Avivah Werner

Category: Parenting

  • Welcome to Holland

    When I first got the news that our baby might have Trisomy 21 (Down syndrome), I shared this with just a couple of friends.

    One of them sent me two beautiful pieces, both of which I’ll share with you (one today, one in a day or two).  The  first was this one, which I had actually read years ago.  I think this applies to so many areas in life; we think we know what we want and that’s what is best for us.  And then we have to resolve within ourselves the difference between what we wanted and what we got.

    WELCOME TO HOLLAND

    By Emily Perl Kingsley.

    c1987 by Emily Perl Kingsley. All rights reserved

    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

    When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

    “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

    But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

    The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

    And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

    But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

     Avivah

  • Acceptance of genetic test results and intuition

    I shared in my last post how several medical professionals all commented on my positive response to the possibility of our baby having Trisomy 21.

    I value emotional honesty and I’ve asked myself a number of times in the last couple of weeks if I’m suppressing my true emotions about our baby’s diagnosis.  After all, it seems most people cry and are upset about this before moving on to happiness or even acceptance – why didn’t I cry?  Why am I not upset?  It’s not because I’m on a high spiritual level, that’s for sure.  But it’s also not because I’m in denial or shutting down emotionally.  I think that Hashem (G-d) prepared me for this emotionally when I was still pregnant and that’s why I was able to so quickly come to terms with our baby having Down syndrome.

    When the doctor told me that first night that they saw signs that made them suspect Down syndrome, I suddenly remembered the strong feeling I had repeatedly had in the middle of my pregnancy – that our baby would have Down syndrome.  I kept pushing this thought to the side as being illogical and eventually forgot about it until that moment.  As I thought about it, I also remembered the reading online I had done at that point – I don’t know what made me read about Down syndrome because this was certainly not relevant to my life at the time and I don’t make time to read about things that aren’t relevant or of interest to me; maybe you could say it was intuition.

    Whatever you call it, I didn’t just passively follow a link that happened to be about Down syndrome.  I actively did a google search – “inspiration about Down syndrome” – searching for something to allay the strong inner feeling I had.  I did a lot of reading – I even read an e-book about how to homeschool a child with Down syndrome! – and shared with a couple of my children some of the pictures on the websites that I was reading.  It was after that I did all of this reading that I stopped having thoughts about the baby having Down syndrome and totally forgot about my concerns until it came flooding back to me right after the doctor told us.  And when she did speak to us, the feelings of appreciation and joy for their special children that parents expressed was all that I thought of.

    I also remembered two key statements.  One was from a friend (whose nine year old has DS) who told me several years ago, “If there’s something that’s got to be wrong, Down syndrome is the absolute best thing you can have.”  She went on to tell me, “Down syndrome is just not that big a deal.”

    The other statement was from a blog reader in my comments section –   “At his upsher my husband said that he cried when he realized that he had down syndrome…..and that is his only regret!!!! He said they should have been tears of joy!!!”  I shared this with dh several months ago when it was posted, and then again that night.  The perspectives of all of these parents gave us something to hold on to, a path to walk down without feeling afraid of the unknown.

    When I had conversations in my head with my baby while pregnant (I don’t talk out loud, though many women do), I had two phrases I would always ‘say’ to him.  I would tell him, “We love and accept you just as you are”, and “Don’t worry, it’s a good world.”  The second phrase was my personal response to a true story I read many years ago by a mother who during labor that stalled ‘heard’ a message from her baby, saying she was afraid to be born because she had Down syndrome.  And the mother basically reassured her baby that they would love her, her labor restarted, and the baby was indeed born with Down syndrome.  Why was this the story that I repeatedly thought of when I was pregnant?  I didn’t know then, but I had a very strong feeling of needing to reassure our baby that he was wanted and that this world would be a safe place for him.  When he was born it became obvious to me why those were the messages that he needed to ‘hear’ throughout pregnancy.

