A Glimpse into Our Future

Earlier in the pregnancy I thought about what the birth of our second child might be like. I envisioned my wife and myself holding our new baby in our arms, and taking photos of our daughter, thrilled to be a big sister, doing the same. But reality has set in that this won’t happen. Quite possibly, we’ll only have a few moments after birth before the baby ends up being rushed to the NICU and hooked up to all sorts of tubes and monitors. Due to current restrictions, our daughter won’t get to see the baby in the NICU at all. And it’s quite possible that we may be faced with a lengthy stay there.

Last week we arranged for a tour of the NICU to see what our future might be like. Most babies are there after an emergency delivery that the parents don’t see coming, but at least with our situation, we actually have time to mentally prepare for it. And because my wife will likely be recovering from a c-section after birth, she won’t be able to visit or see the baby for a few days after birth, so I’m glad she got to see where our baby will be.

The NICU does seem like a different world, a restricted area, tucked away from the rest of the hospital. A couple of other parents gave us consent to see their babies, which included a set of triplets born at the same gestational age (28 weeks and 5 days) that we were at that time of the tour. I’ve seen photos and footage of preemies, but had never seen one before in person. Our first daughter was small at 5lbs. and 14oz. at birth, but these babies were barely over 2lbs. They were all hooked up to several machines to keep them alive, and they all seemed so fragile. Seeing them was an upsetting and amazing experience at the same time.

The NICU was divided into several bays, and felt like it was part nursery, part laboratory. We saw a few other NICU parents, and the joy of having a baby seems to have been replaced by exhaustion and constant concern. But the staff there was excellent and went out of their way to make us feel welcome. They gave us a lot of information, which we found a little overwhelming, but they told us they didn’t expect us to remember everything.

After our scare last week, we know that we could end up becoming NICU parents any day. No parent ever hopes his or her baby will end up in the NICU, but at least we feel a little more prepared after having seen what’s in store for us.

29 Weeks and counting

Despite a close call on Wednesday, we made it through another week. I've been here for over 5 weeks now. I'm happy and relieved that my OB is back in town, too. We had another scan of the baby this weekend--my fluid levels have dropped slightly, but as long as her heart rate stays stable, we won't make any changes in our plans. And she's still growing--she's up to about 2lb, 5oz.

Last night my sister kindly watched Bubble Girl for the night, so while she was having a sleepover with her cousin, Bubble Daddy was able to spend a little time with me for a change. It was the first time he'd been able to stay here overnight since the weekend I was admitted. One of the nurses mentioned to me the other day that she remembers that weekend, and how we both looked a bit shell-shocked, which is pretty much how we felt. It was the closest thing to a date night as we've been able to have since I got here. We didn't do anything special, but we took the wheelchair down to the plaza level, and actually sat next to each other on a bench for about 15 minutes, ordered take-out, so I got to eat some decent food, and we just hung out and chatted. I've missed simply having time together--not doing anything special, but being with each other.

We had some good news about 1st grade for Bubble Girl. School starts at the end of the month and we didn't know who her teacher was going to be. We were concerned that her teacher would be someone who could be sort of a nurturing presence as Bubble Girl continues to cope with the separation from me. Well, due to enrollment reductions in the kindergarten class this fall, her kindergarten teacher is going to teach 1st grade, and she's taking her whole kindergarten class with her. So, Bubble Girl will have her same wonderful teacher from last year, and still be with all her friends, including her "boyfriend."

Now we're counting to 30 weeks . . .

It's Better When Things Are Boring

Today started off more interesting than I'd like. My 8am NST (baby's heart scanning) showed an increased number of decelerations (dips in heart rate), which was troubling, raising questions as to whether the baby was better off staying in my belly, or being delivered and cared for in the NICU. At this point, we'd probably be looking at about 10 weeks of NICU time. As it turned out, later in the day, the NST returned to normal and there are currently no plans for delivery.

