Irvin Family Story
I am Todd Irvin, and this is the story on our family. My wife Kelly and I were married on November 5th, 2005, 8 months after I was back from a military deployment to Iraq. Shortly after we were married, we were wanting to start a family. We tried for about 3-3 1/2 years and weren’t able. Finally, we went in and did some testing and found out that my wife Kelly had PCOS and the doctors told us we wouldn’t be able to ever have children.
Kelly took the news a little more personally than I did and was pretty upset that we wouldn’t conceive. Me, being a guy, just shrugged it off and didn’t let it bother me. I knew there were other options for being able to be a parent whether it is surrogate or adoption, there were other means. Kelly wanted the experience of carrying the child and all the joys that go with that.
In September of 2008, I found out that I would be deploying to Afghanistan in September 2009. After talking to some adoption agencies in our area, we heard that it generally takes a year or longer to adopt a child, and with the luck we have, it would definitely take longer. In May of 2009, we went forth with the adoption and filled out an application for adoption. We could be as specific or broad as we wanted in choosing our “perfect” child. Do you want a boy or girl, blonde hair or black hair, Caucasian, African American, or Native? The more specific you were, the longer the wait time would be.
July 4th weekend we were camping at Big Stone Lake, and we got a call from our adoption agency saying that there was a mother who wanted to interview us and she advised us that it would be a good experience for us to sit through an interview just to see what it was like. The birth mom was Native American, she was pregnant with twins, and she was from Sioux Falls! We were ecstatic to be chosen for an interview and were nervous about what it would be like.
The middle of July, we met the expecting mother, and she was nervous just like us. She was a couple years younger than us, and we seemed to be doing pretty good in this interview. We let her know right then that I was in the military and was going to be deploying in September for a year to Afghanistan, thinking that would be the end of the interview; after all, who would want to give up their child/children to a family who wouldn’t have a father figure their first year? Well, it worked out to our advantage! Her father was in the military so she knew the pride that her dad had in serving his country, so she could relate.
We left knowing we ROCKED in the interview and hopefully she liked us. Our social worker told us she wanted to interview a few more families so we wouldn’t hear anything for a few weeks if we were chosen. A few weeks passed, and we got a call saying that she wanted to meet again to get to know us a little more. We went and met her again and she said she was going to be having twin girls. The reason she wanted to meet with us was to tell us they were girls, and she had the ultrasound pictures with her if we wanted to see them. We for sure wanted to see them! After that short meeting, we got a call about a week later saying that she had chosen us and were wanting to know if we would accept her offer. ABSOLUTELY! We were going to be parents!!!
After we met her multiple times, she was starting to become kind of like a “friend” and the agency no longer needed to be present when we met her anymore, as long as we were both okay with it. She let us know that she was due October 5th, 2009. Three weeks later, I left for mobilization station in Fort McCoy, Wisconsin. We were joking around telling her she should have them before I left, like September 11th, for symbolic purposes, as if she were in control of when she was able to have them! Everyone knows the Man upstairs is in command of our lives, not us! I was done with my job the end of August, so I could spend time with my wife and family before I deployed. I remember Kelly’s phone ringing at about 8:25AM on Friday September 11th, 2009 asking if Kelly could come pick up Arlana, the birth mom, for her Dr.’s appointment at 9:00. About 11:10 that morning Kelly’s phone rang, it was Arlana again telling us that she was going to be induced that same day and the girls would be here yet today. “One of the girls is taking all of the nutrition from the other, and they are going to induce me soon, if you guys want to come up if you are able to.”
We arrived at the hospital, and she was already back in having a C-section. Baby #1 was born at 11:57AM and baby #2 was born at 11:59AM. Arlana named them Cante and Skuya which in their native language means sweetheart when said together. Individually they mean nothing. We decided to name them Ariel Kay and Lily Mae. Ariel Kay Cante and Lily Mae Skuya are their full names because we promised to keep their native names in their names. They turned 6 this last September. I deployed a week after they were born.
After my deployment we were talking about trying to adopt again but weren’t sure if we wanted to spend another $20,000 after we just got this adoption paid off. We heard about something called an IUI, inter-uterine insemination, from a friend of Kelly’s that was much cheaper than adoption. This process was $500. We decided to give it a shot and it took on the very first try! The procedure was done on October 1st. We went to her 20 week ultrasound in February to find out what we were having. The ultrasound tech was taking a lot of pictures of the head and we didn’t think anything of it since we have never gone through something like this before, we thought it was normal. Dr. Palmquist came in , who we were seeing for the pregnancy, and told us that there was a lot of fluid on the brain and they were going to monitor it to make sure it doesn’t get to be too much more. She told us not to worry about it too much because if it is fluid they were able to put a shunt in to remove it. She wanted to have another ultrasound done in 2 weeks to monitor it and make sure it doesn’t accumulate.
