Some things just don’t go as planned….

I found out that I was pregnant in March of 2003. It was an unplanned pregnancy (I was on the pill); I was surprised, but excited at the same time. When I was 10 weeks pregnant I started bleeding and I assumed that I was going to miscarry. I went to the doctor and he performed an ultrasound and said that he didn’t see a heartbeat. He sent me to the hospital before performing the D&C “just to be sure”. Well it ends up that I was only 6 weeks pregnant and everything was ok with the remaining baby (I was carrying twins, but one had miscarried).

Everything progressed normally until I was 25 weeks pregnant. It was a Thursday night in August. It was hot and I was very uncomfortable, but that is pretty typical for a pregnant lady in the heat of a Wisconsin summer. I was not feeling well but thought it was the heat. I went to bed and tried to rest, but I kept having pains in my back. I also had pains in my stomach, but they would come and go so at first I thought nothing of it. I was only 6 months pregnant, so it was probably those Braxton-Hicks Contractions like I had had the week before. I went to bed and thought no more of it…I need to sleep because I had to work the next day.

Well at 3:00 am I woke up with a pain in my back and decided that I was going to go for a walk. That is what I had done the week before to get rid of those…Well I got about a mile from home and the pain was getting worse. If I turned around and went home I wouldn’t have a way to the hospital (my car had broken down the week before). So I decided to keep walking…It was about another mile to the Hospital and I had walked that far before. (I had been exercising throughout my pregnancy)

When I arrived at the hospital they rushed me to the OB floor and I went to the bathroom to change into a gown, and I noticed that there was a pink stain in my underwear…The nurse checked me and she frantically called the doctor…Apparently she saw my son’s foot but didn’t tell me… The doctor on call checked me and I heard him say that I was at 8 ½ cm. From that point on it is all a flurry of activity… I met so many new doctors and nurses over the next two hours…I met an OB and an anesthesiologist and a neonatal nurse practitioner. Another doctor came in and checked me and now I was at 9 ½ cm.

My Mom finally arrived at the hospital, and they brought her to my room. That is when they told me that I had to deliver my baby today to save him. I remember trying to argue with them, but my mom told me everything was going to be ok and so I had no choice but to believe her. Then they whisked my mom away and had her put on scrubs. She was not allowed to come into the delivery room but was going to wait in the hall. The next thing I remember is being wheeled down to the delivery room, I asked if my mom could stay with the baby, and was told that he would be far to critical and that was not an option.

Once I got to the delivery room I don’t remember a thing (I was totally knocked out for my delivery.) The next thing I remember is waking up in a room with no windows and a nurse that I never met before telling me that I had a son…. Honestly, I was shocked I thought it was a dream… I didn’t believe her. I finally realized it was true when my boyfriend said that he lost our bet (I knew it was a boy all along and he said that it was a girl). The Nurse informed me that my son was in the NICU and that she didn’t know anything else yet. (I thought that my son had died and no one was telling me).

I was wheeled back to the room I was in earlier in the morning. I asked about my baby and all the nurses wouldn’t answer my questions. After an hour or so a NNP (Neonatal Nurse Practitioner) came to tell me about my son. He weighed 1 pound 13 ounces and was 14 ¼ inches long. She told me that he was very little and was on a ventilator. She said that his chances for survival were not good, but it was a waiting game. She said that sometimes the “little ones” surprise us. I asked if I could visit my baby and she said that they were “working on him” and she would let me know when I could see him.

I waited as patiently as I could and at about noon I received the call that I could see my baby. I was in no way prepared for what I was about to see.

I was wheeled down the hall to the NICU and was instructed to wash my hands (a ritual that would soon become all too familiar). I was then wheeled to an isolette that was behind some curtains. I was told that I should only whisper, as loud voices would harm my son and the other babies in the nursery (apparently all the alarms didn’t bother them?). All I could see was a bunch of tubes and wires. When I looked a little closer I saw him. It was my son so small and so helpless. All I could do was cry.
He didn’t look like any baby I had ever seen. He was bony and covered in a lot of hair. I was told that his eyes were still sealed shut, and it would be weeks before he opened them. I remember crying and asking if I could touch him and was told that he was too critical and it would be best if I didn’t touch him yet. One of the nurses took a picture of him and gave it to me to take with me to my room. I was told that I could come to visit him at any time. A doctor told me that my son’s chances didn’t look good. He said that he was “awfully tiny”. I didn’t know what to think. I was totally overwhelmed by the NICU. All the sights and sounds. It was a very scary place for me at that time. (Little did I know that it would become my second home over the next two months.) I couldn’t take it any more and I went back to my room.

I spent the next several hours alone in my room. I remember crying at the thought of everything that had transpired in the last few hours. I remember every person that came into check on me offering me condolences and looking like someone had died. I remember being angry that they were mourning the loss of someone who was very much alive.

