Today we reached a big milestone!  This afternoon I got a call from the apnea clinic where Max & Michaela have been regulars.  Our doctor analyzed data from both of the babies’ apnea monitors from the last 2 weeks and there were no abnormal events, so we’re officially free to stop using the monitors altogether.

The babies have reached all the developmental milestones you’d expect 2 month-olds (adjusted age) to hit.  They’re smiling more often, responding to friendly faces and voices, rolling over, reaching out to play with mobiles, and gaining tons of weight.  The milestones that really hold a special place in our hearts; however, are the ones that most clearly mark our steady progression from caring for two sick babies to enjoying our healthy, happy baby boy and girl – milestones like graduating from apnea monitor use!

Baby A and Baby B earlier this afternoon! Michaela’s wearing yellow.

Michaela was released from the NICU first, on March 3rd, and Max was released exactly one week later.  When we first welcomed them home, they were on 10 different medicines, continuously connected to their clunky apnea monitors, scheduled for multiple appointments a week with pediatricians, pulmonologists, opthamologists, and various other specialists, and receiving frequent check-ups at home from a home care nurse.

In addition to this, neither Max nor Michaela had fully developed the coordination necessary to eat efficiently (it took ~1.5 hours to change, administer medicine, and feed both babies every 3 hours), and they were far from big enough to start thinking about sleeping for longer than 2 hour intervals.

Our initial medicine schedule

Taking advantage of an opportunity to nap! Michael sleeping with Michaela shortly after she came home.

Earlier this week, M&M were able to string together a 7 hour stretch of time when they were both sound asleep (at night, no less!), and since the apnea monitors are now a thing of the past, the only remnants of NICU life we’re still dealing with are the few multivitamins and reflux meds the kids are still on.

The past 3 months have been a challenge, but as we move further along, we’re finding it only serves to make moments like these (smiling babies below) even more enjoyable…!

Smiley Max

Chatty Michaela

Since Michaela and Max no longer require any eating or breathing support (no more tubes!), we are now essentially free to handle them at will when we visit.  When they’re fussy, we can pick them up and hold them.  When they’re uncomfortable, we can give them a hug. When they smile, we can kiss them.  When they’re having trouble breathing, we can give them a pep talk.  Today, when the babies cried, I was able to comfort them.

In my opinion, the most difficult aspect of the NICU experience for us has been to watch M&M go through so much pain and discomfort – every day for 2 months – and not be able to do anything about it.

That’s what makes a day like today seem so perfect.

Max and Michaela are continuing to work towards homecoming day.  The last big hurdle they both have to overcome is learning how to eat on their own.  Max is a great eater – his suck/swallow reflex is strong and he eats well whether nursing or eating from a bottle.  His issue is that he eats so quickly that his breathing coordination suffers.  His oxygen levels drop so low when he’s eating that he requires oxygen support through a nasal cannula whenever he’s feeding from a bottle.  The doctors say this is a developmental problem he should grow out of, but if he is ready to go home otherwise, he may be sent home with oxygen support.

Michaela has a different eating challenge in that she is typically uninterested in sucking.  The problem with that is that if she doesn’t finish her bottle on her own, she has to be gavaged – force-fed through her feeding tube – so she gets all of the calories she needs.  In order to be eligible for discharge, she has to complete every feeding on her own for 48 hours.

Once they are ready, both babies will go home with home apnea monitors that will keep tabs on their respiratory and heart rates.  They are cumbersome, bulky and ridiculously loud, but they will give us some peace of mind the 1st few months the babies are at home.  We will also be working with a nurse who will visit the house a few times a week to monitor the babies’ progress.

Meanwhile, Max & Michaela had some very special visitors this weekend and we got to celebrate their progress with friends and family with a (slightly delayed, but absolutely perfect) baby shower!

Michaela chatting with one of her great-grandmothers!

Great-grandpa happy to meet the newest additions to the family

Max gulping down his milk…

…and being forced to take a break!

The fashion show begins for Michaela. Although it matches, we’re hoping she’ll lose that feeding tube accessory soon!

Celebrating babies!

As it turns out – Max & Michaela may still have a bit of a wait before they can show off even their preemie sized clothes.

Max not quite fitting into his smallest onesie

…We’ll try again next week!

It’s been 53 days since Max and Michaela were born, and our conversations have just now begun to shift from centering around daily wins or setbacks to preparations for homecoming.  The nurses who work with our babies have each hinted in their own way that M&M’s struggle and subsequent progress has been remarkable to watch over the past few months.  Now that both babies have passed their fair share of hurdles and are more stable on their own each day, our nurses and doctors speak more candidly about just how much of an uphill battle Max and Michaela faced to make it where they are today.

Superbabies in their ‘big kid’ cribs

Both Max and Michaela have graduated to open cribs in the last week and they are no longer receiving any oxygen or other respiratory support!  They are both successfully eating from bottles every other feeding, and Max has even attempted a few feedings with his mom the old-fashioned way.

Max just before he lost his oxygen support

New and improved Max breathing free!  He is well on his way to graduating from his feeding tube (pictured) as well.

Michaela has pulled slightly ahead with her weight gain, and the nurses predict she may be 1st to make the trip home in two to three weeks.  She currently weighs 4 lbs. 6 oz., while Max is just under 4 at 3 lbs. 15.5 oz.

Michaela’s focusing on getting fatter.

Our trips to the NICU will be more frequent now as we’re allowed (and encouraged!) to be more involved with feeding, changing diapers and everything else care related in preparation for when the babies will be ready to join us at home.