I didn't actually find out until after the fact that there was talk of possibly preparing me for delivery today, which I find a little troubling. I don't like to be kept in the dark. I'll be glad to have my OB back from vacation tomorrow; I think he and I have a very clear understanding about how I would prefer to have all the information--even if it's unpleasant--than to be left out of the discussion.

Here's to hoping that my next post will be me griping about the tedium of hospital rest, rather than anything exciting like this.

Hibernation Mode

As happy as I am that we made it to the 28 week mark, I found that the euphoria only carried me so far, and by Monday morning I had resorted to my usual coping activities: reading frivolous books and watching videos. Oh, and napping.

I can't help but wonder what it is exactly that I need to escape from. As much as you'd think I'd be getting cabin fever from spending over a month in this room, I don't really feel the walls closing in on me. I still like the glimpse of the Hollywood Hills outside my window.

I enjoy my daily 15 minute wheelchair excursions. Although I had to forego it yesterday due to Obama's visit to LA last night; his motorcade drove right through Beverly Hills during evening rush hour. So, it took Bubble Daddy and Bubble Girl nearly 2 hours to get here (usually takes :20-30). Many of the nurses couldn't get in on time for the evening shift, so it was tough to track down someone to help with the wheelchair before it got to be too late. But I didn't find skipping a day all that upsetting.

I do, as you may have heard, get annoyed by the food. The constant interruptions are tedious. I get poked by needles about 6 times a day. Etc. And there are any number of other seemingly trivial things that wear me down throughout the course of the day.

So, I was trying to pinpoint what I'm having the most trouble coping with, and I've come up with two things. First the isolation, coupled with the constant interaction with hospital staff. While I have gotten to know many of the people here, I'm still constantly meeting new people. I've been here 33 days and I've had 34 different nurses care for me, and my two nurses today were people I'd never met. One of the reasons I like to stay up late here is that it gets quieter and I get a few hours in a row without interruptions, so I can relax a little bit. But the quiet can also be unsettling, especially if something comes up that is upsetting. For example, a few nights ago at 2am, the baby's heart rate became erratic, and they had to keep me on the monitors all night long. I didn't want to call Bubble Daddy and wake him for something that would make him worry, deprive him of much needed sleep, and quite probably not really mean that I was suddenly going to have to deliver. I just had to wait til morning to talk to the Dr. about if we should make any changes in my care, etc. And my Dr. is on vacation, so it would depend on the covering Dr., whom I didn't know as well. As it turned out, the baby's heart rate was stable for the subsequent 7-8 hours, and I went back to my normal routine.

The other thing that's been difficult to accept is how utterly useless I feel. The activities, responsibilities, and routines which seemed to shape not only my daily life, but my identity have all had to be put aside. While I worry about the exhaustion Bubble Daddy is coping with now that he has to do all the parenting tasks, I find myself grieving the loss of my share of that role while I'm stuck here. Bubble Daddy and I have so little time together, just to sit and share meals, conversation, watching baseball. And my ability to concentrate on writing my dissertation is erratic, at best.

So, now I understand why I keep turning to my little escapes. And most times they work.

28 Weeks!

We had a lot of scares along the way, but we made it to the 28-week mark! It’s a big milestone as the odds of the baby surviving and doing well are significantly better now. Looking back on it, we’re very lucky to have made it this far. About 50% of women who have PPROM deliver within one week. Less than 10% make it four weeks. That said, as one doctor told us, 28 weeks is still not good, and we still hope to delay birth as long as possible.

To “celebrate” we took a family portrait in the plaza during my wife’s 15-minute wheel chair excursion. Until recently, we never thought we’d get another photo of my wife standing up during the pregnancy.

We remember the sense of anticipation and excitement before our daughter was born. Once we were officially full term, and as we got closer to the due date, I remember thinking often “it could be any day now.” But this time, we’ve been living in fear with “it could be any day now” for a whole month. And if we’re lucky, we’ll have another month and a half of that.