I received a call from the NICU a short while later asking if I had named my son yet. I hadn’t thought of any names for boys yet. I told them I would call them back in a little while. I had never named someone before, so I needed to think. A short while later after I discussed names with my boyfriend we decided that Jared was a good name. My boyfriend had heard the name while watching a TV Program and I thought it was a good name. We decided that the middle name of Michael went well with that. So I called the NICU and told them that my son had a name and told them that Jared was what they should call him.

I remember the exact moment that I decided that my son was going to show them all wrong. A kind nurse came into my room to talk to me and give me some pain medication. She said that she had seen a lot of sick babies born, some early and some on time. She told me that some had done well and others had not. She said that babies can sense how the people around them feel about things. She said that the attitude the family takes helps immensely. That was the moment I decided that my son was going to show them all wrong. He was going to be a success story and that was that.

Over the next few days I spent every minute I could down in the NICU. I finally was able to look past all the tubes and wires. All I saw was my beautiful baby. I didn’t see the machines, or the ventilator. I was amazed that this tiny person had come from inside my body. It was only a few days ago that he was kicking me in the ribs. (That had been one of Jared’s favorite pastimes when I was pregnant). Now he was kicking inside his isolette.

I will never forget the first time I changed his diaper. I was so afraid that I would break him. He was so small; he fit in the palm of my hand. His diapers were so small, but on him they looked so big. He drowned in them. His body was small and floppy, like there was nothing holding him together. There were so many tubes and wires to contend with that I had no idea how I was going to change him through the tiny arm holes in his isolette with all that extra stuff in there. I felt totally out of my element. I didn’t know how I was going to care for such a tiny baby. Thank God for all the nurses in that NICU. I never would have made it without them. They walked me through every task step by step. They were so understanding.

Then came the day that I was dreading; I was to be discharged. I didn’t want to leave the hospital without my baby. This was not what I had envisioned. I was planning on having a “normal” delivery and being able to take my baby with me. So I went home.

A few hours later I came right back to visit my baby. I scrubbed in and went to sit by his isolette. I sat there for hour and hours just watching him breathe. It was amazing. I was allowed to touch him once every 4 hours when his diaper was changed. I made sure I was there for every diaper change. I didn’t want to miss a chance to touch my baby. I was waiting for the day when I could hold him and feared it would never come.

I finally got to hold him when he was 10 days old. I remember being terrified. I know that I was crying the whole time I held him. They were not tears of sadness, but tears of joy. I remember him being all wrapped in his blankets and feeling so light when they placed him in my arms. He was more tubes and wires then anything else (he was still on the vent). The nurse told me that I wouldn’t be able to hold him for too long. She was worried that he would get cold. She said not to expect more than 5 or 10 minutes. Well, 10 turned to 15 then 20 and before I knew it an hour had passed and I said that we should put my son back in his isolette (my arms were getting tired, and Jared was actually getting heavy).
Over the next few weeks Jared had many bumps in the road on his journey through the NICU. He needed several blood transfusions to treat his anemia. He had to have a swallow study due to a hole in his esophagus. He had to have a chest tube placed in his lung due to a hole that had developed. He had weekly ultrasounds to check the status of his IVH. I learned about more medical procedures then I care to mention.

It is still hard for me to recall every detail of the 67 days we spent in the NICU. I say we because I never missed one day. I was there everyday. I look back now and don’t know how I did it. I remember going back to work after Jared was 2 weeks old. I would go to the hospital before work and after. I wouldn’t come home until after 11:00pm and I know that I was at the NICU before 6:00am. On the weekends I would spend 12 – 14 hours there in a row. I didn’t want to miss anything.

I remember being there the day my son opened his eyes for the first time. I think he was 2 ½ weeks old. I had come in later than usual (I let myself sleep in that morning). He was laying in his isolette doing nothing (his usual routine). All of a sudden I saw his eyes “pop” open. I literally fell off my chair. I was so excited. That was when I knew everything was going to be okay.

Then there was the day that Jared was “doing so well” that the doctor decided that it was time for Jared to have his vent out. I don’t know who was more nervous his nurse or me. He was still so tiny and was still weeks before his due date. I didn’t think he was ready, but if things didn’t go well I was told that he could always go back on the ventilator. I requested that I be there for the procedure and so the nurse waited for me. I arrived and then before I knew it; it was time.

I still remember the first time I saw my son’s whole face. He was 3 ½ weeks old. Boy was he cute. I had never seen something so beautiful in my whole life. Up until that moment his face was covered with so much tape to hold his vent tube that I had never seen the whole thing before. It was better then I had imagined. He was on CPAP for three days before he decided that he was going to remove it. Then he had a tube that went under his nose to supply him with supplemental oxygen. I was told that he would have that for as long as he needed it. Little did I know what a battle that would be?

Jared was not able to “eat” for the first 4 weeks of his life. As I mentioned earlier he had a hole in his esophagus. It appears that it was either caused at birth in the rush to intubate him, or by Jared pulling on his tube. For the first 4 weeks of life Jared received all his nutrition through his IVs; but that was about to change.

