Strange Anniversary

July 16th will forever be a strange anniversary for us. One year ago, my wife's water broke prematurely. We were devastated and I thought for sure we were going to lose our baby. The next few days were an absolute hell as my wife and I coped with the frightening uncertainties of our situation. But somehow we survived. We survived 7 weeks of hospital bed rest, over a month in the NICU, three months in a harness for hip dysplasia, a nebulizer for respiratory issues, and a therapist for bubble baby's sister.

Today, at 10-1/2 months old, bubble baby is healthy and thriving. She is steadily catching up with her growth and development. She is crawling and cruising, she babbles a lot, and she clearly seems engaged with the world around her. What a difference a year makes!

Just when things were starting to feel normal around here...

Bubble Baby had an ultrasound on her hips on Wednesday. On Thursday we were informed that there was an issue with the ultrasound and a follow up appointment was hastily scheduled for today (Friday) at an orthopedic center. It turns out that she has something called hip dysplasia. Her hip is in the right place, but it dislocates partially when stressed. If not corrected, it could lead to a lot of hip pain later in life, and arthritis. This fairly uncommon (about 0.4% of babies have this) and was likely caused because she was in breech position (legs down instead of head down) when she was born. She was in breech position most likely because of my wife's rupture. (The less amniotic fluid there is, the more likely that the baby will be in breech position.)

So, they are going to try to correct it by having her wear a special harness for 3 months. She will need to wear it full-time for the next six weeks, and if all progresses well, they will begin to wean her off of it after that. It's going to take a little while to get used to dealing with the harness since we cannot remove it. At the very least, diaper changes will be a lot more difficult. And unfortunately, Bubble Baby does not seem to be comfortable in it and has been extra fussy since it was put on. Hopefully she'll get used to it. We will have a follow up appointment in 2 weeks to check on her progress.

On another note, Bubble Baby had a follow up eye exam on Wednesday. Since she was on oxygen for the first 8 days of her life, she's at greater risk for developing vision problems and blindness. But after checking her out, the eye doctor says that her eyes look excellent. She will probably need glasses when she's older, but that's mainly because of the genes she inherited from us. She does have a wandering eye, meaning sometimes one eye will follow an object but not the other. We were told that this is a normal preemie thing that should go away. If not, we'll have a follow up appointment later to deal with it.

Family Portrait

We finally took a photo of all four of us together!

Sunday was another strange day to pass on the calendar. Had there been no complications to our pregnancy, Bubble Baby would have reached 37 weeks gestation, and would have been considered full-term.

We took Bubble Baby to her second pediatrician's appointment this morning and she is now up to 5lbs., 15oz., which is actually 1oz. more than our six-year-old was when she was born.

The Bubble Baby Comes Home

After an up-and-down week, the Bubble Baby was finally discharged from the NICU, and finally came home! Before the blood transfusion we were told that they probably needed to observe Bubble Baby until at least Sunday. But everything went so went, that she was actually discharged Saturday, which took us a little by surprise. As a preemie, she will still have many challenges ahead of her, and will have special appointments to monitor her development, but we're thrilled that she's made it this far.

It's amazing to us to look back and see how far we've come. I had gone to the hospital 86 straight days -- 49 days of hospital bed rest for my wife, and 38 days in the NICU for Bubble Baby (the last day of bed rest and the first day in the NICU were the same day.) When my wife was first admitted to the hospital, Bubble Baby was only at 23-1/2 weeks gestation, and given little chance to survive. She gave birth at 30-1/2 weeks, and we nearly lost Bubble Baby on her birthday due to a prolapsed umbilical cord. Bubble Baby couldn't breathe on her own for the first 8 days of her life, and had bouts with jaundice, feeding issues, and needed a blood transfusion. But she made it through all of it. She grew from 3lbs. 2oz. to 4lbs. 13oz. in the NICU, gaining more than half of her birth weight. And she grew from 15-3/4 inches to 17 inches in length.

With Bubble Baby finally at home, it was a great moment to see our six-year-old get to meet her little sister in person for the first time! At one point, she let Bubble Baby hold her finger. After a while we told her that she could release her hand if she wanted, but she refused, and said she wanted to stay by her side.