    Also, for the past few months I’ve been giving classes on the weekly Torah portion.  And as much as I’ve been thanked for this, I can say with certainty that it’s been of more value to me than anyone attending.  That’s because each and every week, I spend a significant amount of time learning and reading, looking for messages that resonate with me that I want to share with others of practical day to day wisdom from our Torah.  Often, this message has been connected to how everything that happens to us is for our good and for our growth, even when it doesn’t seem that way at all – sometimes I wonder if I’m being too redundant about sharing thoughts on this! And when you think about something so much, and then share about it with others, it makes an impression on you.

    Overall my feeling is one of being very fortunate and blessed!  This baby is our tenth child and our seventh son.  Both the numbers ten and seven have the spiritual qualities of completion in Judaism, and I feel certain that this baby is bringing some kind of spiritual completion to our family.

    Avivah

  • Genetic test results…

    This morning dh and I traveled to Nahariya to meet with a genetic specialist to get results of testing that was done when the baby was in the hospital.  After 2.5 weeks, we finally have some definite answers!

    When our baby was about three hours old, a doctor told dh that he had some features that are common to babies with Trisomy 21 ( also known as Down syndrome), but, she added, sometimes within a few hours these features change.  When dh told me that, I paused for about half a minute to think about that, and then said, “That doesn’t make any sense.  How can features change, and what features is she talking about?”

    Dh didn’t know, and when I saw the doctor for the first time an hour or so later, after she finished telling us about all the medical issues the baby was facing I asked her what features she was commenting on.  After she told me, I said, “You’re pretty sure it’s Down syndrome, aren’t you?”  “Yes”,  she nodded, as she looked back at me worriedly.  Okay, I thought to myself, so that’s it.

    I took the baby for a nursing session and told dh what she said.  We both felt that Hashem (G-d) was giving us a vote of confidence, as if to say, “You’ve dealt with all the challenges I’ve sent you so well that now I know you can be trusted to raise this special gift.”   It’s hard for me to describe this without sounding woo-woo, but I had a sense of Hashem shining a loving light all over dh and me and our baby.

    The next morning, a nurse came in to ask me how I was doing and talk to me; she was sent because they want to be emotionally supportive of parents who are getting news like this.  It turns out she was an English speaker and I enjoyed chatting with her.  She told me what an amazing attitude I have, and that she’s not worried about me emotionally – she even told me that I’m going to add a lot to the support community for DS here in Israel!  (I thought that was highly optimistic of her being that after the first night in the hospital I was seriously sleep deprived.)

    After her a social worker came in to talk to me, and within just a minute or two of meeting me said, “I don’t know why, but I have a sense that you’ve already accepted this and feel peace about the situation.”  And I told her she was right, and then shared with her my thoughts that our newest baby was purely a blessing and nothing else.  Our baby is our baby and he is precious to us no matter what; hearing about the likelihood of Down syndrome didn’t change our feelings toward him at all (except to make us feel even more loving and protective of him).

    Later on I would speak with doctors, mostly neonatologoists – though at one meeting I met with the head neonatologist, the pediatric hematologist, and the geneticist all at once.  (Having these medical conversations in Hebrew was definitely a linguistic stretch!)  Each of them told me all the specifics about the baby’s situation that they were each responsible for; the geneticist was last.  And she said to me, “I don’t know how – is it faith? – but you seem very accepting about this.”  But we still didn’t have a firm diagnosis, and until the testing was done, we didn’t discuss the possibility of T21 with any but a very few close friends.

    Unfortunately, the first testing results failed and had to be done from the beginning, which meant that we didn’t get a diagnosis until today.  Waiting was really the hardest thing about this situation, since our inclination was to be open with whoever we spoke to about the baby and we couldn’t do that.

    Dh and I left the house at 5:40 am to make our bus connections to get to our 8 am appointment at the genetic institute – they won’t give results over the phone – and it was oddly anticlimactic once we got there.  Basically the geneticist said, “Just as you already thought, it’s Down syndrome.”  Then she showed us a picture of the typical chromosome arrangement, then a chart that showed the T21 chromosome arrangement, then asked if we had any questions.  (I thought to myself, “This is what I woke up at 4 am for???)  When scheduling appointments they leave time for counseling the parents but we really didn’t need any help in coming to terms with this, so that’s why our appointment was so brief!

