Wednesday, December 30, 2009

Back in the game

Woke up this morning feeling much better.  Whew!  Still not 100%, but I'll take 97%.  Its still an 'A'.

Part of the problem was that I started taking some fenugreek, which is an herb to help with lactation.  I had done this with Zev, and while I don't know if it really helped, I thought I may try it.  Well, a few days into the trial I started feeling rather 'upset' of the GI variety.  Not being of the soundest mind currently, it took me a few days to realize what the culprit probably was.  Enter Google:  side effects of fenugreek can include gastric upset.  Well, there you go.

Fenugreek in the trash.  So while I still have a cold, at least that is my only real upset.  Other than continued  c-section pain and exhaustion, of course.  I actually am still on 600 mg of motrin every 6 hours.  I find that as soon as those 6 hours are up, I immediately feel pain and a cramping feeling.  I really really hope this goes away soon.

Had another good session with the girls today.  We did a 'real' nutritive feeding.  For Meorah, we just put her to the breast to see what would happen.  She actually got into the groove immediately and did a fantastic job.  So much so, that her day nurse cut her feeding volume down and still thinks she ended up being over fed.  For Tzelia, we were smarter and weighed her before and after to find out how much she was taking in.  She only lasted about four minutes before falling asleep, but got eight cc's in that four minutes, which is about a third of her feeding.  While I have no idea if this is any good, the nurse (who is also one of the LCs on the floor) was extremely impressed.  Neither girls had any breathing issues while feeding, which is the major concern when graduating to oral feeds.  Good times.

And as a weight check, Meorah is now 3 lbs 6 oz (birth weight 3 lbs 1 oz, and had gotten down to around 2.5 lbs), and Tzelia is 3 lbs 1 oz (birth weight 2 lbs 14 oz, and similarly had gotten lower).

While at the hospital, I ran into an old co-worker of mine whose wife just had a baby a few days ago.  So I stopped to visit them on my way out.  Her son was a whopping 9+ lbs.  Three times the size of my girls.  She has insulin resistance issues, which can result in larger babies.  The comparison between her son and my  I feel very happy for them, though:  first baby.  Wish them well.

I also had a nice surprise today:  an online friend (Magda, you know who you are) sent me such a nice gift and card.  I've received a few gifts since they were born...not too many, after all this isn't my first time at this...but what made this one special was that I've actually never met her.  Online friend only.  We coincidentally have been pregnant at the same time:  both with my son, and she is currently pregnant with a baby of unknown gender (crazy lady doesn't want to know).  It was a very nice thing to do.

Pretty good day.  Twenty-three NICU days down...

Tuesday, December 29, 2009

Another day of rest

Well, I'm spending another day at home.

I was a bit 'off' yesterday.  But I had a fantastic day with Tzelia and Meorah.

In my last post, I mentioned calling in a lactation consultant to check on my latch with Meorah.  I had felt so bad while 'nursing' her:  she would just get so frustrated by her inability to latch that she would cry.  So I would just try to hold her upright against me, and then she would get bad that I took her little nipple-toy away.  No-win.  I was hoping some help would allow us to have a better mommy-daughter bonding experience.

So the first thing I mentioned when I showed up yesterday was if one of the LCs would be available to give me (and my girls) a hand.  Susan came in just in time when I was settling in with Tzelia, and we tried a nipple shield.  I never had to use one with Zev, so it was a new experience.  But dang, did it work for Tzelia.  The shield made it much easier for her to latch, and when we finally ended our together-time, she came away with a pretty definite milk mustache.  I wish I had a camera.

We did the same thing with Meorah, who took a bit longer to 'get' the idea that if you suck on it, you may actually get a treat.  She did manage to figure it out, but then decided she'd rather sleep.  So we spent the rest of the time just rocking and sleeping.  However, Susan was impressed enough to say I could graduate to nutritive feedings, which is a big step up.  So for now on, rather than pump first, I get to see if the girls can actually breastfeed for awhile before they are given the feedings through the NG tube.  They will still need to continue with the feedings:  it is fortified breast milk and they need the extra calories.  But, even breastfeeding for part of a feed (or feeds) is great.

I did learn the girls will need to go home with bottles, since they will continue to need the fortified milk (and/or formula...but I'm going to hope it sticks to only breastmilk).  But that isn't will probably make things easier.

Unfortunately I was feeling kind of icky yesterday and by the end of the day knew I was coming down with a cold.  Well, I live with a 2 year old.  He attracts germs.  The poor guy's nose is just a running faucet, and you can't help but get it on you if you come within a ten foot radius.  I feel so bad for him right now:  he's just in a cranky mood, but most people are when they are sick.  Poor thing.  Hopefully he'll feel better in a day or so.  At least it is an improvement from last year when he was sick all time time.

I'm just hoping I am feeling better by tomorrow.  Since I have a cold, I cannot go near the girls.  I did have to go to the hospital since I was out of bottles for pumping and I wanted to drop off some laundry and milk.  But I couldn't go into their room.  Which made me cry, which made their nurse cry.  Of course she encouraged me to call if I wanted to, and she did say how great they were doing.  I knew they would be...I was just looking forward to doing some more bonding.

So I've mainly spent the day at home.  Most of it at the pump.  But that seems to be my life right now...

Monday, December 28, 2009

Feeling pulled in different directions: the guilt

No, I am not guilty that the girls came early.  I know I did my best and they just needed to come out.

But I feel guilty (or perhaps sad) that I can't spend as much time with them AND spend quality time with my son.

During the week it is pretty easy:  Zev is with Nicole, so I can spend all day at the hospital if I want to.  I generally stay home with them in the mornings until they leave for their adventures, and then I go to the hospital for a few hours and make it back home in time to see them come home.  I get to spend the evening with Zev and Jason until Zev goes to bed.  It isn't a bad set-up.

But on weekends Zev is home all day, as is Jason.  I still want to go to the hospital because if we do not hold the girls, no one does - the nurses will not do it because they want to 'save' that for parents.  And, I want to drop off the milk I have been pumping, catch up on how they are doing, etc.  Today I felt bad about going to the hospital, and then I felt bad about leaving...

I left Zev when he was having breakfast with Jason.  Which made me feel like a bad mommy.  My guess is that it is reminiscent of when I was on bed rest and couldn't do anything with Zev:  now I CAN but I was choosing not to.  I could have gone while he was napping, but it would have left Jason stuck in the house  and it would have been harder to time with their 'care' periods.  Plus, I'm a creature of habit and like to go in the morning so I can catch the doctors who are around.

So I left.  I spent some time with Tzelia and some time with Meorah.  It was nice, but I do have to call in a lactation consultant:  Meorah gets very frustrated with our little 'playing breastfeeding' time, and I want to get a consultation to try to make it easier for her.  She is pretty finicky and likes to suck on things...her hands, a pacifier, your finger...but she is having trouble latching and will pull away and cry.  Poor thing. She is just so small, which makes it hard for her.  I think having someone give some pointers would be helpful.  I didn't have this problem with Zev, so it is a little hard to handle emotionally...but I know practice makes perfect and we're just starting to get there.   Tzelia has some difficulty as well, but it doesn't upset her as it does Meorah.  I have to remind myself that they are only 33 weeks and barely old enough to even get the concept.

I left after holding Meorah, and I just remember her laying in her little isolette with her eyes WIDE open staring out at the world.  I felt so bad leaving her like that.  She looked so tiny.  I feel bad about leaving my son, and I feel bad about leaving my girls.  Its a no-win, unfortunately, until they come home.  But even then, it is just the start of having to deal with more than one child:  one will always need more attention than another, and I have to learn how to cope with any guilty feelings I may have about 'neglecting' the others...

