Week 1 - Splish splash I was takin' a bath

So Sunday morning, we slept in, had breakfast in the room and got over to the boys for the first visit of the day at 12:30 pm.  We were welcomed with great news.  Spencer's breathing had been so stable that they had finally taken him off of all oxygen support and he was breathing on his own!  Yeah, finally.  This was such wonderful news.  Also, Spencer's daily intake of formula was steadily going up.  He had been increased to 26 ml and they continue to increase him 6 ml every 12 hours.  When he gets to 56 ml, they'll take him off of the IV feed and he'll have even fewer wires and tubes in him.  At one point just after the surfactant was administered, he had so many wires and tubes, it looked like the Borg queen from the Star Trek movie.  :-(  But the majority of them have been removed and over the next couple of days, hopefully more will continue to be removed.

Dexter remained much the same, but he was getting more stable every day except for the feeding.  One of the real signs of progress is that babies have to regulate their own body temperature.  They are placed in the incubators and the temperature is slowly reduced.  As long as they can keep their body temperature around 37 degrees C (close to the 98.6 F that we're used to), then they reduce the temperature slowly.  If their temp drops below 36.5, the bed stops the temp change or turns it back up a little.  When the bed temp reaches 28 C and the baby can still maintain a 37 C body temp, they can be moved from the incubator into a crib.  This is one of those milestones.  Dexter is down to about 30-30.5 C.  Spencer is still at about 33.5 C.

Apparently at the 10:30 AM feeding, they tried to feed Spencer by bottle, but he acted like Dexter.  He kind of looked like "What am I supposed to do with this?"  We had hoped that since he was so avidly into sucking on the pacifier (it really calms him down) that he'd take to the bottle, but it will take him a little time to get to that, just like Dexter.  The staff said that they'd try him once per nurse's shift to keep testing him.

Well, since we were taking off Dexter's 3:30 feeding to let him rest, we decided to take a walk.  We had been told to try this little local sandwich cafe down the street from the hospital.  We walked down that way, but it was closed on a Sunday.  So we kept walking.  We finally stopped at a Pizza Hut and decided that we needed to eat then and get back to the hospital.  But it was a nice walk out in the sun.  What a nice change of weather from the stormy weather from the previous week.

We decided not to visit for the mid-afternoon visit.  Barbara caught up on some e-mail and work that she needed to do and Ted rested with a book.

When we went back for the 6:30/7:30 visit, Spencer needed a bath.  But neither of us has ever bathed an infant, so this was our chance to learn.  We got to watch and learn how to bathe Spencer.  The nurse decided that since Spencer was still connected to IV's through his umbilical cord that it was safer for her to bathe him and we could bathe Dexter tomorrow.  We definitely agreed and watched and learned how to bathe our children.

While we were in with the boys, it started to storm pretty badly including thunder and lightning.  We were very grateful that we had planned on having our leftovers for dinner so that we wouldn't have to leave the hospital in the storm to try and find dinner.

At night, they weighed the boys.  Both were gaining weight.  Dexter was 5 lbs, 10.3 oz (0.5 oz higher than yesterdays 5 lbs, 9.8 oz).  Spencer was 6 lbs, 5.9 oz, up as well, but I don't remember what yesterday's weight was.  Dexter was leveled at 50 ml of formula per feeding and Spencer was up to 32 ml of formula for feeding.

Every day, they take little baby steps forward, but they’re getting stronger every day.

Day 6 - I'm alright, nobody worry 'bout me

So, I understand from comments that I've gotten from some people reading our blog that it sounds like we're having a pretty hard time here, but it's actually been much easier for us than it sounds.  From early on, we heard from other parents of multiples that premature babies were not uncommon with multiples and that there were assorted milestones that the babies would need to meet before they could leave the hospital.  And it isn't unusual for premies to take a little time to make those milestones.  For instance, they must be able to regulate their own body temperatures.  Premies are used to living in a controlled environment and often don't get that ability until they get closer to their due date.  They also need to be able to consume a reasonable amount of food per feeding on their own and to be able to gain weight at that level.  They also need to be able to maintain even consistent breathing and heart rates.  Our boys are pretty much on track for their age.  They are still roughly 4.5 weeks premature at this time, and making progress.  We're quite happy that they are actually healthy and not in any danger.  They just need time to grow to normal birth conditions.  The staff here are taking great care of them and we get to watch them make strides every day.  Since we had heard from several other parents of multiples before this, we were somewhat prepared for this.  It is taking longer than we hoped, but still within what we had been told we might need to expect.  And because the hospital has been so kind to us, letting us stay on the maternity ward here, we get to be very close to our sons.  We get to visit them whenever we want and to experience all of the "touch times" as scheduled.