On Monday we took Bubble Baby to her first pediatrician appointment. She is growing fast and is now up to 5lbs., 2oz. and is 17-1/2 inches long.

Flesh and Blood

It turns out that Bubble Baby does indeed need a blood transfusion. And I am a match for her, so they are using my blood. Hopefully this will get her back on track.

She continues to eat well and is up to 4lbs., 12oz., and has grown to 17 inches long.

The Roller Coaster Continues

After all we've been through I guess it's fitting that we're having a little more drama.

When Bubble Baby was born we were told to expect her to be in the NICU until around her original due date (Nov. 7th.) But she had been doing so well that we were told that she might come home a little earlier, perhaps in mid-October. Then we started getting hints that she'd go home by the end of this week. And on Sunday we were told that if all went well, she'd be discharged on Tuesday or Wednesday. We were thrilled, though a bit panicked too, as we still have so much to do to get ready for Bubble Baby's arrival.

Monday morning we were told that if all went well for the next 24 hours, she'd be coming home on Tuesday. My wife and I had lunch in the hospital cafe with our heads spinning. We couldn't believe it was happening so soon. But when we returned to the NICU from lunch, Bubble Baby's nurse informed us that she just had a couple of what they call "episodes." She had a "Brady" (short for Bradycardia) in which her heart rate goes way down, and she stops breathing for several seconds. And she also had a "Desat" (short for Desaturation) in which the oxygen level in her blood dips way below what it should be. This would likely keep her there an extra day for observation. Then later that night she had more episodes, including a Brady in which Bubble Baby had to be revived by her nurse. So now her discharge date is completely up in the air.

We are told that these episodes are common for a preemie. She is still only at a gestational age of 35-1/2 weeks, so it could just be a sign of her immaturity. They just removed the feeding tube, and she's now feeding orally for all her feedings. She is still so small and has to work so hard every feeding, and perhaps it's a bit much for her. It could also be reflux, so they've propped her bed up at an angle to see if that will help. Or it could be that she's having problems generating hemoglobin in her blood, which is another common preemie issue. In that event, they may need to do a blood transfusion. Shortly after Bubble Baby's birth, I donated blood designated directly for her in case of such a scenario. (They have yet to find out if Bubble Baby is a match for my blood first, and Bubble Mommy can't do the direct donor transfer because she recently had a c-section.)

So we're in limbo once again. During the seven weeks of my wife's hospitalization we were told that the baby could arrive any day. And now we are in a somewhat similar situation. Resolution to Bubble Baby's current issues could come quickly, or it could take a week or more. But though we are anxious to get her home, we want to make absolutely sure that she is truly ready before she is discharged. We've waited this long, and we can wait a little longer if we need to....

Bubble Baby no longer has a feeding tube

One Month Old

One Month Old Bubble Baby

This past Thursday Bubble Baby was upgraded from an incubator to an open-air bassinet. And she now takes most of her feedings orally (instead of through her feeding tube.) If all continues to go well, she might come home soon!

Nap Time

34 Weeks

On Sunday, September 26th, Bubble Baby reached 34 weeks gestation. At one point, that was our ultimate goal while my wife was in the hospital on bed rest. If she had stayed pregnant that long, the doctors may very well have scheduled a "routine" c-section for today (Sep. 27th). Doctors had indicated to us that the risks might have outweighed the benefits of staying pregnant at that point. So it was a strange date to pass on our calendar.

It's hard to know what things would've been like if Bubble Baby had been born now instead of 3-1/2 weeks ago, but our NICU stay almost certainly would've been much, much shorter. When Bubble Baby was born her weight (3lbs., 2oz.) was pretty much average for a baby at her gestation (30-1/2 weeks). As of today she is up to 3lbs., 12oz., but the average weight for a fetus at 34 weeks gestation is 4lbs., 12oz. Her length at birth was also average at 15-3/4”, but she hasn’t grown any longer, and a fetus at 34 weeks is typically 17-3/4”. So she's behind on the growth chart, but that's normal for a preemie, and we know that it may take her years to catch up with her peers.

