Morgan’s Story

In early March, 2001, just two to three weeks after we were married, Chad and I found out we were going to have a baby who would be due November 7th.  We were both surprised, but ecstatic because both of us wanted to have a baby soon...we just didn't realize it was going to be that soon after we got married. 

My pregnancy was rough.  I was sick all the time.  I never had morning sickness, I was just nauseous all the time.  In early June, we went for our first sonar and found out we were going to have a baby girl.  We were thrilled!!!  We didn't think much about the fact that the sonar showed that the baby was measuring smaller than average for her gestational age.  I was supposed to be at 20 weeks and the test showed her at 18 1/2 weeks.  My doctor said that should be nothing to worry about and she didn't change my due date. 

In July I started swelling really bad.  I was starting to get concerned about it, but thought I would just talk to my doctor about it at my next appointment at the end of the month.  On July 20th, a Friday night, I was taking a bath and I started feeling really dizzy and light headed.  I called for Chad and he came to help me out of the tub.  I told him what I was feeling, and because he’d had blood pressure problems in his past, he said it sounded like my blood pressure was up.  We called the doctor on call and she said that blood pressure problems at 24 weeks were unheard of, but if it would make us feel better, we could go get it checked at the local fire station.  We went to the fire station to get it checked and it was 163/93.  The medic at the fire station said we should go to the hospital immediately because they don't like pregnant women's blood pressure to be higher than 140/90.  We called the doctor on call back to tell her we were on our way.  She told me not to panic, that many times people go to the fire station and get their blood pressure checked, but by the time they get to the hospital, it is fine.  I didn't panic.  As a matter of fact, when we got to the hospital, I told Chad to just park in the 30 minute parking area because I knew we wouldn't be there longer than that.  When I got to Labor and Delivery, they checked my blood pressure again and it was 151/110.  They gave me a gown and told me to take off all my clothes and put it on.  I told the nurses I thought they were getting a little bit carried away because all I was there for was to get my blood pressure checked.  They told me with a blood pressure that high, I wasn't going anywhere until I delivered or until my blood pressure came down. 

About 2am the next morning Chad and I were awakened by the nursing staff rushing into the room.  They started an IV and put me on oxygen.  When I asked them what was going on, they said that they had lost the baby's heart rate on the fetal monitor.  They found it again, but I had to lie very still so that they could keep it.  Throughout the next four days, we went through this, my blood pressure was not going down much and they would lose the baby's heart rate on the monitors several times an hour.  They started giving me steroids to help speed Morgan's organ development in case I did deliver early.  Every ultrasound they did during those four days showed that instead of 25 weeks, she was only 23 1/2 weeks.

Finally, on Wednesday, July 25th, things started to stabilize.  I was moved from Labor and Delivery to a regular room and we thought I was just going to have to stay on bed rest for the rest of my pregnancy.  I remember that day all I wanted was a shower and to be left alone to sleep.  I took a shower, Chad and my mom came for lunch, and when they left, I went to sleep.  I woke up about 2pm to my doctor sitting at the foot of my bed and I knew by the tone of her voice when she said "We need to talk" that it wasn't good news.  She said that the blood tests they had run that morning showed that my liver and kidneys were starting to shut down, which meant they were going to have to take the baby immediately.  She told me to get on the phone and call my family and to plan for a 5pm C-section.  That was the most alone and most scared I think I've ever felt.  By 5pm, all our family was there and I was back in a Labor & Delivery room.  The neonatologist came in to tell us all the risks and odds that were at hand for having a baby at 25 weeks.  After he finished, Chad's mom said a prayer and I remember the words "we're putting this in your hands, God" and I remember feeling a weight lifted off of me when those words were said. 

Morgan Ashley Prince was born at 5:43pm on July 25, 2001, weighing 15 ounces and 11 inches long.  I do not remember much of that next week.  I do remember that Chad and I both just pretended for the first few days that it hadn't happened.  I think we were trying to make ourselves numb so if she didn't make it, it might not hurt so bad.  She made it through the most critical time, the first 24, 48 and 72 hours.  She was, as far as they could tell, fully developed with the exception of her lungs.  She was placed on two ventilators, a pressure supported ventilator and a “jet” ventilator.  The jet ventilator continuously pumped air in and out of her lungs while the pressure ventilator assisted her with the breaths she actually was able to take on her own.  The jet ventilator was necessary to keep lung damage, which is a side effect of prolonged ventilator dependency, to a minimum.