    We had to see the pediatric hematologist while there, as well as the social worker, and dh commented when we finally left the hospital that it seemed as if all the staff we encountered was expecting to catch us emotionally as we fell apart -they all had furrowed brows and concerned looks as they asked us what we had heard from genetics that morning, and then asked us how we were doing when we told them the results showed T21.  (I told him that’s how it was the entire time I was at the hospital -he wasn’t there after the first night.)

    I’m really glad to have the official diagnosis and no longer have ambiguity about what we’re dealing with.  Not only that, today we got the go ahead from the hematologist for the bris, which will take place on Sunday afternoon.  We feel so blessed with all the good that is overflowing in our lives!

    Avivah

  • Why Holland disappeared

    A number of you noticed that yesterday’s Holland post disappeared a few hours after it was posted and contacted me to find out what’s going on.

    That post was originally scheduled for yesterday, but because I’m waiting for some test results, a few days ago I rescheduled it for the end of this week.  Since I’m having computer issues right now, the computer shut down before it saved and without me realizing it, the post went up prematurely.  That post as well as another article I referenced will be up this weekend, I hope.

    In the meantime, I’ll be sharing about other things that are going on. 🙂

    Sorry about the confusion!

    Avivah

  • Thoughts on our NICU experience

    I mentioned in a post last week that we were fortunate to end up at the hospital that had a good NICU, but I didn’t say that it is not only good, but actually the best neonatal unit in northern Israel.  Our experience at this hospital – Western Galilee Nahariya Hospital – has been very positive, and I want to share about some things that we appreciated.

    Firstly, the staff in the NICU is warm and supportive as was the staff in the high risk maternity ward, where I stayed for four days after the birth).  The NICU has a high ratio of nurses to babies (I don’t know if it’s always like this, but our nurse was responsible for just two babies and when he was in isolation he had his own nurse), and it felt like someone was always watching our baby and making sure things were okay.

    The neonatal doctors were very professional, and I was impressed at how available they were.  Literally any time I went over to any doctor to find out what the latest with our baby was, they were right away available to speak to me.  Not only that, they always knew the details of what was happening with the baby without having to even check the records.  There were specialists who also checked the baby, and they also made time to sit down with me to detail everything and be sure I understood what was going on and had a chance to ask questions.

    The nurses were extremely encouraging and supportive of breastfeeding.  They encourage all mothers to pump milk for their babies from the very beginning, and have a room with two hospital grade pumps, seating, a water cooler, and a privacy screen for when two women are in the room at once.  They show each mother how to use the pumps, where the equipment is, etc.  If you don’t have enough milk, they will supplement with formula but prefer not to have to do this.

    Logistically I wasn’t able to pump enough for my baby’s needs for part of the time he was in the NICU (got behind when I was away for Shabbos) so he did need to be supplemented.  The nurses regularly reminded me to be sure I left him enough milk so they wouldn’t have to give him formula.  One nurse told me, “Mother’s milk is the best and most precious thing!”  This seems to be the feeling all the nurses shared.

    When I was gone for Shabbos, I left several containers of frozen milk there for the baby, and though they prefer that parents prepare the exact amount necessary for each feeding, they understood that I wouldn’t know how much to prepare in advance (since every day the amount the baby was given was upped, usually twice a day), and were willing to defrost it and take care of it themselves rather than give him formula.  When I was finally able to nurse my baby, the nurses offered breastfeeding advice and made sure that I knew what I was doing (though the social worker and nurse joked together that I could probably give the staff lessons!).

    The day after I left, I had to call the NICU about something, and the person who answered the phone immediately knew who I was.  There are so many nurses and staff on hand at all times, that this was impressive to me – they all know what’s going on with the babies, and which parents belong to which babies.

    I’m really glad to be home but the NICU at Nahariya Hospital was a very positive experience for us.

