Week 2 – Never on a Tuesday

At 13 days old, the boys are coming along well.  The progress is steady and pretty good.   As I’m a little behind on the blog entries, some of the details of Sunday are a bit of a blur.

We had a few key milestones on Sunday.  For the first time, we were told that we were getting close to discharging the boys.  The doctor on duty was quite pleased with Dexter’s progress and said that he was likely to be discharged either Tuesday or Wednesday depending on how consistently he ate his meals and that he continued to gain weight.  Spencer was still a little behind and so it was looking like we were going to be taking Dexter to the local Hampton Inn for a day or two until Spencer was ready to be discharged.  We’re currently staying in the Pediatric unit and the nurses reminded us that this was a ward with sick kids and we shouldn’t be exposing our newborns to that environment.  We had brought supplies from home with us on Saturday for just this eventuality, but it still wasn’t going to be convenient.  The logistics were going  to be challenging and Barbara would probably have to stay in the hotel with Dexter while I shuttled back and forth to the hospital to care for Spencer and get us food, etc.  But, we’ve learned to take one day at a time and cope with whatever happens.  Now, this week is the local town’s biggest annual event, their street fair which is a large 5 day festival (Tuesday-Saturday).  So, I called the local Hampton Inn to check on hotel availability if we needed to move there.  Of course, they were booked Tuesday and Saturday nights (the first and last nights of the fair).  It’s strange that this small town’s hotel is booked on back-to-back Tuesdays.  Well, we just hoped that things would work out.  If not, there were a few hotels slightly further out, just much less convenient.  While talking with the desk clerk at the Hampton Inn, she informed me that there was a hospital rate for anyone visiting a relation in the hospital.  It was $40 per night less.  That was nice to hear.  I mentioned that we hadn’t heard of that when we were there the previous week.  She actually looked up our reservation and credited my credit card with the difference between the rate we paid and the discount rate.  Wow!  Good customer service.  Although Barbara did point out that we had described our situation to the desk clerk the night we checked in and that clerk obviously did not know about the discount because she did not offer it to us.  But, it was still really nice to get the refund.  And $45 per night (after taxes) is a significant amount of money and can add up if you need multiple nights.

As for the boys, Dexter continued to become more consistent with his feedings.  Although he had had many larger feedings meeting his current target amount (55 ml per feeding), he wasn’t doing it consistently.  He’s eaten 50-55 ml of formula about 6 times out of 8 meals in a day.  But the other two meals are generally about 35 ml.  While there isn’t a daily quota, he needs to eat enough to ensure that he continues to gain weight, which fortunately he has been doing.  Today he measured 6 lbs, 5.6 oz, or up 2.8 oz from yesterday.  A good gain.  Also, Dexter was stable enough for the hospital to do a car seat test.  They put the baby into the car seat for 1.5 hours and watch the body monitors to ensure that the baby can handle sitting for extended periods of time in the car seat without a change in factors (such as heart rate, blood oxygen saturation level and blood pressure).  In our case, because we live more than 1.5 hours away, they do the car seat test for 3 hours.  Dexter passed.

Spencer’s big news is that while he has not matched his big 51 ml feeding from yesterday, he has increased the average amount he takes each feeding.  Before today, he had averaged about 10-20 ml.  Now, he averages about 30-35 ml per feeding.  Big improvement.  And he also continues to gain weight.  Spencer weighed  6 lbs, 7.2 oz, up 1.3 oz from yesterday.

W2-D6 Shop ‘til You Drop

So, when we first thought about the fall consignment sale, we had some general ideas of what we’d want and need, to take care of the babies.  And has that changed.  After a week and a half of caring for them, we have a much better idea of what we’d need.  We knew how much we’d need receiving blankets and burp cloths, we just didn’t realize how many we’d need.  We had thought we’d need/want about a dozen, but we now know we want more (more like 2-3 dozen).  We weren’t sure what we’d want to dress them in, but now we figure we’ll dress them in a lot of the sleep-n-play outfits, so we’ll get more of those.

After a very short night, we got up and got out to the consignment sale.  We showed up right at 7:15 and there was already a line of about a dozen people.  But, because we were club members, we got to go right in and not wait.  Boy, it was a good thing that members got to shop for 45 minutes from 7:15-8:00 before the public gets let in.  We managed to snag a lot of things (including one of the best swings and some SuperYard fencing units) plus some supplies (receiving blankets, burp cloths, and regular blankets) before the doors opened.  We were shopping and not paying attention, but there was no doubt when 8:00 AM rolled around.  Suddenly this wave of humanity washed into the room and the room which had a slight buzz of discussion was filled with a big burst of background noise, talking and mayhem.  We left at 9:30 and managed to get quite an impressive haul of things that will really help us care for our boys.  But, after getting home, sorting the “take” and putting a load of items into the laundry, we discovered that despite this big haul, we had managed to forget to buy newborn-size sleepers, one of the big items on our list.  So, we trundled back out to the sale and got there at 11:00 AM.  We were still able to pick up a lot of sleepers and other clothing items we’ll need.