I found out after I went home that the condition I had has several names.  It can be called Pregnancy Induced Hypertension, pre-eclampsia, toxemia, or HELLP Syndrome.  In any case, it is a condition where your body is trying to fight off what it believes is an infection, that infection being the baby.  The only cure for it is delivery.  Most women who get it develop it in their eighth or ninth month of pregnancy.  I also found out that the next steps of progression in the disease past what I experienced are convulsions, coma and death.

I went home from the hospital on July 31, 2001.  I remember just sleeping the entire day.  Around 6pm that night, we got a call from the neonatologist that she was having problems and she was at risk for not making it through the night.  Again, Chad and I, along with all our family, rushed back to the hospital.  The problem was that her lungs were so underdeveloped that she was having a hard time getting oxygen to her blood.  Without enough oxygen in the blood, the other organs start to shut down.   They like for the oxygen saturation levels to stay between 90 and 95 and her's were dropping into the low 70's and high 60's.   It had gotten to the point where the doctor had done all he could do and it was a matter of sitting, waiting and praying.  The doctor even talked to us about a do not resuscitate order if she were to code.  Chad's father's pastor came to the hospital that night and we stood by the bed side and said a prayer.  I remember him saying "Lord, we're asking for a miracle right now" and I just broke down.  When he was finished, we just stood there looking at her and I said "If God is going to take her, I'd rather him just take her now and not let her suffer".  About an hour later, her oxygen saturation levels started going back up.  They let us stay the night in one of the parenting rooms and I remember going in to check on her about every hour.  At 3am, I went in and the monitor said her oxygen saturation level was 90.  I rubbed my eyes, looked at the doctor and the nurse and asked them both "Does that say 90?"  They smiled and said it did and we were thrilled.

I started back to work in mid-August.  At that time, I decided to start sending out an email each day updating everyone on Morgan’s progress for that day.  This eliminated the need to tell the same information over and over again all day long and gave everyone fresh information just after I received my update from the doctors.  I kept a journal of these emails because I knew that one day I would be able to show it to Morgan and show her just how blessed she is.

The next roadblock we hit was when she started feeding for the first time.  She had been feeding for about 5 days, and I remember calling the nursery on Sunday morning before church to check on her.  The doctor got on the phone and told us that they thought she had an intestinal infection called Necrotizing Enterocolitis (NEC), this happens when ecoli bacteria grows in the blood and it causes the stomach to swell very badly to the point of possibly perforating the intestines.   The doctors told us that she was showing all the symptoms of having this infection and that babies as small as she was don't normally survive it. There was no way to tell for sure if that was the infection she had because to determine that, they would have to do an endoscopy, and at her size, she could never tolerate that.  They started her on heavy doses of antibiotics and stopped her feedings.  About a week or so later, her blood tests showed the infection had cleared.

A side effect of antibiotics is the risk of yeast infections.  Morgan then developed a yeast or fungal infection that they first found growing in her ventilator tube.  They changed out her tube and started her on heavy antibiotics again for this infection.  This one was just as serious as the other one, and they told us that she was at risk for not surviving it as well.  This infection overtook her entire body.  It got into her spinal fluid, causing meningitis. 

They decided that the most important thing for Morgan was to gain weight and get good nutrition, so they started feeding her again.  Again, about five days after they started her feedings, she started showing signs of having NEC or ecoli again.  They stopped feeding her and put her back on antibiotics for that. 

Morgan, by this time is almost a month old.  I stood by her bedside one night and I prayed.  I asked God to take all of this sickness off of her and put it on me because I knew I was stronger and could fight it better than her.  Over the next few days, she started getting better and better.  The next week,  I was in the emergency room with pains in my side.  They determined I had a kidney infection.  I went through a round of antibiotics, but they didn't clear it up, so I went to my OB and she ran some more tests.  She determined I had a bacterial infection, but she didn't know what it was.  She gave me another round of antibiotics that cleared it up this time.  All this time, Morgan is getting better and better, until finally the ecoli is gone from her body.  I went back for my follow up visit with my OB and found out that the bacterial infection I had was ecoli.  I was stunned.  I have never seen God answer prayers in such a way that he has in Morgan's life.