Additionally, there is one extremely good benefit that we've gotten from this experience so far.  Most parents of multiples talk about how exhausting it is to take your children home from the hospital and be responsible for all of their care around the clock immediately.  They talk about the exhaustion of the first few months until you can get a schedule going for your infants.  Add to that, most first time parents are just learning how to do most of the childcare on their own and that adds to the exhaustion.  For us, we've had a whole staff of mentors who have been helping us learn how to take care of our kids.  We get to ask them questions as we are caring for our children and learn from them.  Even though I'd had a little childcare experience, I've learned a lot this week to augment and sometimes correct what I've done.  We also get to choose when we go in to care for our children.  Right now, we help out from noon until midnight and then we get a break from midnight to noon.  We get to have close to a full night of rest and still have some breaks.  We're not exhausted like most parents are at the end of the first week.  We get to ease into the parenthood thing and be taught how to do a lot of the childcare skills.  So, we're really appreciating having all of the collected knowledge and training at our disposal for mentoring us on how to care for our children.

So, onward to the kids.  Saturday, was a good day for Spencer.  When we went in at lunchtime, we found out that he had continued to progress and they had switched him from the high-flow cannula to a regular cannula.  And they continue to decrease the amount of oxygen support that he is getting.  And he is having fewer breathing problems even with the decreased air support.  He's definitely progressing well.  They hope that in a day or two, that he'll be off all oxygen support and breathing normally on his own.  Because they had been able to move him to the regular cannula, they were also able to move his feeding tube from his mouth to his nose.  Although the feeding tube in the nose is still a little irritating for the baby, it is significantly less irritating than having the feeding tube down the throat.  And that has also helped to improve his disposition and he's even a happier baby.  He's doing great.  They have also started to increase his feeding.  When I left last night, he was at about 7 ml of formula (just to get his stomach used to processing food).  By the time that we arrived in the morning he was up to 15 ml of formula.  The staff are hoping that he may be able to try bottle feeding as early as tomorrow.

Dexter remains much the same.  He's very happy, very healthy and he's progressing normally and well in almost all areas except that he still hasn't started to eat on his own.  The doctors say that some babies take longer and it is not unusual for a baby not to get it until they are around 36 weeks gestational age, and he won't be there until Wednesday.  Otherwise, we just enjoy having time with him, holding him and waiting for him to catch on.

This afternoon, we decided to go out and find someplace new for lunch.  We found a great little Italian place.  The food was inexpensive and quite good.  Just your little mom and pop kind of Italian pizza and pasta joint.  The waitress clearly enjoyed her work and knew a lot of the patrons.  She said that the Saturday late afternoon crowd tended to be more regulars and that she enjoyed getting to know them.  It was very homey and just a nice change of pace.  The portions were huge and we had big leftovers left, which would be useful.

When it came time for Spencer's 4:30 touch time, I decided to have Barbara go in alone and have some private time with Spencer.  I had been having private time at the midnight feedings with the boys, but she hadn't really had private time.  I used the time to catch up on e-mail and the blog and to download and sort some of the photos from the last couple of days.  Win-win.

Barbara came back, took a short nap and I finished up my work.  After we visited both boys at 6:30 and 7:30, we decided we wanted something different for dinner.  We had been having sandwiches and Italian a lot and after checking around decided to try the local Chinese restaurant.  Okay food and a nice change.  We had some leftovers as well.  Since we were not sure what would be available Sunday night after 8:30, we decided that the various leftovers would be good for then.  We could go out for lunch and stay in for dinner.