    Avivah

  • Baby’s homecoming

    Yesterday morning I was at the hospital at 9:15 am, as usual. When I came in, a nurse asked me if I was ready to take my baby home that day, and I said I certainly was!

    Our baby in his corner of the NICU – after being unhooked from most of his paraphanelia

    About an hour and a half later, I asked the nurse to check that the paperwork would be ready when I needed to leave, sometime around noon. She told me she didn’t think so, that it would take a long time. I spoke to the head doctor and he told me they wouldn’t get back the latest bloodwork until 12:30, and only at that time would they know if they would release him. And then they’d start preparing the paperwork at that point.

    I was in a bit of a dilemma. There are only two buses each day from my city to the city where the hospital was. One left at 12:45 pm, and the other left six hours later. If I waited around to find out if they were releasing the baby or not, I would have to take the later bus and would be away from my other children all day long, from 8 am – 8 pm. It wasn’t certain that I’d be able to bring the baby home even if I did stay, and if I didn’t, I’d be back the next morning as usual.

    So after going back and forth in my mind about what to do, I told them I’d leave as usual and come back the next morning to get him. I know too well that when someone tells you something will be done by 12:30, it can be another two hours until it happens, and then they’ll tell you the office where something else needs to happen closed in the meantime, and you can waste hours and a lot of emotional energy waiting for something to happen.

    And that’s what I did. I knew the baby was in good hands and even though I really didn’t want to go back home without him after being geared up to take him home (especially knowing how disappointed the kids would be if I came home myself), I took my regular bus home. It was 2 pm when I got home, and five minutes after that dh got home from another appointment for another child in another city (:)), and told me a friend had called and offered to drive me to pick up the baby. I was exhausted by then and the thought of going back to this city and getting the baby really felt beyond my physical capacity.  And I wasn’t even sure the paperwork would be ready if I did.

    So dh called the hospital and they said the head doctor had authorized everything already (before I left I spoke to him and requested that as soon as the results come in, that he prepare the release paperwork so I wouldn’t be in the same situation the next morning when I came in). Dh has missed tons of work time between needing to be available for our child who was hospitalized for two weeks (two weeks before I gave birth), and then this baby being in the NICU for ten days. So he really couldn’t go to the hospital to pick up the baby, though usually he would do this knowing how wiped out I was.

    I decided even though I was so tired it would be really nice to bring the baby home that day, and easier to do it with a friend driving me than by bus the next day. I’m really glad we did it this way, because even driving directly there, it was a 3.5 hour process! Another good thing was that she had a car seat she brought along for me to borrow, and the NICU staff said they couldn’t release him until they saw the car seat! I had a baby wrap and was planning to wear him until we got to the parking lot where we were parked, because it’s so much easier than carrying a baby around in a heavy car seat. But they said that wasn’t allowed, which left me wondering if they would have released the baby if I had only had the baby wrap and no car seat (like that morning), since I was planning to take a bus?

    They gave me an extensive list of medical follow up care that will keep me busy the next two or three weeks – a visit to our pediatrician, a nephrologist, a hematologist, a pediatric cardiologist, need to get an ultrasound done, more bloodwork, a visit with the child development center – I know I’m forgetting stuff but I have it written down.  Some of these can be taken care of in our city but two of them will need to be at the hospital next week.  I was busy on the phone this morning trying to get the first of these appointments made, which was challenging since as a newborn he’s not yet registered at the clinic and they told me I wasn’t able to make appointments other than for the pediatrician.  Tomorrow after that visit I should be able to get the rest of the appointments scheduled.

    Admiring baby in car seat right after we got home

    The kids were so excited to see the baby! Most of the kids were waiting outside for me when I got home, and from the point we got into our home until late that evening, the baby wasn’t put down for even a second. He just was passed from person to person.  Even when he’s sleeping, someone is holding him.

    Sleeping but still being held
    So many siblings to admire him!

    “Oh my gosh, he’s SOOO cute!” – this is what I heard for hours, and then it started again as soon as he woke up again in the morning. It’s really nice how excited everyone is about the baby. And it’s so nice to be home!