We also picked up some blankets, onesies, sleepers, caps and burp clothes for the NICU.  We now know how many they’ll go through.  Our boys have pretty much outgrown premie clothes and are ready for newborn clothes, but the NICU can use premie clothing.  Additionally, they need a mixture of boy and girl clothing, so we got a nice haul of stuff to take back to the hospital with us and it was really inexpensive and only gently used.

Now, while we were at the consignment sale, I got a call from our alarm system company.  Apparently the motion detector in our kitchen had gone off.  When we got home, we figured out why.  Our sister-in-law had kindly sent us some flowers and balloons congratulating us on the birth of the boys.  We brought them home and left them on the kitchen table…a little too close to the vent in the kitchen.  After a little while, the air currents blew the balloons around triggering the motion detector.  Well, those balloons found a new home elsewhere!

We ran a few other errands, came home, finished up most of our task list (of over 30 items on the list, we only ended up with a couple that didn’t get finished), then packed ourselves back up and headed back to Pennsylvania.  We managed to get there about 10 minutes before Dexter’s dinner-time feeding.  Whew…gotta get used to the boys putting us on a schedule!  J

So, we came in to find some wonderful news.  Dexter had been stable for long enough they had moved him into a regular crib and out of the incubator.  Yeah!  And the nurse said he had drunk a full bottle (59 ml) for 3 of the last 4 feedings.  He’s starting to eat more and all by himself.  They had even decided that he was stable enough that they removed his feeding tube from his nose.  The doctor had instructed the nurses that if he pulled the tube out, to just leave it out.  The little stinker pulled it out within about 30 minutes, so it stayed out (he must have been eavesdropping on the doctor’s conversation with the nurse).  Barbara fed him, but he would only take about 36 ml so he was still not eating consistently, but when we left, 36 was high and now 36 was low for him.  Spencer was also making good progress.  When we left, his incubator was set at 32.5 C.  When we returned, it was down to 30 F and he was maintaining his body temperature much better.  He wasn’t getting cold as quickly.  He had also started feeding himself more regularly.  He actually took 18 ml from us (the highest he has eaten on his own to date).   And apparently, he is eating about 1/3 to 1/2 of the time instead of like once per day (1/8 feedings).    But, all in all, great progress from both of them.

We found out that the boys were scheduled for a bath that day.  The nurses were going to wait and let us bathe the boys, but the afternoon nurse said that Dexter was so stinky (our words, not hers) that she didn’t want to wait.  Since this is the second time that he’s needed a bath earlier than scheduled, I think we may be bathing him more frequently than Spencer.   I did come back and gave Spencer a bath at 9:30 and then another big surprise…Spencer ate  51 ml of formula…by George, I think he’s got it.

I came back at 12:30 and Dexter did better.  He drank about 46 ml of formula. Which is pretty good.  However, he needs to consistently drink about 400 ml of formula a day and he’s really not up to that level yet.  However, he is doing well in gaining weight.  Thursday, he weighed 5 lbs, 15.1 oz.  And tonight he weighed  6 lbs, 2.8 oz.  So, in 2 days, he gained 3.7 oz. which is pretty incredible.  Spencer has also been doing well.  Thursday night Spencer weighed 6 lbs, 2.9 oz.  On Saturday he weighed 6 lbs, 5.9 oz.  So Spencer gained 3 oz in 2 days.  Additionally, both boys measured 19.5” in length.  Dexter was 19” at birth, so has gained  0.5” in length.  Spencer was 18.75” in length and has gained 0.75”.  So they’re growing well.  Once we get them eating well, we’ll find out when we can take them home.

So after feeding Dexter, the two long days with only 3.5 hours of sleep caught up to me and I apologized to the nurse on duty and did not stay to feed Spencer.  Oh well…gotta take advantage of them being there when I can.  Pretty soon, it will just be us.

W2.D5 On The Road Again

Sorry for the lack of blog entries, but it’s been a hectic few days and we’ve been short on sleep.  So, the last couple of times that I might have worked on blog entries, I napped.

Friday was such a hectic day.  We were planning on going home after the mid-afternoon feedings, so we shifted our schedule earlier to get in three visits with the boys.  So, we went for the 9:30 AM feedings and were shocked when Dexter drank 41 ml of formula and only had to take 14 ml of formula by NG.  This is the most that he’s drunk in any one meal.  We were not too hopeful for Spencer as he had not drunk anything either of the feedings in the morning.  But, he surprised us by drinking 11 ml.  It’s not much, but since he’s a couple of days behind Dexter and doing what his brother was doing then, drinking anything is an accomplishment.