All seemed to be going well with the boys and by the late feeding, Dexter was up to 50 ml of formula per feeding and Spencer was up to 20 ml of formula.  Spencer's oxygen support continued to be decreased and he seemed to be on track to be weaned from supported breathing in the next day or so.

So, we're all alright.

Day 5 - TGIF

So, after all of the changes this week, today was surprisingly status quo.  All was pretty much the same as it had been.  Spencer is getting stronger and they have been steadily weaning his augmented air down.  When they can get the flow down to a certain level (2 liters/min) then they'll switch him from the high-flow cannula down to a regular cannula.  And when he's on the regular cannula, they may be able to start trying to bottle feed him formula.  He's down to about 3 liters/min, which is great.  It's so amazing how different he is since the surfactant procedure.  Although he's still a squirmy baby, he's much more calmer and even tempered.  Very little upsets him now.  He's also quite actively sucking on the pacifier when offered, so we're hopeful this translates to him actually eating well when he gets to the bottle, but we've been warned that that doesn't necessarily translate.

Dexter still has not been eating well on his own and the doctor's have changed his schedule to try to help him out.  One thought is that since he is still a premature baby, he may be exhausting himself trying to suckle.  So, they have no moved to only trying to bottle feeding him orally every other visit (every 6 hours) and in between, to just automatically feed him through the nasal feeding tube.  We've also cut down our "touch time" visits to those visits when he's feeding orally.  This is an attempt to keep him calmer and quieter and encourage him to rest and conserve his strength more between visits.  So, now we visit at 12:30, 6:30 and 12:30.  Because of this, we were encouraged to get out and enjoy the sunshine during the afternoon.  So at the time when we would have gone to Dexter's mid-afternoon feeding/touch time, we went out and took a walk.  The "lake" had drained and we walked down to see how the businesses were doing in the area that was under water.  They actually didn't look in too bad shape and had reopened for business.

After we had our 6:30 feeding/touch time Dexter, and then 8:00 pm touch time visit with Spencer, we had to get back to taking care or ourselves.  When we had packed "just in case" a couple of weeks beforehand, we had packed for a week.  Well, we were going to be here for more than a week, so we had to go out and do some laundry.  So we found a laundromat  near the local Wal-mart.   It also turns out that the hospital cafeteria doesn't serve hot meals for breakfast on the weekends.  So we went to Wal-mart and got some laundry soap and some food supplies for us to have breakfasts on our own for the weekend.  I also bought a Skip-bo deck so that we'd have something to do in the laundromat.  Who knew that Friday nights were the happening time at the local Wal-mart.  Apparently, Friday night is one of the busiest nights at Wal-mart (this one is one of the new ones that has a grocery store on one side) and this little side trip took over an hour to get through the store (it's huge) and wait in the checkout line.

We went to the laundry, did our wash and played Skip-bo while we waited.  It's been over 20 years since I've been in a laundromat and pretty long for Barbara too.  We also bumped into a few people who were at the laundromat cleaning large piles of clothes and storage goods (like extra bedding, etc).  Quite a number of people had basements flooded during the storms and it's easier to do clean-up work when you can use side-by-side washers instead of doing one load at a time (and having things get mildewy or such while sitting around wet, waiting for the next load in the washer).

We got back with a little time to spare before I went in for the 12:30 pm feeding with Dexter.  It was about the same, and as the nurse said "It would be generous to say that he ate 2 ml of formula."  Ah well, we did have some daddy-time, but we're still hoping that he figures it out before too long.  At this rate, he may be the one that needs longer in the NICU than Spencer, but it looks like they are leveling out so that we may be lucky that they'll be released together.

The one good thing from Friday night was that the nursing staff had decided that Spencer was stable enough to handle a change in schedule.  He had been on 2:00, 5:00, 8:00, 11:00 cycles which was really hard with Dexter on 12:30, 3:30, 6:30 and 9:30.  We would go and spend about an hour with Dexter, then have to wait about 20-30 minutes for Spencer's time.  The nurses moved Spencer back to 1:30, 4:30, 7:30 and 10;30, so now we go, have about and hour with Dexter and move right onto Spencer.  And it gives us a bit more break between visits.

Every day, a little step forward.