We did have a nice afternoon with Zev after he woke up.  We went to a little indoor playground and let him romp around:

Jason and Zev

Me and Zev (When I stood up, I think I took the car with me...)

Zev and the train set...if we had room, I'd buy him one

The lighting for the pictures was pretty poor:  it was a large warehouse in Watertown.  But we had a good time.

Back to the work-week schedule tomorrow....

Sunday, December 27, 2009

And the siblings meet

The flu ban was lifted.

While I was on bed rest, there was a flu ban in the hospital:  no children were allowed in the hospital unless they were there as patients.  Luckily, people tended to ignore the ban, so I could still see Zev while I was in the hospital.  While he wasn't allowed on the unit itself, I could be wheeled off of the unit to see him in the more public areas of the hospital. We did our best to do that a couple of times a week.  It was actually a mixed blessing for me:  he really wasn't into the hospital, and being a 2 year old he has an attention span of a gnat.  Plus, he had learned that I really cannot do things with him, so he really wasn't all that excited to see me.  So while I was glad to see him, it hurt me to see him as well.

When the girls were born, a similar ban was in place for the NICU only far more strict:  no one except parents allowed.

The ban was lifted the other day, so we were able to bring Zev in to meet his sisters.  My parents were also able to come by, which was nice as my mother is flying back to Florida early this morning.

Zev was...not impressed.  Of course, he's too young to really appreciate that the little babies he saw are his sisters.  He was far more interested in all the lights in the room and riding on grammie's scooter.  Still, we're going to try to bring him a few more times over the course of the next few weeks so he will be familiar with them and it shouldn't be a complete surprise when they come home.

I was very pleased that my parents could see the girls.  It is one thing to look at pictures, but nothing compares to seeing the little ones in person.  They were actually quite alert when we were there - but it was also meal time, and they usually wake up for that.  I spent some more time with Tzelia (I had already been to the hospital this morning and held them both then) and Jason was able to hold Meorah for awhile.  We ended up there longer than I had thought we would, but it was a really nice evening.

Jason reminded me this morning that we haven't gone out to eat in....probably over a month.  That could be...I can't remember.  So we went out to Minado, which is a Japanese buffet in Natick.  It was good and it was good to get out of the house.  The most amusing:  watching Zev eat jello for the first time.  He was completely fascinated and kept yelling (literally) for more:  "JELLO!!!".  At least our table neighbors found it amusing...

He really is a wonderful little boy.  I had missed him a lot while I was on bed rest.   Sure, I saw him every day, but I couldn't pick him up or really interact with him.  While I still shouldn't pick him up (hurts way too much) at least I can play with him, feed him, and spend more time with him.  That is one small good thing that comes out of the girls being in the NICU:  I get some nice quality time with my son before they come home.  Of course, I hate that they are in the hospital, but you have to find your silver linings....

Saturday, December 26, 2009

Merry Christmas

Be-lated Merry Christmas.

We don't celebrate Christmas, but we do spend it at one of my mother's best friend's house every year.  We've been doing it as long as I can remember, and can remember missing only one year when we went on a Christmas cruise.  I always have a good time.  We hadn't been planning on going this year for two reasons:  my mother was going to be in Florida over Christmas and I was still going to be on bed rest and wouldn't be able to travel.  But, since the girls came early, my mother is now here and decided to stay long enough to make it to Jackie's for Christmas.  And, since I can now drive, we went as well.

Good times.  Good food.  It was fun bringing Zev and watching him have a good time.  He is a very social little boy and can be hysterically funny when he wants to be.  We actually lasted longer than I had originally thought we would...but eventually I was just too tired to make it any longer and we did have a long drive back home.  So after about 4 hours, we made our departure.  I asked Jason on the way home if I really did look so tired (people kept telling me so), and he said yes I did.  I wish it didn't show so much, but I just don't have the energy to pretend otherwise.

Before going over, I stopped by the hospital.  All the coming/going is starting to wear on me, honestly.  It is important to me that I go, especially now that we are doing more breastfeeding practice.  But I do get tired so quickly and I am not only physically exhausted but emotionally exhausted as well.  I think it would be easier if there were just one of them; I get there for Tzelia's care time and spend a good 45 min to an hour with her, holding her and rocking her and trying to learn her likes/dislikes....and then do the exact same thing with Meorah for another 45 min to an hour.  It doesn't sound like a lot of time, but it is a lot of concentration in that little period and I'm doing it on so little sleep.  I don't know if it will be better or worse once they come home...they will come home on bottles most likely, which means Jason will be able to help with some of the feedings.  But then it will be 24 hour care rather than just half the day.  If I'm this tired now...

Tomorrow we get to bring Zev to the hospital to see the girls for the first time.  He won't be impressed; he has no conceptual understanding of what a 'sister' is and won't be able to appreciate that they are family and will be coming home eventually.  But I'm hoping to bring him over a few times so when they do come home, at least he will recognize them.  My parents will also come by, now that the flu ban has been lifted.  I'm glad the protocol was changed before my mother went back to Florida:  she's leaving on Sunday morning so the timing was perfect.

Back to bed.  Hope to not sleep through the next feeding.  It has happened a few times, but I try not to stress about it...I figure I need the sleep.

Friday, December 25, 2009

half empty or half full?

How do you see the glass?

Half empty?
Half full?

I've been thinking about this since our drama episode with Meorah yesterday.  It was frightening.  I actually dealt with it rather well in the moment itself.  You have to stay calm during a crisis otherwise things can get so overwhelming that you become immobile.  It wasn't until much later in the evening, after we learned that the radiologist decided it wasn't NEC, that I broke down.

I got lots of support from people who knew what had happened (love our instant communication society, don't you?).  Everyone shared very similar sentiments:  I'm so glad it was a scare and that she's ok.

But she's not ok.  Neither of them are.

I ran into this when I was on bed rest as well:

"wow, you're lucky.  I'd love to be on bed rest and sleep all day"
"enjoy it now:  you won't be sleeping when the girls are here"
"must be nice to catch up on some movies and TV"

No, it wasn't nice.  It wasn't nice to be living in a state of extreme anxiety every hour of the day because you were afraid you were either going to miscarry (before week 24) or go into labor and have children with lifelong disabilities (between week 24 and 28) or go into labor and have to cope with children with probable problems and waiting years to see if any actually emerge.

Yes.  Tons of fun.  I was very rested.

As for the girls, while they are technically doing very well for what they are - 30 week premature baby girls - they are not 'ok' in general.  They would be 'ok' if they were still inside me, where they are supposed to be.  People tend to think that all they need to do is gain some weight, learn to eat, and they'll be discharged.  Things will be hunky-dory and we'll all go riding off into the sunset.

Well, no.  These early experiences are not what humans are supposed to be experiencing.  The girls are not supposed to be eating, being exposed to light, hearing alarms go off, wearing a diaper, or even being held.  These simple experiences make long-lasting changes in the wiring of the brain, which is still supposed to be growing in-utero.  We have years of early intervention to look forward to, continued re-assessments in the NICU for problems, possible PT and OT, knowing that for the next two winters we have to be very vigilant and not let the girls outside that much because if they get the flu it can be disastrous, not knowing for years if we're going to have to worry about any physical disabilities, developmental delay, or emotional disorders due to being born so early, not to mention dealing with comments by strangers about how small they are for their age, knowing they are going to be a few months behind in all their infant milestones and trying not to compare them to other people's infants....

I could go on.

I don't generally think about all that stuff because it isn't helpful.  I learned while on bed rest not to think more than about a day in advance and to just focus on what is going on now.  And I was doing pretty well with that after the girls were born until yesterday.  And even now I'm not thinking about it...until someone tells me how good the girls are doing without qualifying it, that they'll walk away without any problems, that all preemies catch up by age 2 anyway, how much more rest I must be getting with them in the hospital (???), how all they need to do is learn to eat and things will be great....

