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I was crying and shaking uncontrollably and the nurses kept telling me that I needed to calm down. I don’t think that I have ever been as terrified as I was at that moment in my whole entire life. In the middle of all of this, I kept asking the doctor why, why, why and he told me that we had to do this to save me and the baby. As I was being wheeled down the hall to the OR, I looked at my family and they were all so petrified, but trying to keep up a brave front for me.
What I found out later is that my placenta had abrupted. A placental abruption occurs when the placenta begins to deteriorate and prematurely separate from the uterine wall. Depending on the stage of the pregnancy and the severity of the separation, the fetus could be deprived of oxygen and essential nutrients, leading to premature labor or even fetal death. As with the placenta previa, the mother is also at risk of internal bleeding and hemorrhaging.
As I arrived in the OR, there was a mass of people rushing around in what seems like a panic. I was crying and shaking still and looking around to see what was going on. A man with a mask, who I later find out was the neonatologist, came by and introduced himself and told me that he will take care of my baby. I kept asking anyone if my baby would be okay, knowing that the chances were not good for a good outcome. They put the sheet up at about my breastbone and I really started to freak. I wanted to try anything to stall and keep this from happening and so I started arguing with the doctors that I still had feeling in my legs, so please don’t cut yet. I was terrified beyond belief and then an angel, a wonderful nurse, came and sat beside me and took my hand.
She told me that she was the
mother of a 24 weeker, too, and he was now almost 16 and "'fixin’ to drive."
Hearing that made me feel so much better. Finally, there was a ray
of hope that I grabbed onto and held fast. As she sat there and tried
to calm me down, she told me that my husband was coming to sit with me.
I told her that there had to be a mistake because my husband had told me
that he wouldn’t be in the room when the baby was born. This had
been a pretty big argument throughout the pregnancy. He came and
sat down and took my hand. When I looked into his eyes, all I could
see was love and compassion and, of course, terror. I kept telling
him over and over again that I was so sorry that I couldn’t carry his baby
to term. He looked at me and told me it was okay, that he loved me,
regardless of what happened.
Born Too Soon
At about that time, he stood
up to look over the sheet and saw the doctors up to their elbows in my
stomach. Shortly after, they pulled Bo from my womb and handed him
off to the neonatologist, whose staff had just finished preparing the baby
bed/warmer. My husband sat back down and started looking very pale
and sick. One of the nurses came over to him to make sure that he
was okay. During all of this, the OR was loud and people were shouting
at each other to do whatever it was they were doing. Once Bo was
out, the room became deathly silent and I started asking my husband what
was wrong. He told me that they had Bo out and were working on him
and that my doctors were "putting me back together". The anesthesiologist
then came over and started to sedate me. I kept insisting that before
they take Bo to the NICU that I must see him.
As soon as he was born, the neonatologist took over and intubated him with an endotrachial (ET) tube. He was also infused with Surfactant to help his lungs work properly. The ET tube breathed for him through a High Frequency Oscillating Ventilator (HFOV). In the delivery room he was also given Epinephrine to increase his heart rate as it was ranging between 60-80 bpm. His heart rate immediately began to rise and he was taken to his new "home", the Neonatal Intensive Care Unit (NICU), but not before they allowed me to get a quick look at my new baby boy.
Never had I seen such a tiny, red baby with his eyes fused shut. My lasting impression was of his head, which was about the size of a tennis ball. The doctors asked my husband if he wanted to stay with me or go with Bo. I told him to go with Bo and make sure that he was going to be allright and that I would be fine. He went with Bo and then came back shortly after to report that Bo was doing as well as could be expected. The next thing that I remember since I was sedated was being in the recovery room with my mother wiping the hair from my eyes. I was startled because I was confused about what had happened. I wasn’t sure where my husband was and my mother told me that he’d gone home to get the boys to school.
On a side note, Cy, my stepson, didn’t even remember us telling him that we were leaving for the hospital. When my husband told them that they had a baby brother, neither one of them believed him and just assumed that I had been put back in the hospital like I had been before. They became scared believers very shortly, however.
Bo was born weighing 1 lb. 3 oz (555 grams) and was 8 ¼ inches long (21 cm.) and he was 16 weeks early. About 2 hours after his birth, I was able to see him and we had him baptized immediately. We had been told that the first 48 hours were the most critical and we didn’t want to take any chances. My mother called our pastor immediately after Bo was born (5:14 a.m.) and he rushed over to be with us. We were so scared and afraid that something would happen to take him away from us. One of the NICU nurses even went so far and told my mother that Bo would never be "normal", which is NOT something my mother shared with me for a long time.
