnea monitors.  We think Scarlett's resting heart rate might be near the alarm rate.  We will know for sure when we go to the BPD clinic but we had her hooked up to a Pulse-Ox a couple times the alarm went off and her saturation was at 100 so we aren't too concerned.

Grayson has had several alarms for his respiratory rate being too low.  Medical professionals suggest that babies sleep on their back, on a firm surface, by themselves.  So when we called and explained he has had many of these alarms in the momaRoo, they chastised Trish for letting him sleep in the chair.  But while they are on monitors, I don't know that we can afford to take them out of these chairs when they fall asleep.  They only stay asleep in the bassinets when they are swaddled, and so we typically only do this at night.

For all of you saying "mom a who?"  It is this pod looking thing that moves side to side mimicking the way a mom would rock her baby. It can do a motions in the shapes of an M, W, U, opposite of U, infinity and has variable speed.  It can also play music if you plug in an iPad.  I think the newer models have Blue Tooth!!!

This past weekend we went on our first neighborhood walk and then made it to church!  It was so good to see many of our friends and meet people who have been praying for us that we hadn't met yet.

The best update is that cold and flu season has officially ended.  We would love for everyone to start meeting the kids.  Feel free to reach out if you would like to come by.  I recommend trying to plan a week or two out because we need to work around the the medical appointments.  For all the local SAHMs or non-first shifters, Trish would love to see you during the day so she can talk to an adult.  Of course, I would love to see you too, but reach out to get something scheduled.

New Normal

We finally feel like we know what we are doing at home.  That is, as long as the kids wake up for their care times, act like they did the days before and don't have fevers.  The early part of the week was challenging.  I think they somehow knew that Aunt Becca was flying in from LA for the weekend and that mommy wanted to get laundry done before the weekend so she can maximize her family time!

Both kids were fussy and had low grade fevers on and off.  They never showed other symptoms of being sick so our best guess is that they are teething.  I think I can see a couple teeth in Scarlett's gums but not in Grayson's.  Of course, he has been the whiniest!  It seems that if he is awake and not eating he needs to be held or else he is angry!  

In the past 2 weeks we were evaluated and accepted into Help Me Grow.  During the evaluation, they compared them to the milestones of a 5 month old baby (their actual age) instead of their corrected age of 2 months (had they been born on their due date of 2/9/15).  The goal of Help Me Grow is to have them reach all their milestones by the age of 2.  If they can't catch up by then, they can provide services through the age of 3, but if they still have delays at that point then we are probably dealing with actual disabilities.

In their evaluation, Grayson passed his "engagement" test by returning eye contact and tracking the evaluator!!!!  Between the two kids, his brain issues cause more concern to most of the doctors, so we were stoked!  Unfortunately, that was the only area where either kid was age appropriate.  For Grayson, our biggest concern at the moment is that his hands are almost always clenched in fists.  They want him to be open palmed, and especially to make sure his thumb would be on the outside of his balled up fingers.  We are doing massages with him that will help his brain recognize the other parts of his body.  These are called "brain mapping and joint compressions."  Its all pretty new to me, but fortunately Trish had exposure to many of these exercises from Oakstone.

We also started Physical Therapy through Children's.  Scarlett's biggest issue is torticollis.  She prefers her head positioned so that she is looking right.  We have tried to correct it since we were in the NICU by giving her incentives to look left.  She can do it, but most of the time she returns to a resting position of looking right.  With her, we are doing "side bending", stretches so that her right ear will touch her right shoulder and a second stretch, "rotation/head turning," where we make her look left.  I don't think they are too uncomfortable for her, but hearing her screaming when we are doing it would break anyone's heart.  I really hope this issue is corrected soon so I don't have to manhandle my baby girl anymore!

