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Gavin In The NICU

Gavin lived in the University of Utah Hospital's NICU for the first 5½ months of his life.

Gavin was born at 3:05 am On March 15, 1997. He weighed 1 lb, and 6 oz. He was 11 inches long. It was as though he knew that there was something wrong, and that he had to be born to survive. As the doctor handed him through the window from the delivery room into the NICU, he would finish what he had started by moving into that birth canal all on his own--his struggle to live.

Gavin was in respitory distress (he could not breath on his own). He was resuscitated, and intubated.They started him on iv antibiotics, and surfactant to help his immature lungs.

I was able to see Gavin for the first time an hour after he was born.Adam had been to see him while they were cleaning me up. He said that he got to touch him, and that the baby (we had no name yet) grasped on to his finger. He said it was as though he knew that Adam was his dad, and Adam said he was strong, and a fighter. They wheeled my stretcher right in to the NICU. He was the first bed in room 1 (the room where the most critical babies were). He was so tiny, just a little longer than the length of my fingers. His skin was dark red, and see-through because it was immature. He was laying on what they call a warming table, inside a rectangular plastic box, which was covered with saran wrap. He was naked except for his very tiny diaper, and many tubes and wires. Bright blue tubing ran from a ventilator down into his mouth, and pumped air into his tiny lungs. He wore eye coverings to protect his eyes (even though they were still fused shut) from the bili lights (to help with jaundice). He had many ivs already, and a central line running into his belly button. He looked so sick. I was told I could touch him, but I couldnt; I was so afraid. I told him how much I loved him, and told him I was there and he was going to be ok. Inside of myself, I wasnt so sure. We were told that the first 24 hours are the most critical, and that if he made it through the night, then there would be a greater hope that he would survive.

Gavin made it through the night. The next day I was released from the hospital, and found myself saying good-bye to him, not knowing if he would be alive the next time I saw him.Leaving him there was the hardest goodbye I have ever had to face. Because Kane was so sick with the Chicken pox, and Adam was not handling things well, I was not able to see Gavin again until he was 4 days old. That was so hard to be away from him for so long, but I probably called 20 times each day to see how he was doing. On his 4th day of life, he was given his name. When Gavin was a week old, he developed an infection. They didnt know what it was, but suspected sepsis. They did a spinal tap to see if it was sepsis or spinal meningitis. It turned out to be pneumonia. We almost lost him. He was treated with a course of very strong antibiotics.

Gavin at 1 week

After about 4 days of the antibiotics, Gavin started to do better. When he was 2 weeks old, I got to hold him for the very first time. We used a technique called skin-to-skin, or also called Kangaroo care. In this way, the baby is put right onto your bare skin. This keeps the baby warm--as warm as he would be on the warming table. I was able to hold him for 10 minutes, and this was truly one of the best ten minutes of my whole life. Gavin and I felt as one again. His tiny body just molded right into my own. I savored every second of it, and catalogued every feeling and sensation in my soul, so to never forget how it felt to hold my baby~from the way he smelled to the way his tiny fingers rested upon my chest. This was a very healing experience for both myself and Gavin. All day long I felt as though I was walking on clouds!! I was finally able to hold my son!

The first time I held Gavin

At about 2¼ weeks, they started Gavin on feeds. They fed him my breastmilk through a tube called a gavage tube. This tube went into his mouth, and down into his stomach. He tolerated his feedings well.

When Gavin was 4 days old, he was diagnosed with a PDA (patent ductus arteriosus).The ductus arteriosus is a structure of the heart which stays open while the baby is in the womb. This is so because the mother is breathing for the baby, and the blood circulation bypasses the baby's lungs, since the mother is breathing for the baby. In a full term baby, the mother's body sends a hormone to the baby before the baby is born, which causes the ductus to close. In preemies, the hormone has not yet been sent to the baby, (since the baby was not supposed to be born yet), and so the ductus remains open.Babys are at first treated with a drug called indocin, which can close the PDA. Gavin was treated with indocin at 4 days old. When he was three weeks old, they did an echocardiogram (like an ultrasound), and the pda had not closed. They needed to surgically close it.At this point they discontinued his feeds. A day later, Gavin had heart surgery called a PDA ligation. The surgery took a little over an hour. The surgeon made an incision on the left side of his chest wall under his arm (under his shoulder blade, and around the side). His ribs were spread apart,and the lungs moved aside. The surgeon then placed a clip around the ductus to tie it off. Gavin also had a chest tube inserted to drain air from the chest cavity. Gavin made it through the surgery just fine. He was so brave.

