We had an angel in our home. He was beautiful, and for most of the time (that I choose to remember lol) we had a peaceful, happy time with him, even with 4 children 4 and under. I have a lot of memories that are NOT on his website, and the pictures on his website were made smaller so people with extremely low speed connections could see all of them. I would like to post some of the originals here, and will soon update his page (ok,
someday, you can see how "up to date" our website is... I think Christopher's picture is when he was only 3 months old...).
Joseph was born in July 2001. He was a surprise baby. Emilie was only 7 months old when we found out we were expecting again, and honestly? I was probably less than overjoyed. I had 3 children 3 and under and they wore me out! Tom worked over 50 hours a week and that's probably a conservative estimate. Some days he worked past midnight, sometimes he left early and got home after dark. I liked his days off in the middle of the week, but Sundays without him were rough. My patient visiting teacher gave me rides to church with 3 kids in car seats almost every week. I am not sure what I got out of church juggling those three and pregnant, but the kids knew where we were going to be each and every Sunday. One Sunday comes to mind where someone gave Michael a blue sucker on our way in to the chapel... sigh... you know where that ended up... lol... Tom was great with his work and when he was home he was (and of course is) an awesome dad, hands on, and when he wasn't, he was supporting our family.
So we found out we were expecting a baby. Everything was routine (other than one scary evening where we thought I was miscarrying, early on in the pregnancy) until about 18 weeks or so. The routine ultrasound turned up some abnormalities and they asked if we'd like to do the amniocentisis. We refused, knowing the chances of a miscarriage from this test were far greater than ANY chance we would ever abort this baby and the information gained that might be helpful could be found out in other ways, just not worth that risk. So instead, they just scheduled some ultrasounds to keep an eye on our baby boy.
Blood tests were showing abnormalities, but that is just a marker to suggest further testing, as well as what they were finding in the ultrasound, etc. The worst day came when another ultrasound to check on things suddenly took a turn for the worse and Joseph's amniotic fluid was so low that they wanted to take him that day... along with the tests, they pumped me full of IV fluids and signed me up to see some perinatologists in downtown Cincinnati. It was a bad day for that doctor's office, there was bad news for many patients that day and there were women crying in the hallways. I will always remember thinking that things always could be worse, Joseph still had a chance at life and we had options open to us.
So we started going to a perinatologists office and I had twice weekly ultrasounds and NSTs. We got really good at setting these up ourselves when they were particularly busy. They decided what it looked like Joseph had was problems with his kidneys, possibly Polycystic Kidney Disorder, a highly hereditary disease usually affecting 1 in 4 children if both parents are carriers. Tom and I were at a loss to know what to do other than having faith, praying, and researching for all we were worth. The doctors were at a loss to find a set of parents who did not want to abort their child who had "something wrong" with him. We were talking to our kids about how we might not get to have Joseph with us for very long and if we did, he would need a lot of special care.
Then it was a twice weekly ordeal to find babysitters for our other children, drive to downtown Cincinnati and spend a few hours in a doctor's office. During this time Tom changed stores, we moved, Benjamin got his tonsils and adenoids out (which was a tremendously good thing for him), and I was supposedly on some kind of bedrest. (haha, I tried!). We had wonderful friends from both of our wards (old and new, in Kentucky AND Ohio) who helped, as well as Tom's family who lived 6 hours away and helped with the move and then later with having someone staying with us and the kids to help.
Medically, Joseph was doing great where he was. All his vitals were wonderful. The amniotic fluid got lower and lower and they told me each time there was a possibility of taking him C-Section very soon. There were family fasts and prayers with friends all over the country, from our favorite parenting site to strangers acquainted with our family. So many lives were touched by Joseph's life, and his death. They told me, well, if we aren't going to take him at this level, and everything else is still the same other than his fluid is lower, we'll just keep on with the wait and see.
He kicked, he sucked his thumb. I knew my baby through ultrasound pictures. We couldn't see his face very well because his arm was always in front of his mouth. But we could see those little toes, fingers, eyes, we knew his kidneys very well. We told him he looked as pregnant as I did with his swollen kidneys. We shared these moments with our older children, even as young as they were. Joseph liked M&M's and always did better on his biophysical profiles when I ate some before our dr appts. Tom came to most of these appointments... I can only think of one time I went by myself.
His fluids started to increase again. The doctors started talking about waiting longer and longer instead of having deadlines at 28, 30, 32, and then 35 weeks. His fluid levels even increased until they told me we could even delivery normally. Finally, we even decreased our doctor appointments to the normal once a week end of pregnancy frequency. Then one day, I had been telling our main OB/perinatologist that I had been having contractions more and more frequently but her putting off checking me for dilation, she checked me (the 17th of July that year, I think) and made some shocked noises. And decided baby Joseph needed to be induced that week, on July 19th. I was at a 5 and fully effaced, meaning if I was like most women I was already in labor, but not being like most women, I could deliver any moment... including on the drive to the doctor's which took at least 45 minutes and which could possibly be fatal for Joseph.