Kids Say the Darndest Things

Whatever happens, we are lucky to have our wonderful six-year-old daughter. But at the same time, trying to guide her through this situation has been one of the most difficult things we’ve had to deal with.

The biggest issue for our daughter is not having Mommy at home, and not knowing how long she’ll be in the hospital. I tried telling her that it was like Mommy was on a long business trip, but unlike other business trips, we could still visit her. But Mommy’s never been on a business trip longer than five days. A therapist advised us to pick a date that would represent the longest scenario we’ve been given, and tell her that Mommy will be home then. If it ends up being shorter, she’ll be happy to have Mommy home sooner. At first we were told that making it to 31 weeks was the best we could hope for, but we’ve since been told that 34 weeks is possible if we’re lucky. So we’ve noted that date (September 26th) to our daughter, and put up a calendar at the hospital. Every evening our daughter has been drawing a heart on the corresponding day. But all those blank boxes on the calendar are daunting, and I know it’s hard for her to comprehend how long it will really be. Never has time passed so slowly for all of us.

I was hoping that over time things would get easier for her, but I think it’s actually gotten tougher in some ways. Each day seems to be taking a toll on her. At various times, sometimes without warning, my daughter will start crying and say that she misses Mommy. Then on the way to camp one day she started to cry but held herself back. She said she was embarrassed and didn’t want her friends to see her that way. I had to explain to her that it was okay to cry and let things out.

At times it’s been heartbreaking to hear the questions our daughter has asked, and the words she has used to articulate her feelings.

She was really excited about becoming a big sister, but when she realized that things weren't going well, she asked, “If the baby dies, can you make another one?” I wasn’t prepared for her to ask that. Truthfully, one way or another, this is it for us, which makes this whole ordeal harder. But I didn’t want to answer her directly, so I told her that we don’t want to think about that, and we just want the best for this baby.

During the first week, she asked to speak to the baby, and went up to Mommy’s tummy and said quietly, “I love you… I hope you survive and come out alive.” There were tears all the way around.

Recently on our way home from the hospital she said “It doesn’t feel like we’re a family anymore without Mommy at home.” I reassured her that we are still very much a family, and that we are becoming a stronger family because of this.

One day she told Mommy “I miss seeing you wear pretty dresses,” and added “the hospital dresses are ugly.” Fortunately, we’ve since been able to bring my wife some maternity clothes that she could wear.

She also told me that having Mommy in the hospital is tougher for her because I’m a big person, and she’s just a kid.

As time has gone by, my daughter has become more and more angry at the situation. She has frequently told me that the “world is stupid” and not being fair to our family.

Last week while driving home she told me that this was all my fault and Mommy’s fault for making the baby. She said that she used to want to be a big sister, but not any more. I knew she didn't mean it, and she later admitted she was just saying that because she’s upset. Still, it’s hard to hear her say things like that.

She has also been acting out in a lot of ways. She’s often extremely irritable and has been particularly defiant. Sometimes I feel like she’s purposely picking a fight with me, saying no to everything I ask her to do. She’ll often throw a tantrum and will yell “I hate this day!” and “This is the worst day in my life!” She’s also started throwing and hitting things in the house. It’s a tough balancing act between letting her blow off some steam, and punishing her.

Sadly, my daughter has also had a serious bout with self-inflicted constipation. My wife and I felt awful because we knew that the stress of the situation was triggering this behavior. My daughter would feel the urge to go, and would stand by the toilet, but would refuse to sit. She would say that it hurt too much, and she’d clench herself and would forcefully hold everything in. We tried just about everything to help her go, but nothing worked. At one point I told her that she didn’t have to go if she didn't want to, but she refused to leave the bathroom. On multiple occasions I stood by her for over an hour, trying to reason with her and pleading with her to go, and telling her that I’d do whatever she wanted. But it was as if she was frozen. When she hadn’t had a BM in about a week, I became concerned that she was going to make herself sick. I took her to a doctor and she finally went, but then she started to have accidents, and then a relapse. After a second visit to the doctor and some medicine, we think and hope that she’s finally turned the corner.