After an early lunch, Dexter continued to improve his consistency by drinking 30 ml of formula.  This was the first time that he had had two back-to-back feedings over 30 ml.  We also heard from the doctors that they expected Dexter to be out of the incubator and into a normal crib very soon since he was doing better and better with his temperature.  That would be one step closer to being discharged from the hospital.  Spencer wasn’t very awake and it wasn’t surprising that he didn’t really make any progress.  He drank about 6 ml, but ver y slowly.  However, he was getting slightly better at regulating his body temperature.  They had lowered his incubator temp to 32.5 C.  Small steps, but at least steps in the right direction.

After the 3:30/4:30 feeding, we quickly bundled up out things and headed on the road again to get home.  We finally got on the road about 6:00 and with one stop for dinner, we managed to get home at 9:00 PM.  We spent about half of the trip discussing the various things that we were going to need to get done at home.    We wrote up a check-list that ended up being over 30 tasks that we needed to do.  We spent the first 20-30 minutes at home doing a tour and check of the house.  We hadn’t been home in nearly two weeks and had heard of major storms and flooding in the area.  But, no signs of any flooding, leaks or issues.  We started working on the chores and managed to get about 2/3 of them done by around 2:00 AM.

It was really, really nice to be home and sleep in our own beds, but I missed the boys already and we had only been away from them for about 8 hours.  I resisted the urge to call the hospital and  check up on how the boys were doing (although when we got back on Saturday, the nurse on duty said that I should have just called).  J  

W2.D4 - Day by Day

I know that it may sound a little odd, but one of the side problems of being in the NICU is dry skin…and I mean, REALLY dry skin.  Every time you go into the NICU, before you can touch anything, you have to scrub your arms with antiseptic surgical soap  FOR THREE MINUTES.  Now, 3 minutes may not seem that long, until you have to scrub your hands and arms up to the elbows for 3 minutes with soap, and a little scrub brush (they have disposable sponge/scrub brushes that you have to use).  Every time you go in.  We go in 5-6 times a day.  And with that much soap and water, your skin gets really dry.  As the nurses say, by the time we go home, we’ll have no skin on our arms.

So, on Thursday, we had our weekly meeting with the neonatologist.  He reviewed the case with us, which was pretty much as we knew.  The boys had progressed very well and were healthy babies about normal for their gestational age (36 weeks, 1 day).  At this point, neither had any outstanding health issues and were just trying to achieve the milestones needed to be discharged.  Dexter was getting quite close to being able to move out of the incubator bed.  His bed temperature had been lowered to 29 C (about 85 F) and he was still able to maintain his body temperature of 37 C.  Pretty soon, once he reaches 28 C and can still maintain his body temperature, he’ll be able to be moved to a crib instead of the incubator.  Dexter was still only eating about 14-15 ml of formula per feeding orally.  He is currently at 52 ml (FYI, 30 ml = 1 oz) and needs to be able to eat all of that from the bottle before he can be discharged.  He’s getting there.  About once per day he eats over 20 ml, but normally it’s about 15.  Spencer is still not ready to be moved out of the incubator.  His bed temperature was just lowered to 32.5 C and he can maintain his body temperature for brief periods, but not for an extended period of time.  Another few days and he’ll probably be able to do it.  Spencer is only really eating himself about once every four feedings or so (1-2 times per day).  And he averages about 10 ml when he eats.  The rest of the time, he doesn’t really try and just gets fed via NG tube.  When we asked the doctor to give us a ballpark estimate of how long we might need to wait for them to learn, he said it could be as little as 2-3 days (very unlikely) or probably about a week.  We expect that it will be around the end of next week when we get to bring them home.

We’re already working on planning for when we bring the boys home.  When we go in, we each take one baby and do the work.  We try to alternate which baby we take care of so that we both get a lot of bonding time with each boy.  When we get back from our quick trip home, we’ll probably try to alternate visits and each of us take a full 2 hour shift and then take the next one off to try to give ourselves a break and simulate when we are back at home, especially on the days when only one of us is home.  When we go back to work initially, we’ll be going back part-time with me working Mon, Wed and Fri and Barbara working on Tue and Thur until Thanksgiving so that one of us can stay at home until the boys are about 3 months old.  Then we’ll start child care for them.