    Avivah

  • Update on our baby

    I’m sorry I haven’t been posting; I know many of you have been concerned about what’s happening with our baby.  I’ve been going to the hospital to be with him every day and that takes almost six hours a day, which especially in the immediate postpartum stage takes a lot of energy.  So I’ve been too tired to blog.

    But I feel like I have to update you because I don’t want anyone to think that the absence of posting means things aren’t going well.  Actually, the baby is doing amazingly!  His white blood cell count is down to normal, his heart is functioning totally normally (no sign of the structural problems they expected to find), he’s off oxygen and breathing normally on his own, and he’s off a feeding tube.  Yesterday I was able to nurse him for the first time, and today the doctor said that he can eat as much and as often as he wants.

    And more cautiously good news is that the doctor said we should be able to bring him home tomorrow!  Assuming that he continues to do as well as he’s been doing until now, is the only caveat.  We were hoping at best that he’d be home for Shabbos, so this was beyond what we were hoping for.  The kids are very excited and hopefully when I call the hospital in the morning before I catch my bus, they’ll tell me that we still have a go-ahead for that!

    To all of you who kept us in your prayers, thank you very much – they obviously worked!

    Avivah

  • Taking steps to avoid postpartum depression

    >>I don’t want to be presumptuous nor hurtful, so please ignore me if I’m out of place, but…

    You did undergo a majorly negative emotional experience and also don’t have as much time to bond with your baby as usual, and I’m concerned about the potential of PPD creeping in. I am positive you know the best ways to abet it and I’m not here to tell you that, but with all that is going on, please watch out for yourself too…not just the health of your baby.<<

    Firstly, I appreciate the concern!

    I’m in no way an expert about postpartum depression – far from it.  But I’ll share my thoughts about this here, because it is something I’ve thought about for the last few weeks.  Why for the past weeks?  Because I’ve had a lot on my plate recently and I think these things can dribble over beyond the birth experience in how they affect you if you aren’t consciously dealing with them.

    As mothers we can’t just take care of everyone else.  At a certain point we’ll just collapse physically and/or emotionally if we can’t find space for ourselves.  This is something I was very consciously trying to attend to, to find space for me to take care of myself.  I was talking with a friend who shared with me her thoughts about how crucial fun is, especially for people like us who are so responsible that we consider checking off everything on our ‘to do’ list to be the  most fun thing about our day!  🙂

    Yesterday she sent me an email in which she followed up with our recent talk, and shared her criteria for fun: 1) it feeds your soul; b) it empowers you; and c) there isn’t a goal.  What’s fun for you might not be fun for someone else.   My husband plays tennis, guitar and draws – all of which are renewing for him but not one of those things would be fun for me.  If I sit in front of a waterfall by myself for an hour, that’s my ‘fun’ – not what you might think of when thinking of fun as it’s typically defined, but it definitely meets the three criteria.

    For me, it’s ‘fun’ to have time to myself.  That’s why my hospital vacation was so valuable for me at this time.  These last few days have been invaluable in processing the birth and finding a lot of inner peace.  It’s been very renewing to have time to myself and that’s why I haven’t answered the phone hardly at all and have told anyone who wanted to visit that I really would rather be left to myself for now.  It’s been great!  Even my husband wasn’t here after the first night, until he came to pick me up yesterday (before we knew I’d be allowed to stay another day).

    People sometimes tell me how positive I am, so this next point is one that I also try to be conscious of.  I think a person has to be very careful about being positive versus putting on a happy face for the world and being miserable inside.  You really have to be honest with yourself about who you are and what your limitations are.  There’s a lightness inside when you’re feeling positive.  When you’re putting on a happy face, it’s more like you’re weighted down by smiling because you know that you’re fooling everyone else but really inside you’re miserable.  I don’t feel I have to tell everyone around me how miserable I am but it’s not a value for me to pretend to be what I’m not.