Bubble Mommy with Bubble Baby

Last week she had an elevated heart rate for a little while. We were told that "it's probably nothing,” and it seems to have stabilized now. But after all we have gone through, it's tough to deal with these ups and downs, because we know that sometimes things do happen.

But overall, we are happy with her progress. She is breathing on her own, and as of today she is no longer on caffeine. She is also able to regulate her own body temperature pretty well, and she may be moved to an open-air bassinet soon. The last major hurdle she needs to get over is learning to feed, which she is starting this week. We are hoping that she will be home before the original estimate of late October or early November that we were given when she was born.

Bubble Daddy holds Bubble Baby at 34 weeks gestation

But while Bubble Baby is doing well, our six-year-old is really having a tough time. Having Bubble Mommy at home has helped, but a lot of her behavioral issues still persist, and we’ve started her on therapy. We sense that she’s lost a lot of innocence these past few months. Each day is a struggle, but we trust that things will get easier eventually.

Video of Bubble Baby at 34 weeks gestation

When Bubble Baby comes home it won’t solve everything, but I’m sure it will help. And we’ll finally feel like the family of four that we are.

Learning to Eat

Babies who are born before 34 weeks of gestation are too young to know how to coordinate swallowing and breathing. Bubble Baby loves to suck on her pacifier, but if we'd tried to feed her like a full-term baby, she would likely have inhaled some of her milk, sucking dangerous fluid into her lungs. So initially she received all her nutrition through an IV, then breast milk in small increments until she was getting enough to go off the IV support last week.

On Friday I had an appointment with the NICU lactation consultant to begin what's called non-nutritive feeding. How it works: after I express milk for Bubble Baby, I hold her while she gets milks through her nasal feeding tube and try to have her pretend to nurse. The first time she slept through it, but the second time she did great. I felt almost euphoric the rest of the day. We'll keep trying to get her to do it once a day and hope that as she continues to gain weight she'll build enough stamina to switch to feeding on her own without the feeding tube. The concern as she learns to feed on her own is to make sure she doesn't use more energy to feed than she's consuming in milk calories. In the past couple of days she's done fairly well, but gets tired within about 10 minutes, so then I just cuddle her while she feeds through the tube and eventually falls asleep. I'll be so glad when we can finally have her home with us to hold like that for more than once or twice a day.

9 Minutes

It's been more than 2 weeks since the birth of Bubble Baby, but it's taken me this long to feel up to writing her birth story from my perspective.

I had sort of settled into a routine during those 49 days of hospital rest: injections, boring meals, NSTs (monitoring the baby's heartbeat and my contractions), naps, visits from Bubble Daddy and Bubble Girl. By August 31st, however, I'd begun to get a funny feeling that things were about to change. My OB asked me for a more specific explanation, but I just felt . . . my body was changing. It reminded me of the day before Bubble Girl was born. But by Sept 2nd, I felt myself settling back comfortably into the routine and set myself to make it through another month of hospital rest.

On Sept 2nd I was treated to a lunch visit from my sister, which brightened my day. She left shortly before I had to be hooked up to the monitors for my 2pm NST. I took the opportunity to use the bathroom before I had to get strapped in for at minimum 20 minutes, and possibly hours, depending on the readings. I was lucky this time, and only had to sit there for about 45 minutes, and everything looked great--the baby's heart rate was strong and steady; I didn't have any contractions. The nurse came in to free me from the monitor and we chatted, joking about how this baby better appreciate all I've had to go through for her.

