Morgan Trotter
TrachKid Profile
-
Morgan Lynn Trotter
I went to the hospital on 11/4/00 to have a stress test done. In the hospital the test showed that I was having contractions. I was due to have my child in another week and my doctor wanted to induce my labor. I was very unsure about this but, went ahead and gave the doctor permission. I was told my child would be at least seven pounds (bigger than my other two who were only 6lbs 0oz and 6lbs 6oz). I didn't have another ultrasound that day. The last ultrasound I had was when I was 19 weeks pregnant which showed that everything was fine. I had no idea what I was about to face would be the hardest and most challenging thing in my life.
Labor was short (about 45 minutes of hard labor). My nurse didn't believe me when I told her that the baby was coming. I delivered Morgan Lynn Trotter at 1:14 am on 11/5/00 on the hospital bed with my husband Jerry and my mother Linda by my side. The nurse and my doctor came running in my room. The nurse picked my daughter up and made a comment to another nurse that my daughter didn't look over 35 weeks gestational age. She said she had preemie skin. According to my last ultrasound I would have been 39 weeks. My daughter only weighed 4lbs 14oz and was only 18 1/4 inches long. They let me see her for a few seconds before they took her away to the nursery. My husband went with them and when he came back he told me that Morgan was having trouble because she swallowed some fluid when she was born. I could do nothing but, cry. I felt like I had done something to cause this. I had no idea that things were about to go from bad to worse.
I went down to the nursery to see my beautiful baby girl. She was hooked up to all this machinery to monitor her oxygen and heart rate. They were giving her oxygen. the nurse was about to feed her some fluids and Morgan could not swallow it. She began coughing and gagging. they were going to run a feeding tube through her nose but, when they did it came back up through her mouth. So they decided to go in the mouth with the feeding tube but, it just would not go. They called a specialist in to check her out and they did X-ray's. You could see on the X-rays that Morgan's Esophagus was not attached and that it was sacked at the top. They informed me she would have to be transferred to Syracuse Hospital to under go surgery to have it repaired. Morgan was transported the same day she was born. I checked myself out of the hospital so that I could be with her. When we got to Syracuse Hospital they ran all these test on her. Morgan was to undergo surgery the next day. They told us that Morgan had what was called Tracheal Esophageal fistula (TEF). She underwent surgery around 6:30 PM on 11/6/00. Surgery was performed by one of the greatest doctors I believe, Dr. Linda Nicolette. Morgan spent two weeks in Syracuse recovering and learning how to eat. When we brought her home I really felt the worse was over and things would start to get back to normal.
In December, she was taken to our local hospital. She was having trouble breathing. At the hospital they told us they were unsure if this was due to the TEF repair or not and that they were going to call Syracuse. Her oxygen was only reading 74% and they told us she was labor breathing. By morning she seemed to be doing much better. I decided to go home and get a shower in case we were going up to Syracuse. When I got home there was a message to call the hospital. When I called they told me that we needed to get to the hospital and that they were performing CPR on our daughter. She had stopped breathing. We got to the hospital and they were still in her room. The doctors told us they got her breathing again and that Syracuse was on there way to transport her to there hospital. That we had to wait outside because they were venting her. They informed us that a surgeon was called down and they had to cut open Morgan's ankle to get a vein because the other vein was no good and they couldn't get one. They ended up cutting both her ankles before they got a vein to run the IV. In Syracuse, they told us she had a viral infection. She tested negative for RSV. She was vented for 6 days. On the 6th day they took her off the vent only to have to put her back on it due to she stopped breathing again. ENT was called and she was taken to the operating room to be checked. They told me she had tracheamalacia but, it wasn't that bad and they didn't feel she needed to be trached at this time. They would follower her through checkup's at there clinic. She went home after two weeks.
Then in January she was admitted for blue spells. The GI doctor was called in and a pH probe test was done. They told me that normal was a 3.2 and Morgan was a 40.2, which was severe Reflux Disease. They let her go home after a week with an apnea monitor. Morgan continued to have blue spells and each time they would get worse. In February, Morgan stopped breathing at our home. I began CPR while 911 was called. She started breathing again before ambulance arrived and the hospital said she aspirated into her lungs. They informed me to get a hold of ENT just to have her checked out.
Morgan by now has had many hospitalizations for respiratory distress and cyanotic spells especially during feeding. On 3/15/01, Morgan underwent another bronchoscopy that showed 9/10 narrowing of her windpipe. Two hours after her bronchoscopy Morgan stopped breathing. Surgery was due to be done the following day but, an emergency tracheotomy was performed. We spent a few weeks in Syracuse and sent home.
Since Morgan's tracheotomy she has had hospital stays for low oxygen. She has not had any apnea's. She has a Passy-muir valve, which at this time we are unable to use. Morgan does not seem to be tolerating it. Passy-Muir Valve will be discontinued until she goes for the bronchoscopy on October 3rd.
In September when Morgan was scoped it showed that collapsing was taking place right at the carina. We could see this affect the outer part of the Bronchia's but, until the bronchoscopy on October 3rd we are unsure if any malacia is taking place inside the bronchia's. Morgan has started to walk and has learned to push air from her abdomen to get sounds out. She is a very happy baby and at this time I feel has grown very well. She is up to 14lbs 10 1/2 oz and is 26 1/4 inches. That is a long way from her birth weight of 4lbs 14 oz. She is a very active baby with a lot of drive. She doesn't let her illness hold her back from anything. I look back at everything this little girl has gone through and thank God for her everyday. It has been a long hard road, but I would do it all over again. She has taught me so much about life and what it really means to be a mother. I am so very proud of my daughter.