Day 4 Update

Day 4 has been a  real roller-coaster.  Since we arrived, it has been storming off and on.  At times the thunderstorms have been torrential.  We woke to find news that this area has had major flooding including several rivers overflowing and many roads blocked off by flooded low areas.  It was so bad that when we got out for lunch, we were told by one of the hospital staff that the road next to the hospital was flooded.  The hospital is on the top of a hill.  We walked to the edge of the parking lot and looked down the hill.  The road went down and at the bottom, there was about a 3 block long lake and they had the road barricaded in both directions to prevent cars from traversing the flooded area.  From the nearby buildings, it looked as if it might have been 5 feet at the deepest.  So, all day long, we heard from various staff who had problems going home the night before and problems coming in to work.  One nurse said that it normally took her 25 minutes to get to the hospital, but it took her 3 hours today as she had to keep detouring around flooded areas and then finding her alternate routes blocked.  Thankfully, the hospital has allowed us to stay in the maternity ward here while our sons are in the NICU (as long as there are no mothers in need of the rooms...fortunately, this week has not been too busy and there are several rooms unused).  This has been a real gift as it means that we are only down the hall from the boys and can go there easily for their feedings every 3 hours.

So, we went in the late morning for Dexter's feeding and wonderful news greeted us.  Spencer had been weaned down to 21% oxygenated air (essentially normal air)  and he was getting more oxygen in his blood than he had been with 40% oxygenated air before the surfactant.  If he remained this stable, they would be able to remove the big uncomfortable CPAP tube and go back to the nasal cannula.  And we were so happy with his progress.  With his breathing easier and without having to work hard with every breath just to get enough oxygen into his body, he was a completely different baby.  He was calmer and wasn't fussing as much as before.  His color was better and things that had bothered him before were not bothering him as much and he was even able to sleep for periods of time.  What a dramatic difference.  When we went for Dexter's 3:30pm feeding, we found even more good news.  Spencer's breathing had stabilized and he was getting much more oxygen in his blood (regularly between 96% and 100% of expected--before the cannula, he was struggling to get 88-91% of the normal amount of oxygen in his blood).  So the doctors had taken off the CPAP and he was only on the nasal cannula and he was much more comfortable.  Yeah!  Now he's really making progress to catch up to Dexter.

Dexter on the other hand is still having problems getting the hang of suckling.  He eats about 2-6 ml of formula on his own and then gives up.  He gets the rest of every meal (up to 48 ml as of Thursday) via his feeding tube.  The staff says this is not unusual for premies and that he'll learn (they remind me that in 10-12 years, I'll look back longingly at the days when he wouldn't eat!)

Every week the doctors, nurse and hospital staff sit down to review each patient in the NICU, their status, treatment and prognosis.  The prognosis is good for both boys.  Neither is facing anything unusual for a premature infant and they say that infants need on average 36-37 weeks of gestational age before they're ready to leave the hospital.  We just hope and watch for progress each day, which we've been getting.

When I went in for Dexter's midnight feeding I got more good news.  Spencer was doing so well, they decided to move him back from the special bed to the incubator which means he's more stable.  I even helped move him and at one point, the various cables had gotten all tangled up.  They ended up disconnecting his breathing cannula and for the 1.5 to 2 minutes that he was off of the augmented air, he was breathing normal air and his blood oxygen level never dipped below 96%...the nurses said that was quite good and that as long as his levels stayed good for a certain amount of time, that they'd be able to take him off of the assisted breathing.  The little guy is working hard to catch up to Dexter!

Well, just day by day--but today was a good one.

Day 3 Update (Wednesday)