I know people are being positive and supportive.  And I know many of those statements are made out of ignorance and are not meant to be malicious.  But sometimes I also need acknowledgement that:

This is hard.  It will be hard for a long time.  Once they get home it will still be a struggle at times.

The fact that it is hard is ok with me.  I'm not railing about how unfair this is and I'm not living in guilt.  Because we can pull through and cope with it.  And no matter what, they are a blessing and beautiful and even if something does happen along the way, they are still mine and I am so very glad they are here.

Ignoring the possible struggles means also ignoring any difficulty I'm having coping with those struggles and negates any anxiety I may be feeling (oh, they're fine, you have no reason to worry).  It also ignores the girls as individuals by making blanket statements as to their well-being.  While denial can be adaptive initially, I prefer to be realistic.  I see the glass.  It may be half empty or half full, but more importantly:  what is in it and what am I going to do with it?

I have faith in my ability to get through whatever comes along.  Rather than hear positive platitudes, I'd prefer to hear people ask me how they are each doing and be interested in what I say while not poo-poo'ing any problems, tell me what a blessing they are, and that they have faith in me too.

Of course, hearing how cute they are isn't unwelcome either...

Wednesday, December 23, 2009

First roller-coaster ride. Wasn't a fan.

We've been really very lucky.  No major problems thus far, everything moving quite smoothly along.  So it really was just a matter of time before something was going to happen...

Which was 3am last night.  The night nurse noticed that Meorah was stressing and having some problems.  She seemed unresponsive at times.  A host of tests were done:  blood tests, lung scans, abdominal don't want to mess around with a preemie.  Lungs came back fine, blood tests came back fine.  Abdominal scan came back with maybe something.  Repeat scan done 6 hours later, along with more blood work.  Again....possibly something, but hard to tell.  But, since radiology likes to be safe, they called it possible necrotizing enterocolits (NEC).

NEC is primarily seen in preemies, and is when parts of the intestinal tissue dies.  The direct cause is unknown, although there are many hypotheses.  All that is known is that it does hit preemies, comes on very suddenly, and often occurs about two weeks into life.  It seems to be less common in those being fed breastmilk compared to formula.  Complications include sepsis, perforation of the intestine, peritonitis, and intestinal obstruction.  There is a 25% mortality rate.  When a preemie is diagnosed, they are immediately taken off any feedings and are administered nutrients via IV.  Antibiotics are also given.  Sometimes it resolves and other times surgery can be done to remove the dead tissue and eventually re-attach.  Lifelong disability can also be a consequence, depending on the severity.

Since NEC can progress quickly, they immediately took Meorah off the NG tube and put in an IV for nutrition.  She also has an IV for antibiotics and was given scans and blood tests every 6 hours to check for progress.  When I saw her, the poor thing had her hands wrapped up with the IVs, was laying on her back, and was sleeping.  Her color was very mottled and 'off'.  When she did wake up, she was obviously stressed and kept trying to bring her hands to her face to self-soothe, but couldn't because of the IVs.  She also kept 'air-sitting', which is a preemie stress sign:  lifting the legs in the air so it looks like she is sitting.  Yawing as well, which is another stress sign.  It was really painful to see.  I used a flannel blanket and held her down to provide some support and also held a pacifier for her, which seemed to calm her down a little bit.  Still not ideal.

The only comforting thing was that her doc was actually not that concerned:  Meorah's blood work and vitals were completely normal.  It was his opinion that she was ok:  he had seen the scans and thought that radiology was just being overly cautious (what is a radiologist's favorite plant:  a hedge).  When I left, he had Meorah put back on feedings and off the IV nutrition.  He explained to me that having her off the nutrition for too long would actually hurt her as it would cause the intestinal villi (cells which absorb the nutrients) to diminish, causing future malabsorption issues.  So...we left knowing that things were 'stable' and probably ok, but that she would be getting another scan in the evening.

On our way home, Heidi (the day nurse) called and said radiology took another look at her scans and decided she was fine:  what they saw was stool.  She was really surprised that they acquiesced, given their track record of over-analyzing everything.  So, if they think she's fine, she must be.

Crisis somewhat averted.  We are still very nervous though, and probably will be for at least a few days. It was the first 'set back' that was substantial.  They say that the NICU is a roller-coaster.  I guess we just took our first ride on it.

I think I'd prefer the kid's play area and a more sedating ride, personally.  Not a fan of the roller-coaster.

OT in the preemie?

Yesterday the girls had an occupational therapy assessment.

For a preemie?

It didn't take that long, actually.  But the OT therapist was lovely.  She seemed to agree with everyone else who had looked at the girls:  they are model preemies.  And once again, she gushed about how cute they are.  Well...I'll take that.

What was most helpful was that she gave examples of what cues to look for when the girls are stressed, when they are relaxed, when they are ready to be held, and when they need some 'time-out'.  Preemies can't modulate their sensory input, and they get overwhelmed very quickly.  It is actually best to work with one sense at a time:  if you are holding them, you should be quiet and be in the dark and not move too much.  If they are laying in their isolette, you can let them grasp your hand and talk to them, but still keep things very dark and with very little background noises.  Unlike full term newborns (who still are not that adept at it), they cannot filter out stimuli, and do not know how to direct their attention away when they need to.  So the carer has to do it for them and be sure they are not overwhelmed by too much and one time.  Light touches are not good:  if they are handled you want to have a very firm touch and hold them securely.

The OT said they both have great muscle tone, are flexing their muscles properly, are showing good motor development signs already (bringing hands to their face, staying midline, rooting, grasping, etc).  Again, not too much to assess, but interesting nonetheless.  It was a very positive experience and she gave me some handouts to look at with pictures of preemies who were showing signs of stress, being relaxed, etc., so I could see and remember what she told us.

As they get bigger they will continue to be assessed and when they are discharged we will get an early intervention referral to have the girls looked at later since they are at risk of developmental delays.  I am trying not to think too much about that (although I admit I had a minor obsessive episode the other night and googled CP a bit too much) since it can be years before we see anything, if there even IS anything.  One day at a time.

We did have one minor setback with Tzelia:  it seems the last calorie increase didn't sit too well with her GI and they had to bring her calories back down.  As the doc explained to me, they aren't supposed to be using their GI system at all right now, so having anything in there can be a stressor.  The last thing they want to do is cause damage.  So, we'll back down on the calories and see how she does.  As long as she continues to gain weight (both girls are above their birth weight now!!) it should be fine.

I have a slightly different schedule today:  I am meeting up with my lab from work for lunch.  I haven't seen anyone from work since the beginning of October when I was put on bed rest.  My manager is taking us all out for a holiday lunch and had emailed me to ask if I wanted to join them.  Of course!  So rather than run to the hospital early in the morning, I am going to stay home and just meet them for lunch, and then go to the hospital after.  I printed some pictures of the girls in case someone asks...  should be fun.

Tuesday, December 22, 2009

human instinct is pretty cool

Today was Jason's first day back to work and thus my first day 'alone' and going to the hospital on my own.  I had an appointment in the morning, so I was able to make it to Meorah's noon-time feeding (the girls' schedules are an hour apart:  Tzelia gets care at 8, 11, 2, 5, etc., while Meorah gets care at 9, 12, 3, 6, etc).

New nurse today who was lovely (they all are).  She asked if I had done any non-nutritive sucking with either of the girls, and I said no, but I was told I could start that soon.  Well, no time like the present!!