    Physically, I’ve been loading up on B vitamins because that’s an important preventive aspect for PPD – I’ve been taking two heaping tablespoons of brewers yeast in my milk every morning leading up to the birth (don’t have it here in the hospital), in addition to herbs, rescue remedy (for the trauma), and other vitamins.

    As far as bonding with the baby, it’s been amazing being at the hospital with just him, and getting to sit and be with him for hours without interruption. There’s no pressure or expectation of how much I have to be with him or how I should interact with him – it’s my experience to have in the way that’s meaningful to me.   I can stand over his crib and talk or sing to him, or massage him, or give him a kiss – or none of those – and it’s all okay.  If I just sit next to him without touching him or talking to him, it’s okay. If I rest my head on the side of his crib and fall asleep holding his hand, it’s okay.  It’s been another renewing and relaxing aspect of being at the hospital – I’m here as his mother because I want to be, not because he’s screaming to be held or changed or fed and I have to do it.  I don’t have to do any of it; all of those things can be done by the NICU staff.  But they can’t be his mother and love him like I do.

    Last night I was with him when the nurse suddenly said to me, “Your baby loves you, do you know that?”  I looked up and asked her why she said that.  She pointed to the monitor and she said, “Look at how his breathing gets better when you’re here.”  I didn’t know what numbers on the monitor corresponded to what, so she showed me how his oxygenation level went all the way up to the maximum when I was with him.  So it looks like we’re bonding  pretty well even if I’m not nursing him.  🙂

    I’ve been thinking about how to manage the transition back to home.  After being gone for four days – and I’m hardly ever gone more than a few hours – I’m anticipating a lot of emotional intensity on the part of the littles, and just because the older kids are older doesn’t mean they don’t have some emotion to me not being around.  I’ve made the effort to physically rest earlier in the day so I’ll have energy to actively be with them, and also thought about some special ways I can be with them each one on one.

    This birth experience definitely had some strongly negative aspects to it, but I haven’t denied my feelings to myself about it, or suppressed it or not felt the sadness of the difference between what I wanted and what I got.  I’ve been resolving it inside myself.

    And you know what?  Sometimes you get powerful help in putting things in perspective.  Yesterday the baby in the incubator right next to my baby died – he was born the day before my baby.  The day before another baby died just an hour after she was born.  I feel like a very lucky woman to have my gorgeous baby boy.  And that’s not just putting on a happy face.

    Avivah

  • My hospital vacation

    A few weeks ago I saw a notice that a three day women’s retreat was being generously subsidized and though I usually look at these retreats as something nice but not for me at this stage, this time I really, really wanted to go.  I was feeling a lot of pressure to take care of many things (all of which were very important), and I was emotionally salivating at the thought of some time to myself away from everyone and everything.

    But when I called about the subsidized price, it was only a discount of 100 shekels from the total price of 750, which wasn’t really a compelling discount for me.  So I told myself it obviously wasn’t meant to be, and Hashem would send me what I was meant to have when I was meant to have it.

    Today I was thinking how amazing it is that I didn’t have to wait long for my paid for vacation getaway, right here in the hospital!  This is just one more example of how sometimes things that look bad really can turn out beautifully!

    To recap, I had a baby at the beginning of this week and contrary to my plan to leave the hospital as soon as possible, my baby needed to be in the NICU.  And that meant that I needed to be in the hospital with him.

    When I was first taken to my room, my initial impression was that it was dreary and depressing.  There was no lock on the bathroom door, the room was super dumpy, and I couldn’t get anything to eat since I arrived at the hospital half hour after dinner was served.  I was separated from my two roommates by a thin curtain which is pretty normal here but both of them were very talkative with visitors and cell phones.  One roommate insisted she needed all of the overhead fluorescents on late in the evening (after 11 pm) because the partial lighting to her section of the room wasn’t enough for her to see her baby.  During the part of the night when people usually sleep, I was repeatedly woken from my partial restless sleep by non stop sounds of crying babies being wheeled down the hallways and in and out of my room.  I finally feel into a deep sleep out of sheer exhaustion when at 2:30 am, a nurse walked in, turned on all the overhead lights, and loudly asked, “Which one of you is Avivah?”  When I told her I was, she told me I needed bloodwork done.  The reason I know it was 2:30 despite not having a watch is that I blearily said, “Bloodwork now?  Isn’t it something like 3 in the  morning?”  And she briskly responded, “Of course right now!  It’s 2:30.”  There’s no time like the present, right?  🙂

