Dominique Nicole Butler
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Dominique was born March 11, 1997 she was a full term (41 Weeks) baby born to a mother with no problems during pregnancy. When Dominique was born she was so alert and had no visible problems. She was creating allot of saliva so the nurse took her to the special care nursery. My husband, son, and daughter were so happy to finally have Dominique with us then the bad news came. The neonatologist came in and suggested that the kids leave, since we do everything as a family we told the doctor that they could stay and he could tell us what was wrong. We were dumbstruck when he said that she only had the lower lobe of her left lung and that the right lung did not develop, and that every time they tried to intubate her she did poorly. He also let us know that her stomach was not attached to her esophagus. He then informed us that she probably would not make into Boston where they were ready to do surgery. We were sick to our stomachs to say the least. The doctor thought we were crazy because we did not react the way he expected us to. Our main concern was to get her into Boston and into surgery as soon as possible.
Dominique made it into Boston and within hours of her birth she was in surgery. We were on the phone all night because we could not go with her my husband stayed with me and we prayed all night long. The next morning we went into Boston to see Dominique, she did not look the same tube and machines everywhere, I was so overwhelmed at all the equipment around this little baby it just didn't seem fair, I did everything right during my pregnancy ate right, didn't drink, didn't do drugs, I kept thinking why us. Well it doesn't take to long to get past that and focus on what was really important, letting Dominique know we were their and praying for her. For the next 36 hours she was doing great. We went home and was trying to settle in when the phone rang. It was the hospital letting us know that we needed to get there right away that Dominique had taken a turn for the worst and that she was being taken to Mass General to go on ECMO. My husband and I never drove to Boston so fast, Dominique was coming from NEMC and we beat the ambulance their. We were told to go to the parents waiting room and that they would come get us when they had more information for us.
Michael and I sat in the waiting room for what seemed to be hours, then Dr. Snitzner came in and explaining they have tried all kinds of things to keep Dominique's Lung inflated but that it just was not working then he suggested ECMO it was a long shot but he wanted to try. We said o.k. and he went back to work on Dominique. Several hours later he came in and said she was on the machine and that we could see her finally. When I saw all the machines keeping my daughter alive all I could do was cry. I could not stop, my husband who was a nurse new more than I because he was familiar with all the machines I think it was harder on him because he was aware of how close to death she was, me I was just glad she was still with us. Dominique spent the next 13 days on ECMO she had her ups and downs, she had allot of trouble the first week but seemed to improve the second week. When she was around 9 days old we were brought into a room and told that Dominique had Atriel Septual Defect (A whole in her heart) and that her airway was abnormally small like the size of a cocktail straw and that is was about 90% closed, this meant more surgery. We had a decision to make, they had never done this before, her only airway needed to be cut and reattached. They were unsure whether or not her airway would grow normally or if she would even survive the surgery. We wanted our little girl so bad we did not want to give up on her she had made it this far we were convinced that she was a fighter and that she would do just fine. She went into surgery and it again seemed like hours waiting for any little bit of information they had, she did great and was now recovering from her second surgery. We spent hours at the hospital talking to her and singing to her caressing her and just letting her know she was not alone and that she was loved.
Michael and I were getting ready to go to the hospital one morning and the phone rang it was Dr. Snitzer say that Dominique was off of ECMO and that she was doing well. I was so excited I thought she was going to be able to come home finally. When we got there that day a parent conference was set up to plan Dominique's care. I then found out that it was going to be a long recovery they were not sure when Dominique could come home. For the next five weeks she had to be completely still so that her airway would heal without being scared. Then they tried to remove the intubation tube in the O.R. she did great at first and they brought her back to the NICU, it did not take very long to see she was getting into trouble. Her breathing look like she was a fish out of water, she was able to breath in but not out, then that's when they said they had to give her a trach. Because Dominique's airway was so abnormal Dr Ryan made a customized one. It was so small only 2.0mm you could only suction her with a 5 French Suction Cath. She was still so sick. Just when we thought we were taking baby steps forward we were pushed back by giants feet. After 5 weeks of not being able to hold my daughter we were finally able to hold her. I will never forget that day as long as I live. We all wanted to hold her and not let her go but she was still hooked up to a ventilator and was still not breathing on her own she was still dependant on machines to keep her breathing.