So, we’ve let the maternity unit know our schedule and we plan to shift a little earlier tomorrow and do the 9:30/10:30 AM through 3:30/4:30 PM shift as I detailed yesterday.  Although it means another 2+ hour drive to get home, it will be nice to get away even for a day and to return home and sleep in our own bed.  But, it will mean a short night to get everything we need to get done and get up early enough to be in Columbia by 7:15 AM.

So, I went to the 10:30 PM feeding/caring for Spencer and found out that at 9:30, Dexter had drunk 36 ml of formula on his own.  Wahoo!  I expect him to poop out on me (perhaps a bad choice of words!) and not drink much at 12:30, but who knows, maybe he’ll surprise me.  As for Spencer, the last two feedings, he had not really drunk much of anything, so I decided with the nurse to not even try (although he seemed wide awake) and give him a break and  try him at 1:30 PM.

At 12:30 AM, Dexter actually took 26 ml more!  I can’t believe that he actually managed two of his biggest feedings back to back.  Dexter weighed in at 5 lbs, 15.1 oz so he gained 0.7 oz.  He’s still growing.  Spencer started off much as before, just kind of playing with the bottle for about 10 minutes.  But then, with a little nudging he started to drink and drink a lot.  He ended up drinking 17 ml of formula which is a big achievement.  This is like Dexter from two nights ago.  Hopefully Spencer will catch on in a couple of days.  What a great little bonus at the end of the night.  Spencer did lose a little weight and weighed 6 lbs, 2.9 oz, down about 0.9 or 1.5 oz depending on if you use the first or second measurement that night.  But as we were told with Dexter, when they just start feeding on their own, they do sometimes have a little drop in  weight before it goes back up.   

Well, just day by day, but today we made better progress than many days.

W2.D3 Getting the Hang of It

Well, we had hoped to be home with the boys by today.  Our original estimate had this as the day that my parents were going to come to visit.  But by last Thursday, we knew that this was no longer reasonable.  I had purchased tickets for my parents to come up to stay with us, and this past weekend, I had to call Southwest Airlines to try and adjust their flights.  When I explained the situation to the airlines, the customer service agent was very sympathetic and canceled my parents’ flights and gave us full credit for their tickets with no cancellation penalty.  I was stunned.  What airline these days doesn’t charge you a penalty for changing/canceling a flight?  But she put a credit into the system under each of their names for which we can just apply those funds to the tickets when we can actually schedule their visit.  MAJOR kudos to Southwest Airlines for their great customer service.  We are already devoted Southwest Airlines fans and pretty much will only fly SWA.  This just makes us bigger fans.

So, we went back to the Pennsylvanian breakfast joint and they were hopping.  Amazing what good homemade home cooking can do.  They had homemade sausage that they make themselves that was out of this world.  We also tried something we had never heard of before that turned out to be incredibly good—baked oatmeal.   It doesn’t sound that appetizing,  but it’s pretty good.  Imagine oatmeal seasoned just right and cooked into basically a quick bread (like a banana bread) and served with a little brown sugar and milk.  Wow…it was good.  I suspect my mother-in-law will love it and have to look for a recipe to try this out for when she comes to visit her new grandchildren.

Once again (this is becoming habit), we showed up at 12:30 to find good news about the boys.  Now one reason that we tend to keep the schedule that we keep is that the doctors come in every morning around 9:00 AM and evaluate all the NICU babies and decide on changes.  Then the staff bustle around putting those new orders into place.  The NICU is very busy in the mornings and sometimes hectic and chaotic and it’s much easier on the hospital staff not to have parents visiting then.  This is why we often have good news when we finally show up at lunch time .  So, today, we found that they were so pleased with Spencer’s condition that they had removed his IV’s.  He was no longer on any supplemental IV nutrition and was getting all of his nutrition from the formula feeding.  Yeah!  Now, he was down to only the monitoring cables and the feeding tube, essentially just like Dexter.  Another step forward.  Additionally, Dexter was getting better at regulating his body temperature and the environmental settings on his isolette bed was down to 29.5 C.  Getting closer every day.   The doctors have also decided that Spencer was stable enough that we should try bottle feeding him anytime that he was wide awake and alert at feeding time rather than only once per nurse’s shift.  And the doctors are just a please with his progress as we are.

So today, both boys needed baths.  They give each baby a bath every 3 days, but Dexter had only gone 2 days but you could definitely smell that he needed a bath.  So, we again scheduled the baths for between the boys bottle feedings, e.g. 3:30/4:30 PM.   We both gave Dexter his bath and then I sat down to hold Dexter and give him his NG feeding while Barbara bathed Spencer all by herself.  She did a great job of it.  

