Faces of Loss, Faces of Hope

JoAnna

Mom to Nathan

October 9th, 2009 - October 25th, 2009

Imperial, Missouri

My husband Jonathan and I married in June of 2001; we both knew we want to be parents, but the both of us had just turned 20 so we knew we weren’t ready quite yet. I had been diagnosed with PCOS when I was around 15, and I had told Jonathan about it and explained that parenthood might not come easily, if at all.

The end of 2008 we decided it was time to move into a new house and maybe actually “try” to get pregnant. I had been off of birth control for two years at this point and nothing had happened, my periods were all over the place. In January 2009 I spoke to my ob and she wanted to run some test and get an ultrasound, and she said that I would probably have to see a fertility specialist. Jonathan and I spoke about it, we had decided that we would see the specialist, and discuss treatment but that we wouldn’t let it take over our lives or our financial futures. I had the initial tests run in January, and then baby talk went on the back burner for a few months, we were house hunting and then moving, when we got settled in we would make the appointment.

We moved in our new home in the end of March, my birthday was in the first week of April, and had just felt off for a couple of weeks, but I shrugged if off, and then about a week later I flew off the handle at my husband for something I did that was stupid, and I remember being like whoa what was that!? A day or two later, I got out the number my OB had given me for the fertility specialist and I was going to make an appointment, but I decided to take a pregnancy test just in case before I called. I took it and walked away, it was going to be negative, no big deal they all had been before. I came back and looked at it, and there they were two lines. Wow what an amazing feeling, and my body had done it on its own!

For a couple of weeks my hormone levels were monitored, so we could get some ideal of how pregnant I was, and then when I was approximately 6-7 weeks I went for my first ultrasound. It did not go well, I filled out the questionnaire before I got there, and because of my odd periods by the calendar I was 10 weeks pregnant. I explained to the ultrasound tech my goofy body, but she just kind of stuck to that 10 week number. She wasn’t seeing what she thought she should. She wouldn’t even confirm I was pregnant until she went and talked to the Dr. She was gone forever and my husband and I just sat there thinking this was suppose to be fun and exciting and we were both just frazzled. She came back and on the screen enlarged a photo and put Baby!!!!!!!!!!! I was 7 weeks along. We were happy but stressed, I needed to come back at 10 weeks just to confirm things were going well.

My 10 week ultrasound was very different, when the tech put the wand on my stomach I thought am I seeing what I think I am? There were two, and then the tech asked how we felt about two. Shocked is how we felt about two! My husband and I have twins on both sides, I’ve always said we had a good chance for them, but we never thought we would have them! We were excited and scared. With in a couple of days my OB called and told me I was having monochorionic/monozygotic twins which meant they were identical and shared a placenta. She referred me to a group of maternal fetal specialist because of all the complications identical twins can have.

Almost right away I began going to the Dr. every other week, then every week with an ultrasound before each visit. I had a ton on morning well all day sickness, but other than that I felt really good. Things were going okay, we found out we were having boys at 17 or 18 weeks. We decided on the names Nathan and Tyler, but we would name them when we saw them-kind of funny since they were identical, but that is what we decided. I don’t think it was healthy mentally for me to get that many ultrasounds. At first it was great I got to see the boys all the time, but as the pregnancy progressed the ultrasounds just got more stressful. Fairly quickly they thought the boys had Twin to twin transfusion syndrome, Baby A was quite a bit smaller than Baby B. It was later confirmed that we indeed had TTTS and may need laser surgery, which only had a success rate of 80 % of both babies surviving. In the same ultrasound the Dr. reading the ultrasound stated that the boys’ femurs were measuring a little short and that it could be a marker for Downs syndrome.  I went home in tears that were a lot to take in for one day. The next week both babies were holding their own, both had fluid, and strong heartbeats, and both bladders showed up(a sign of TTTS the donor baby’s bladder won’t appear on ultrasound because he isn’t making urine) but this time the femur’s were the appropriate length. That up and down continued it began to feel like it was always something bad. One week it would be Baby B’s head was too big he might be hydrocephalic, the next week it was fine, it went on and on like this. But each week both babies grew and they had heart beats, bladders and enough amniotic fluid.

The TTTS was deemed not severe enough for the risk of surgery, so I just continued to be monitored closely. At 27 weeks I got what I thought was a cold, I just felt run down and I just wasn’t breathing well. I’m an x-ray tech and I went to work and just had the Dr. look at me and listen to my lungs, and he said lets take your blood pressure, it was in the 190/100’s, and he said lets get a urine sample, I knew it would contain protein. I had Preeclampsia, I was hospitalized that night. The next morning my Dr came to my room and told me I would probably be having the boys with in the next two weeks, we would hold it off as long as my body would allow. Baby A was weighing in at less than 2lbs. I was monitored daily for 2 weeks my body was failing fast. I had to be transferred to a hospital that had a Children’s hospital attached and deliver the boy’s ASAP. I was 29 weeks pregnant.