Non-nutritive sucking is a way the girls can 'practice' breastfeeding.  At their early age, they can't breastfeed:  they don't have the coordination needed to suck-swallow-breathe, which is why they are fed through an NG tube.  Non-nutritive sucking allows them to 'play' around and see if they can at least get the sucking motion down.  I pump first to be sure that there isn't anything (or much) to get so there is no choking danger and they are then introduced to the breast and...well, you just kind of see what they do.  It has been shown to decrease time in the NICU, helps the babies learn how to breast feed, and it great bonding time.  At MGH they encourage it during the feedings so the babies associate being full with being at the breast.

Meorah actually figured it out immediately.  Human instinct is pretty amazing.  It takes an hour for the feeding to be complete, so for that hour we sat and rocked and she tried to figure things out.  After about twenty minutes she konked out.  Hard work.  Tzelia also got into it pretty quickly, although she played around for almost 45 minutes and didn't actually go to sleep until close to the end of her feeding.  Both girls smile when they sleep, and Meorah actually looks like she's laughing.  Really amusing.  It was a very nice afternoon:  both girls were so alert (hey, what is this cool thing???) and I was able to spend a fair amount of quality time with them.  Diana (the nurse) said they would like me to try to do that every day so the girls would learn quickly.  Well, sure.

Was exhausted after that, but stayed and drove Jason home (stupid Storrow traffic!!!!).  Got to spend some time with Zev in the evening, which is always fun.  And then I crashed.

Rinse, repeat, for tomorrow.

Sunday, December 20, 2009

The day after 'rest'

Well, the day started with me sleeping through one of my pumping sessions.  I remember getting up at 3:30am and pumping.  Next thing I knew it was 8am.  Great...missed my 6am shot!  Got up, went immediately downstairs and met up with my new best friend.  It may be the geek inside me, but I find it interesting that my body seems to be pretty good at producing about 1oz/hour.  If I go three hours, I get three ounces.  For that five hour break, I got about five ounces.  Not bad, but I will have to increase that.  While 24 oz is sufficient for ONE baby, it isn't going to cut it for two.  I'll worry more about it as time goes on, but for now it isn't bad.  The girls are being fed every three hours, and they are each getting just under one ounce/feeding.  So I have about an ounce surplus for each feeding...for now.  I'm hoping once they are feeding 'for real', I'll be able to supply more.  I really want to avoid formula as much as I can.  Nothing against formula, but breast milk is the better choice:  far more healthy for the kiddos (which given their preemie status is even more important) and its free.  This is why I am trying to be really anal about scheduling the pumping:  now is not the time to get lazy about that sort of thing...

Jason spent the morning shoveling, which means I spent the morning with Zev.  Which was wonderful.  I really haven't spent any one-on-one time with him in months:  it has been too dangerous. And granted, I can't do much with him right now.  But we were able to play together and have breakfast together; he can climb into his high chair, so I didn't even have to worry about picking him up.  Jason was able to drive me to the hospital after he finished shoveling so I could make my appointment and see the girls.

Appointment went fine.  The midwife thought that it was just a matter of not managing the pain meds well. I did feel much better after my day off (yes....I know 'I told you so') and with the stronger medication.  Still in pain, but definitely much better.  I will have another follow-up appointment on Wed.

And I was able to see the girls.  I did some kangaroo'ing with Tzelia.  Stubborn girl:  ripped out her NG tube while I was holding her.  Hell, I don't blame her...I wouldn't want that in me either.  I didn't have time to hold Meorah, but I did change her diaper.  Its amazing how much can come out of such little bodies...

Still very tired.  I think the trick is to actually continue to take it easy.  It is kind of like stopping your medication because you feel better....well, you feel better BECAUSE you are taking your meds.  I feel better BECAUSE I took it easy yesterday.  So good lesson:  allow myself to rest and take it easy every few days.

Jason is back to work tomorrow.  So this week will be the first week in which I'll be on my own to go to the hospital, get myself around, plan my schedule, etc.  It is actually going to be a busy week, especially with Christmas.  But I think I can continue to 'take it easy'...although I may need reminding once in awhile....

Saturday, December 19, 2009

I stayed home today.  I spent the day in bed, minus any time at the breast pump (although I admit I'm watching The Nightmare Before Christmas while typing this).  I am taking the dilaudid as well...originally I was supposed to be taking 2 mg, but found that really didn't make me feel better.  I upped it to 4 mg (was given permission to do so if I needed to) and while I am still in pain, it is marginally better.   As long as I do not move, my pain in about a 2-3 on a scale of 10.  As soon as I move it jumps up, and if I make any real quick movements...well...its close to an 8 out of 10.  I have an appointment with labor/delivery triage tomorrow, and I'll be looked at then.  After that, a follow-up appointment on Wed with a doctor.  I'm hoping it is just slow healing; I do not have a fever or any real indication of an infection.  Just a lot of pain. Perhaps it is just after-pains with the slow healing; my abdomen is certainly shrinking in size and after-pains can be pretty rough for a twin pregnancy.  We will see what the doctors say.

I did not see the girls today, obviously.  Jason stopped by the hospital to see them though.  Since I need to be at the hospital tomorrow anyway, I will stop by, but probably just very briefly.  Especially since we are supposed to be hit with a snowstorm tonight into tomorrow.

It really kills me not to see them.  I spoke to my mother today; she reminded me that it was important to take care of myself and to let myself be taken care of.  She told me to let myself lay in bed, cry, and suck my thumb if I needed to (which made me laugh and then double over in pain from laughing).  Good advice, of course.  And, I know she is right. After all, you are supposed to put your oxygen mask on before your child's mask.

But it doesn't make me feel any better.  I tend to think I'm invincible.  But doesn't everyone?  One more trip to the hospital, one more hour awake, one more errand to run...just one more.  One more won't hurt anything.  I'm great at ignoring any physical signs of discomfort and just going-going-going.  Sigh.  Yet one more thing to learn and take form this experience?  I've already learned a lot.  I am definitely less obsessional and less anxious about 'the little things'.  Less 'Type A'.  This is even shown in how I am coping with the girls' hospital stay:  I am choosing NOT to freak out about their health status, choosing NOT to track down the docs every two minutes for updates, and choosing not to panic when the alarm monitors go off (which I swear, they do every two minutes).  I decided to let things just 'be' unless I am told otherwise.  And it has worked so far.  I am upset that they are there and I am worried about what may happen to them, but I am not incapacitated by it.  I've learned to let things go.  And how to appreciate what I have even in the midst of the unknown and anxiety.

And now I suppose I have to learn how to take care of myself and listen to what my needs are.  Really 'listen', not just give nods and fake smiles.  Learn how to let myself sleep and rest if I need to.  This is different than the bed rest.  With that, I felt physically fine and stayed put because it was best for the girls.  Now I feel horrible and have to stay put because it is best for me.  It was a lot easier when it was for someone else.

I'm sick of having to learn.  I know I have a lot more to learn and that things will continue to be trying.  So I suppose learning how to take care of myself will benefit me in the future, especially when the girls come home and things get even more hectic.

But honestly, I'm getting a little sick of feeling like Job.  Enough with the testing, huh?

a poem

I'm home on bedrest today.  Jason is out with Zev somewhere...not sure where.  They were gone when I came down.

Came across a poem this morning, written by a mom who had twins in the NICU.  Its nice to know that there are others who have been/are going through similar things.  But I'd rather not be a member of the club, you know?

