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 things....like 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.

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...

                                                                                     

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.

Sleep...it 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 bed...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.

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 course...it 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.

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.