Wednesday morning the NICU physician stopped by and informed us that Spencer was having more problems with oxygenating his blood.  Overnight, they had increased his air flow to 50% oxygenated air.  In the morning, the reduced it back to 45%, but his blood gas levels were still inconsistent.  So, they switched him from the nasal cannula to a CPAP machine.  This is a machine that some adults use for nighttime breathing issues (including snoring and sleep apnea).  It was helping, but it was really irritating him and he was restless and fighting the machine.  The doctor was worried that he might have some condition like Persistant Pulmonary Hypertension or a couple of other problems.  But after several tests, the doctor determined that it wasn't any of the conditions that he was concerned about.  In the afternoon, they determined that basically Spencer had Respiratory Distress Syndrome where the lungs were not able to expand fully to inhale oxygen and exhale carbon dioxide without a lot of effort.  This was exhausting him.  They determined a course of action where they administered a surfactant.  Basically, as a premature baby, Spencer's lungs were not completely expanding with air.  A surfactant is a substance that will prevent the lungs from collapsing, much like detergent allows soap to retain bubbles instead of collapsing.  The surfactant adjusted the surface tension of Spencer's lungs to allow them to stay expanded.  We visited him after the surfactant was administered and the change was incredible.  He was breathing much easier.  He was comfortable and no longer fighting the CPAP machine, his color returned to normal instead of the inflamed red that he had been at since they put him on the CPAP machine.  And most importantly, they had reduced him back to 30% oxygenated air and he was comfortable there.  The doctor thinks that he may be able to slowly wean him from assisted breathing now.  But, it's such good progress.

As for Dexter, his feeding problems continued.  When we arrived at half past noon, we were told that he was self-eating less and less and by the 9:30 AM feeding, he hadn't eaten anything himself and had to take all of it by nasal tube.  The doctor decided that he was going to increase Dexter's intake by 3ml of formula every other feeding until they got him to 42 ml, which is the amount that he should be taking in per feeding.  At the 3:30pm feeding Barbara got him to take about 2 ml of formula in about 30 minutes.  By the 6:30pm feeding by playing around with him, I was able to get him to take 6ml of formula.  Not much, but progress!

We went back for Dexter's 9:30 feeding and found that Spencer had settled a lot and was actually able to rest.  At one point they had dialed him down to 25% oxygenated air, but he started to fuss and they put it back to 30%.  However, they thought that some of that might have been due to him still reacting to the irritation from the surfactant going down his throat.  For that procedure they gave him a mild amount of anesthesia and pain medication.  They thought that some of his fussiness was the pain medication wearing off, the irritation in his throat and the after-effects of the anesthesia.  Dexter only took in about 2ml of formula although Barbara worked hard that half hour to try to get him to take more.  He was up to 36 ml total and had to take the remaining 34 ml by nasal tube.  We stuck around until about 10:35 and by the time we left, they had weaned Spencer back down to 27% oxygenated air.  Hopefully he'll continue to progress!

I went back for Dexter's 12:30 feeding and was greeted with the wonderful news that they had been able to wean Spencer down to 25% oxygenated air.  And he continues to slowly improve his breathing.  After the first 24-36 hours, this was such a welcome change. They continue to wean him lower and are going to delay removing the CPAP until he has stabilized at a much lower level.  It is too hard and traumatic for the baby to be removed from the CPAP but have to have it replaced later.  But, he is breathing so much easier and getting so much more oxygen in his body.  It's marked improvement.

Dexter, was still the same.  For a half hour, I  encouraged him to drink from the bottle, but he's still playing with the bottle more than feeding and we only got about 2 ml in him.  He is up to 39 ml per feeding and took the formula by the nasal tube.  But otherwise, he's doing great.  I held him for an hour while he slept and sang quietly to him.  Doesn't get much better than that.

Day 2 Update

Day 2 (September 6)
So on Tuesday, we found out that Spencer was still having problems keeping enough oxygen in his blood stream.  So they had increased his oxygen level to 40%.  They had also converted to a different nasal cannula that helped add more moist air hoping that the increase humidity would also help his lungs.

When we went back on Day 2, the nurses asked if we wanted to help with the care of the babies.  Boy, did we ever!  So, the boys have "touch time" every two hours (Dexter on the even hours, Spencer on the odd hours).  During the touch time, they take the baby's temperature, change his diaper, measure his belly size (to make sure there isn't any bloating or intestinal complications) and listen to his heart, etc.  So, now, whenever we're there at touch time, we help with the temperature readings, change their diapers and generally get acquainted with our children.  They say that these first few months of bonding are important so we're trying to get as much time with them as possible.  Barbara got to change her first diaper and Dexter knew exactly what to do and rewarded Barbara with her first "golden shower".  She was christened as she lost her "diaper virginity".  I've had a bit more experience changing diapers, but could still use the brush-up.  We're building up slowly.  We've changed about half of the diapers (whenever we're there) and we're getting the hang of this new parent thang.