Following the surgery, Gavin got an infection in his incision called cellulitis (a staph infection). He was treated with an antibiotic for 3 days. When Gavin was just over a month old, I was able to hold him for the second time, now that he was doing better. Adam was able to hold his son for the first time. At this time, they also restarted his feeds. Gavin loved being held. His heart beat was always steady, and his oxygen saturations were at a good level.

When Gavin was a little over a month old, they moved him to an isolette (incubator). This maintained his temperature, and protected him from the sounds and light of the nicu.When Gavin was a few days old, I made a tape of myself talking to him quietly, and reading him stories and poetry, and softly singing. They put this inside of his isolette, and would play it to him at least once a day, since I could not be there all of the time. (if he had been my only child I would have been there ALL of the time, but Kane needed me too, and I could only be there while Kane was at preschool, or at night for an hour or two while Adam stayed with Kane). Gavins favorite songs today are the ones that I sang to him on that tape.

When Gavin was 2 months old, they took him off of the ventilator (or should I say he took himself off!!They had given him a course of steroids to help, and it wasnt time yet, but one day he just grabbed hold of that tube, and pulled it right out! This was at least the third time he had done this.) They decided to leave it out. They hooked him up to CPAP. This stands for continuous positive airway pressure. This is a really strange looking contraption. It kind of velcroes around the head, and has huge nasal prongs which really distort the baby's nose. The CPAP mechanically pushes an air/oxygen mixture into the baby's lungs to keep the air sacs open after each breath, reducing the effort the baby must make to breathe. Gavin was on CPAP for 7 days. For a couple of days after he came off of the CPAP, he was had a head box, or oxygen hood placed over his head. This encloses the baby's head in warm, humidified, oxygen enriched air for the baby to breathe.After Gavin's head box came off, a nasal cannula supplied his oxygen. It was so great to finally see what may baby really looked like!!(without tubes and tape attached to his face).

About a week after Gavin came off of the vent, Kane was able to see his brother for the first time. He seemed really excited, and we really made a big deal out of it. I held him up to the isolette, and Kane looked in with much interest. After just about 2 minutes, he said, "Im done now." Afterwards, he seemed really happy. Now I think the confusion was over for him. He really did have a brother, and he was able idenify with that now. After this visit, he showed a lot more interest in Gavin, and how he was doing.He started talking about him all of the time, and about when Gavin would come home. He also talked about him a lot at preschool. Every time after that when Kane was able to visit, you could literally feel them bonding.

Kane holds Gavin(4 mos old)
A few days after Gavin came off of the ventilator, we started to learn nursing together with the help of the occupational therapists. Gavin did so great! He latched on better his first time than Kane ever did. We practiced as much as we could, and the nurses were not allowed to bottle feed Gavin until we had nursing well established. He continued to use a feeding tube so that when he got too tired to suck, the nurses would finish his feeding with the tube. The tube was now placed into one of his nostrils, and down in to his stomach. This kind of tube is called an NG tube, which stands for nasal gavage. At this point it was really nice, because I could take Gavin to a nursing room, and we had privacy to nurse, and to get to know each other better. I was already adept at all of his monitors, and learned quickly how to hook him up to the portable O2 tank. I also learned how to do his gavage feedings, so when he was tired from nursing, I would gavage him. It was great because now I was really able to help take care of him. I changed his diapers, and took his temp when I was there, and bathed him...I was finally having the chance to really be his mom, and it was wonderful.