Motivation on the side of the Piche baby cribs… every night we get to cross off another day

Max and Michaela continue to benefit from the prayers and love of family and friends!

Valentine’s Day gift from the March of Dimes

We are definitely happy to be looking forward to more comfortable times.  First step… matching outfits 🙂

Michaela has had a great week!  She now weighs 3 pounds, 8 ounces (1613 grams), and is on the lowest possible high flow setting (1 liter of oxygen per hour).  This means that she should be graduating to an open crib any day now.  Since she’s big enough to begin regulating her own temperature, we’ve been tasked by the nurses to bring in her very first (tiny!) outfit. We couldn’t find a store that carried clothes quite small enough, so we’ll have to wait for her Amazon.com package to arrive to commence the fashion show.

In order to be eligible for discharge from the hospital, she’ll have to hit 35 weeks gestational age (just over two weeks away), she’ll need to be successfully regulating her own temperature, she’ll have to pass the Car Seat Challenge, and she’ll have to be able to eat on her own.  She’s not quite as interested in sucking as her brother is. Right now she still relies on a feeding tube to receive milk, but we’re hoping she starts to show more interest in sucking so she can start learning how to bottle/breast feed.

Recent pictures of the little girl…

Michaela always wants to see who she’s hanging out with

…trying to figure out her pacifier

Sleeping with mom

Max and Michaela are both just over a month old, and will reach 33 weeks (gestational age) on Wednesday.  Max is 3 pounds, 7 ounces and continuing to gain weight quickly!  This past week was a bit difficult for him in that he had trouble breathing and experienced more episodes of apnea and bradycardia than in previous weeks.  Here’s a summary of his current stats:

Max is still on High Flow Therapy, and receives 4 liters of oxygen per minute.  The goal is to wean him off of the support until he gets down to 1 liter.  Once his breathing is stable at 1 liter, he’ll be free to enjoy breathing completely on his own (no more nasal cannula!).  He made it down to 3 liters earlier this week, but had to be bumped back up to 4 yesterday when he struggled to keep his oxygen levels up.

The doctors performed an x-ray on Max’s chest yesterday to see if he had fluid in his lungs that was preventing him from breathing comfortably.  The images were ‘hazy’, which indicates there is a bit of fluid.  His legs are also puffy which means he is most likely retaining fluid all around.  He started receiving small doses of diuretics twice daily to help him get rid of his excess fluid.  We’re hoping this translates into improved breathing for him over the next few days.

Max’s heart murmur is still audible, which means his PDA (patent ductus arteriosus – the small hole between his heart and lungs that remains ope) is still working on closing.  His PDA is not large enough to warrant surgery or even medication, so his murmur will be monitored to make sure the hole is slowly closing on its own as he grows.

The exciting news is that his weight gain is right on target, and he looks different (and fatter!) every time we see him…

Max LOVES his pacifier. He’ll be a very good eater!

Looking at his mom through his isolette

Comfortable 🙂

Light bothers Max’s eyes occasionally. When it’s very bright, he’ll cover his face with his hands.

Yesterday’s group hug

After a full month, Max, Michaela and Mom were reunited for the first time yesterday!  The twins slept peacefully for 1.5 hours and cried when they had to return to their isolettes. We definitely missed each other…

At this stage, M & M’s underdeveloped eyes allow them to see little more than shapes and changes in light.  Recently they’ve been giving their eyes quite the workout as they slowly shift their focus to figuring out what (in the world) is going on around them.  Both Max & Michaela now respond to their parents’ voices, find creative ways to pull their nasal cannulas out of their noses, and spend a lot of time ‘looking’ around the NICU…

Max trying to see what his dad looks like

Michaela presumably expressing her disapproval of mom’s singing

Max and Michaela now weigh 2 pounds, 9 ounces each and spend most of the day “eating” their meals of milk fortified with extra calories, sodium supplement, and caffeine (to help maintain their heart and respiratory rates).  While M & M continue to gain weight in the NICU, their number one fan prepares for homecoming day by faithfully (obsessively) smelling the babies’ blankets each week before laundry.

A confused family member struggles to find the babies hiding within the blankets

Luckily this fan won’t have to wait too much longer.  Max & Michaela are 4 weeks old today, which means that if all goes well, we are halfway to homecoming!

After a brief period of plateaued weight gain and more frequent spells of apnea and bradycardia, both Max and Michaela have strung together some amazing days.  Michaela had the biggest breakthrough, as she’s graduated from continuous positive airway pressure (CPAP) to high flow.  This means she’s now breathing unaided aside from the occasional oxygen boost high flow provides to make sure oxygen levels remain at the correct level in her bloodstream.  She seems markedly more comfortable, and we can now see her face without obstruction from her CPAP mask – just like her brother!  Both M & M are tolerating their milk, which is fortified with extra calories, and they’ve both started gaining weight quickly.  Max weighs 2 lbs, 7 ounces, and Michaela is right behind him at 2 lbs, 5 ounces.

Since they are more stable, we are able to hold Max and Michaela more often now, so we try to time our visits to coincide with their feeding and cares (diaper change, measurements) as to maximize baby-touching time.

Multiple NICU doctors, nurses and parents who have been in similar situations have cautioned us that this process will feel like a roller coaster – there will be good days, and there will be setbacks.  We are definitely happy to celebrate the recent uphill climb!

Michaela stretching with Duckie. So happy to see her face!

Somehow Michaela found a hat that fits her

Max gets his turn with mom