Before the boys were delivered, we spoke to every conceivable Dr. about the boys’ viability, and about every worse case scenario, it was terrifying, and I just remember think this is suppose to be joyful and every ounce of joy was replaced with terror. We were told the boys would not cry, not to expect it, they were too small and their lungs were underdeveloped. The delivery was hectic, and I wasn’t doing very well, each baby had a team ready to work on them, and I had a team for me as well, so there were probably 40 people in the room. After the incision I lost my blood pressure and remember very little of the delivery, but clear as day I heard both of my boys cry, it was the most beautiful sound I will ever hear. I thought it was God’s way of telling me everything was going to be alright. Baby A was born October 9^th, 2009 at 9:11 p.m. weighing 2lbs 3oz and 13 ½ inches long, and Baby B followed at 9:12p.m. weighing 3lbs 5oz & 15 3/4 inches long. Both boys were taken to the NICU and were doing remarkably well.

I wasn’t allowed to see the boys for 24 hours after delivery, because of my condition, and because I was given magnesium sulfate. After the longest 24 hours of my life I was able to push my wheelchair to the Children’s hospital and see my boys. We decided Baby A was Nathan; he was so small he needed a big name, and Baby B was Tyler. For two weeks we fell into the NICU routine. Both boys were taken off the vents with in just few days, and they were growing and doing great.

On October 23 2009, I came into the NICU and Nathan was screaming, which was not his usual temperament, I washed my hands and put my hands in his incubator and he still didn’t calm. His nurse was at lunch but the RN watching him came in and accessed him and went to get another RN that was more familiar with him. At the time both boys had feeding tubes and were be fed by gravity. They retracted his most recent meal up through his tube and it had a mealy appearance. At this time his RN returned from lunch and things just went into overdrive. They explained they thought Nathan had NEC necrotizing enterocolitis. The next few hours was a blur of tears, and phone calls, Nathan went down hill fast. They preformed bed side surgery that night and removed 2/3 of his small intestine; he had a 50% of survival. Right before the surgery team came in Nathan opened his eyes and looked at Jonathan and I, I think he was telling us goodbye, it was the last time I saw him open his beautiful eyes.

That night, and the next day Nathan was stable, late Saturday night went home to get some sleep. We were trying to be optimistic. I was pleading with God to lay his hands on Nathan and to heal him. Two weeks was just not enough time, it was a tease. He was this beautiful loved little boy that just HAD to live. I don’t really know what time we were called but early Sunday morning we were called to come to the hospital, Nathan’s heart rate was dropping. We rushed there, when we walked into his room and I just felt like a failure, I had one job and that was to get them here safely and I failed. My son was dying and I could do nothing, he was too small he wasn’t supposed to be fighting this hard. I had broken my family’s heart. I if I could go back and trade him places I gladly would. The Dr working on him told us that he would more than likely pass away that morning and that we could do as much intervention but that it probably would not work. We should prepare for the worst.

We were able to make all of the phone calls and get our families there, Nathan held on to say goodbye to everyone. We were able to get the only pictures of Nathan and Tyler together we would ever have, we were able to hold them one in each arm. Everyone was able to hold and kiss him and say goodbye. Then they placed him in my arms and we had them remove the vent, and he passed peacefully in my arms surrounded by love.

It has been a year and we are still reeling. Tyler did fantastic his entire time in the NICU and was able to come home on December 7^th 2009. He is amazing; he is like my own personal sun. Emotionally everyday is a rollercoaster, I am the happiest and saddest I have ever been. I used to consider myself an optimist, but I just feel like that part of me has been sucked out, like all my hope has been erased. I feel overly dramatic sometimes, but since this happened I just feel muted, like colors aren’t even the same anymore, they’re dull. I have this overwhelming guilt, if I could have just carried to term, or close to term he would still be here. Other times I tell myself how very lucky I am, I had the world by the tail for 16 days, I had these 2 beautiful boys, and I still have Tyler, it is so much more than others have ever had, be grateful I tell myself. Everyday is new we try to honor Nathan, and raise Tyler to be happy and well rounded; I don’t want Nathan’s death to loom over him.  I am thankful he survived, and that both of these wonderful little people where chosen to be mine. On their birth announcement we tried to sum everything up, we wrote: Every good and perfect gift comes from above, we are blessed with Twins to cherish and love. Born together to grow apart, one in our hands, one in our hearts.

You can contact JoAnna at Josieanna11@aol.com