Over the next couple of months we had to wait for Dominique's airway to grow. She would do great some days and some days not so well. While in the hospital she developed tracheal bronchitis and tested positive for e-coli bacteria in her trach. She then became septic. She got a spinal tap and was very sick for about a week and a half. But once again Dominique came out of it without a problem. Dominique's airway continued to grow over the next couple of months while we waited to take her home. Only time would tell when she would be ready. In May she finally was ready to go up a trach size to 2.5mm this still is very small and the doctor told us that she had to be at least a 3.0mm before we could take her home. We thought the day would never come. Well in July she finally graduated to a 3.0mm and now we were ready to take her home. But we found out that we had to learn to change her trach and how to operate all of her equipment, she also has a G-tube. Our front room became a hospital room, but we thought what ever it takes to get her home so we were ready and the day finally came. July 24, 1997, after 4 1/2 months in the hospital we were ready to take her home. We went to the hospital to bring her home and we were faced with yet another problem. The nursing agency that had been in place for a month did not have a nurse ready for us. Thank god my husband is a nurse we were determined to take our daughter home. The doctors let us go home as long a we promised that if she got into trouble we would come right back. So on July 24, 1997 we finally took Dominique home. The NICU staff at Mass General in Boston are miracle workers. They did everything in their power to save her life and it worked.
Dominique was home now and we were ready to handle anything that was to happen. The nursing agency finally got someone to us and we went on from there. As Dominique grew she was a bit delayed she spent so much time in bed she needed to have psychical therapy to get her muscles moving. She also had a speech therapist and occupational therapist come by and work with her. I can not thank Early Intervention enough they are very supportive, Dominique started walking when she was 13 months she was not into crawling at all. She was doing everything she was suppose to do at 15 months walking and thought process fine motor skills everything was coming along great. No signs of any developmental delay at all. She was not eating by mouth and that was o.k. Whenever she was ready we were willing to do what ever it took.
She is now 2 years and 4 months old and is doing awesome. She is eating everything by mouth and we hope to have the G-tube removed in September as long as she keeps gaining weight. We had only one side effect from the ECMO was that her hearing was effected. But that was o.k. she was here and happy. We just received her first hearing aides and she is just as cute as can be. She absorbs everything around her. She loves to explore and is afraid to go down for a nap because she might miss something. We would not change one thing about her. We believe that you are given what you can handle and that he has a plan for everyone. I believe that Dominique was put here to let doctors know that you should never give up. She is a walking miracle thanks to everyone at the Mass General NICU especially, Dr. Daniel Ryan, Dr. Dan Doody, Dr. Jay Snitzer, and how could we forget the nurses, Deb., Linda, Susan, Mary, we thank everyone so much for caring enough to keep trying everything to keep this remarkable child with us.....
Update March 2002 - Dominique has been trach free for over 1 1/2 years now. She no longer requires a feeding tube. She does how ever have bi lateral hearing loss and is attending Beverly School for the Deaf. She is developing normally. She still has her stoma. She just celebrated her 5th Birthday on March 11, 2002.
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Update, November 2004 - Dominique is now 7 ½ years old. She will be 8 on March 11th. She has learned how to ride her bike ride her skate board and ride a scooter. She fights like crazy with her younger brother just like a normal sibling. She is a girly girl and loves to dress up. She has since had her stoma closed and with the exception of a couple of surgeries to dialelate he esophagus she has be doing fantastic. She does have trouble with seasonal allergies and has very dry skin which I think comes from only having the ½ of one lung so she just does not get enough oxygen to her skin but we keep up with it. She is talking up a storm and her favorite saying is “Whatever Mom”. I would not trade her or the experiences we have shared for anything in the world. She is such a special gift and I think she will keep on amazing us everyday.
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If you have gone through this
or just want to leave a message you can reach me at butler713@yahoo.com
Cheryl