So Tuesday afternoon, Dexter was ready to start on formula.  He now gets fed every 3 hours (3, 6, 9, 12).  For his first feeding at 3pm, he was a champ and tossed down 25 ml of formula pretty easily.  The nurse handled the first feeding so that they could get some baseline readings on consumption, etc.  The staff was impressed.   They said that we could try the 6pm feeding.  Spencer on the other hand, was still having issues breathing and they didn't want him to have to try to learn to breath and eat at the same time.  So they inserted a feeding tube for him.  Although he was getting most of his nutrition from a special IV for premature babies, they were still feeding him slightly through the feeding tube (about 7 ml per feeding).  They want him to get used to food in his stomach and digesting.  Also, they've now adjusted the "touch times" to every 3 hours, basically at feeding times.

  We went back and Barbara tried to feed Dexter the 6pm feeding.  Unfortunately, he would only eat about 10 ml and the doctor had set a minimum of 20 ml.  When he wouldn't eat anymore, they added a nasal tube and fed him the rest by nasal tube (he needs to eat to get his strength up!).  Dexter is the sleepy baby.  He just wants to sleep...he wakes up for a few seconds at a time and then conks out again.  In fact, even when feeding, he tends to go back to sleep.  Other than how much he eats, Dexter is doing well.

So when we went back for Dexter's 9:00 feeding, we found that Spencer was still having problems keeping his blood gas levels up.  They raised his level to 50% oxygen and put him on a high flow nasal cannula to try to improve the flow.  Poor guy, but he's still doing okay, but just with the help of the NICU equipment.  They're trying to find a way to get him to do all this by himself.

I went back for Dexter's midnight feeding.  Due to various changes in the NICU, his time was moved back about 30 minutes, but he's still essentially on the same schedule.  At night, I was able to spend more time with Dexter.  We had a wonderful hour and a half combined cleaning, eating, cleaning again (he gave me a big present mid-feeding) and then sleeping.  Dexter sleeps through anything and everything.  We're just hoping that this lasts more than just the first few days (Ha!  Unlikely, but we can dream, can't we?).  Spencer had finally quieted down and gotten about 2-3 hours of sleep after all the fussing and tubes and equipment, so I didn't bother him.  He needs to get him strength up for the days ahead.

Day 1 Update

Day 1 (September 5--Labor Day)
Well, after getting a few hours of sleep, we visited with the boys again on Monday late morning.  They were relatively stable.  Unfortunately, Spencer was still not breathing regularly on his own.  And he was not getting enough oxygen.  The doctors said that his lungs were developed thanks to the steroids that were administered right after the Braxton-Hicks contractions and false labor around 32 weeks.  They said that the steroids were very good for the babies.  However, Spencer still had some fluid in his lungs (from birth) and that it wasn't draining as fast as it should.  So they put him on a nasal cannula with 30% oxygen to help him breathe more regularly and get more oxygen into his lungs (standard air has about 21% oxygen).  He was breathing better.  Dexter was doing great and was breathing easily on his own.  After lunch we came back to visit them again and the nurse said that Dexter was stable enough that if we came back after dinner, we would be able to hold him.  Barbara laid down to take a nap (we had had a VERY short night) while I tried to catch up on sending out e-mail notices to various friends and take care of various post-birth tasks that needed to be done.  After dinner, we went back and had a pleasant surprise, we were going to get to hold both babies.  The nurse had some concerns about Spencer's breathing so didn't want to get our hopes up, but during dinner, Spencer's breathing evened out, so she got Spencer ready for us along with Dexter.  We had a wonderful time holding both.  We have a wonderful photo of our family with Mom holding Dexter and Dad holding Spencer.  We also found out that on Day 2, they were going to try to move Dexter up to taking formula (at this point, both boys were being fed intravenously).  For Spencer, they wanted to wait until his breathing stabilized and he was off of the augmented air before starting him on formula.  After Barbara went to bed, I snuck over to see the boys one more time and had a nice quiet visit with them.