On January 17th, 2004, our son Ty Jordan was born. Today we celebrate ELEVEN years of LIFE and the amazing blessing our boy is. I took a little walk down memory lane this week and even now, over a decade into this gig, and I still get choked up. I told my aunt today on the phone that God is so merciful when He doesn’t give us too much information before we are ready for it. So often I plead with God for future knowledge pertaining to one thing or another but in hindsight I realize that He gave me about as much information as I could carry at the time. Walking through the trial by fire of a baby born very prematurely was hard. So hard. But…the blessings have also been incredible. Sometimes miracles hide.
As this blog doesn’t go back to 2004, I don’t have any of these pictures (or the story for that matter) posted here (I have a separate NICU blog), so I will give a brief summary here.
Due to a placental abruption, Ty was born via emergency c-section (footling breach) at 25 weeks and 2 days gestation (15 weeks early). He was born at Chandler Regional Hospital but Chandler Regional did not have a level 3/4 nursery so he was immediately airlifted and taken to Banner Desert. We had met Ty’s birthmom a mere 3 weeks before he was born (she told us on Christmas Eve that she had chosen us to be Ty’s Daddy and Mommy). He was due on May 1st so we were not expecting a call on January 17th. As Jim and I had already lost 10 babies in 4 miscarriages (multiples each time) over the previous 18 months, we had turned to domestic adoption thinking we would be spared the grief of losing another baby. When we received the call that Ty was born, I still recall dropping to my knees in our garage, sobbing my heart out, trying to prepare for the loss of our 11th child. Nothing can prepare you for that.
Ty was probably 2 hours old when we got to see him. The above picture was taken in those first few hours. He weighed 2 pounds and was 13.5 inches long (which was considered good sized for a 25 weeker). His skin really was crazy red like that. At 25 weeks, a baby’s skin is near translucent so the blood in the body is just more apparent. Because he had a difficult birth, his body was swollen and bruised as well.
Though we didn’t want to try it that first night, Daddy’s ring would have fit around his wrist. It’s hard to see perspective on size but that visual should help. You can see in the shot above that you can see the veins in his fingers. His little feet were the length of the width of Daddy’s pinky and ring finger. Just look at how tiny that is on your hand.
These top two are the pictures I hate the most. He might have been a week or two old here. I am showing them to you because they are part of the story but boy are they hard to look at. I start crying every time I see them. You would think that a decade would be enough time to get me past this. It isn’t. Incidentally, the videos I took on this day were stolen out of my car and I half wonder if that was a blessing in disguise because this picture is so hard to look at much less video.
Ty was only 1 pound 14 ounces in those pictures and I have to tell you, he wasn’t doing well. As a quick NICU summary…while in the NICU:
Ty had 7 blood transfusion.
Developed a pulminary hemorrhage.
Developed a PDA (pulminary ductus arteriosis)
Developed ROP (retinopathy of prematurity) Grade 1
Developed a bilateral brain hemorrhage. On a scale of 1 (mild) to 4 (severe), it was a 4 on the right and a 3 (later downgraded to a 2) on the left. This was the most significant injury that they predicted would have the worst outcome(s).
Developed periventricularleukamalacia (PVL) as the result of the hemorrhage above. Another very serious issue.
Was on a ventilator for 6 weeks.
Was on oxygen for a full year.
Was on an apnea monitor for a year.
Was on a pulse ox for a year.
Had a feeding tube until he was about 6 months old.
Was in intensive care for 83 days.
Later had 2 eye surgeries and 2 hernia surgeries.
Ty had so many apnea and bradycardia spells as well as bronchospasms that required an ambu bag resuscitation near daily in those first weeks (or several times a day) that I had post traumatic stress from alarms for a long time. Even after he was home from the NICU, he had a significant issue with apnea. He stopped breathing on us at home over fifty times. Yes I said 50!
We almost lost him a few times. One incident in particular still haunts me. He quit breathing while I was rocking him in the NICU (middle of the night) and his oxygen level dropped to 12 and they broke out a code kit to save him. Actually, his levels were lower than 12 but I was so traumatized I ran sobbing into the hallway when I couldn’t bear watching in that moment.
