Faces of Loss, Faces of Hope

Laura

Mom to Madison Ann

October 3rd, 2007 - March 5th, 2008

Grand Rapids, MI

I found out I was pregnant in April 2007. My pregnancy was going fine and had a lot of morning sickness and heartburn. I had my twelve week appointment and everything was fine. I had my 16 week appointment and was measuring larger.  My Doctor said either I was farther along or their were more than one. I knew I could not be farther along since I got pregnant on the pill. 

I had an ultrasound at 18 weeks and it was twin girls.  My family doctor referred me to an OB because of the higher risk of c-section with twins. I finally meet with my new OB at 23 weeks and 5 days. That is when I first heard Baby A has a Congenital Diaphragmatic Hernia. This is when the Diaphragm does not close off allowing intestines ,spleen, liver and kidneys to be in the chest cavity where the lungs should be.  It also pushes the heart over causing less growth in the other lung.  

I was 24 weeks when I went to see Maternal Fetal Medicine.  I found out Baby A had the Hernia, and the girls were also identical and had Twin to Twin Transfusion Syndrome.  Baby A was smaller and had less fluid than Baby B. They wanted to do an Amnio but the girls would not behave. I had to go back every two weeks for ultrasounds. I had the Amnio done at 26 weeks.  They rushed back the results and the girls were identical and Babies had no Chromosomal issues.  The girls had both grown and their hearts were doing well. 

I met with my ob at 27 weeks and things were great. This was a Friday. Saturday I went shopping all day for Christmas. The girls were due on Christmas and expected to be too busy with a newborn and a baby that would need surgery to do it after the girls were born. Sunday I was so swollen and sick. I went to the hospital. They sent me home saying I had a bug. Take Tylenol and a Ambien. I went to my Ob on Monday and things were ok. My BP was good and they checked my urine. Tuesday night back to the hospital and this time they monitored contractions.  They gave me meds and got them to stop. Wednesday I went to maternal fetal medicine and they did the ultrasound and the Peri came in saying my bp was through the roof. I was spilling protein in my urine. They sent me to the hospital. My hubby went home to get stuff for me. 

While he was gone a Ob came in and explained that they were going to do a c-section as soon as they got more blood. I had severe HELLP Syndrome. My blood platelets were extremely low. My kidneys and liver were failing.  As she is saying this nurses came in to give me blood, prep for surgery, and give me mag for my blood pressure.  

My family got there in time to see me wheeled into surgery.  They said Baby A probably won't live at 28 weeks with a CDH.  They put me completely out for the c-section and my husband could not be in the room. I was so alone and scared.  I woke up in recovery and the girls were both in the NICU. 

When I was stable they wheeled my bed to see the girls. McKenzie was born weighing 2 pounds 2 ounces and 14 1/2 inches long and Madison was born weighing 1 pound 9 ounces and 12 1/2 inches long.  McKenzie was on a vent over night. They gave her a steroid to open up her lungs. She was on c-pap and nasal oxygen for 5 weeks. She than just need to grow and learn to suck, swallow and breathe. She came home at 2 months 2 days old and weighing 4 1/2 pounds. She is now a healthy 3 year old.  

Madison was on a jet vent, nitric oxide for pulmonary hypertension and too many meds to list. She was to small for ECMO (heart lung bypass) even though she needed it.  She fought hard for her life. The Doctors said she will not make it to her repair. She had a rough time at 10 days old and we almost lost her. They sucked out some dried blood and gave her steroids to open up her lungs. She fought hard to make it to surgery at 5 weeks old. She was just over 2 pounds at the time. She had her three and half hour surgery.  She came through the surgery very well. She was off nitric after about a week. She was off the jet vent pretty quickly. She got off the vent in about a month. She was on c-pap. They were talking about what they would need to do to get her home like her sister. She needed a feeding tube and a traceotomy.  We were waiting for her to get bigger and able to handle another tummy surgery. 

She had laser eye surgery for stage 3 ROP.  We than found out she had reherniated part of her intestine back up into her chest. They were going to do that repair, feeding tube and fix a hiatal hernia.  She had surgery schedualed when her oxygen needs went up. They canceled surgery and did some tests. The tests came back she had pneumonia. She would make one step forward and three huge steps back. She went back to the nitric, jet vent. She went into respitory failure. Her one lung had collapsed and the other was not able to keep up. 

We made the toughest decision of our lives and let her go at 5 months 2 days old.  

You can contact Laura at Jeepgirl616@msn.com