Amanda and I connected on the TTTS Survivors Group Facebook page last summer. She has been a very supportive friend, and I’m happy to share her story of her two baby boys – double survivors! I would like to highlight her excellent medical care. Once they identified the twins, her OB sent her to a specialist, who recommended regular ultrasounds between 14-16 weeks. Smart doctors! Wish mine had been so diligent!
Landon and Luke’s Story
by Amanda Goodfellow
It all started on September 26 2010. Every year my Dad’s side of the family has a wonderful family reunion. Lots of homemade food and pies to die for!! My husband and I were chatting with my cousins and they were all asking when we were gonna have a baby. Since we had been married a year they all thought it was time……so did God. I ate much more food then normal that day and kept saying oh my gosh everything tastes soooo good!! A few other things were “off” so on our 2 hour drive home my mind started churning. We got home and I immediately took a pregnancy test. The whole wait 3 mins…HA YEAH RIGHT! I barely set the thing down and it was already showing positive. I hadn’t told my husband I was taking one, cause I didn’t think I was pregnant, so much to my surprise when I was, I said in a partially startled voice ” hunny come here.” He came in and saw the test sitting there. He said why didn’t you tell me?! I explained and we both we baffled by those two pink lines, It didn’t sink in for a while. I should add that my husband and I weren’t really trying, but we also weren’t taking any precautions. My mom had a hard time getting pregnant, so I assumed I would have the same problem….well you know what happens when you assume
So October 4th rolls around and I am at my OB with my husband verifying the pregnancy. The doctor said we were about 6 weeks. She didn’t deliver so I went to Northland OBGYN. I had worked with nearly all of these doctors in the practice for about 2 years, so I was comfortable and I knew them on a more personal level. My heart knew it was the right place to go. My appointment for our first ultrasound was October 8th. So we are in there and the tech does my ultrasound and says “Oh looks like you are having Twins!”
I nearly fainted! Twins don’t run in my family and my mind couldn’t get wrapped around 2 of everything!! She quickly tells me and my husband not to go telling everyone about both of them, since twins are common early in pregnancy and we could come back in a few weeks and they would be gone. Something was telling me that those two little peanuts weren’t going anywhere. We decided to tell my parents and very close friends that we were pregnant, just kept the twin part hush hush. at least till the next ultrasound which was scheduled two weeks later.
They were there again (like we knew they would be) but were told again that there was still a chance that one could dissolve. We had another ultrasound at 10 weeks and again our little peanuts were still growing strong! Our doctor told us that they wanted us to be seen by a specialist because we had identical twins and the risks can be a bit higher with them. The sent us to Midwest perinatal to see Dr. Finley. We had an appointment with him around 12 weeks I believe and he checked the growth and such. He told us he wanted to monitor us between 16 and 26 weeks for Twin To Twin Transfusion syndrome. I was so confused and really didn’t understand what he was saying. All I heard was 80% chance nothing happens and 20% chance something does. I did understand it was fatal. I am a very positive person so I thought I am not that 20%, everything will be fine.
We were in blissful parent mode and decided all the future things for our babies. We had said that if it was one we wouldn’t find out the gender, but if it was Twins we would. Even though I never really wanted to know the gender, I was really excited to pick names. I had picked Lillian Grace after my Great Grandmother and Grandmother, and Lizabeth Jane after my husbands mother. He had picked Landon James after my dad, and Luke William after his dad. We were set! Blissfully unaware of what lied ahead.
Monday December 13th we went back to see Dr. Finley. I was 16 weeks and 4 days. My mom and Husband went with me. I remember laying there while he scanned my belly, praying that everything would be OK. He mumbled medical terms to the nurse who charted them for him. He had asked how I had been feeling and I said I have so much pressure, I am so uncomfortable. Now this was my first pregnancy, so I had no idea how I should feel, but I knew something was wrong, but didn’t know what.
Dr. Finley said he was going to check my cervix, but needed to make a important phone call first, without another word he was out the door. My heart was filled with panic. I looked at my mom who looked like she was almost in tears and my husband looked a bit concerned. He came back in and started scanning my belly again. He said see this twin how it can move all over the place…yes. Ok now see this twin how it can’t hardly move at all and looks basically stuck…yes. This shows me that you have TTTS and I need to get you to a specialist immediately he checked my cervix and told me everything was fine there and I could get dressed. He said he hadn’t reached a certain Dr and needed to so he was going to call again while I changed back into my clothes.