Two weeks had passed and Kelly went in by herself this time for the ultrasound. This time Dr. Palmquist along with Dr. Huddelson came in and said it had over doubled in size and they were thinking it was more than the fluid, they thought it may be his brain. Kelly said they came in and told her that he has something called holoprosencephaly. Dr. Huddelson told her she should consider aborting this pregnancy because it is shown that kids with this “have no quality of life.” Kelly was CRUSHED! She called me at work crying and told me I need to come home there is something wrong with our child. I rushed home and she had the word written out for me and told me this is what our child had. They told her not to google the diagnosis, the pictures are horrifying. Well, you tell me not to do something, it makes me want to do it even more. I googled it and saw pictures of what it was, not something I wanted to see but I needed to find out more about this. I saw there was a website for Families for HoPE along with a number. I went to the website and called the number. I got ahold of a lady by the name of Leslie Harley. I talked to her for close to an hour, drilling her with all the questions I could think of. I came upstairs and told the wife I just talked to a lady who was full of knowledge about this and it gave me a little more HoPE than what was first thought. She also told me there was a family in South Dakota she thought had this as well and they lived in Hartford! Whoa, what, Hartford? That is only 15 minutes from me. I wanted to reach out to them but couldn’t come to asking about their special needs child. Who are you to ask about my child? Do I know you? How did you hear about US? I couldn’t do it. About 2-3 weeks passed before I reached out to Summer Jesse. She let me know that their son Ryland was 7 years old and is doing pretty well. Again more HoPE for our son. Things were starting to look up.
Ryker was born June 14th, 2012. The room was full of specialists wanting to make sure everything turned out okay. He scored an 8/8 on his APGAR test. Most “healthy” babies don’t score that. He was placed in the NICU overnight to monitor him and make sure everything was going well. A day later he was placed in the normal pediatric unit and things were smooth sailing. Three days later we were on our way home.
After about 3 months being home, we noticed he would gag while nursing or taking a bottle. We were told it was nothing to be concerned about and he would maybe outgrow it. After about 7 months, we were told they were going to do a swallow study to make sure he wasn’t aspirating. The swallow study was done, and sure enough, he aspirates! What does this mean? It means we have to look at an alternate form of feeding him. He was going to be getting a PEG tube put in for feeding. The surgeon told us it is nothing to be too concerned about, many people have feeding tubes. On March 18th 2013, Ryker had a PEG tube put in. That night, about 10 hours after having it, the nurses went to flush it to make sure everything was working properly, and it was leaking right where it went into his stomach. The surgeon tried putting it back in the next day but to no avail. He was going to have to put in a G-tube. I felt so helpless to see my child go through all of this and there was nothing I was able to do. He took it like a champ though smiling all throughout.
Fast forward another year, March 17th, 2014. We were facing another surgery! This one was a bit bigger than the last one. Ryker has been having trouble breathing properly. He wasn’t gaining any weight and was looking pretty thin. We were going to have to put a trach in. The g-tube was bad to think about but now something sticking out of his neck. We were nervous as ever. He had the trach put in and the surgeon told us not to touch it for 7-10 days, so we didn’t. He had some secretions coming from around the trach itself so there was a gauze pad around it to catch the ooze. The nurses were told not to touch the site so they just monitored it closely, along with us. He had it place on a Tuesday and by Saturday we had another doctor to add to our list, infectious disease! I asked what he was doing here and he said he was told the trach area is infected. Granted it stunk like no other and I was wanting to change the gauze as well. I knew in my head that if I have a wound that is pussing and a band aid over it, I am not going to keep the band aid on for over a week. I am going to change the band aid. I finally told the nurse on Sunday night either they were going to change the gauze pad or I was, and I have no clue what I am doing! They called the surgeon and told him and he came through and saw what I was talking about and told the nurses they could change the pad. I wasn’t real pleased with him, now my son has an infection that could have been prevented. A week and a half later we were released from the hospital with meds to treat the infection and a spare trach. After the trach was placed Ryker really took off. He was gaining weight and was growing rather rapidly. All of this because he was no longer working so hard to breath!
In June of 2014 we saw a van for sale on the HPE Facebook page. It was a clean van with only 25,000 miles and everything we were looking for. There was a family from MN selling it and after looking at other vans, this one was rather cheap. I called the number and asked if the van was still for sale? She said it was so I asked her why they are getting rid of it? She told me they bought it in March of 2014 for their son Levi who had semi-lobar HPE and he passed away so they no longer needed a handicap accessible van hoping a family with a child with HPE would be able to use their van to fit their needs. Come to find out their son Levi passed away on Ryker’s 2nd birthday. At that point I knew we were meant to have this van. It is crazy how God works in such mysterious ways!
In October 2014 we attended the Families for HoPE conference in Dallas, TX. Finally we got to meet all the families we have gotten to know through Facebook. I was looking forward to meeting Ed the most…he is the one who instilled in me to stand up to these doctors and fight for your child, which I did back in March! Leslie, whom I spoke with for over an hour and gained multitudes of knowledge from I got to meet. Everyone there who deals with what we deal with back home.
About 3 weeks after we got home Kelly went to the doctor because she wasn’t feeling like herself. She thought she may have depression. She went to the doctor and the doctor asked if she had taken a pregnancy test. Kelly laughed and said no, we can’t have children on our own. The doctor went on and told her before she leaves to take a test, just to make sure. Just before Kelly was leaving she asked the doctor if she was serious about the pregnancy test, the doctor had forgot and told her to take one quick and she was good to go. Kelly took one and came home. A few hours later, just as she was pulling out of the garage to go to the store her phone rang, it was the doctor’s office. Her test result came back positive. Kelly started crying and came and told me she was pregnant. I was stunned she was telling me this now, she just walked out the door to go to the store, now 35 seconds after you left you come tell me your pregnant? How do you know? Well I went to the doctor today and I took a test. I was still in shock. What if it is another special needs child? How are we going to manage having 2? All the negative thoughts were coming to my mind! After talking to other HPE families they were told once you have a child with HPE most of the time your future children will also have HPE. We were planning for the worst and hoping for the best.
June 15th, 2015 we were blessed with another boy! Kasen Lee joined our family along with his big brother Ryker and twin sisters Ariel and Lily.