Update: October 15, 2001: On October 3rd we went to have the bronchoscopy done on Morgan in Syracuse hospital. All went well NO bronchialmalacia. We found though that Morgan is aspirating into her trach at times. We went to the GI doctor to have pH probe done. We were so happy to find that Morgan went from severe Reflux to Moderate and that she seems to only aspirate when she is very upset. This was good news since I did not want her to go through surgery to fix this. Doctor said if it was still severe and the numbers were still as high or higher and no improvement was shown we would have to think about surgery. We are still scheduled to have a Barium Swallow test done to see if when she eats it's not leaking into the trach. A Sweat test was done for Cystic Fibrosis but, my feeling on this is that this will be negative. Still don't understand why she is dropping stat's and requiring O2 at times. We now have a Pulmonary Doctor to follow Morgan. Morgan is walking all over the place and is eating much better. She is up to 15lbs 7 ounces and 27 3/4 inches long. Good girl!!!!
Update, March, 2002 - I just wanted to let everyone know that Morgan has been doing very well. She is now off of Reglan for her reflux and is just on Prilosec. She is doing very well with it I must say. Morgan has little or no oxygen use for about three months. We still need to use it when Morgan gets sick but, on a normal night we have gotten lucky and the oxygen use has stopped on a regular basis. Morgan is now tolerating the PMV and is learning to talk with it. She has learned several new words like, mama, dada, hi, uh-oh, each day she is getting new sounds out. She has even learned to vocalize just as well without the PMV. She is up to 18lbs 8oz and 30 inches, which is a long way from her birth weight. The malacia is still 9/10 collapsing but, we are to go to Syracuse to the ENT on the 28th of March. We have are fingers crossed that some improvement has been made because of her growth spurt. I wanted to attach a PIC of Morgan wearing her PMV and tell all you parents that it took her a long time to get used to it. So if you are not having any luck just keep trying. I did and look at her now.
Update - August 26, 2002: Just wanted to let everyone know that Morgan has been doing very well. We will be going to Syracuse soon to get her "Special Made" trach for her. She has had no infection and other than a slight cold here and there, she has been pretty healthy. Morgan has learned to say many words and will use sign for some things. We have been able to get her off of Xopenex completely but, she still has to use Pulmocort twice a day. She did pretty well for a little while with the PMV but, soon decided that it wasn't for her. Morgan would rather plug her trach with her finger or tilt her chin down over trach when she wants to say something. We moved her up to a big girls bed a few months ago and boy does she sleep so much better. We were unable to put the frame on and we had to buy railings so that she would not fall out of bed but, it was well worth it. She hardly ever gets up in the middle of the night anymore. We lost Morgan's nurse in the end of May, she decided she needed to move on. She had been with us shortly after Morgan was trached. Her father and I are working different shifts so we have been handling things pretty well on our own. Morgan will be two shortly and it is so hard to believe. Time has gone by so fast. She is such a beautiful child with so much love. Her father and I along with the rest of the family have been so blessed to have her in our lives. I thank god everyday for giving her to me.
Update December 2002 - Morgan just had her second birthday on the 5th of November. She is getting so big! It's hard to believe that two years have gone by now. We had been working with Morgan on signs for sometime now but, she has learned to talk very well through her trach. She is wearing a Bivona trach now for the extra length due to her malacia being distal. We thought that this would take some of her speech away but, she was determined to speak and had little to no change with the new trach. I know that a lot of the things she says only a mother would understand but, there are many things (words) she is able to say with the trach that other people can understand. Her speech therapist says that she is pretty much on her age level as far as speech, so we are very thankful for that. She has problems with sounds but, I am sure any two year old does. We are scheduled to go in for another bronchoscopy (we have are fingers crossed). The last one showed no change in her condition. We are hoping and praying for at least a little improvement. I wanted to share some pictures of Morgan with you all so you can see how big she is getting. I love her very much and am so proud she is my daughter and I am her mother. I know that no matter what life brings Morgan she is very blessed to be here and we are blessed to have her in our lives. There isn't a day that goes by that I don't thank God for the gift he has given us.
Update April 2003 - Just wanted to give everyone an update on Morgan. Morgan has been doing very well even though we are being told she will have her trach for a long time. She has done well with her trach and does everything that a two year old should do. Things have gotten a little easier for her and for us these days. She can tell us when she needs to be suctioned and when she has a discomfort do to the trach (neck irritation). She has been sleeping very well through the night and only wakes up once in a while do to her cords and machines making her uncomfortable. She has been potty broke now for about 4 months and she did that very smoothly even though she still wears a diaper while she sleeps (which she should be without that soon). I wanted to share some pictures of Morgan with you all because I am so proud of her. She is such a beautiful, happy and outgoing child. I am so thankful to have her in my life.
Update, FEBRUARY 10, 2004: Hello everyone! Just wanted to update you all on Morgan. Things have been going very well for Morgan. Morgan's reflux has gotten so much better that if she didn't have a trach the doctor said he wouldn't keep her on the medication. Her asthma seems to be under control for now and we haven't had any breathing problems so far this winter.
We went up and had a bronchoscopy done in January and even though we were hoping for some good news, we didn't get any. Morgan's malacia is still really bad. She has not improved at all. The doctor told us that the slightest cough and her windpipe just totally collapses. It looks as though Morgan will have her trach for a few more years at least. I can't complain. We have been so fortunate with Morgan and all her medical problems she has had and gone through. She talks very well and without a PMV. She doesn't seem to have any eating issues at this time from the TEF repair she had at birth.
It's really hard to believe that it's been three years. I thank God every day for giving her to me and for watching over her. I am a lucky mother.
Heather L. Trotter
HeatherLTrotter@aol.com
History
- Blog
- View recent blog entries
- Member for
- 3 years 39 weeks
Location
- Country
- United States
- State/Province
- New York