We went into his office and he said if he couldn’t get a hold of this Dr. at KU medical center he would be sending us to Utah. I laughed and said Utah?! He said Amanda this is not a laughing matter I am serious. I knew right then and there that my babies were in serious danger. KU was never reached while we were at the office, but I gave permission for them to call me and set up an appointment for the next day.
KU called the next day around 9am and asked if we could be there around 11. I said absolutely. My parents and my husband went with me to the consultation were we met Dr. Carl Weiner and his staff at the Center for advanced Fetal care at KU medical center in Kansas City, Kansas. I was getting my sonogram and Dr. Weiner was doing his best to describe to the four of us what we were seeing.
We understood that “Baby B” was stuck and that it could die if nothing was done to help it. We were taken into a private room were he told us our options. I have never cried so hard in my life. I was mad and scared all in the same rush of emotion. We were left with two that were comparable but only one was done once and had to be very severe to do twice.
Laser Therapy is what we chose. Our surgery was scheduled for Thursday. We thought for sure they meant the next Thursday and Dr. Weiner said Oh No, If we wait that long you won’t have your twins. Thursday couldn’t come soon enough! My procedure wasn’t until 2 in the afternoon, so not only could I not eat breakfast, but I couldn’t have lunch either! UHHHH!!!
My hunger pains outweighed my fear, which was a good thing cause I was scared to death! So I had a few sonograms to verify where the babies were. Dr. Weiner was ready and confident of what he needed to do. I was escorted back to the OR by Dr. Weiner and a few nurses. Looking back that was a very special thing he did, it made our connection even stronger. I got into the OR and sat on the table. I couldn’t believe how many people were in there for just me and my babies, brings tears to my eyes now just thinking about it. I got tons of blankets cause it was freezing, and Dr. Weiner gave the OK for Anesthesia and I was out.
Waking up what seemed like days later….I heard Jesse’s (my husband) voice and asked if they babies were OK. Dr. Weiner said yes, TWO strong heartbeats!! I got as excited as any drugged up person could and went back to sleep. I was wheeled back to my room for rest and was told I was going to be picked up in the morning for another scan. Baby A was our recipient and Baby B was our donor. The scans weren’t to Dr. Weirner’s liking so I was taken back upstairs and was to be brought down in the afternoon to see if anything had changed.
Now I should add Dr. Weiner is very particular and if he doesn’t like how the baby is acting he will talk to the mothers belly and explain to the baby the situation and tell it to change it plan….it is very comical! So my Friday evening scan went ok, still not good enough, so the clinic was opened just for me on Saturday. Dr. Weiner was finally pleased and sent me home Saturday night. Light bed rest and no working until he said so.
So every week for 17 weeks I drove the 20 miles to KU from my home (I am not complaining, this was truly a blessing) never going by myself, cause we never knew what could happen. The babies were growing right on schedule. We had a few hickups, but nothing to lose sleep over, well at least I didn’t cause Dr. Weiner assured me that if he was concerned enough I wouldn’t be going home. After everything had happened Jesse and I had decided not to find out the genders cause we really didn’t care what they were, we just wanted both babies. Towards the end I had a few labor scares which were actually my body just saying to chill out because my uterus couldn’t handle all the pressure.
I quit working on April 6th, cause my body was just overworked. I was on my feet all day and the doc said no more. I thought oh man i am gonna get so much done!! I went to the Dr on Wednesday April 13th. This was weird for us because we usually went on Thursday or Friday. They hadn’t “put us on the books” yet, so I wasn’t really a patient according to the computer. They were just gonna have me come in, do my normal scans so that it was in the computer and come back next week at my normal day.
I wasn’t feeling all that great and couldn’t even walk next to my husband anymore because I was waddling so bad I would push him into others in the narrow hall way….I was so big and uncomfortable! I checked in and told the secretary, who had become a good friend, that I was done being pregnant! She said oh Amanda you are doing great you can make it just a bit longer! I sighed and said ok I guess I will! I got my normal sonogram and Dr. Weiner was happen with everything and said to make an appointment for Friday and he left.