My sweet little ones

You arrived much too early
So tiny so frail,
But perfect in every way.
My sweet little ones
We must live apart for now
You need to keep growing
You live in a womb outside of me now.
I visit everyday only able 
To touch you through the glass.
My sweet little ones
I watch you open your eyes 
And look all around.
Do you wonder where I am?
Can you see me?
Do you know I'm here?
My sweet little ones
I long to hold you in my arms.
I open the door to touch your hand,
You grasp my finger so strong and firm.
I look into your eyes and
I know you have a strong will to survive.
My sweet little ones
To leave you is the hardest part.
My heart is heavy with joy and sadness.
The tears pour down each time I say goodbye.
The three of us are a part of each other,
And soon we will all be together again. 
My sweet little ones

(c) Tammi Hatch All Rights Reserved

Shout out to my husband

Who went and did some kangaroo with Tzelia after Zev went to bed because neither of us got a chance to do that with her today (I was in too much pain and he was holding Meorah).

Who then went to Labor/Delivery to find a doctor to fill a new prescription for a different pain med (the original prescription was backordered at every CVS that was called).  Only he had to wait for the doc to come out of delivery...which took much longer than he had anticipated.

Who then had to fight through a traffic jam leaving MGH (at 11:30pm??) and run to a CVS to get the prescription filled for me.

And didn't get home until after midnight.  Oh, and who also had never eaten dinner before he had originally left and was thus starving all night.

As I said in an earlier post:  I'm pretty lucky.

My two boys

Friday, December 18, 2009

Take it easy...are you kidding me?

I've said before:  I'm not recovering from the c-section very well...

I had a c-section with Zev as well.  He was frank breech (butt down, feet in his face) for my whole pregnancy.  I tried to get him to flip:  I would lay down with my feet in the air and my head down, I would put ice packs on my upper uterus, I would play music toward the bottom of my uterus, I even did a hypno-therapy session to try to convince him to turn over.  Didn't work.  However, I refused to schedule a c-section and insisted on going into labor on my own.  And I did, at 39 weeks 5 days.  The c-section was quick and my recovery was also pretty quick.  I was sent home with a prescription for percocet, which I actually didn't end up needing.  I still have the bottle and there are still pills in it.

So I was expecting something similar this time.  To say it has been much worse would be an understatement.

It started the same:  they make you walk by the second day, as walking encourages healing.  I was taking the percocet every 4 hours and motrin (for inflammation) every 6 hours.  And I was discharged with that regimen.  I only had 30 pills of percocet, so I tried to wean myself down to 1 pill every 4 hours.  That was a bad idea.  I went back up to 2 every 4 hours...and ran out of pills.  I called and got another prescription, and was again given 30 pills.  I was still also taking Motrin, and also occasionally two extra-strength Tylenol (after my oral surgery I found it helped with that particular swelling and pain).  Even with all of those pills, I was still in pain.  I have yet to be pain-free.  I still feel like I'm 3 days post surgery.

Today I realized I was running low on the percocet and only had one full day left...after all, 30 pills doesn't last long if you're taking 2 pills every 4 hours around the clock.   I tried again with just 1 pill.  Nope, not a good idea.  I can get around ok with the 2 pills + motrin etc.  As soon as I cut back, I can't walk.

Remember I am not sleeping more than 2 hours at a time given the fact that I am pumping every 3 hours around the clock.  Each pumping takes about 30-45 minutes when you include pumping + washing the pump parts.  This usually ends up being on a schedule of 6am, 9am, 12 pm, etc., until 6am the following day.  However, I also make sure I am up around 8am rather than 9am to see Zev before he leaves for the day (he leaves with Nicole by 9 usually).  So, despite the fact that I pump at 6am and am back in bed by 6:30, I get up for good around 8.   I spend some time with Nicole and Zev, pump by 9-9:30, and then Jason and I decide when we are going to the hospital.  Wash, rinse, repeat.  Sleep....when?

And not 'resting' either.  I want to see the girls every day, and have to time it for one of their care sessions, which occur every 3 hours.  For Tzelia, that is 8am, 11am, 2pm, etc.  For Meorah, it is 9am, 12pm, etc.  If I miss one of those times, I can't take them out until the next one.  I have a pump at the hospital and at home, so I usually hold one of the girls, pump, maybe chat with a doctor or nurse, and then finish up (or pump again if it has been long enough).  On a long day, I'll be there for 5 hours.  On a short day, at least 3 hours.  I need to be home by 5:30 if I want to see Zev when he comes home, and I try to do my 6pm pumping session at home as well.

No sleep, no rest.  Obviously my recovery isn't going as quickly as it had for Zev.  With him, I spent my days on the couch breastfeeding.  That was it.

Which is why when Jason came into my room around 11am (I decided to try to rest after my 9am pumping) this morning, he said I looked like I needed a blood transfusion:  I was white as a ghost.  My feet were still very swollen, and I had to laugh when he poked my foot and the indentation took a good five seconds to resolve.  Laughing hurt my abdomen, of course.  He made me call the doctor to see if I could go in for an appointment.  At first, the doc wasn't concerned, as edema is really common after surgery, and it can take awhile for the pain to go away.  But when I told her how often I was taking the pills, she decided that that was concerning, especially considering my size (since I'm so small, I should need less meds than someone who is bigger).  She agreed I needed to come in and we made an appointment for 4pm so I could make the girls' 3pm care session.

As soon as I got into the exam room, I started to cry and I don't think I stopped the entire time I was there.  The midwife said I looked exhausted and both she and a doctor looked at my incision.  They are concerned that there might be an infection...there is some redness that is a little concerning, and I am very tender to the touch.  But, they don't want to give me antibiotics unless they are sure, so I'm supposed to be looked at on Sunday and on Wed.  The midwife took a Sharpie pen and circled the 'red' area to be able to note any progression between now and then (how technical, no?).  And I got a prescription for a stronger pain medication since what I have obviously isn't working for me.

I was also told to take a day and do nothing.  Back to bed rest for me.  While the midwife was very very sympathetic, she said I needed a day of "comfy pyjamas", and that even 24 hours could make a huge difference in my recovery.  I'm not supposed to do anything except pump, eat, and sleep.  No leaving the house, no playing with Zev, and obviously no seeing the girls.  I'm even supposed to cut back on the pumping a little bit.

Excuse me?  My girls are in the NICU and you're telling me I can't go?  I know they are doing fine, and I know they are under the best of care.  I'm not worried about that.  But you're going to tell a hormonal post-partum mother that she can't see her kids?  And that she should cut back on the pumping in order to rest...right in the middle of when the milk supply is building and missing even one session can negatively affect future output?

You're kidding me, right?  Do you really want to make me crazy?

Of course I'll do it.  Even if I wanted to ignore her advice, Jason would never let me.  He even wants me to take more than one day (as if).  I can compromise on one day, and lucky for me even the midwife said one day was sufficient.  I think one day + the better pain meds will make a difference.  If not...well, I'll re-evaluate.  But even one day without seeing the girls and without doing much interaction with Zev is going to be hard enough.

At least the girls are doing ok.  Better than ok, in fact.  All the doctors tell me how great a job I did keeping them inside for so long, and how fantastically they are doing.  But they have never been the has always been me and my body that is the problem.  And once again, that seems to be the case.

And once again, I just have to take one minute at a time.  What doesn't kill you.....well, damn, at the end of all this I'm going to be strong enough to be able to lift a locomotive.

Thursday, December 17, 2009

A nice day...

Today was actually quite a nice day.

Did not want to wake up this morning.  I pumped at 10, 1, 3:30, 6:30...and then it was 8 am.  I did NOT want to get up and really didn't have to until 9am for the next pumping session.  But I knew Zev was up and Nicole was either there already or would be very shortly.  If I wanted to see him before they left, I was going to have to get up...sigh.  So, I got up, showered, and was able to spend some time with Zev and Nicole before they left for the day.  Jason and I then went to MGH to see the girls for their 11am feeding.