By October, the yeast infection had cleared from her blood and her spinal fluid, but an ultrasound showed a ball of yeast had developed in one of her kidneys.  They kept her on antibiotics for several more weeks to see if they could get it cleared up.  They were able to get her feedings going again, and this time they were successful at getting her to full feedings.  She got to move out of the incubator into an open bed, and I got to hold her for the first time all in late October, just before she turned three months old.  We also found out at this time that because of the fact that she had been on IV fluids for so long instead of getting nutrition through formula, that she had a condition called rickets.  This is where the bones are very fragile and can break just by her moving around in her bed.  They found in one of her chest x-rays that her left leg had been broken at some point and was starting to heal back.  They put her in a brace for about two weeks and showed us how to handle her so her bones wouldn't break as easily.

By mid-November, when the ball of yeast in her kidney had not cleared up, the doctors said we had two options, neither of which had been performed on a baby her size.  We could take her to surgery, cut the kidney open and cut the ball out of her kidney, but that would require her to be transported to another hospital for the surgery, then transported back to Brookwood post surgery and the chances of something terrible happening during the transport were extremely high.  The other option was to try putting in what is called a nefrostomy tube, which would be inserted through her skin directly into her kidney.  This would allow them to flush antibiotics directly into the kidney and they believed that would clear it up.   This procedure had NEVER been performed in our area.  The neonatologist found a radiologist at the hospital where she was that was willing to perform this procedure IF he thought he would be successful.  He told us he would not do anything if he didn’t think it would be successful.  We agreed to let him try and it worked!  The nefrostomy tube stayed in for 3 1/2 weeks, before Morgan decided to remove it on her own, and it did its job.  The ball of yeast was completely removed from her system.

We were then told that if Morgan was able to come off the ventilator and come home, she would still require oxygen for a while at home.  We knew at that point, work for me would not be an option, so I decided to go ahead and resign so I could concentrate more on Morgan and getting her better

The next step toward home was to get her off the ventilator.  They started in December planning attempts to get her off the ventilator.  They began giving her steroids to help strengthen her lungs and on December 31st, they were able to keep her off the ventilator for 15 hours.  She had been off the ventilator for a couple of hours at a time before, but never for this long.  They called in a lung specialist from Children's Hospital to come and look at her x-rays and her chart.  He recommended that she have a tracheotomy tube put in because he didn't feel like she was going to be able to come off the ventilator any time in the near future.

  The first week of January, she was moved to Children's Hospital.  The move was very traumatic for her.  She spent the first week there sedated much of the time because she had been so traumatized.  A week after her arrival, she was sent to surgery to get the tracheotomy.  Two weeks after that, she was on such good ventilator settings, that they put her on an at-home ventilator.  That same week, she went to surgery for a gastrostomy tube and fundoplycation.  The gastrostomy tube is a feeding tube that goes directly into her stomach and the fundoplycation is a procedure where they wrap part of the stomach around the esophagus to keep her from having reflux. 

The first week in March, she was finally able to move out of the NICU to the Pulmonary Care Unit.  There, they monitored her ventilator settings and tried to put her in an environment closer to a home setting to see how she would do.  On March 27, 2001, we heard the words we had been waiting to hear for 8 months.  The doctor said she is ready to go home. 

We started our six weeks of training on April 30, 2002.  It wasn’t as hard for me as it was for Chad and my mom because I had been there every day learning how to take care of her.  What was hard for me was sitting back and letting them take care of her without chiming in to give my two cents.  After our six weeks of training, we started a four day “rooming in” period, where Chad and I are in a hospital room with Morgan for 96 hours straight and we have to do everything to take care of her without any help from the nurses.  The nurses are there in case we need help, but we are supposed to be able to do it all on our own.  I did not realize until we started the rooming in how much there was to do for her in a day’s time.  I had to get a day planner just to keep up with her medication, breathing treatments, feedings, trach maintenance, g-tube maintenance, ventilator maintenance and all the doctor’s appointments we will have.