However, he was definitely not ready to bottle feed so we left it at that.  We got a little rest including Barbara getting a very short nap and then went back for the 6:30/7:30 feeding.  Unfortunately, the bath had worn out the boys.  They don’t like getting a bath, so they squall using up energy.  Additionally, while they are getting their bath (essentially a sponge bath), between sponging and drying, they expend a lot of energy keeping their body temperature at a reasonable level.  It still chills them down and even once they are back in the incubators, it takes a while before they come back up to 37 C.  They both fall right to sleep after a bath (hopefully we’ll be able to use this to help set a night time routine for them when they’re slightly older).  But even a couple of hours later, they still were pretty tired and so didn’t feed themselves too well at 6:30/7:30.  Dexter took about 14 ml of formula and Spencer only about 5 ml.  Oh well, we’ll see what it’s like later.  It was very nice when one of the nurses who had helped us several times over the last couple of weeks commented that we were really getting the hang of the baby care and that she thought that we were going to be able to manage quite well on our own. 

We were exhausted so we went out for dinner, then came back and we skipped the 9;30/10:30 feedings.  Barbara got to bed early and Ted caught up on the backlog of blog entries (including this very one). 

So, looking forward, this Saturday is our local Mother’s of Multiples club fall consignment sale.  After this last week and a half, we know a lot more of the supplies and such that we’ll need to take care of the boys.  So, on Friday, we’re going to shift our schedule and go to the 9:30/10:30 AM feedings through the 3:30/4:30 PM feedings.  Then we’re going to get in the car and head home.  We’ll check on the house, unpack and repack different clothes, etc and get ourselves ready to return.  On Saturday morning, we’ll go to the sale from 7:15-8:00 which is the members-only shopping period.  Then there is open shopping from 8:00-11:30.  They close from 11:30-12:00 when they relabel items and reopen from 12:00-1:00 when select remaining items are half price.  We’ll shop, bring out finds home then come back up here for the 6:30-7:30 feedings.  It will be a nice break, a chance to check on the house and to sleep in our own bed.

I went to the 12:30/1:30 AM feeding for the boys and was regaled with an amusing (after the fact) story.  Apparently, Spencer was getting changed at 10:30 when he let lose with the mother of all explosive bursts.  There is a small porthole on the end of the isolette which is normally used to thread various cables through.  When not in use, they put the latex cover over it, but since Spencer had until just yesterday had a lot of IV and such tubes going through, they had not yet covered it up.  Well, Spencer managed to not only give the explosive burst which covered the inside of his isolette, but he got right out through that porthole and covered the wall outside the bed.  The wall with all of the NICU equipment such as oxygen, the humidifier, etc.  The nurse who was about to get off shift at 11:00 got to spend almost an hour cleaning everything.  While I feel bad for the nurse (she’s a really nice one, too), I was so glad that we were not there for this big event in our son’s developing childhood.  I’m sure he’ll give us many memories of our own, but I’m glad that he spared us this one.   So, despite Barbara having given him a great bath, he was really in need of a second bath and ended up with two baths in one day. 

So, Dexter did good.  He weighed in at 5 lbs, 14.4 oz which means that he has passed his birth weight (which was actually 5 lbs, 13.8 oz).  Hooray!  And he also drank 17 ml for me before giving up and having the remainder fed.  He’s still keeping to the 11-25 ml range for feeding on his own…hopefully in the next few days, he’ll increase that.  Spencer weighed in at 6 lbs, 3.8 oz (6 lbs 4.4 oz right after his explosive burst) so he’s still over birth weight and is about 2.2 oz above two nights ago, which seems about right.  My guess is that different nurses are doing something different to get these numbers.  Spencer was pretty tired after two baths and the excitement that he had created, so he once again acted like “What is this thing in my mouth?” and didn’t drink on his own, but then we weren’t too surprised.  Ah well, two steps forward, one step back.  He’s still made huge progress over the last week.

W2.D2 - Coming Back To You

Tuesday, we checked out of the hotel and returned to the hospital.  They still were not quite sure about how many discharges there were going to be.  If there was only going to be one or two, they wanted to be careful not to have what happened to us last night, happen again (having to ask us to leave very abruptly).  We spoke with the Maternity unit manager and told her about the hotel situation.  We explained that we were comfortable if we had to go down to Lancaster and were grateful if they had room, but prepared if they didn’t.

When we went in to see the boys, we found that Dexter had surprised us and had drunk 28ml of 52 ml in the morning feeding.  Go, Dex!  Spencer had not been bottle fed again.  But Spencer was having a little problem with spitting up a part of each meal.  The burp cloths under his head were both stained.  The doctor reviewed this and said to just leave his level stable at 50 ml (he had gone up to 44 ml in the evening and 50 in the morning) for the time being.  So, Barbara took to cleaning and feeding Dexter.  And he decided to have a three-diaper diaper-change.  Every time Barbara would clean him, he would make a mess of the new diaper.  At least he was doing it in the diaper!  I did Spencer and while he was good on the diapers, he decided to share part of his lunch with Daddy, all over Daddy’s shirt.  He definitely wanted me to experience all there was to experience of fatherhood.  But, Dexter ate 17 ml for Barbara and Spencer ate 12 ml for me.