Beth, the nurse today, said she was planning on giving the girls a bath at 2:30 and did we want to stay for that as well?  But of course!!  So we each did some kangaroo-ing with the girls, left to have lunch, and then got to bathe the girls...  :)

Babies just don't like to take a brought back lots of memories of Zev and his first bath...

First was Tzelia

And then Jason bathed Meorah

And just for comparison:  Zev and his first bath:

I had bought some preemie outfits for the girls...the shirts looked so small until we put them on the girls...then they looked HUGE!!


And Meorah

So cute!  Makes them look a little more 'personal' and not quite so hospital-sterile...

Still grateful

I was thinking about some things before I went to bed last night, and was planning on writing about it during one of these middle-of-the-night pumping sessions.  I spent the last two sessions looking up researching some stuff on the La Leche League page and got too distracted...which leaves this last pumping session.

Looking back on yesterday, I think I ended up crying over something five or six times.  Sometimes it was over something rather stupid, and sometimes it was over something that was pretty reasonable to be upset over.  Blame it on hormones and utter exhaustion.  And stress, of course.  Cause, heck, I got tons of that.

But despite the stress, would it be odd to say that I'm rather lucky?

These last few months have been...well...I wouldn't recommend them on anyone.  Bed rest is pretty rough. I had a lot of comments from people:  "Oh, enjoy the rest now!!  You'll be missing it later!!"  Or, "wish I could spend the day in bed like that"...  Sure.  But lets forget WHY I'm actually on bed rest:  because if I don't keep my ass in bed I'm at risk of miscarrying or (post 24 weeks) delivering early and having to deal with children who possibly will have severe physical, cognitive, and emotional difficulties.  I could get up once in awhile and under my doc's supervision allowed to leave the house once a week.  But restful?

Sure...bed rest is great.  Was great watching my husband do everything and seeing him get more and more stressed over time.  It was lovely spending weeks in the hospital being unable to do anything and having nothing really to look forward to (it isn't until you are in the hospital like that do you really start to appreciate the simple more than two options for breakfast, lunch, and dinner every single day).  And I particularly loved watching my son be confused and over-emotional because while he doesn't have the capacity to understand what is going on, he understands enough of the basics to know that something is going on...and that he doesn't like it.

Oh, and of course experiencing pre-term labor is just a joy in of itself:  lets not forget the wonder of being on magnesium sulfate and how it feels to be unable to move or see for 24 hours.

It was a fun two months.  What doesn't kill you makes you stronger, eh?

But, I do have to say despite all of that, I still feel lucky.

A friend told me the other day that I was lucky to marry such an incredible person.  She's right.  And unfortunately, he doesn't get the credit he deserves.  He was a single dad for two months and not only had to work full time, but had to do all of the child-care (minus when Zev was being watched by Nicole), house care, and watch his sick wife to make sure she didn't do anything stupid.  We had friends who did help (thanks for the dinners!!), but obviously nothing can take away the stress of having to cope with all of that responsibility.  I have always thought that he was a remarkable husband and father:  while on rest I would often talk to women in similar situations and listen to them ask about how to explain to their husbands the seriousness of the situation - it seems their husbands would still refuse to help around the house, watch their children, etc.  And then there was mine...who yelled at me if I picked up a sponge.  Or, I would read questions from wives/mothers about how to get their husbands more involved in the childcare, which is something I never had to worry about:  I could go away for a week and have no concerns about Zev's well-being.  Jason isn't a 'helper', he is a 'parent'.  He doesn't 'babysit' Zev, and I find wives that say that they let their husband 'babysit' their children to be condescending.

So I'm lucky.  I'm lucky to have found someone who was able to cope with such an incredibly stressful situation so well and jump to the task that was at hand.

And Zev...well, he's almost two.  The 'terrible' twos.  But...again, I'm pretty lucky.  Zev is, well, abnormal.  He has his moments, like any toddler.  But they are few and far between.  He's an excellent sleeper, a pretty good eater, has a beautiful sense of humor, and I can probably count on one hand the number of times he has really thrown anything resembling a true temper tantrum.  Provided he is well rested, he is a joy to be around.  I usually joke that Jason and I are in big trouble now...we were spoiled with him and don't even know how to handle a 'typical' infant/toddler, never mind one with higher-needs.  We just have to hope and pray that the girls have his temperament.

And the girls...did I want them to come early?  Of course not.  I know it isn't my fault that they did, and luckily only one person has even insinuated that I played a role in that...which I decided to just brush off.  But for being born at 30 weeks gestation, they are actually doing quite well.  Some of that is probably due to the 1.5 rounds of steroids I received while I was pregnant:  I'm sure that played a role in their early lung development.   And I know some of it is just luck:  we haven't had to deal with any brain bleeding, any infections, any heart abnormalities, or any real 'major' problem.  Granted we have a long way to go, and I'm sure once we get into learning how to eat we will come to some major challenges...but so far so good.  I do a lot of reading on preemie development and talking to women online who also have preemie children, and I read about needing brain shunts places, blood transfusions, diagnoses of CP, problems with Early Intervention, marriages falling apart due to the stress, difficulties in working with the NICU nurses, etc.  None of these problems I have to deal with, at least at this moment.

So I feel lucky.  I feel lucky that I have such a supportive and loving husband.  I feel lucky that I have an adorable two-year old who manages to make me laugh in the midst of all this stress.  And I feel lucky to have two beautiful daughters who continue to do well despite entering the world 2 months early.

Jason asked me how I was coping with things, and I said I just don't expect anything.  I've learned not to think past this moment, because if I try to think about all the possibilities:  infections, health problems, cognitive delays and emotional problems, needing early intervention, future $$ problems due to needing a lot of extra care...well, my brain would just short-out and I would be immobilized.  So, for now, I feel lucky with what I have at this moment.  And we'll just leave it at that.

Wednesday, December 16, 2009

Another surgery

Second round of surgery in 8 days time.

Four days before I went into labor, I had some oral surgery done.  I had a mucocele which appeared while I was in the hospital during weeks 26-28.  Not painful, but very annoying.  I had had one about five years ago that ended up getting so big I couldn't eat.  As soon as I was out of the hospital, I called to get it surgically removed.  Quick surgery:  total time takes about half an hour, and most of that is just waiting for the anesthetic to kick in.  The day after the surgery I noted that it looked like there was still some of the mucocele present, but I wanted to wait and see what it looked like after the swelling went down.  Well, four days after the surgery it was still there...but then I went into labor and had other priorities...

Unfortunately it continued to grow and went back to the size it was prior to the surgery.  Again, not painful but rather annoying.  So, before I was even discharged from the hospital, I called the surgeon and scheduled another appointment (lucky for me, or rather my insurance he wasn't going to charge me this time).  Surgery was scheduled for this morning.

So we went.  And now I have sutures in my mouth again and am sentenced to a few days of a yogurt-only diet.  Lovely.  Luckily this time I'm on percocet already, so it shouldn't be as painful.   And it is only a few days of discomfort; I remember the sutures starting to fall out the day after the surgery and all were out within three days.  Still...I'm uncomfortable enough as it is, and don't really feel like adding this to my list of complaints.

Interestingly, my doctor said he wasn't surprised to see me again:  turns out all those pregnancy hormones can increase the growth of these things (not sure how...up-regulating growth factors maybe?). He said I shouldn't be surprised if it came back, but given that I have given birth I may be lucky since my hormones should be decreasing.

They're decreasing?  Really?  Funny, I'm still over-emotional and crying five or six times a day....  Could have fooled me...

Plan for the rest of the day is to catch the girls' 2pm feeding.  Since I held Tzelia yesterday I will probably hold Meorah today.  Jason managed to hold her for two hours yesterday (lucky!!!) while I was running around trying to get some more percocet - the irony of someone needing pain medicine having to run around to get some is rather amusing...