We knew he would need special care at birth and we were just praying for him to take that first breath and cry. Babies with some of the problems we had found on ultrasound sometimes didn't make it that far. So, Joseph, who we already felt we knew through ultrasound and normal pregnancy stuff, may already be leaving us without even coming home. We prepared as best we could. Tom gave me a blessing the night before. Tom's sister was staying with the kids. We made the drive and got ready for anything. After nothing happening for a while, they decided to break my water and baby Joseph came shortly thereafter.
Those were the longest seconds/minutes of my life waiting to hear a cry, anything, but it came. They examined him and were getting him to breathe more but he was grunting and having trouble regulating his temperature so they held him up to me for just a second before rushing him off to the NICU. Tom told me he had 6 fingers on each hand and 6 toes on each foot and that his kidneys didn't seem to be as bad as we thought because he just peed on everyone. Go Joseph! He also had a severe cleft lip and palate. The next few hours was a rush of activity as doctors kept coming in and talking to me about their findings. They said they were testing him for different things because this PKD didn't seem to fit. Tom went home to be with our other children but would be back and was able to call while I was still in recovery. Then Joseph was breathing better on his own and one of the doctors was able to get a good look at him and saw in his face a genetic disorder that, like Down's, had its own look and they were able to narrow down testing. They then came and talked to me and told me a bit more and I was able to pass this on to Tom.
Tom was there when they confirmed that Joseph had Trisomy 13, a normally fatal disorder than affects every system of the body and this is what caused a lot of the abnormalities in his heart, kidneys, and other areas. Up until this time they had been planning on moving him to Children's to plan for immediate heart surgery to fix some of the things they were finding wrong. This was when he was less than 24 hours old and we were frantically trying to figure out how to get me discharged so I could be with him. Instead, things calmed down as we discussed, with the doctors, a gentler approach. No, we didn't "let" him die. We let him live. We would have had no time with him and he probably would not have lived through the various surgeries to fix the problems in his heart that made his little body work so hard. What we did decide was that we wanted to bring him home as soon as possible and everyone who had any dealings with Joseph at that hospital did everything they could to make this happen.
Anyway, at 24 hours old I walked to the NICU and held my baby. He calmed down immediately. He was living up to his bright coppery hair and gave the nurses a run for their money. With me holding him or touching him they were able to get wonderful ultrasound images of his major organs and how they were working because he calmed down so well. They taught me to read his oxygen sensors when I held him so we could get him back on his oxygen if needed. Even though he went home without any sensors at all. I learned to feed him though his tube, and then to change his feeding tube. We also learned to feed him with a Haberman feeder, which was harder for him but a good experience to not depend on just his tube. He was so sweet and it was heaven to hold him.
I hate pregnancy hormones and right after having a baby, being in a NICU full of babies that would LIVE made me cry sometimes. And I mean outright bawling. I don't cry easily. I knew Joseph's life expectancy was short. I knew he had many things wrong with him, but Tom and I did want him home so our older children could be with him, so we could take pictures and have those memories of all our family, and so I didn't have to be away from my other children as well. As the full extent of his physical limitations hit us, we were having to prepare for a funeral even as we held him at the hospital and later at home, it was hard not to distance ourselves. However, we knew this baby would be ours for eternity thanks to our Heavenly Father's plan of happiness. It gave us strength even as those around us were questioning. The specialist we came in contact with almost constantly had many questions for us and I think they were having nurses keep an eye on me...
We went home after 4 days at the hospital, only one night I spent at home away from Joseph, and they set us up with hospice care. These hospice nurses helped us with anything we needed even though we had been taught anything we might need to know for Joseph's care.
The first night we were home was awful. Joseph didn't react to the car ride very well, our older children didn't react to changes very well, and the evening was just frantically stressful trying to get everyone together for prayer and just some peace. Joseph had some breathing issues that night and we were afraid we were going to lose him that quickly, with none of our children spending any time with him in any positive way.
After that, things calmed down. Joseph rested and adjusted to life at home. He patiently endured his siblings loving attention. Emilie (15 months) was exuberant about her baby and it was hard to keep her from patting him... Benjamin (2 1/2)was starting to talk better after getting his tonsils and adenoids out and loving "baby Jopef". Michael (4 1/2)was older than his years and trying to adjust his thinking to Joseph being here but being sick... and fitting his heart around missing him already. Tom, thankfully, was still on time off from work and we were able to spend this entire time together with his family there too. I think it was easier for us to BE a family at home rather than having some of us at the hospital and some at home. Those eight days were wonderful.