Outside of that, nothing else is new.  My life is typically go to work, come home, eat dinner, feed and change the kids a couple times, hold the babies (this order is typically different every day), and go to bed.  Last weekend, Trish was able to leave the house a couple times.  Friday night she went to the Columbus Mother of Twins consignment sale with a girlfriend from college.  She met up with a couple other moms for burgers afterwards.  On Saturday she ran errands and was gone for a couple hours.  By Saturday night, my appreciation for her had grown by 500%.   I know that I am not cut out to be a SAHD (Stay At Home Dad).  Keeping babies alive is hard work!!!  We are very much looking forward to the end of this month when flu season ends so we can take up some of the offers for help!!!

Oh, I almost forgot to mention.  We are hoping to make our first public appearance next Wednesday!  We are walking in the March for Babies on 4/26 and City BBQ is gracious enough to let us fund raise.  Next Wednesday, if you take this flier, they will donate 25% of your order to our team.  Come out and support our team!

Happy Easter!

The babies have recovered from their colds!  We are still trying to figure out this whole twin parent thing but we are getting into a routine at least.

Our highlight of the week was the trip to the doctor's office so Scarlett could get her Synagis shot.  Because of their prematurity, our babies will get these shots monthly through the flu season this year and next.  We hope this is the last one this season.  During the visit, Scarlett weighed in at 11 pounds even!

Both babies are starting to wear some 6 month clothes.  They are very short so the clothing bunches up but we can't squeeze them into many of their other outfits.  We received some great outfits from Sister Dennis, Uncle Joe/Aunt Sara and my mom, so we have plenty of options to choose from!

Sick Babies

I apologize this didn't go out sooner.  And that we don't have pictures.  This was started over the weekend, but I didn't finish it.  We will be posting pictures tomorrow for the kids 5 month mark.  We stopped doing the weekly pictures now that they are home.  There is something about counting up the weeks that I associate with institutionalization.  Obviously we did it every week in the hospital, but it also reminds me of when I was deployed.  We started our deployment without a come home date so we counted up the days, weeks, and months until we had been in country about 6 months.  Then we had a date to count down to, which only changed a couple times....  Anyway....,

This week we had the opportunity to experience sick babies.  Both kids have coughs, although Grayson's "hacking" is a little more impressive.  Scarlett also has a runny nose.  We took them to the BPD clinic on Thursday and they Nurse Practioner decided they aren't quite sick enough for steroids yet, but that we did the right thing by bringing them in.

I expect most parents would read this and have the thought that we overreacted, knowing they didn't have fevers.  I hope that most people reading this have been emotionally involved enough to understand.  We have 2 things working against us:

1. We know our kids better than most people should know their kids.  We know their heart and respiratory rates, baseline temperature.  Its like the gearhead that rides with you once and asks how long your transmission has been goofing up.  I wish I could say, "What do you mean?" but when it comes to our babies, we can say, "Well, the cough started on Sunday but Grayson's started getting worse Monday evening.  Both babies slept much longer than they normally do on Wednesday night.
2. We know how fragile life is, and what its like for our babies to rely on a machine to breathe for them.

 So we have to be the parents shown in the Luv's commercial with her first baby, and then overreact when they start to show signs of illness.

Since our doctor's visit on Thursday, neither baby has progressed much.  Poor Scarlett has the runny nose that makes it hard for her to eat.  That whole suck/swallow/breathe thing is a lot easier when your nose is available....  Also, the ends of nasal cannula looks great when its caked with boogers.  Oh the joys of parenthood!  I wish I was being sarcastic, but honestly I love taking care of my sick baby.  I wish she wasn't sick, and I have the advantage of leaving the situation for 40 hours/week, but I feel privileged to provide the support directly!

I do feel bad for Trish though.  She spends most of her day with a theoretical chain to her leg, going from the kitchen to the living room and very few other places.

I do want to take a minute to endorse the Nosefrida (pronounced Nose Freeda).  If you haven't heard of this thing and have young kids, you need to get one.  The idea is disgusting but the practice is actually more hygienic than bulb syringes.  Essentially you put a tube up against the baby's nose and then suck through a hose on the other end, with a filter in between.  You can suck as long and hard as you want, so you can really clear the passage ways for the baby.  Plus, the plastic is clear, so you can take it apart and wash it thoroughly.  I have heard horror stories of those bulb syringes getting cut open and having mold and stuff inside of them.  Plus, you are agitating the nostrils by continually putting the tip in and out of the nose.