She came home from the hospital on June 10, 2002.  We had to have 24 hour in home nursing care for the first two weeks after she came home, then 16 hour a day nursing care for months and months after that.  At first, I was angry about the doctor requiring us to have nurses to help take care of her.  She was my baby and I had missed out on taking care of her for almost the first year of her life.  I wanted to do it all myself.  I didn’t think I needed anyone to help me.  Boy was I wrong!  Taking care of a child with special needs is more than just physically exhausting.  It is mentally and emotionally exhausting as well.  I suffered from depression for a while after she came home.  Logically, you would think that by that time I didn’t have any reason to be depressed, but the reality of everything that we had been through had just started to sink in and it was almost like a post traumatic stress syndrome.

We celebrated her baby dedication and her first birthday on July 28, 2002.  I invited everyone who had taken the time to pray for her over that year (her story had spread by that time all across the country – even to other countries) to come to her party.  The support we received was amazing.  People really lifted us up and helped us through the times when we were unsure of what would happen.

Morgan started weaning off the ventilator in early 2003.  She was doing great, however, she had a couple of bouts with pneumonia, which caused her to have to start weaning all over again.  Finally, in the Summer of 2003, she was off the ventilator all the time while she was awake.  When she went back to visit the doctor in September, he agreed to let her start weaning off at night.  She has not been back on the ventilator since.   They set up a new schedule, which included weaning off the diuretics and any oxygen support she was on in the next two months, followed by an in home sleep study, which would monitor her oxygen levels throughout the night off of oxygen.  She passed with flying colors.  She was released from the home ventilator program in December, 2003.  In October, 2003, she saw the ENT, who said as soon as she was released from the Home Ventilator Program, she would need to be released by cardiology for the surgery, then they could get a tentative surgery date for taking out the trach.   She saw cardiology on December 29, 2003, and he released her to have the surgery. 

Unfortunately, on December 24^th, she had already started getting sick.  Even though she never ran fever or acted like she was very sick, by the evening of December 30^th, I was unable to get the oxygen levels in her blood above 90 – the doctor likes them to stay in the high 90’s (100 is the highest it will go).  They told me to bring Morgan in to the emergency room, where x-rays and blood work showed that she had bronchitis, pneumonia and the flu.  After a week in the hospital, she was released with no restrictions.  However, because of the sickness, anesthesia said they would not do the surgery until she had been out of the hospital and well for 6 weeks.  We got a follow up appointment to see ENT on March 1^st and a tentative surgery date of March 30^th. 

At that time, I decided to take the “baby in the bubble” approach with Morgan.  I quit taking her anywhere unless it was to the doctor.  After a few weeks of keeping her in the house, she learned how to take her trach out.  She took it out about 4-5 times in a week, so I decided to see if they could bump her surgery date up to closer to her follow-up with ENT.  They agreed to do the surgery on March 2^nd.  Unfortunately, she got sick and the surgery had to be delayed. 

After two delays, the surgery was finally done on May 18, 2004.  She was in PICU paralyzed and sedated from May 18^th through May 25^th.  She was finally moved out of PICU into a regular room on May 26^th and was able to come home on May 27^th.  She went through some pretty severe withdrawals from the medication they gave her to paralyze and sedate her, which caused her to be very lethargic for about a week or two.  Eventually, she came around to her old self.

She started daycare on July 12^th and celebrated her 3^rd birthday with a pool party at the YMCA on July 24^th.  It was very exciting since she had not been able to swim before the trach was removed.  She loves the water!  Everyone had a blast.

At three years old, she shows no signs of any long-term side effects from her struggle other than the scars on her body and the fact that she has to wear glasses for near sightedness. She is as smart as she can be (even though I’m her mom and I’m a little prejudiced). She knows all of her colors & shapes, she can count to 10, she recognizes the numbers 1-10 by sight, she knows the majority of her alphabet and can recognize a lot of her letters by sight. They have tested her for any genetic disorders she might have as a result of all her medical problems and they have all come back negative. She will have to be followed by a lung specialist for several more years until they are comfortable with her lung development. She does still have her g-tube, but she is eating and drinking a lot on her own. We hope to get her to eat enough to have the feeding tube removed in the coming months. Other than that, she is a happy, healthy three year old – as normal as can be. PRAISE GOD!!!