I got up again to use the bathroom, and almost immediately knew something was wrong. I felt something falling; I couldn't tell exactly what, but thought it was possibly a large blood clot. I hopped back into bed and immediately called the nurse. She came in right away, I told her her what I thought was happening and she ran to get the resident on duty. I called Bubble Daddy to put him on alert that something might be about to happen. As the resident came in, I hung up the phone. After a few minutes searching for a flashlight and assembling equipment for a examination, the resident took a look and immediately sprang into action--the thing that had fallen out was the entire umbilical cord. They would have to deliver the baby immediately in order to save her life. I called Bubble Daddy back and frantically said, "I need you here now!" and the call dropped. He called me back and I insanely just repeated myself. About 10 people descended upon my room, one nurse holding the cord back up, another frantically inserting an IV in my wrist, another holding it down while the nurse yelled, "Hold it, there's no time for tape," others were pulling up the bed rails and everyone began to push my bed down the hall at a frantic pace to the operating room. I looked at the resident, and as I began to understand what was going to happen, I asked her if I was going to have general anesthesia. Before she could say anything, I could see the answer in her face--yes. General meant that I would be asleep when the baby was born; I wouldn't get to experience my baby's birth. I then asked if my husband would make it in time. No. Would my OB make it in time from his office only 4 blocks away? No. I remember feeling the breeze catch my hair as we raced down the hall throughout the conversation. As we went through the door of the OR, I yelled out that the baby was breech, and they needed to make a vertical incision. I made it into the room, and had to heave myself off my bed, onto the operating table, all the while, the nurse was holding the cord. The anesthesiologists asked me if I was allergic to any medications--I couldn't remember! But I said no, which was the right answer. I was scared to go under. Someone across the room saw my allergy band on my wrist and asked what I was allergic to. The anesthesia mask came down upon my face as I yelled out, "Latex, mangoes, shellfish." They told me to relax, so they could do what was best for my baby. I realized I was still clutching my cell phone--I handed it to someone, realizing I would have no use for it.

9 minutes after I'd hung up on Bubble Daddy, the baby was born. I awoke feeling sad and groggy, with Bubble Daddy and my OB nearby. My OB arrived after the delivery, in time only to finish the surgery. I made Bubble Daddy hold my hand for I don't know how long. Nurses who had cared fro me over the previous 7 weeks came by to see how I was doing--I'll never forget their kindness. I was eventually transferred to a post-partum room, where I would stay for the next 4 nights before finally going home. I had to wait more than 24 hours to make it upstairs to the NICU to meet Bubble Baby. I was so happy that she had made it, and that I finally had permission to get up and walk after so many weeks, that I actually walked my wheelchair the whole way instead of riding in it. Bubble Baby looked beautiful--she was a little chubby and rosy and seemed fairly healthy for being born so early. Over the course of the next few days she lost some of that baby fat (all newborns lose a little weight at first), and the rosiness turned into the oranginess of jaundice. But at the moment I met her, in a flash, I knew that it had all been worth it: the 7 weeks of confinement, the chaos of the delivery, having missed her birth--none of it mattered so much, now that I could see our beautiful, tiny baby.

Two-weeks-old, or 32 and 4

Yesterday our daughter turned two weeks old. But in the NICU, babies are referred to by their gestational age because it’s more indicative of their level of development. So yesterday our daughter was known at the NICU as 32 weeks and 4 days. She has had a few setbacks, but has made mostly positive progress so far, and everyone keeps telling us that her long-term outlook is good.

It doesn’t really feel like it’s been two weeks because we only see our daughter a few hours a day. Taking care of our six-year-old prevents us from being there longer, but perhaps that’s a good thing. The NICU is not a happy place. It is divided into multiple bays, each with up to 8 babies, which are dimly lit and filled with the constant sound of beeping machinery. As I’ve mentioned before, it feels like it’s part nursery, part laboratory.

Above: Bubble Mommy holds Bubble Baby at 5-days-old

Our baby is kept in what’s called an isolette, which looks like a huge plastic box on a pedestal that’s connected to several computer screens. The isolette has two doors on each side for hands to gain access to the baby, and the top can also be raised up for access. She is hooked up to several different tubes, wires and monitors. There are separate ones for her heart rate, respiration, the oxygen level in her blood, temperature, and blood pressure. There is also an IV, which is constantly being relocated on her body. One day they had her IV on her head, which was somewhat hard to look at.

At birth our daughter could not breathe on her own, so she was intubated – a tube was placed down her throat to assist with breathing. But she quickly graduated to a CPAP (continuous positive airway pressure) device, and then to a nasal cannula. Eight days after birth, the cannula was removed. As of today, she is still breathing room air. She gets periodic doses of caffeine through an IV, which, as the nurses have explained, helps her body “remember to breathe.”