It’s hard to imagine what other issues might arise and how we’ll cope with them. I just hope that our daughter comes through this without any long-term emotional scars. I love her so much and it hurts to see her going through all of this.

Adjusting to the New Routine

The first several days with my wife stuck on hospital bed rest was a huge adjustment period for all of us. I spent a lot of time running around gathering things that would make my wife’s life a little easier in her new “home.” And I tried to figure out what the best daily routine would be for my daughter and me. At first I wasn’t sure how often we would visit, but I promised to my daughter that if she wants to see Mommy, we’d always make every effort to do so. And so far, after 3-1/2 weeks, we’ve managed to visit every single day. It’s been exhausting to keep this up, but it’s now part of our daily routine, and it's the highlight of our day.

My daughter is currently in summer camp during the week, which helps occupy her during the day. I’ve been picking her up early from camp and most days we head straight home. Before heading to the hospital to visit Mommy, she takes a bath or shower and changes into nicer clothes. I've found that it's generally easer to eat dinner at home, but sometimes we end up eating at the hospital. The hospital cafeteria has limited appeal for our daughter, and though there are many takeout and delivery options, it sometimes ends up being hard to time things right.

We usually stay an hour or two before visiting hours are over. After 3-weeks of being cooped up in the same room, my wife was granted 15-minute wheel chair privileges, which has become a part of our routine. We usually have just enough time to go down the plaza level and spend a few minutes outside, and my daughter loves being in charge of pushing the wheel chair.

Leaving has been really hard, and often my daughter will have a tearful meltdown. I quickly figured out that it was a good idea to brush my daughter’s teeth and change her into her nightgown at the hospital. By the time we get back home she’s usually worn out and ready to crawl into bed. My daughter calls Mommy for a night-night song, and frequently has a hard time hanging up.

On the weekends I usually have a few outings with my daughter, which keeps her busy. We are also able to spend a little more time at the hospital, and my daughter enjoys watching movies snuggled up with Mommy in her bed. A couple of days my daughter has missed camp because she’s had a doctor’s appointment, and we ended up visiting Mommy in the afternoon on those days. I’ve found that it’s much easier to visit earlier in the day because we’re not as tired.

We’re lucky to have some wonderful neighbors who have volunteered to watch my daughter from time to time and have even made dinner for us. We have some neighbors with kids our daughter’s age that she loves playing with, and it helps distract her from the fact that Mommy is not at home.

I have also spent a few afternoons at the hospital my wife while my daughter is in summer camp. It’s the only time we have together now. Sadly, we were supposed to go out of town to celebrate our anniversary the day after my wife’s water broke. It was also supposed to be our last getaway as a couple before the new baby’s arrival. It’s easy to feel like we were robbed of so many things, but we try to remain thankful of what we still have and make the best of the current situation.

The hospital has become a 2nd home for us. My daughter knows the ins and outs of where everything is and feels quite comfortable there. But it’s strange to be there day in and day out. We’ve seen countless other families arrive and leave with a new baby. We often have to walk past a parade of happy people carrying flowers and balloons to their loved ones to celebrate their new arrival. At least we had that experience with our first one. We never imagined that this time around would be so different.

So while each day has it’s own unique feel, we’ve managed to find a basic routine that works for us. It’s funny how something can become “normal” so quickly, when in actuality it’s anything but normal.

Recalling the Beginning: Becoming the “Bubble Daddy”

On Friday, July 16, 2010 our lives were unexpectedly turned upside down. My wife was admitted to the hospital when her water broke prematurely 23-1/2 weeks (about 5 months) into her pregnancy. It’s a rare occurrence called PPROM or “Preterm Premature Rupture of Membranes.” The literal bubble around our baby was permanently compromised. My wife had no previous symptoms that indicated she was a candidate for PPROM, and our OB told us that we’d probably never know what caused it.