At three months old, we got some bad news. Gavin had developed ROP. This stands for retinopothy of prematurity. It is an eye disease that preemies get, which at its worst can cause blindness. This is an area of prematurity that there is still much unknown about.Babies who are on supplemental oxygen before their eyes fully mature (vascularize) are at the highest risk.This disease affects the retina of a preterm baby's eye. It involves rapid growth of blood vessels that can lead to bleeding, and scarring of the retina. It can cause retinal detatchment, and blindness if it is severe. Baby's who are on O2 are closely monitored. It is important that their oxygen saturations are not too low for their respitory problems, but also not too high, for the risk of ROP. Some babies require laser surgery to remove the scar tissue to keep from damaging the retina.Im many, but not all cases this surgery is successful. In some babies, the ROP will regress on its own. Gavin had what they call stage 3 prethreshold ROP in his right eye, adn stage 2 in his left. The stage 3, if it had progressed into the next zone would have required surgery. Miraculously though, Gavin's ROP regressed on its own. We were very lucky. All babies who have had ROP however, must be followed yearly by an opthamologist until they in their early twenties, for they are at a high risk for later retinal detatchment.

At four months old, Gavin graduated to an open crib, because he was able to maintain his own temperature. He was now what they call a "feeder/grower". At this time, his big brother Mica came to see him for the first time(he lives with his mom, about 5 hours away), and also his Uncle Ralph, and cousins David and Joanna drove all the way from Philadelphia (New Jersey actually) to come and see him. That was a very busy week. Everyone had a great time together, and especially spending time with the miracle baby.

Mica and Gavin

Kane and Gavin

At about 4¼ months, Gavin had his ng tube removed. He was totally on bottle and breast feeds. He was growing great, and we were waiting for his eyes to fully vascularize, so that he could come home.

At five months old,they moved a crib into the unit so that Gavin would have more room and stimulation. We had so many toys and clothes from home in his great big bed! Pretty soon afterwards, Gavin got very sick again. He contracted spinal meningitis. At first, they just thought it was an ear infection. As they held him down to look in his ears, he was fighting them really hard. I made a comment to the nurse practitioner (my favorite). She saw Gavin through a lot of his battles. I commented that it was lucky that he wasnt this strong when she had to do his spinal tap (lumbar puncture) months ago, because that would have been impossible. She really didnt respond to the comment, and I immediately knew that there was something wrong. They suspected an infection. We were lucky to have a great resident on that day (it was a Sunday). She ordered a huge round of tests including the lumbar puncture. Gavins spinal fluid was tested, and it had an elevated white count in the spinal fluid, indicating spinal meningitis. He was taken off of feeds, and put on the big gun iv antibiotics. We never did find out if it was bacterial or viral meningitis. Since they caught it so quckly, and got him immediately on the antibiotics, none of the cultures grew out. After about 2 weeks, he was back to normal--back on full feeds, and just waiting for his eyes to mature so we could go home.

On August 28, I got the best voicemail message I have ever had. It was our favorite nurse practitioner telling us that Gavin had his eye exam, and his eyes had fully vascularized, and he could come home!!! That evening, Adam stayed at home with Kane, and Kane and Gavin's Grandpa Steve, and his wife Marylyn, took me to get Gavin. As we left the nicu, we embarked on a whole new world for Gavin. He was about to experience life outside of the nicu, and all of his firsts. His first ride in an elevator, his first breath of fresh air, his first sky, his first night breeze, his first sunset (and it was setting as we left the hospital, and was one of the most beautiful sunsets I have ever seen!), his first car ride.....and I didnt take any of these firsts for granted, just as I will never take anything my children experience for granted ever again. When we got home, Kane and Adam were waiting. We were nervous, but extremely happy to finally have him home with us. In Gavins first 5 minutes home, our best cat Tivers dropped the biggest grasshopper I have ever seen on Gavin's belly as a welcome home present. This is where our journey through the nicu ended.(and this has seriously been the Readers Digest version!! ~~believe it or not!)

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