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.