But something caught out Sonogram Techs eye. Nikole had been our tech from day one, so she knew our babies. She called the Dr. back in and showed him this thing she saw. He ordered a biophysical profile and stress test to be done right then. Baby A passed with flying colors. But Baby B on the other hand didn’t pass at all. I was sent to another room to be monitored and there I sat for 45 mins. The nurse came in and out and so did the Dr. He showed me what he was looking at and had decided that we were gonna come back on Friday for more scans, but continued the monitoring, just to see.
My Dad and husband were there with me and my dad was saying I was gonna have the babies by Sunday….Yeah right, I don’t think so. Then he said I think you will have them tomorrow….nah I said I don’t think so.
Not even 2 mins later Dr. Weiner walked in and said your c section is scheduled for 8 am tomorrow morning, you can’t go home, you will be wheeled straight upstairs to be monitored for the rest of the evening. My emotions were out of control, well I mean more than a hormonal pregnant woman’s would be. The organized person I am I already had my bag packed in the car and only needed my husband to grab a few more things for us. My dad went home and Jesse came upstairs with me.
After everything settled down and I was all alone in my room I lost it. It hit me that I would no longer be just Amanda or Jesse’s wife. I would be the mother of two little babies that I still had no clue what their genders where. Their little room and little clothes were set up perfectly at home it was just waiting for them. But I knew these babies wouldn’t be coming home with me and the unknown really scared me.
I didn’t sleep at all because my mischievous children kept moving off the monitors and so the sweet nurse would come in and readjust and 5 mins later do it again. at one time I had 4 nurses in my room because they couldn’t find the baby, it was there just being a little booger. My nurse and I were able to talk about everything that had happened and she couldn’t wait to find out what our little kids were the next day. She let me get off the monitors around 5 am and let me take the longest and hottest shower I wanted. I was so at peace in the shower that morning, never had water felt so good on my swollen belly, I did my best to savor the last few moments for being just Amanda. I got out fixed my hair like I would for any normal day and walked out in my hospital gown ready to meet my babies. My mom laughed at me cause I had done my hair and such, but I said well I won’t feel like taking a shower tomorrow and pictures will be taken today, so I want to look nice. My OR nurse came around 7 put my cath in (i wasn’t happy about that) and wheeled me to the OR. I am not a fan of needles and was not looking forward to the spinal. I was uncomfortable, in pain, and scared my babies were not going to be alive at birth. Dr. Weiner came over and held my hand and told me everything was going to be fine and I needed to breath and relax so that we could deliver the babies. He assured me that they were fine and if they weren’t they would have been delivered hours ago. The Spinal went in and they laid me on the table to fast I thought I was going to fall off. Everything was in a big rush, well at least it felt that way. Jesse came in and everything slowed down.
It seemed to take forever to deliver the babies. I told Dr. Weiner that I wanted to know the gender as soon as he saw what they were. I wanted that moment where the doctor said it’s a boy or it’s a girl! I was so anxious to hear! Shortly after I asked him to tell me he said IT’S A BOY!!! I was so overjoyed! I had that feeling they were boys!! 2 mins later IT’S ANOTHER BOY!!
Landon James was born at 8:18. He weighed 4lbs 6oz and was 16 1/2 inches long. Luke William was born at 8:20. He weighed 3lbs 9oz and was 16 inches long. My boys were alive and well! They spent 48 days (Luke) and 52 days (Landon) in the NICU. Their stay was uneventful! They went home on monitors, which were taken off at their 1 week out of NICU checkup appt! They are now 20 months old and walking talking healthy little boys! They are a joy and are called little miracles by many people.
I know that I had a really great team of Dr’s and nurses during my process and I wish I could give that gift to all TTTS familes. I know that have a great Dr. doesn’t always mean that you will have a perfect outcome, but at least you could look back and say “everyone tried, and gave their all”. I feel blessed to be part of a community of such strong people. My children are a blessing, just as any children are, but having my TTTS family has been even more life changing then having my children. I have people around me that “get it” and that makes me feel a little more normal in this crazy world Blessings to all and a wonderful Holiday season to you all!!
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