She also has a feeding tube that was first inserted into her mouth, but now is in her nose, which is used to transport milk directly to her stomach. She can suck, breathe and swallow, but cannot breast-feed or bottle-feed yet because she is not coordinated to do all those things together in the right way. We’ve been told that she may be ready to start that in a couple of weeks, but that it may take a long time for her to master. And since her digestive system is not mature, occasionally milk will just sit in her stomach and will have to be extracted later. They refer to that as “residuals,” and with each feeding we hope to hear that she has none.

Above: Bubble Daddy holds Bubble Baby at one-week-old

A few days ago she had some blood in her stool, which sounds frightening, but is just another sign that her digestive system is not mature. So they withheld her feedings for a couple of days.She was still getting the nutrients she needed via an IV, but her stomach felt hungry, and she was a bit fussy for those days.

She has also had jaundice, which is fairly normal even for full-term newborns. It is treated with phototherapy, which consists of special lights that shine from above and below her. During phototherapy she is blindfolded and we are not allowed to hold her very long. We are told that it can come and go several times for a preemie, and so far she’s had two different spells.

Last week she had a brain scan, which fortunately came back clean. It’s not a guarantee that she doesn’t have a problem, but it’s the best possible result we could hope for. Also, at one point they thought she might have an infection, but tests came back negative. However, we are told that infections are normal for preemies, so there is a good likelihood that she will get one at some point.

Above: Bubble Baby at two-weeks-old

It’s been tough on our six-year-old because children are not allowed to visit the NICU at our hospital. We have shown her a few selected photos and video clips, but she so badly wants to meet her sister in person.

If all goes well, our daughter might be home by late October or early November. Time is going by faster than when my wife was on bed rest, but it’s still going by slowly.

Recounting the Bubble Baby's Birth Story: The Bubble Almost Bursts

We had been living with “it could be any day now” for a month and a half. But when we got to September, things seemed pretty stable, and we started to think that we’d be lucky and make it to 32 weeks (Sep. 12th). At that point all her major organs would probably be developed. And if we were really lucky perhaps we’d make it all the way to 34 weeks (Sep. 26th). At that point, her NICU stay might only be a few days. And as hard as it was, we really had a hang of our daily routine, and we felt like we were equipped to go a lot farther.

But early on the morning of September 1st, my wife reported that she was feeling odd. She said it was a similar feeling to the one she had before our first daughter was born. On top of that, the baby’s heartbeat showed some decelerations. And even though my wife couldn’t feel anything, monitors picked up some small contractions. But the nurses said it was nothing to be alarmed about. They said that if my wife couldn’t feel anything the contractions were insignificant, or perhaps a false reading. And there were previous decelerations that amounted to nothing. Still, I spent the afternoon with my wife in the hospital and we were convinced that the baby was coming soon.

But by the morning of September 2nd my wife reported that she felt fine again. Monitoring showed no more decelerations or contractions. She theorized that perhaps she felt strange the other day because the bed rest was taking a toll on her. We had several previous moments where we thought delivery was imminent, so perhaps this was just another. So once again we thought we could still go a few more weeks, and I looked forward to our daily visit that evening.

Then my wife called me at 3:14pm to let me know that she had just went to the bathroom and felt like she was passing a blood clot or something. She was going to call her nurse but she wanted me to be on standby. I anxiously awaited a call back and got my hospital bags ready just in case.

At 3:23pm my wife called and frantically said “I need you here now!” The call dropped. I quickly called her back. “I need you here now!” was all she said again. I heard a lot of people screaming in the background and I heard someone say the word “deliver.” But before I could ask anything the call dropped again.

I quickly grabbed my bags headed to the hospital. I tried calling my wife again but the call went straight to her voice mail. I knew that they were going to deliver the baby, but I didn’t know exactly what was going on, or how long it was going to take. It’s only a 20-minute drive to the hospital, so I held out hope that I’d get there in time, but I had a bad feeling that I wasn’t going to make it.

Once I arrived at the hospital I went straight to my wife’s room, but when I opened the door she wasn’t there. The room looked like a tornado had hit it, and there was medical equipment scattered all over the place. I ran back out to the hallway and shouted at every nurse I could see, asking where my wife was. A nurse escorted my down the hallway towards the OR. I explained that I thought she was delivering our baby and asked to see her. The nurse saw how frantic I was and told me to breathe. She explained that I couldn’t go into the OR to see my wife, and she told me “the baby is already out” and was in the NICU.