At birth, Bo had very red/pink and translucent skin. His eyes were still fused shut (like a newborn puppy’s eyes) and they did not open for about 2 weeks. Bo was covered in "goop" because his skin was so thin and they were trying to keep his skin from drying out. It was explained to us that he had about 2-3 layers of skin on his little body, as opposed to us having around 40 layers. The nurses had to be very careful because if his skin was just rubbed, it could come off and scar him badly. He was kept under a little "saran-wrap" looking tent, again to keep in the moisture. We were told that the first 48 hours were critical and they gave him a 20% chance to live. After he made it through that, we were told that the first week was the "honeymoon" period. After that first week, things could go any which way. Well, we did the preemie "two-step" (one step forward and two steps back) for most of the time that he was there.
During the first few days of his life, I was still bed-ridden and wasn’t able to go up to the NICU and see him. I vaguely remember being furious with my mother and stepfather because they could go and see Bo as much as they wanted, while I had to lay in bed and wait for their reports. I felt as if they knew more about my son than I did and really resented them and their visitations with Bo. Eventually we worked it out, but there were some very deep feelings those first few days. I wanted to see for myself that Bo was doing okay, but all I got were reports. Finally, on the 2nd or 3rd day I was able to go up and see him. What a relief! I could see with my own eyes, how my precious, tiny baby was doing.
I was not able to hold him for almost 2 weeks and when I did it was for about 5 minutes. My mother and I had gone to visit and the nurse (one of my favorites) told me not to have a heart attack, but that she was going to allow me to hold him. She ran around like crazy trying to find a Polaroid camera to preserve the moment. As she handed him to me that first time, my mom and I just stood there, crying and looking down at my beautiful son. Oh, what a joy!!
There were times that we weren’t able to touch or talk to him, because he would have apnea and brady spells. All we could do at that time was to look at him through the isolette or incubator. He had the "normal" problems that most premature infants will incur. At one week of age, he was diagnosed with a Grade II Intraventricular Hemorrhage (brain bleed), which was most likely caused by the high percent of oxygen (100%) given in the first few days of life. The doctors kept a close watch on his IVH because it could cause problems (hydrocephalus) later. All in all he had about seven head sonograms to make sure that it was resolving.
One day I came into the NICU and asked what the latest was on his sonogram and the nurses were very guarded and said that the doctors would have to compare his last one. I kept asking what that meant. Was it good, bad or what? They told me that I shouldn’t worry about it now, because if what was suspected was the case, then I’d just have to deal with it. I was terrified. I racked my brain trying to remember what I’d read about these type of things and came up with only one that I thought was BAD enough to cause such a reaction from the nurses. It was Periventricular Leukomalacia (PVL). I asked the nurses if that’s what the concern was about and they asked who I’d been talking to. I told them that I’d been reading up on preemies and that PVL was something that could happen, which would most likely cause Cerebral Palsy (CP). Again, they told me not to think or read about it, but to wait. This kind of thinking from the nurses drove me crazy. I am a realist and want to know what problems I might be facing before the problems come slap me in the face. So I went and read about PVL and panicked. The doctor came back and said he didn’t think that it was PVL, but that the IVH was actually a periventricular hemorrhage, which again threw me for a loop. Did this mean he had PVL? I finally got a good explanation that the bleed had occurred outside of the ventricles, instead of inside the ventricles. An MRI was scheduled to rule it out before he was discharged to come home.
During this time, the doctors were chasing around Bo’s blood sugar levels and trying to get them straight. He had an IV drip of insulin to try and help this. Apparently, this is another common thing of prematurity. He had about 3 suspected cases of sepsis, which is a blood infection. Thank goodness each time it was ruled out.
Bo was started on expressed breast milk (EBM) on August 19th by an oral gastrointestinal (OG) tube. They were able to increase the volume slowly and he tolerated the EBM well. About a month later, his stomach became distended and firm, so they decided to stop the feeds for a while. This was the only time that the hospital called us with frightening news. They told us that they were stopping the feedings for now and were going to watch him very closely. The doctors ordered an x-ray and it showed that there was a lot of gas throughout his intestines. The good news was that it wasn’t NEC, which could kill a premature baby. He resumed the feedings a couple of days later with a lower calorie fortifier (additive). On October 27th, Bo was able to start bolus feedings, which is by holding a syringe filled with milk that goes through his NG tube to his stomach. My husband and I were taught to feed him that way and were finally enjoying "feeding" our son. During the bolus feed, we gave him a pacifier so that he would associate "sucking" with "getting a full belly." Finally, about a week or two later, we were able to introduce a bottle. He was diagnosed as a "poor nipple feeder." He worked his way up to about 3 bottles a day and I was able to convince the doctors that I could gavage (bolus) him the rest AT HOME. They agreed and I was taught to insert the NG tube, listen for placement and check for residuals. Funny thing is, once he came home it was a little over a week and he was taking all meals by bottle. I believe that the nipples that the NICU used just weren’t right for Bo and that is why he did so poorly.