A new doctor was on rotation now and he wanted Jared to “bulk up”. Jared had lost 7 ounces since birth (not a big deal for a “normal” baby, but a very big deal when you weigh less then 2 pounds). So, Jared had his first feeding. It was 1cc of formula. That was slowly increased and before I knew it he was “eating” an ounce at a time. All of his feedings were given via a gavage tube. Jared was too young to “suck, swallow & breathe”. I was told that most babies don’t do that until they are 36 weeks gestation and Jared was only a 29 weeker, so he “wouldn’t be ready” for weeks.

Before I knew it he was back at his birth weight. He started to look like a real baby; he was less tubes and wires, more baby. I was really a mom, the mom of a 25 weeker who was doing well and proving them all wrong. I was absolutely amazed as I watched my son grow right before my eyes. It was truly amazing.

The doctor said he was weeks ahead of schedule in many areas. His brain bleeds were shrinking, so the weekly ultrasound was cut back to every other week. The doctor also said that he was going to try cutting back Jared’s oxygen (Jared had other ideas about that). The doctor thought that Jared was “almost ready” for the bottle. Over the next week or so Jared would suck on a pacifier while he “ate”. He was really getting the hang of it and would be “ready for the bottle in no time”.

Jared had his first bottle a week later and did great. He had a few Bradys, but for the most part did great. He was doing so much better than expected. Before I knew it he weighed 2 pounds and then 3 pounds. The days all seemed to go by so fast. I would go to work and then to the hospital, and home and back to the hospital.

Then there was talk of him coming home; weeks before his due date. I realized that I was totally unprepared for that thought. The whole time he was there the nurses kept telling me that he would come home “around his due date”. But it was early October and there was talk of him coming home in just a few weeks. I was not ready; I was comfortable in my routine.
Jared was holding his body temp well and it was time to move from his “bachelor pad” to an open crib. It was so weird seeing him with out glass between us. I could touch him whenever I wanted; it was weird. Jared was still on oxygen at 2%. All attempts to wean him from the oxygen had failed. Perhaps Jared wouldn’t be coming home as soon as I thought. I was not at all comfortable with the thought that I might be bringing him home with oxygen. I had decided that if he needed that he would have to stay at the hospital. Jared was moved to the back room. The back room was for “feeder growers” and then I realized he was even closer to coming home then I thought. The only thing really holding him back was the fact that he still needed oxygen. He was gaining weight well. He weighed over 4 pounds.

Then one morning I came in and His oxygen was gone. He had been weaned and was doing well in the few hours I was gone. I was shocked, elated and totally petrified at the same time. My son was going to come home very soon. I could hardly wait. I planned my “room in” and everything went well. Jared was switched from the Neonatalogist’s service to his general physician. And there was talk of him coming home on my birthday. What a gift that would be. Jared’s doctor then left for his trip to Alaska, and we saw another doctor from his clinic. That doctor said that we would have to wait a few extra days for discharge. I will admit that I was disappointed, but was excited that Jared was coming home, so a few extra days wouldn’t matter that much.

And then the day was here. It was time for Jared to come home. A day that both terrified me and made me happy at the same time. I woke early that day and went about my usual business. I drove to the hospital realizing that it was the last time I would be going to “visit” my son. As I scrubbed in I was so happy and sad at the same time. All that I had known was coming to an end and a new chapter was about to begin.

I walked back to his bassinette and the therapist was feeding him. She asked me if I wanted to feed him, and I let her finish. I was going to have him for the rest of his life all the staff were only going to see him for a few more hours. I had never thought about how hard it must be to see all those little babies “grow up” and go home. I made sure Jared had some time with each of them before discharge.

I met with the doctor and then went home to shower. My mom came and picked me up to take me to bring my son home. I feared that I would be far too nervous to drive. We had to wait for the attending doctor to sign Jared’s release papers. It felt like forever. Then we said our final goodbyes to all of Jared’s doctors and nurses. I don’t know who cried more me, or them. They had become such an important part of my life over the past 67 days (there number was in my speed dial). I walked through the NICU doors for the last time. This time I had my son; with me and did that ever feel weird. At that moment I realized that my life would never be the same. I was from that moment on solely responsible for Jared.

Jared and I walked through the doors to our home and I will never forget it. He was sleeping and I snapped pictures. My mom left and I was alone with my baby Life couldn’t be better. I look back now and recognize that it is certainly not the birth experience that I had envisioned, but I certainly wouldn’t trade the experience for anything.

Jared is now a healthy, happy 9 month old. He is behind developmentally for his chronological age, but he right on track for his corrected age. I truly couldn’t be more proud. I know that Jared is not your typical 25 weeker. I know that I am incredibly fortunate to have been blessed with a healthy child.


Lisa
–Mom of a former 25 weeker-