My heart sunk. I had missed the birth of my second daughter. And I knew that my wife had been put under general anesthesia and had missed it too. As rotten as the weeks of bed rest had been, and knowing that we’d possibly have a long NICU stay ahead of us, my wife and I were at least looking forward to witnessing the birth. But now that was gone.

The official time of birth was 3:32pm. Amazingly that was only nine minutes after the last call with my wife. I really had no shot to make it there in time.

I was told that my wife would still be out for a while, so I asked to see the baby. A nurse escorted me up to the NICU. When our first daughter was born I was there to witness it and felt an instant connection to her. But this time I had to ask “Is that her?” when I first saw her. We had previously been told that we’d have a few minutes to take photos after birth and before the baby was taken to the NICU. But everything had happened so fast that I missed out on that. She already had several wires hooked up to her, and I made it just in time to see doctors inserting a tube down her throat. Gone was the opportunity to have a nice clean photo to share with friends and family. Still, I took a few photos and some video. I was determined to document everything no matter how it looked.

I was told to expect that she will be in the NICU for about two months, and that there will be some setbacks, but that her long-term outlook is good. She wasn’t able to breathe on her own, but I was told that she actually let out a couple of cries right after birth, which is a good sign. The steroids my wife had been given after she first was hospitalized had helped to expedite the development of her lungs, but they were still about a week or so away from maturing.

After a while I asked when my wife was going to regain consciousness. I knew that she would be upset, and I couldn’t bear the thought of her waking up without me there. So I was escorted to the PACU (Post Anesthesia Care unit) to wait for her.

On the way to the PACU I ran into my wife’s obstetrician. His office is only about four blocks away, and even he couldn’t make it there in time. He told me congratulations and then explained what had happened. My wife likely dilated from zero to ten centimeters in a matter of seconds. This in turn lead to a prolapsed umbilical cord, which is extremely rare -- even rarer that the preterm rupture that brought my wife to the hospital in the first place. Our OB said he had only seen a prolapsed cord one other time in 30+ years. It's a life or death emergency because the umbilical cord is the baby's oxygen supply. There is also a risk for brain damage. In our case, the entire umbilical cord fell out, and the baby dropped down and pressed against it, which made things even more urgent. The baby's heart rate dropped from about 150 beats per minute (which is normal for a fetus) to about 20. They only had minutes to deliver the baby or she would die.

Once the prolapsed cord was discovered, a “code red” was called and about a dozen nurses and doctors had rushed to my wife’s room. They didn’t have time to put her on a gurney, so they wheeled her bed out of the room and rushed her down the hallway toward the OR. A nurse was literally holding on to the umbilical cord and trying to keep it in place. My wife later said it was like she was living the craziest scene you’d ever see on a TV drama.

A few factors made the c-section even more difficult: the baby was in breech position, the placenta was in the front, there was very little amniotic fluid left, my wife had a previous c-section, and there wasn’t the usual amount of prep time. There was a risk of cutting the baby during the procedure, and my wife was at risk for a rupture that would lead to internal bleeding. Fortunately, the c-section was performed almost flawlessly.

Several people told us that if my wife had been anywhere else but in her room, there wouldn’t have been time to save our baby’s life. We were told that if my wife had pulled on the cord, our baby would’ve died. And we were told that there are only two hospitals in our city that have an in-house anesthesiologist. Ours was one of them. Without that, we would’ve have had a chance. And even with everything that we had in place, it was still a close call. After all we had been through, we came frighteningly close to losing our baby. Suddenly the 49 days of bed rest became that much more meaningful. And I recalled a conversation with my wife at the start of the pregnancy as to which hospital we should choose. We both agreed to go with the more expensive hospital because we wanted the best care, and it ended up making all the difference in the world.

Finally my wife was wheeled in to the PACU, just as she was waking up. My wife was in tears and said that she felt that she let me down. I told her that she didn’t, and that she had actually saved our baby’s life by knowing enough to not pull on the cord. Meanwhile, there was another woman in the PACU who had just given birth. She was holding her baby and had tears of joy, and was calling people to spread her good news. Of course, we don’t begrudge her for that, but it was hard for us to listen to her.