Oh, and I finally got those pictures of my swollen feet:

And some new pictures of Meorah and Tzelia and of course, their big brother...


Tuesday, December 15, 2009

Doing so well but still feeling it

I went to the hospital by myself this morning; Nicole had an OB appointment, so my mother came to see Zev and Jason dropped me off at the hospital and then went back home to get some chores done and to be there to watch Zev after my mother had to leave.  I'm glad Zev has a chance to spend so much time with his grandparents.  These days it seems the majority of families live so far apart from each other and do not get to spend that much time with relatives other than their immediate families.  I saw my grandparents maybe once or twice a year, and I think it would have been nice to see them more often.  I think Zev (and the girls) are lucky to be able to see their grandparents (and my sister and her family) so often.

Good news for Meorah: not only is she still off the CPAP, but we were able to have her umbilical IV removed. Tzelia's IV was removed yesterday, so both girls are now breathing on their own and only receiving breast milk through their NG tubes.  No more IV nutrition/fluids!  Great news.  The attending doc (they rotate every two weeks) introduced himself to me and Jason and was very positive about the girls' progress.  Always good to hear.

I had lunch with a girlfriend after doing some kangaroo care with Tzelia.  Again, the distractions are always welcome.  I need chances to talk to other people and hear some positive feedback.  And I need to be out of the hospital once and awhile.  We had a nice chat and lunch, and she dropped me back off at the hospital.

I had to have my percocet refilled, unfortunately.  My c-section recovery is going far too slowly.  I just can't 'recover' the way I should:  I'm running around too much and not sleeping enough.  I try to taper the dose but end up in too much pain.  The edema is better, thank goodness.  My feet still feel numb sometimes, but they aren't the sausages they were two days ago...maybe mini-hot dogs or something. is slowly starting to affect me, which isn't good.  I am having some anxious dreams and waking up crying.  Having to get up every three hours is just taking its toll on me, I suppose.  And this just IS stressful.  Jason is feeling it as well:  he mentioned tonight that the last few months are now just catching up to him.  When he was in the midst of it all (me on bed rest, he doing 100% of everything), he couldn't afford to feel the stress - he had too much to do. Now that that period is over, it is settling in.  Granted he is still under stress, but it is a different type of stress.  And, at least now there is a positive:  the girls.

Off to return in three hours...

Another disadvantage of the NICU

Most disadvantages are somewhat obvious and I can expand on that another time.  But one that isn't as obvious that hits me at 12:30 am...

I still have to be up every 3 hours in order to pump.  

Granted, I don't have to deal with colic, burping, lots of diaper changes, and inconsolable crying.  But even with the girls in the hospital, I still don't get any sleep.  Miraculously my body has already trained itself to wake up every 3 hours on its own, so I do not have to set an alarm.  And, at least Jason doesn't have to wake up as well.  But let me tell you...uninterrupted sleep would be nice about now...  And I know I'll be sitting here again at 3:30 am.

Monday, December 14, 2009

How I'm coping at the moment

The 'baby blues' are pretty common; all those hormonal changes after delivery compounded by the added stress of caring for a newborn can make any woman anxious and depressed.  For 8-20% of woman however, postpartum depression can occur.  PPD is much more serious and requires medical treatment.  Unfortunately, women who have had preemies are at higher risk of PPD, as well as have shown symptoms common with PTSD (as described in a nice NYT article PTSD and the NICU).

I am trying my best to be proactive and prevent all that.  I already feel more 'hormonal', which is to be expected.  Not only am I dealing with recovery from a c-section and having my girls in the NICU, I am also recovering from two months of bed rest, a period that was full of anxiety and left me deconditioned with muscle and strength loss.  Now my anxiety is focused on the girls:  their daily health status, their physical development, and their cognitive development.  There are so many cognitive ramifications of being born too early, and there is no way to know at this point what is in store for us.  Even now we don't know the best way to optimize that development.  Which creates even more anxiety.

Heidi, one of our NICU nurses talked glowingly about Heidelise Als, a research at Children's Hospital Boston, whose work focuses on the emotional and cognitive development of the premature baby.  I have already skimmed her work and plan to read more of it; as a neurobehavioral researcher myself, I find that kind of work very interesting, and personal now as well.  As she says, preemies are at risk of many neurobehavioral disorders later in life and what we do NOW can certainly impact the future.  I worry about this:  what kind (if any) special needs we will need in the future, how we will be able to cope with that, etc.  The fact that the girls are breathing on their own and have not yet experienced any brain bleeds or other major events is fantastic.  But there are so many other things to think about as well.

Which is why I am trying to be aware of these possible consequences, yet not focus too much on them.  I am trying to live outside MGH and create enough distraction in my 'other' life.  I know many preemie moms who live in the NICU, and while that is certainly fine, I do not think it would be healthy for me.  Constantly worrying about the girls only hurts me, and thus indirectly Zev, Jason, and even the girls themselves.  Instead, I am trusting that they are in the best of care and sometimes the best thing I can do is to take care of myself.  Which includes going out and being social, spending quality time with Zev (which I haven't been able to do for months) and be sure to enjoy the holiday season that is now upon us.  We went to a Channukah party last night, and another one tonight.  It was wonderful seeing people I haven't seen in months thanks to the bed rest.  It was wonderful spending time with Zev and enjoying his company (he really is a dream of a toddler).  And it was wonderful being out with my husband and sharing that joy.  I am trying to make a point to do more of this and laugh a little every day.

But I miss the girls.  I feel horrible that they are in the hospital.  I know it is not my fault that they are there, and I know I did a good job in keeping them in-utero as long as possible.  I wish I could have kept them longer:  they deserved to be able to gestate as long as possible.  Unfortunately it wasn't meant to be.  I won't berate myself with 'what ifs':  I did the best I could under the circumstances.  And now I have to do the best I can under these circumstances.

I'll be honest:  it is tiring to be so "strong".  I have had so many people tell me how strong I am being.  But it is tiring.  I don't get much of a break right now.  But at least I now have practice in thinking:  one day at a time, one hour at a time, and this too shall pass.

Kangaroo care and c-section recovery

Now that I'm home, each day revolves around when I can get to the hospital to see the girls.  They are 'cared' for every three hours, and we have to coordinate our visits with that care if we want to take them out and hold them.  The last few days we have been there for the 11am feeding.  Jason will kangaroo with one girl, and I will kangaroo with the other.

Kangaroo care involves stripping the baby down to the diaper and having them lay upright against the chest, with their ear above the parent's heart.   Research also shows that kangaroo care helps the girls grow faster:  the parent's body temperature helps regulate the baby's temperature, the baby generally falls into a deep slumber which can help with energy conservation leading to faster growth, the skin-to-skin contact also helps with milk let-down and breastfeeding.  Plus, it makes us parents feel better to be able to hold our babies and be close with them.

It is so difficult to see your little baby in one of the isolettes, with all those wires attached to them, one or two IVs running into them, and perhaps some breathing apparatus attached to them.  Alarms go off periodically and a big monitor is displaying their respiration rate, heart rate, body temperature, and blood pressure.  It is hardly a very comfortable to be in.  And for Meorah and Tzelia specifically, I wonder if they miss each other.  Some hospitals do co-bed twins (MGH does not) and the research does show that twins tend to grow faster if they are co-bed.  However, given the risk of SIDS, MGH does not allow co-bedding.  When the girls get stronger, I hope to be able to hold them together and let them 'remember' each other.

Currently I'm going once a day given that I'm still not allowed to drive.  I am allowed to drive beginning next week, and plan on either spending one longer day there, or breaking up the day and spending the morning and the afternoon there.  Zev is with Nicole (his nanny), and therefore I do not have to worry about him.  Weekends will take more coordination since Zev is not allowed in the hospital because of the H1N1 regulations.  But we'll work something out.