Then the big surprise of the day—without telling us, the unit manager had made arrangements for us.  It turns out that down the hall from the maternity ward is the pediatric ward.  The pediatric ward only had a couple of rooms in use and they were willing to have us stay in one of the empty rooms.  The room only had one bed, but they put a cot into the room and we were just grateful to once again be staying in the hospital and we were just down the hall from the maternity ward.  They said the room would be ready for us after dinner.  Wow, talk about above and beyond the call of duty!  They just continue to surprise us with their generosity and caring at this hospital. 

So, our current schedule is that Dexter has feedings every three hours at 12:30, 3:30, 6:30 and 9:30.  Spencer is one hour behind that schedule.  Dexter right now is only trying to feed by bottle at 12:30 and 6:30 (both AM and PM).  On the 3:30 and 9:30 feedings, they just feed him through the feeding tube since he expends a lot of energy trying to feed himself.  That means that under normal circumstances, we only get one hour off each three hour cycle since we spend about 1 hour on each boy for each feeding.  Then we repeat.  The last couple of days, we’ll sometimes not come in for one or the other feeding tube times (3:30 or 9:30) in which case, then we might still do Spencer’s feeding.  But that at least gives us 2 hours off.  We have taken to eating breakfast in late morning (10:30-11:30), eating lunch between 2:30-3:30 and dinner from 8:30-9:30 to accommodate the boys’ schedule.

So, during our pre-dinner break (5:30-6:30), we ended up spending an hour sitting in the maternity room waiting room.  Barbara took a nap and I checked e-mail.  After the dinner-time feeding, we went and had a quick dinner and then came back to move ourselves into our room.  We skipped the 9:30/10:30 feedings because we weren’t sure how long it was going to take to get into the room and settled.  I sent Barbara off to Spencer’s 10:30 feeding by herself.   I was going to work on catching up on the blog since I was two days behind.  But, it turns out the hospital’s Wi-Fi router was down.  Since I had had a problem the previous weekend which turned out to be  a setting on my computer (a setting that I use for work), I checked to make sure that it was a problem.  But two people in the ER and one in the maternity ward were all having problems

When I went back for the 12:30 AM feeding – Dexter ate 22 ml on his own!  He also weighed in at 5 lbs, 13.1 oz.  He’s only 0.7 oz shy of birth weight and he gained 1.9 oz in the last day.  Spencer ate 14 ml on his own.  He weighed 6 lbs, 8.1 oz, up from 6 lbs, 2.2 oz (again remember, there may be some discrepancy with the cables/tubes and how they zero the scale).  However, he is up 2.2 oz over two days ago (when he weighed 6 lbs, 5.9 oz), so likely yesterday’s weight was a little off.  He’s also 7.6 oz over birth weight, so he’s doing great.

It’s so great to be back and down the hall from our boys.

W2.D1 - Anything you can do, I can do better...

[ 2 posts in one day -- I had time last night to get a little caught up on the blog.  To read them in order, go down to the next post and read it first. -Ted. ]


Monday was a day of highs and lows.  It was like a tennis match, good news/bad news/good news/bad news.

We slept in again.  We’re taking full advantage of the fact that there is a 24x7 nursing staff watching the boys and are easing into the parenting business in 12 hour shifts.  We come in for virtually all feedings and touch times from 12:30 PM until the 12:30/1:30 AM shift (I get out of there about 2:00-2:15).  Then we sleep in.  All too soon, they’ll be all ours and we’ll have to do the around the clock support and will become the same zombies that most other parents become when their children are born.

So we went to try a little local restaurant that is so very Pennsylvanian.  The food was good and included a lot of old familiar Pennsylvanian Dutch culture that reminded me of home.  We’ll definitely come back again.

When we got in for the 12:30 feeding, we found more great news.  Spencer’s breathing was so strong that they had taken him off all oxygen support and he is now breathing well on his own.  What amazing progress in just a few days!  They are also slowly decreasing his IV intake which includes nutrient supplements and he should be off of that in the next day or two.  At that point, he’ll have very few cables attached and will be much like Dexter.  Woo hoo!