We were informed us that the goal was to delay the birth of the baby for as long as possible. However, several things, all out our control, could arise without much notice that would necessitate birth by emergency c-section. We were given a laundry list of possible scenarios that we could encounter, many of them horrifying. In most cases, women who have PPROM give birth within a few days, and most babies born at 23-1/2 weeks do not survive, and of those that do, many have serious long-term problems. It was quite a shock to realize what we were up against.

Aside from following our doctor’s orders, there’s really nothing we could do but hope for the best. My wife was placed on hospital bed rest for the remainder of the pregnancy, however long that would be. The best-case scenario we were given was making it to 31 weeks. But even that would be 6 weeks preterm, and we were faced with the reality that the baby would likely spend a long time in the NICU (Neonatal Intensive Care Unit.)

We were left to figure out how we were going to get through this as a family. While my wife was suddenly on bed rest, possibly long term, I suddenly became like a single parent. We are grateful to have a wonderful six-year-old daughter, and she was really looking forward to being a big sister. Days before this happened she felt the baby kick for the first time. And she would frequently talk or sing to her future sibling in my wife’s belly. We knew that explaining to her what was happening was going to be tricky.

Our daughter was scheduled to be at a sleepover with her cousins that weekend. So we arranged for the sleepover to begin a day early, which gave my wife and me a couple of days to ourselves before we had to deal with our daughter. In general, our daughter hates when Mommy or Daddy is away, even if it’s just for one evening, so we were really worried how she’d react to Mommy not being able to come home. Our OB advised us to tell our daughter that Mommy will be fine, but needs to stay in the hospital because it’s the best thing for the baby. And so that’s what I told her when I picked her up from her sleepover, and we immediately went to visit my wife in the hospital. She seemed to be fine at first, but when it dawned on her what was going on she broke down. She kept asking why Mommy couldn’t come home, and I kept repeating what our OB had told us to tell her. She asked if she could stay in the hospital with Mommy, but that wasn’t practical and was against hospital rules. I repeated that Mommy needed to stay in the hospital because it’s the best thing for the baby. Finally she said tearfully, “Otherwise the baby will die?” It broke my heart to hear her say that. I didn’t want to lie to her. After a long pause, I told her we hope that doesn’t happen. She was old enough to figure some things out, but not old enough to know how to cope. Then again, I’m not sure I was coping well with things.

I went home with my daughter that evening, not sure of many things, but sure that this was going to be by far the toughest thing our family had ever faced.

27 Weeks and Counting

It's hard to believe that I've been here at Cedars for more than 3 weeks now. The time goes so slowly. We're so anxious to get to at least 28 weeks (although now I'm also thinking abut getting to at least 28 1/2 weeks, because my OB is on vacation and that's when he gets back). Every day between now and then seems like such an obstacle. But even getting this far is an achievement and improves our baby's chances dramatically. Even as the days seem to drag, it doesn't feel like I've been here this long. The days run into each other, making it difficult to have a normal sense of time passing. I look at the calendar and I'm amazed at home much time I've lost (and how far behind I continue to fall on my schedule to work on my dissertation!).

A Day in the Life of the Bubble

Although my days are sometimes erratic, here's basically the way my schedule goes (times are approximate):

Get up at 7:30am to get ready for NST (hooking me up for at least :20 minutes to monitors for the baby's heart rate and my contractions), blood glucose reading.
8:00am visit from my OB (except that he's on vacation in Egypt til 8/18, so the covering dr. just stops by at random times during the day)
9:00am eat breakfast
9:15 limited in-bed exercise (helps to control my blood glucose)
10:00am blood glucose reading, shower
10:30am morning snack
11:30am blood thinning drug injection to prevent blood clots while I'm sitting in bed day after day (there are bruises dotting the backs of my arms--looks much worse than it feels).
12:30pm lunch
1:00pm limited in-bed exercise
1:30pm blood glucose reading
2:00pm NST
3:00pm afternoon snack
try to nap to catch up on a little more sleep (4-5 a night is NOT enough for a pregnant woman!)
6:00pm dinner
6:30pm limited in-bed exercise
7:00pm blood glucose reading
Bubble Daddy & Bubble Girl come by for a visit (school-day schedule), wheelchair excursion to the outside plaza for :15
8:00pm NST
9:00pm end of visiting hours, call from Mom
9:30pm bedtime phone call from Bubble Girl, sing a lullaby
10:30pm call from Bubble Daddy to debrief on the day
11:30pm blood thinning drug injection
2:00am NST
3:00am sleep til 7:30!