I am so grateful for the nurses that worked so hard to keep my boy breathing. I remember several days where a nurse simply couldn’t and wouldn’t leave his side the entire day because she had to rescue him continually.
IT. WAS. INCREDIBLY. TERRIBLE.
I believe Ty was 11 days old here. That is a beany BABY to give you perspective.
The diaper comparison above is a newborn diaper compared to a micro preemie diaper. Every time I see a newborn diaper it seems so tiny – not when compared to the diapers made for micro premature babies though.
As I recall, that shoe was a size 0 (and he was several week old here) and this outfit was a 3-4 pound preemie outfit that swallowed him up.
Getting a little bigger in the lower pictures and off the vent.
This probably won’t stand out to you but in that top right shot I have an abrasion on my head. The NICU days were taking their toll and I was so tired that when I woke up to go to the bathroom during the night, I stumbled in our bathroom and fell head first into our toilet. Ouch. Jim slept through the whole thing and wondered what on earth happened to me the next morning.
I couldn’t hold Ty until he was 2 weeks old so that top left shot was in the early weeks but the others were taken after he transferred to Banner Thunderbird for his final 4 weeks. He was in the five pound range there. He looks so chubby in that lower left that you would assume he would be bigger than 5 pounds. As a mama to three premature babies and a newborn photographer, I can tell you from experience that weight looks different on every baby. In the case of a micro preemie (especially one on oxygen), they carry excess water due to their lung issues so Ty was always very swollen. He was on a lot of medications after coming home including diuretics.
Top two pictures were at Ty’s baby shower. Bottom picture is of Grandma, me, Amanda (Ty’s birthmom), Cheri (Ty’s birthgrandma) and Sweetie. We all worked on his John Deere nursery together before he came home from the hospital.
Ty came home at 37 weeks and weighed about 6 pounds and 6 ounces I think. These pictures were taken over the summer (he came home in April of 2004). The yellow tube in the top right picture was his NG tube for his pump feedings. The belt around his chest in the top left picture was his apnea belt.
Here was his birth announcement card:
The top picture was taken about a week after birth and the bottom picture was taken on his due date 15 weeks later. He weighed 7 pounds and 14 ounces and was 20 ounces by his due date. You can really see just how tiny he was by comparing the beanie bear between birthdate and due date.
So ya…that day turned our lives upside down. I am not the woman I would have been. I have been immensely and irrevocably changed. While I, naturally, wish that Ty would have been born full term and not had to face any of this, I also have to confess that the broken road has blessed me in a million ways too.
I can’t tell the above story without an undertone of grief. It’s still there. I don’t think it will ever completely go away. BUT…that was NOT the end of Ty’s story!!!!
Eleven years later!!!!!!!! The most precious, adorable, infectious, HAPPY, JOYFUL, content, loving, compassionate, unpretentious, generous of spirit, funny, beautiful boy…and he is ours…and we are blessed beyond measure. He didn’t just live…he thrived. He has taught our family more in his 11 years than we will ever hope to teach him. Watching this kid grow and live (and love) life (and he does LOVE life) has been the experience of a lifetime. In the garage that night, God didn’t spell it all out for me. He didn’t tell me how hard it was going to be to watch him suffer. He didn’t tell me that I would have to be brave enough and wise enough to spend the first 18 months thinking about his survivable at all hours of the day and night. He didn’t tell me that I would run an effective NICU out of my home that first year. He didn’t tell me that we would all brave the storms of cerebral palsy and dyspraxia and tourette’s and SPD, OCD and asperger’s and every form of therapy you can think of. I wasn’t ready for all the information then. He also didn’t tell me that few people on earth have ever experienced the type of joy filled person that Ty is much less had the blessing of being his mama. He didn’t tell me that Ty would teach me to love more than I feared. He didn’t tell me what a humbling experience it was going to be to raise him. He did assure me that I was going to love him with all my heart though and in those early days…that was enough to know. No words could have described Ty anyhow. Ty must be experienced and what a priveledge it has been, and is, and will be.
Happy Birthday to my precious boy. I love you with all my heart.
1 Corinthians 1:27
…but God has chosen the foolish things of the world to shame the wise, and God has chosen the weak things of the world to shame the things which are strong.
An adaption of this verse was put on Ty’s isolette by his neonatologist. It has become our anthem. God is good. All the time.