We knew that the most important thing was that our daughter had survived, and we kept reminding ourselves of that. But with all that we had gone through, and all that we knew was still ahead, we didn’t feel the joy typically associated with having a baby, and we felt bad about that. We felt very fortunate that we had made it from 23-1/2 to 30-1/2 weeks, yet we were sad that we couldn’t go farther. Our baby had still arrived over two months before her due date, which is far from ideal, and we worried about what problems she might end up having. After being teased by the possibility of a short NICU stay, we were disappointed that she would have a lengthy stay after all. Reality started to sink in that we were officially parents of a preemie.

We were moved from our MFCU (Maternal Fetal Care Unit) room to a Post-Partum Recovery Room down the hall. It’s amazing how much stuff we had brought in over seven weeks. As I removed all of our six-year-old’s artwork from the walls, I strangely felt sad. That room was never warm and fuzzy, yet it had still become like a home to us. And we were leaving it so suddenly.

Later on the night she was born, I went back up to the NICU to see my new daughter. I went up to her and said, "Hey baby girl." She immediately opened her eyes as if she recognized my voice. I started to cry. After all the doubts we had at the start of this ordeal, and all the drama we had earlier that day, I couldn’t believe that she was actually here.

I spent the next four nights in the hospital with my wife. It was really tough on our six-year-old, and she cried to me every day on the phone. My wife’s mom and sister, and some wonderful and loving neighbors all pitched in to take care of her. But she was at the end of her rope and told people that she felt like she didn’t have a Mommy or a Daddy anymore. We feel awful that our six-year-old’s memory of her sister being born will not be a happy one.

At the hospital, my wife became an instant legend. We kept running into people who were there during the delivery, but whom my wife couldn’t remember. Everyone seemed proud to have been a part of our story. Many of the nurses, some who have been there 20+ years, told us that they'd never seen anything like it before. A couple of days after the birth we ran into a doctor we had never seen before. He introduced himself and said that he was the one who delivered our baby. It was a little surreal.

Four days after giving birth, my wife finally got discharged. Her doctor told her that a full recovery from everything she’s been through could take 3-6 months. And while we know she’s in good hands, it was really hard to leave the hospital without bringing our new daughter home. Perhaps the scariest part was behind us, but we knew that there was still a long, difficult road ahead.

September 2nd: The Bubble Baby Arrives

After being on hospital bed rest for 49 days, we came frighteningly close to losing our baby.

Without warning, the umbilical cord prolapsed. It is fatal within minutes. The entire cord fell out and the baby fell against it, which essentially cut off the oxygen supply. The baby’s heartbeat dropped down to a dangerously low level.

Thanks to the amazing team at our hospital, an extremely difficult emergency c-section was performed only minutes later which saved our baby’s life. We were told that if my wife had been anywhere else but in her hospital room, the baby would not have survived.

The record will state that my wife gave birth to a baby girl on September 2nd at 3:32pm, weighing 3lbs. 2oz., and measuring 15-3/4 inches. She was at 30 weeks and 4 days gestation, over 2 months before her due date. She could not breathe on her own, and was immediately taken to the NICU. We are told she will be there for about 2 months, but that her prospects are good. She has been making mostly positive progress over the last week and we are cautiously optimistic.

My wife returned home a few days ago and is recovering from both the c-section and being on bed rest for 7 weeks. Life still isn’t back to normal, but at least we have resolution on the first part of our journey.

Later we will post a more detailed entry about what happened that day. It all went down so fast that we’re still trying to wrap our heads around everything. It is a truly amazing story, and it is truly astounding to us that our daughter is here and alive.

Good Bye August, Hello September

We never thought we'd make it this far. On August 1st we were only at 26 weeks and just hoping to get to the middle of the month. We figured chances were that the baby would come at some point during August. But here we are on September 1st. My wife has now been at the hospital for 48 days, and there’s only one other expectant mother who’s been there longer than us.

Our daughter marks the last day of August on the calendar in my wife’s hospital room.

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!).