I pumped breast milk for 10 weeks and finally decided to quit. From the beginning, I had trouble producing very much milk and as Bo’s volume need increased, my output decreased. This was very frustrating because it seemed at the time that pumping was all that I was able to DO for my son. I experienced a lot of guilt over the decision to quit, but afterwards, realized that I was a lot less stressed and was able to focus more on Bo.
He had 10 blood transfusions for anemia due to prematurity. I became pretty knowledgeable about him when it was time for another transfusion. I could tell that his eyelids would become a deep blue/purple and his skin color would be almost yellow. I would ask the nurse what his hematocrit level was and they’d usually tell me it was very low and the blood had been ordered. I hated for him to have these transfusion, but I could sure tell the difference once they were done. During one of the many transfusions, one of the nurses had to put an IV in Bo’s scalp. The IV ended up blowing the vein and he had a big discolored bruise-looking mark on the side of his head. One other time that they tried to place an IV in his scalp it also blew. I now warn any nurse wanting to use his veins on his scalp that they will blow and I’m always right. They will still try it, though, and then I get to tell them "I told you so." Finally, it was decided that they would insert a central line IV, which is a permanent type of IV, that is inserted into the arm. Because Bo’s skin was so thin and there was really no way to tape the IV on really well, they decided to insert it into his artery in his neck. This was a minor surgery, but I was still scared. The doctors performed this surgery in the NICU and it went without a hitch. He kept the central line in for about 3 weeks. When they weren’t able to able to obtain any blood from it, the central line was removed. He has a small scar on his right breast (where the central line was put in and then threaded up into his neck) and another small scar on his neck. With time, these scars should barely be noticeable.
Bo gained weight very slowly. The doctors finally decided to put him on MCT (medium chain triglycerides) oils to help him with his weight gain. Slowly, it started to help and he finally hit the 2 lb. mark on September 26th - about a month and a half later. I brought in a star with his weight and the date and threw a "2 lb. Party." A little over a month later, he hit 3 lbs. and again, we threw him a "3 lb. Party." He got another star hung over his bed with the statistics of that day. On November 18th, he finally got to the 4 lb. mark and we threw another party. This time it was his "4 lb. Party." I had friends from work write sayings and sign their names on his 4 lb. star for him to read when he gets older. Each time my mother and I would print up a cute sign and post it over his bed. Fellow preemie parents and even nurses always said they enjoyed going by Bo’s bed to read his newest signs.
Bo was first intubated on August 14th and was on the High Frequency Ventilator (HFOV) for 5 days. He was then changed to the Conventional Mechanical Ventilator, which he stayed on for almost a month and a half. On September 11th, they extubated him and let him try the nasal CPAP (continuous positive airway pressure). They did this very early in the morning so I wasn’t able to see his face for that first time. However, one of my very favorite nurses took three polaroid pictures of him without all the tubing and tape all over his face. He lasted a few hours and then started de-satting (blood oxygen levels went lower than they were comfortable with). They intubated him again and he stayed on it until September 26th, when he was successfully extubated again and started on CPAP. Bo started Decadron (steroid) due to recurrent bradychardia (forgetting to breath for more than 15 seconds). He was weaned from this steroid about a month later. On November 8th, Bo was changed to nasal cannula. He kept pulling the cannula from his nose and they decided to let him try breathing with no assistance. He had to be restarted a couple of days later due to apnea with desaturation episodes and was finally able to breath without assistance about four days later. Since he was on the vent for almost three months, he was diagnosed with chronic lung disease.
Bo had many monitors that he was hooked up to. They were for heart rate, breath rate and blood oxygen levels. The alarms went of quite often and at first, scared us to death. We finally became used to them and knew what to look for whenever an alarm went off. Sometimes it was very hard to not just stare at the monitors and watch the numbers. My husband was the worst of all of us. One of the nurses came up to us one time and told us to watch Bo, not the monitors. She said, "You can tell more from looking at the baby than you can the monitors." Apparently, it was very common for the fathers to pay more attention to the monitors, because they understood machines and felt they had more control if they were able to keep an eye on the graphs and numbers.
Bo had many alarms for apnea
and bradychardia. At one point, he was taking medicine (Doxapram
and caffeine) to try to regulate his breathing and heart rates. He
was finally able to come off of those and then had to be restarted on caffeine
because he had trouble after an MRI, in which he had to be sedated.