I am recovering much more slowly compared to my recovery with Zev.  I am on a higher dose of percocet, and I am needing it longer:  with Zev I only needed the pain meds for about three days after being home.  I tried cutting back on the dose today and could definitely tell the difference.  Of course, this situation is different:  it is a second c-section, I am much more active compared to post-Zev since I am running back and forth to the hospital, and I am deconditioned due to 10 weeks of bed rest.  Hopefully by next week I will be feeling better.

I am also experiencing a lot of edema, which I never experienced post-Zev.  Edema following surgery is common, but I had also been given 24 hours of fluids and mag sulfate, which I'm sure is playing a role.  My feet are so swollen they actually hurt and you can see indents from my pants up and down my legs.  Jason is making me wear compression stockings, which does make a difference.  I took a picture of my feet, which I'll have to upload here at some point.  They are rather funny looking...

We'll end with an update on the girls:  Tzelia is now off IV nutrition completely and is just taking fortified breast milk through her NG tube.  Meorah was taken off the CPAP this morning, and we'll see if she can stay off of it.  She had been able to previously, so we hope she can do it again.  If she needs to be put back on it, that's fine of is a minor complication.  But obviously we'd love it if she didn't need it anymore...the mask is pretty big and I love seeing her face.

Sunday, December 13, 2009

The pregnancy

It is important to talk about the pregnancy to get a little background information.  This was my second pregnancy.  My first pregnancy was relatively uneventful.  I became pregnant with my son, Zev, with the help of infertility drugs.  When I was 8 weeks pregnant with him, I started bleeding very heavily.  Jason and I went to the ER and I was convinced I was miscarrying; every time I stood up, bright red blood would just pour out of me.  It took hours to get an ultrasound, but there he was.  Heart beating strongly and kicking around.  I was told to take it easy for awhile and wait for the bleeding to stop.

It took about three weeks.  When I finally saw a midwife for the first time I thought the baby was dead.  I bled every single day.  But she used a doppler, and we heard his heartbeat and we knew he was fine.  Minus that initial scare, the rest of the pregnancy was rather easy.  Zev was a stubborn little bean, and stayed frank breech throughout my pregnancy.  I refused to be induced however, and when I did go into labor I had a c-section.  He was 6.5 lbs when he was born, and had his feet up at his ears for a few days, which was rather amusing.  I suppose he was just comfortable that way.

I needed infertility drugs again to get pregnant this time.  But I had an intuition that if they worked I would have twins.  I even mentioned it to Jason, who probably thought I was crazy at the time.  When I started bleeding in THIS pregnancy, again we rushed to the ER.  The first thing the ultrasound tech said to me was, "Well, I see two gestational sacs."  "I know", I replied.

I ended up bleeding 3 times in this pregnancy:  at 7, 9, and 13 weeks.  By week 13 I had a high-risk OB.  Vaginal ultrasounds showed a short cervix and we decided it was best to have an early anatomy scan.  I went into that scan at 17 weeks and we discovered we were having two girls.  And everything else looked fine.  At a second scan at 20 weeks, my OB noted my very short cervix and pulled me out of work immediately.  I was to go straight home and stay there.  I could not get out of bed except to use the bathroom or make a snack.  I had to take daily progesterone suppositories.  And, if I were unlucky and started miscarrying, there was nothing they could do.  Viability is 24 weeks gestation, and if I made it that far, I was to check into the hospital and receive steroid shots to hasten lung development.

I actually made it through those four weeks.  At 24 weeks I had another ultrasound, confirmed the still short cervix, and checked into the hospital.  I stayed for four days, received the steroid shots, and went home to more bed rest.  Things seemed ok.

At week 26 I started feeling cramping that didn't seem to be brought on by anything specific.  Jason and Zev were out of the house, so I called Jason and he came home, leaving Zev with friends.  We went to the hospital and I learned I was 100% effaced and now about 1 cm dilated.  I was checked into the hospital and given some oral meds to stop the contractions I was feeling.  After roughly 9 hours, the contractions were still occurring and I was further dilated, so I was started on magnesium sulfate.  Mag is a horrible drug that is used to stop labor but can only be used for short periods of time given the toxic effects.  Luckily I did not have that many side effects and stayed on the drug for 36 hours.  I remained in the hospital for 2 weeks to reach 28 weeks gestation.  Twenty-eight weeks is considered a fetal milestone in development, and it was safer for me to be under strict observation until that point.  My two weeks were uneventful, and I went home to more bed rest.

Interestingly I had always had another premonition about this pregnancy:  that something was going to happen at week 30.  I became 30 weeks pregnant on my 32nd birthday.  When I woke up that morning, I felt cramping again.  Stupidly I waited until the afternoon to say anything:  I knew if I were to call the hospital I would have to go and I knew they would admit me.  By 4 pm I realized that I really did need to call, and we went to the hospital.  Once again I was in labor and this time I was 3 cm dilated.  I was checked in and the doctors decided to put me on the magnesium sulfate, this time at a higher dose.  I was also given another steroid shot with the hopes that we could delay the labor enough time to finish the rounds of steroids.  Five minutes into the drug treatment, I vomited.  The dose was decreased and after a short while it was increased again.  Again, I vomited.  I spent the next 24 hours unable to see or to move.  I threw up a total of five more times.  And I continued to contract.  By 5 pm the next day I was 6 cm dilated and the contractions were increasing in frequency.  I had to deliver the girls.

I was rolled into the OR

And Jason gowned up.

Tzelia Devorah was born at 6:10pm on December 7th

And her sister Meorah Linit was born at 6:11pm

I was sent to my room to recover from the spinal, and Jason went to the NICU to see the girls.

In total, I spent just over 2 months on bed rest, 18 days of which were in the hospital.  Three episodes of severe bleeding.  Six runs to either the emergency room or triage center in labor/delivery.  Two episodes of pre-term labor but only one was able to be stopped.

These girls wanted to be born.  Happy birthday ladies.

Saturday, December 12, 2009

And a blog is born

I have blogged in the past, but would tire of it shortly after I began.  Perhaps because each day seemed much like the other.  However given recent life events, I thought I may need an outlet for my thoughts, emotions, and something to look back upon in the months to come.  I have a feeling I will forget much of will occur in the coming weeks, and having a written reminder will be a comfort.

The first few posts will concentrate on what brought me back to the blogging world.  But as a quick summary:  I am the wife of a wonderfully supportive husband who has just gone above and beyond expectations these last few months.  I am the mother of a darling of a son who will be two years old in January.  He is a gem and a true blessing.  And I am now the mother of two precious twin girls who were born 10 weeks early and after 10 weeks of home and hospitalized bed rest.

I was discharged from the hospital four days after their birth, as typically done following a c-section.   The girls are still in the hospital and will most likely remain there for the next two months.  These next few months will involve daily drives to the hospital to visit the girls, daily prayers on their well-being with daily updates on their health status.  The breast pump has become my new best friend and sleep is someone I used to spend a lot of time with when I was on bed rest....however our relationship is slowly becoming more and more estranged.

My hope is that by writing in this blog I will be better able to keep track of how the girls are doing, process how I'm feeling about having two premature babies, as well as give myself the opportunity to remember and appreciate the blessings I have in addition to my girls:  my wonderful husband, beautiful son, and support system of friends and family.  Without that appreciation, I imagine the stress can become overwhelming.  The next weeks/months/years of parenting two premature children will be stressful, most certainly.  But life is also full of gifts and joy, and I want to also be sure to enjoy those gifts and laugh along the way.  Life is too short and even in times of hardship there is always something to be grateful for.