    When my baby was transferred from the regular nursery to the NICU, he was on a different floor than I was which meant a long walk for me.  And when preparing for sleep and then again in the morning, I had nothing I needed from home like pajamas, a change of clothes, a toothbrush or hairbrush because of having to rush out with the ambulance.   Fortunately, that was just the first night!

    Then I was offered the chance to be transferred to the high risk maternity ward, which was on the same floor as the NICU, and I jumped at the opportunity.  Nothing against women who just had babies, but hearing babies screaming right next to me all night long just isn’t refreshing.  When I got to my new room, I was pleasantly surprised to see everything about it was much newer and nicer, the bathroom had a lock (did I mention there are times that I appreciate my privacy? :)), and it was much more convenient to visit my baby in the NICU.

    Another bonus was when I found out that I had wireless internet service in my new room, which I didn’t have in the first room.  This was great because I could be in touch with people to share our good news, not to mention post here!

    Though I’m not exactly sitting around all day drinking martinis or lolling on the beach, I do have a chance to spend the day with my own thoughts and without being responsible for anyone but myself and the baby.  My day is full – filled with being in the NICU with the baby and pumping for him, speaking with doctors and nurses and eating meals (I haven’t had a chance for a nap yet) – but it’s not a stressful kind of full.  It’s really different than having a newborn who is nursing and being held all day long.

    I can take a shower when I want, and if I pump an hour later or earlier, it doesn’t really matter.  I don’t love being away from my other children but they’re all doing great, working together to get things done and people have been very generous with their offers of help.  The food here is decent and meals are served on time with no effort needed on my part except to go get it from the dining room.  The nurses have all been pleasant and only come around a couple of times a day to check temps and blood pressure.  I’ve figured out where everything I need is without having to ask them to get it for me, which I appreciate because it takes so much longer to get something when you have to ask someone and then wait for them to bring it (I know since one morning I asked for my breakfast tray to be brought to me since I was asleep when it was being served and didn’t want to rush to get dressed before it was cleared away (I don’t walk around in a robe in a hospital, I have to be fully dressed just like anywhere else), and it took them an hour to bring it- and the dining room is a two minute walk away!).  So I’m pretty much set.

    Today the doctor was filling out my release paperwork, and kind of rhetorically asked, “Right you’re supposed to be released today?”  So I answered kind of jokingly, “Yes, but if you want to let me stay here another day I’ll be very happy to stay!”  She looked at me and asked if I meant it, and I told her I did, that it would help me a lot since my baby was in the NICU and wasn’t coming home with me.  So she said she’d request authorization and let me know.

    Dh was already here to pick me up when we had this interchange (and had unfortunately spent a lot of money renting a vehicle since he didn’t want me to have to go home using public transportation), but she came back in a short time later to tell me the insurance company had approved the request, and that I could be here for another day!  This was such a nice surprise and a really big help to me! Until now I’ve been able to pump enough for the baby to almost keep up with his feeding schedule, but not to get ahead.  By being here a bit longer, I’ll hopefully be able to prepare feedings for Shabbos and Sunday morning, and I’m going to try to take  advantage of this last day and actively plan a nap so that I’ll get back home refreshed and ready to fully be available emotionally for my other kids.

    I feel really fortunate to have been able to have this bit of a breather.  I wrote in a recent post about the stress I felt from the chaos of the entire birth and post-birth process, and this was a really valuable chance for me to recharge before going back home to be with everyone.

    Avivah

  • Moving from shellshocked to grateful

    Shellshocked – that’s how I was feeling after this birth.  I felt disconnected from almost every part of the process.  Here’s what I wrote to process some of my feelings while waiting to see our baby:

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    “I feel powerless at how so many people were suddenly involved in our private moment and there was no time to savor the birth. I didn’t have any time to process any part of the birth or to have quiet moments to share with my husband or our children.