We settled into a routine of being with Joseph. He was just there with us through normal days and nights. Tom and I slept with the light on and with Joseph between us, because he never cried. Even when he was hungry or needed his diaper changed. He did get a little agitated and we were able to meet his needs and help him be with us. After a few days I noticed he would have a sort of seizure, and that he was in pain. The hospice nurses immediately found out what we could give him and we adjust the dosage so he was still awake but not in pain all the time. He was basically having heart attacks. At the same time he started having apnea episodes, where he would stop breathing for minutes at a time. We would use the stethoscope given to us for placing his feeding tube to make sure his heart was still beating. And it was.
If you look at our pictures it was just normal life with a newborn, but we were making the most of every minute. Not that we were cramming every minute with stuff to "remember", but that we were keeping our lives so simple that we could focus on our family for that week. We took pictures, yes, and on one beautiful day Joseph had NO bad periods but all the kids held him and we took pictures of our whole family together and then the kids just gathered around him and loving him. Friends in our new ward brought meals and offered to take our other children. We did try to keep our family together most of the time because we didn't know how long we had. We were also learning about funeral options and such.
On July 31st, we had a peaceful evening but Joseph was still having breathing issues and seizing up. Close to midnight, I wasn't in the room but Tom called to me and told me Joseph wasn't breathing. I came as soon as I could and we held him together. We knew when his heart stopped beating, though we did check. After a while we called who we needed to call. As an amusing aside, the hospice nurse we called first was worried when she came to our complex, as a police car was there, (not at our apartment) and even though we had a DNR order (do not resuscitate) she thought there might be problems. The funeral home workers came later. I changed Joseph and put him in clean clothes and held him for the last time.
The hearse had a big back, and a box to put smaller bodies in. This was 3 am. I walked out with Tom and the workers looked at little Joseph and decided to hold him on the short drive to the funeral home instead of putting him in the back by himself. I know this was irrational on my part, as his Spirit was no longer in that little body, but what a compassionate act. And what a difficult job.
The next two days were days of cleansing and preparation. Family came. Anton was already here but the rest of Tom's family came and my brother Jason came. The kids played at friends' houses and knew Joseph was gone and were sad, but they were very young. We decided they had not been prepared enough to view Joseph's body in a coffin or to see that coffin buried, and they did not attend the funeral.
It was very strange attending a funeral for my baby. I cried at odd times. The music shared there still touches me in a different way than other hymns/music. I appreciate everyone who attended even though we were fairly new in the area and a great deal of family were not able to make it. Our new bishop was out of town for all of this, and our old bishop came and spoke instead. It was a wonderful thing and I know that hope was felt by all there, as we heard of things that were important to us and to Joseph.
Joseph is still touching lives through his website and our family. I hear at least several times a year of someone who has shared our trials and who was touched by our story and able to make difficult decisions. I just want to update his website and share his story all over again.
After Joseph passed away Tom and I got away by ourselves for a few days, thanks to Anton. (and he still wanted kids after this!!!) We went to Atlanta Georgia to spend time completely alone and to renew spiritually by attending the temple there and just spending time together. It was strange overall because I was still recovering from labor and delivery but had no baby to show for it. My due date came and went (I had been 37 weeks along when Joseph was induced... even though he was my biggest baby til Timothy!)
We were able to have a lot of memories preserved through the website and pictures and scrapbooks (Joseph's scrapbook is DONE, don't ask me about my other kids' books...) and I am still moved to tears thinking of the outpouring of love from friends and family through Joseph's entire pregnancy, life, and in all the 8 years since that time.
Joseph was born on my brother Jeff's birthday, and sometimes I forget Jeff's birthday in remembering Joseph's... but not for long. I remember my friend who had a little boy pass away that same year, Daniel, where Joseph gets his middle name. I know they know each other now. And for another friend who had a baby the day before, who is still here, and the things we experienced together as mothers at the same time but in different ways.
Joseph is part of my testimony of my Heavenly Father's love for me and how He knows what each of us can endure and grow through. I know His plan, and I am prepared to share what I know of Him with anyone and everyone who wants to know more. Joseph is my little missionary, he is my angel, and he is my example.
On a lighter note, Tom says we needed someone to go ahead of us so he can plead our case. "Really, they aren't that bad!".
Someday I'll be able to return to his gravesite. We moved away from Cincinnati less than a year later, as Tom changed jobs and we ended up in eastern Ohio.
This time of year we celebrate Joseph's life as a family, and remember him. Sure, we have had 4 children since but they know who Joseph is, through pictures and memories and maybe something more. I had 5 boys in 7 years and they all are really close to me. Now I am expecting again and as our time gets closer, I remember Joseph all over again and how our family is stronger in so many ways because of his life with us.
I am probably going to do a separate picture post with better images than on his website.
Here is the link...