Again, sorry for the lack of pictures.  We have put a few on Facebook but don't have them on the computer.  We will remedy this tomorrow!

1 week as a family

We survived a full week at home with both babies!  Both are over 10 pounds now!  As of Wednesday, Scarlett was 10 pounds, 4 ounces and Grayson was 10 pounds, 0.5 ounces.  Both are 20.67 inches long.  It is getting hard to squeeze them into 0-3 month clothes now so we are starting to wear 3-6 months.

I was off on Monday and we took both kids to the pediatrician's office so Grayson could get his "well baby" checkup.  Getting both kids, their infant car seats, oxygen tanks, and apnea monitors is no easy task.

On Tuesday, the home nurse came in and weighed both.  We learned that she will probably be out one more time, but apparently if the kids are doing well she won't stay on our case.  Trish's mom came in that morning to help so I could be at work.

Wednesday was another doctor's visit.  Scarlett had an ultrasound on her hip because during the delivery she went transverse and they want to be sure there was no damage.  Her hips look great!  They also had their first visit at the BPD clinic.  Again, both kids were given flying colors!  They also gave us permission to allow them to sleep through the night.  We are on a strict regiment to do care times (change and feed) every 3 hours, whether they are hungry early or too sleepy to wake up.  Scarlett was very bad at night, wanting to sleep and so those care times would last closer to an hour.  Then Trish would get about 90 minutes of sleep and try it again.  Grayson helped a little once he came home because his body knew when it was time to eat and has an extremely loud cry.

Speaking of crying, if I could translate their cries, it would sound a little like this:
Scarlett:  "Um, excuse me.  Is anyone there.  I have an unpleasant experience happening right now.  Hello?  If you wouldn't mind, I would love your help."

Where as Grayson's cry is more like: "HEY YOU, MILK PERSON.  GET OVER HERE AND FEED ME!  NOW!  THERE IS NO BOTTLE IN MY MOUTH YET!"

We have a plan to try and wean their oxygen.  We will go to the BPD clinic in 1 month and will try them on a flow of 0.1 liters/minute (they are currently on 0.3).  If that goes well, then they will try them on room air during the May visit.  We are hopeful to have them off oxygen by then but are prepared to spend the summer tied to the house so we aren't too upset if it is delayed.

The last thing we learned in the BPD unit was we should have a puls-ox machine too.  I am not sure who dropped the ball on that but we should have had that when we came home.  It was terrifying to go without it.  A couple times we walked past the oxygen machines and the tubing had popped off.  We would have no idea how long they weren't getting their oxygen and the alarm doesn't sound unless their heart rate dropped below 80 or their breath rates are really high.  I personally hold the person at Children's responsible because she should know better, but apparently the Medical Supply company told her that our insurance wouldn't cover both an apnea machine and a puls-ox.  The BPD clinic said they like for us to have both but some parents are overwhelmed.  Anyway, our wonderful Case Manager with Anthem is on it.  She spoke with the DME company and we should have one soon.

I don't know how useful they will be now, but transitioning home was hard.  We were rockstars in the NICU, involved in as much as possible.  BUT we weren't responsible for anything.  Anytime we thought we saw something different, we had a trained professional that we could check with.  At home, we are the only ones determining if they were working harder to breathe, if that cough is concerning, or if they were sleeping too much.  Plus we have newborn twins, and they have doctor's orders to feed them every 3 hours.  They can't eat until they fill up, but they have to eat a certain amount.  And there is two of them!

The start of this chapter is harder than we thought it was, but easier than the beginning of the book.  We are extremely grateful to have both our babies home.  We couldn't imagine life without them.  They are showing more personality every day, and we love them SO much.

Happy St. Patrick's Day!