    I feel upset to have been treated like I was controlling when I wanted to at least have some say in things that were important to me after the birth, not even to be able to go to the bathroom or shower without someone trying to walk in.

    I feel frustrated to get to the hospital and not feel even minimally equipped with what I would have felt was important to have on hand.

    I feel cheated of a certain kind of experience, of serenity or at least privacy.

    I feel so upset that my baby almost stopped belonging to me after I got to the hospital; it feels so wrong to be apart from him for such a long time and to hardly be able to catch more than a glance of him from the time he was born until now.

    I really want to go home and be in my own bed, to be with people who I love around me.

    I want to cry for all that I missed in this birth, and I feel guilty for feeling so sad and empty when I should be so happy. It’s just all so different than what I wanted.”

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    At about 11 pm, the nurse from the nursery asked me to come and try to nurse the baby again since he had woken up.  (I had to give him back to be put on a warmer after the first time I tried to nurse him.)  After I finished holding him (since he was too sleepy to nurse), we were asked to come to the nursery to speak to the doctor.

    This was the point when I was able to change from sad/mad to glad.  I had made a list of things I was grateful for before this but I didn’t make the internal shift until this conversation.  This was the first time a staff member told me what was happening, and it changed my entire view of the situation.

    The baby had been having trouble breathing since he arrived, and had to repeatedly be stabilized.  In addition to this, his heartrate was fluctuating significantly and had to be monitored.  He wasn’t maintaining his body temperature.  The blood test showed an extremely high white blood cell count.  He was jaundiced and was too weak to physically nurse.  And the doctor told us at this point that they wanted to move him to the newborn intensive care unit immediately.

    It was when I looked in the eyes of the doctor that I saw how compassionate she was, that she had been trying not to overwhelm us by telling us all these things at once.  This is why they kept pushing off letting me hold the baby, and why they insisted I had to stay close by the nursery when I held him.

    And when I understood this, I suddenly was able to see why everything had to go the way it did so that our baby would be in a place where he could be best taken care of.  If I had had a good experience at the first hospital, he would have been born there, but this hospital has a much better NICU.  If he had pinked up even a couple minutes sooner, we wouldn’t have called the ambulance and wouldn’t have been transported immediately, and we wouldn’t have noticed signs of these issues as they arose the way a professional staff did.  So all of that chaos and seeming unpleasantness of the birth was really there for our good – which intellectually I always know is the case, but it’s so amazing when you have the opportunity to see it clearly.

    And now I feel the entire birth was really the way it was meant to be; though that doesn’t erase the unpleasantness, it makes it much easier to accept.

    The baby is currently in the NICU, and my plans to leave as soon as possible have changed to hoping to stay here as long as possible so I can be with him.  Right now no one knows how long he’ll need to be here; it depends on his response.  Today I was able to pump my milk and that’s what he’s getting now through a tube, which I’m happy about (have to go prepare more feedings after I post this – I put it in labeled syringes of the current amount he’s supposed to eat per feeding).  I spent a long time today just sitting next to him and keeping my hand on him and talking to him so he knows I’m there.

    They’re running a lot of tests on him to see what is wrong, and for now the tests are coming back looking good.  They thought he might have severe heart problems and I was mentally imagining complicated surgeries, but now it looks like his heart is just enlarged.  His breathing is getting better, and he’s under the   phototherapy lights to address the jaundice.  We have to wait out the white blood cell situation (which has already shown improvement), and wait for confirmation on a couple more tests.

    He looks a little like he’s in a spaceship, with so many wires coming out of him and these cute little sunglasses looking band over his eyes to protect them from the bright lights!  He’s as cute as can be, and we’re looking forward to being able to bring him home soon.

    If you’re able to say a prayer for him, I would very much appreciate it.  He hasn’t yet been named so for now, you can pray for Rach hanolad (the newborn baby) ben (son of) Avivah Michaela.  Thank you!

    Avivah