We feed Dexter at 12:30 and take care of him.  So far, it’s pretty much the same.   At 1:30, it’s time for Spencer.  At 1:30, they decided to test Spencer with bottle feeding again and since we’re there, they let us do this.  Since Barbara has never gotten to hold Spencer yet, I do the feeding for Dexter and Barbara does the care of Spencer and then gets to hold him and bottle feed him.  This is the first time Barbara gets to hold Spencer—talk about a special treat!  And for an added bonus, since Dexter is pretty stable, the doctor says it is fine for us to disconnect Dexter from his monitor cables and bring him over to Spencer.  So I carried Dexter over to where Barbara is feeding Spencer.  It’s the first time since Spencer had all of the breathing problems that the boys have been together and we got our second family photo together.  Not the best photo, and I’m sure we’ll have plenty more in the future, but an important photo nonetheless.  However, despite all this, Spencer still isn’t quite ready to each on his own, but he’s catching up to his brother!

So we work on scheduling the rest of the day.  We’ll come back for Dexter’s 6:30 feeding and attempt to get him to take a bottle again.  We’ll be there for Spencer’s 7:30 feeding and will try to get him to take a bottle again.  Then we’ll come back and Mommy and Daddy will give Dexter a bath—the first baby bath that either of us has given.  They want to schedule the bath for one of the times when Dexter is not trying to bottle feed because the bath, and the water (which lowers his body temperature a bit) and changing the bedclothes, etc is pretty disruptive and will sap some of his energy and he may not be able to give the bottle feeding his best effort.  So we schedule the baby bath for 9:30.

Because of this, we’ll need to eat quickly between 8:30 (when we finish with Spencer’s feeding) and 9:30.  So, for lunch we go back to the Italian place that we liked that had the big portions so that we can just reheat leftovers for dinner.  Great…we’ve got our plans in place.  We again take the 3:30/4:30 feeding off to rest up for the big evening ahead and for Barbara to finish the things that she needs to wrap up for work. 

At 6:30, we go in to feed Dexter.  He’s still not quite ready for bottle feeding.  He takes a little (say 4 ml), but the nurse mentions that if he’s not actively drinking and sucking, then about 2 ml worth is from moving the bottle around trying to get him to drink.  That movement drips some formula into his mouth and he is just eating what’s dropped into his mouth without actively trying to suck milk from the bottle.  Oh well.

At 7:30, we feed Spencer and, lo and behold, he actually actively eats.  He drinks slowly, but he actually takes several long sucks and takes the milk from the bottle.  He manages to get about 10 ml on his own.  And he’s only been trying for a day or so.  By now, Spencer is up to about 38 ml of formula per feeding, so he gets the remaining 28 ml by feeding tube.  Dexter is again allowed off of his monitoring cables and can come to visit Spencer while he is feeding.  So nice to actually be able to hold them side by side.

So at 8:30, we leave and go to heat up our meals and have our one hour of down time.  We heat up dinner, get set up and just sit down (around 8:45) when a nurse comes in a informs us that they need our room.  The rest of the ward is full and another mother in labor has just come in.  We ask if we have a half hour, and the nurse sheepishly tells us “Less would be better.”  So we scarf down our dinner in about a minute, then we pack up.  We’re packed up in about 20 minutes (about 9:05/9:10).  But we can’t really pack up the car because we need to go into the NICU for Dexter’s bath in about 15-20 minutes and it’s a bit of a hike back to the car.  They let us put our bags into a small private waiting room on the ward.  We get this down with about 10 minutes to spare before we have to go in for Dexter’s bath.  Whew!

So, at 9:30, Mommy and Daddy go in and bathe a baby for the first time, giving Dexter a bath.  We didn’t do too badly and only need to ask a couple of questions of the nurse on duty.  Pretty good and then we dress him again and change the bedclothes on his bed.  He’s all set for a NG feeding (through the feeding tube).

So at 10:15, we’re ready to head out and get ourselves over to the local hotel.  We run over to the local Hampton Inn and decide we’ll just check in until Sunday, just to be safe.  While we’re checking in, the clerk finds out that although the hotel has a room for tonight (Monday night), they are booked for Tuesday AND Wednesday night.  Why?  No idea.  *sigh*  So we check in for one night and we’ll have to play it by ear for Tuesday night.  We had been told that there were some mothers in the maternity ward that might be discharged on Tuesday during the day, so we may be able to stay in the hospital again.  If not, we’ll have to find other options.  I check on-line and there are Marriott properties in a nearby city (about 25 min away) that we can stay.  Not ideal, but we’ll manage.   That will decrease the number of visits that we have to the boys, but we’ve spent a lot more time with our boys than any of the other NICU parents (who have been commuting to and from the hospital from their homes).  Additionally, we can get Marriott rewards points which we use when we go to Cincinnati for Barbara’s eye checkups.  Oh well, another day-by-day decision that we’ll worry about tomorrow.  We’re onto backup plan C and possibly backup plan D by now.  L  But despite all this, we’re still very appreciative of all that the maternity ward did for us.  We stay 8 nights there.  The one night that we were paying for at the local hotel was $139 plus taxes for approximately $150.  Had we spent the other 8 nights there, we would have spent over $1000 on hotel fees alone.  What a gracious gift they gave us there.  Plus the convenience of being on the maternity ward for the first week of our children’s lives is priceless.