He did come home on caffeine and we were able to discontinue its use after
a month. He was diagnosed with very minor Retinopathy of Prematurity (ROP),
which is when the blood vessels in the back of the eyes are damaged from
the high oxygen. He had many eye exams, even once he came home.
At the very last exam, it was determined that it had resolved and he didn’t
have any visual impairment.
Wanna Kangaroo?
One of my happiest days during
his 104 day stay, was when they allowed me to "kangaroo" him. Kangaroo
care encourages skin to skin contact. I was able to lay Bo on my
bare chest with blankets draped over us. I was so thrilled when we
did this. Bo handled it very well. His breathing became very
regular and his body temperature raised several degrees, which is a good
sign that he’s tolerating it. There were times that he didn’t tolerate
it very well and it made me so sad. I felt that he was rejecting
me and had to be taught that it didn’t have anything to do with me.
The problem might be that he was overstimulated, tired, or any number of
things. I couldn’t help feeling bad when this did happen, though.
The kangarooing was increased to twice daily during the month of November
and I was so happy. He was tolerating it well and gaining weight
much better.
Finally the day came that we were able to bring him home. We "roomed in" at the hospital in a room that was directly across from the NICU. We were given training on his apnea monitor that we would take home with Bo. My husband and I were so nervous. We were afraid that something would go wrong and they wouldn’t let us take him home. We were afraid that we would do something wrong that might damage him for life. We knew how well taken care of he was in the NICU and now we were responsible!! I felt fear like I’ve never known fear before!
Bo was brought to the room
and the nurse left. My husband and I kept "fighting" over which one
of us could hold him. I would lay Bo down and my husband would go
pick him up. I’d tell him that Bo needed to lay in his crib and as
soon as my husband would lay him down, I’d find a reason to pick him up.
I think it was the "freedom" from the nurse's eyes that made us this way.
We could finally do whatever we wanted to do with him, whenever we wanted.
We hardly slept a wink that night with each of us getting up a couple of
times to check on him. His alarm never did go off that night, which
was really a blessing in disguise. If it had, we probably would have
told the doctors to keep him a little longer. NOT! The next
morning, Bo was discharged. He weighed a whopping 4 lb. 8 oz.
He also got his picture taken by the newborn baby photographer. The
nurse then put me in a wheelchair with Bo in my lap. She wheeled
us to the NICU and we said our goodbyes with lots of hugs and kisses and
well wishes. One of the nurses took a picture of our "going home
day" to be put up on the "graduates" picture board. She then wheeled
us down to the car with my husband taking pictures. We were so happy
that day. All we’d ever wanted, dreamed of and wished for had finally
come true. We were going home.
I Wanna Bite Your Finger
Bo has now been home almost
7 months. He’s had one small cold, which was really just nasal stuffiness.
He had five Respigam infusions from the months of November to April to
combat RSV. He’s been gaining about one lb. a month. 
At
this time, he weighs around 15-16 lbs. and is about 24 inches long.
He loves to eat baby food and his favorite is ‘sweet potatoes and corn’.
He’s a very happy and healthy little guy. He’s got his two bottom
teeth and is currently working on his two canine (dracula) teeth.
He’s probably going to have a really strange-looking smile soon!
Developmentally, he’s doing well. He rolls from stomach to back and back to stomach. He still cannot sit up without support, but we are currently working on that. He babbles and says ‘da-da, geh, nine-nine-nine (when he’s really mad) and a couple of others. He does have tightness in his hamstrings and heel chords, so Early Intervention comes out twice a month for therapy. EI tells us that he’s ahead developmentally in his language skills and fine motor skills, but behind in gross motor skills.
Bo is the light of my life. He has traveled down such a long hard road and is still the sweetest, most loving baby. He is a miracle and it is such a joy and gift to watch him grow. Although our preemie road has not yet ended, I feel that Bo has given me the strength and courage to face any challenges that might come our way.
For those of you have read this to the end, thank you. After looking over my (Bo's) homepage one day, I realized that I was giving the short and sweet version of my quest for another child. I decided to write it all down and it proved to be extremely difficult to do. I do believe that I've exorcised a lot of my demons in facing the whole truth and for you, dear reader, I hope that you've learned something about a world that many people don't know even exists. I would not wish my experience of my worst enemy and yet, it happens all too often. Due to my experiences with preemiedom and the NICU roller coaster, a friend and I have started a support group called Preemie Partners. If you're so inclined, please stop by and visit the website.
Cori Smith
6/12/98
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