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.