At 12:30, I head back over to the hospital for Dexter’s next feeding and Dexter manages to make Daddy quite happy by giving a good ending to a difficult evening.  He begins to actively drink from the bottle.  He’s a little slow and inconsistent, but he actually manages to drink about 11 ml.  He’s actively drinking instead of just eating what drips into his mouth.  This is a major achievement and really makes my night.  I personally think he started drinking because Spencer started drinking earlier that evening and Dexter wanted to keep up with his brother.  Barbara suggests that Dexter was just waiting these last few days for Spencer so that they could do it together.  Either way, a really great way to turn around a hard night.

So, at this evening’s weighings, Dexter was weighed at 5 lbs, 11.2 oz.  Almost an ounce gain from yesterday (5 lbs, 10.3 oz).  Very good weight gain for one day.  Spencer weighed 6 lbs, 2.3 oz, down from 6 lbs, 5.9 oz.  But the doctor did say that he would probably lose a slight amount as he converted from NG tube feeding to PO (bottle) feeding.  The other issue is that Spencer still has two IV’s and sometimes the tubes and IV’s get onto the scale and shift the weight a little, so his weights are just a little iffy.  However, Spencer is still over birth weight (6 lbs, 0.5 oz) so that's a good thing.  Dexter is still a little under birth weight (5 lbs, 13.8 oz) but he's getting very close and he is still gaining every day.

Go, go, go boys!

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.

Opening Night!

It was a dark and stormy night...

And boy, was it! The fast version is that we are now the proud parents of two bouncing baby boys.

At 12:05 AM on September 5, 2011, Dexter Alvin Ren-Hao Ying was born weighing 5 lbs, 13.5 oz and 19" length. Less than a minute later (also at 12:05 AM), Spencer Mitchell Ren-Jie Ying was born weighing 6 lbs, 0.5 oz and 18.75" length. Both boys are healthy. Dexter is fine, but being monitored in the NICU bed. Spencer is also fine but was having irregular breathing so he is on a nasal tube to teach him to breath evenly and help regulate his breathing (but he is not on a respirator).

Now for the longer version:

So, we were at a Labor Day picnic and around 8:30 PM, we had early warnings that the babies were getting ready. After a quick visit to the emergency room and monitoring for about 2 hours, we were told that the babies were ready to arrive and that they were getting ready for a C-section.  We hopped in the car shortly after 11:00 PM and heading north.  We hit a major thunderstorm around York PA that slowed us down for about 40 minutes (visibility was VERY bad), but we made it to the hospital around 1:30 AM.  They were putting IV's in the boys and getting the settled into the NICU.  At 2:00 PM we were able to go into the NICU and spent about an hour with the boys.  We weren't able to hold them yet, but we could touch them and talk/sing to them and have them hold onto our fingers.  Both are healthy and doing great.  When they are able to regulate their own body temperature, breathe regularly without aid (Dexter is able to do this already and Spencer should be okay soon), and eat a specific amount per day, then they'll be ready to leave the hospital.  The staff expect us to be here a few days.  They've been fed so far by IV, but the staff say that they plan to try them out on formula later today.  


The hospital has been great to us.  They had an empty room and allowed us to stay here overnight.  Fortunately for us, they have no scheduled births for this week and as long as there aren't too many unscheduled births in the next few days, we should be able to stay here as long as the babies are in the NICU.  We've been in to see the boys twice today and will be going back pretty soon to visit again and take some photos.


Stay tuned for more details!

Tech week...

So we  had another ultrasound today.  The twins are 34 weeks and 1 day along and doing great.  Baby A was estimated to be 34 weeks and 5 days (so 4 days ahead of average estimates) and 5 lbs, 3 oz.  Baby B was estimated to be 36 weeks (13 days ahead of average) and 6 lbs!  Wow!   Now we know that the estimated weights based on ultrasounds can be up to 20% off, but we still know that even if they are 20% high, that they'll be comfortably over 4 lbs.  Their heart rate is stable and healthy so they are likely to be healthy when born.  At this point, the neonatologist said that if there are any additional contractions, that they will just be prepared to deliver the babies as they are pretty close to average gestation for twins.  He said that twins deliver on average about 34-35 weeks, so we're right on.  Any day now...

Stay tuned...same bat time, same bat channel...