Interspersed throughout the day are visits from various people: nurses needing to get regular vitals readings, housekeeping, foodservice dropping off tomorrow's menu and all the little meals I have to eat to keep my blood sugar stable, social workers, dietitians, etc. checking on how I'm doing. Every week or so I have an ultrasound and a consultation with a neonatologist. It's odd to live somewhere that people you don't know can just keep walking in all day. Thankfully I have a private room, so I don't have to cope with the interruptions related to a roomate, but I still have a tough time being able to focus on writing, or get a decent nap. So, even though I'm sitting here in bed all day long, I'm not getting much in the way of rest or productivity.

Becoming Obsessed about Food

This pregnancy has certainly put a hamper on any foodie tendencies I've been developing. Some of you may remember my enthusiasm for the burgeoning food truck scene in LA. And living in Culver City, where there are so many interesting restaurants opening all the time, and several we just haven't had a chance to try out, certainly has tempted me into wanting to eat out more lately. I remember going out a lot when I was pregnant with Bubble Girl, knowing it would be harder once she was born. But with my morning sickness lasting well into my 20th week of pregnancy, followed by a short respite, before entering the world of hospital dining cuisine in my 23rd week, I've had little opportunity to indulge my palate.

And then a few days ago I found out that I have gestational diabetes. I'm learning how an already unpleasant hospital menu can be made even less unappealing. I tell you, between the morning sickness and the GD, I may pull off a pregnancy miracle--gaining no weight while watching my belly grow larger and larger. The bigger danger will be gaining weight after I finally get to go home and eat some normal food again!

Why a Blog?

When I realized I was going to be here for a while, cut off from the outside world, I was grateful to find out that I would have access to the Internet. I may not know what is going on outside the door of this room, but I can still keep in touch with the world outside.

I also knew that as we began to notify friends and family of our circumstances, there would be many people who would want to know how things are going. I didn't want to use a public forum, like Facebook. I also didn't want to worry that I might not have the energy to answer everyone's phone calls and e-mails in a timely manner. So, I thought the best solution was a private blog, where people can check in for updates, if they want. I can also use this as an outlet to write about my experiences.

In Which I Find Myself Entering the Bubble

After experiencing what felt like my water breaking in the 23rd week of my pregnancy, I went to the hospital. Sure enough, that is precisely what had happened. Little did I know when I walked into this little hospital room, that I would not be leaving for a long time. I am on complete hospital rest until the baby is born. The next few weeks are vitally important. The outcome for babies born before 28 weeks is not optimistic. The statistics improve dramatically by 28 weeks. So, the plan at this point is for me to stay here in hopes that we can keep the baby growing inside my belly for as long as possible. The keys are to maintain the current fluid levels, avoid infection, watch for indications of labor, and watch the baby for any other signs of distress.

What this means: I started with complete bed rest here at the hospital. I took antibiotics to prevent infection, steroids to assist the baby's pulmonary development, and blood thinner to prevent blood clots while I sit here all day long. I am hooked up to a monitor every few hours to track the baby's heart and any small contractions that I might not be able to feel. We are monitoring how much amniotic fluid I am losing each day with hopes that it is only a small amount, comparable to what my body regenerates only a daily basis. We will also be having regular ultrasounds to check the fluid levels and the baby's weight growth.

As long as we can maintain these stable conditions: no fever or other signs of infection, no contractions, no major loss of fluid, we are making progress. I am trying to focus less on getting to 28 weeks, and find encouragement from each day that passes.