Along with our families, we tried to make whatever time Anakin had on this earth to be the most fulfilling ever. After the initial couple of days of simply coming to grips with his prognosis, we made it our goal to help Anakin live a lifetime in his short life. From the night he was born to May 30th, Anakin lived in the NICU.
We made sure that he had toys. We read to him. He loved Horton Hears a Who, Brown Bear, Brown Bear, If You Give a Mouse a Cookie, Nobody Like You, I Love You Through and Through, Bible stories, his daddy’s graphic novels, as well as his daddy’s other books. We also took our iPod up to the NICU. He loved music. He didn’t seem to be a fan of Kenny Rogers or REO Speedwagon, but he loved Lynyrd Skynyrd, Rascal Flatts, and Elton John. He listened to a little bit of everything. We took pictures of everything: smiles, yawns, poops, diaper changes, baths, sleeping, awake, etc… When you know that your time with someone, especially your child, is so short, you document everything. And we did. We have over 3,000 pictures of our Anakin.
Although we wanted to focus on Anakin, we also wanted to know as much as we could about his possible diagnosis. I was in the hospital until that Friday and the hospital has no internet access. So, Travis’ first chance he got, he started researching. When you search for Thanatophoric Dysplasia, you mostly find medical websites with lots of jargon (one of the reasons we wanted to create this site, a real-life experience). Everything said 0% survival. Everything mentions 3 “long term” survivors-a child almost 4, a child almost 5, and a boy who was 9. Anakin seemed to have all the classic signs of TD Type 1-the extra skin folds, crooked legs, and small rib cage. You see, the rib cage was so small that his lungs couldn’t expand fully and his ribs wouldn’t grow.
We didn’t want to take the doctor’s word for it. We needed to know for ourselves, see for ourselves. And everything we saw told us that Anakin had TD, but we had hope. There are other forms of dwarfism that could possibly present the same way, but those would allow him to live. Hope, though, was in short supply. It’s hard to go to see your baby everyday with this hanging over you.
We had chromosomal tests done, which showed that Anakin’s chromosomes were perfectly normal. It was something to hold onto until we got the genetic tests back. TD is a genetic mutation and only a genetic test could give us the answer we needed. The test results came back positive for TD. Again, I cried. We decided that day that we wouldn’t leave Anakin on a ventilator to slowly suffocate, to die in a hospital. We decided to take him home, a place that knew only love for him. Although the medical personnel didn’t expect him to live more than a few minutes to an hour after he was taken off of the vent, he lived 40 hours at home with us. And he passed away in my arms while his daddy held his hand. Our souls died.
From the night he was born, Anakin was put on prayer lists all around this nation. Prayer warriors we’ve never met had him on their minds. We couldn’t be thankful enough for that. But some prayers go un-granted, for whatever reason, and allowing Anakin to live was one such prayer. But after the test results came back, our prayer was just for Anakin to get some good quality time at home with us, to see the sunrise with him in our arms. That prayer was answered.
We’ve included, below, more in-depth descriptions of Anakin’s life week-by-week, day-by-day, so everyone can know all about his life. We kept a journal every day so we wouldn’t forget a thing. We hope it might be useful for someone.
Week One (April 28 – May 4)
April 28: Anakin is 7 lbs. 9.1 oz. and 16 inches long. Anakin has a full head of dark hair, dark blue eyes, his daddy’s Fred Flintstone feet, his daddy’s big bear paw hands, Daddy’s ears, Mommy’s nose, mouth, and chin. He knows Mommy’s and Daddy’s voice. He calms when I sing to him.
April 29: Anakin has a head ultrasound, which shows some hydrocephalus. A second neonatologist says it’s possible that Anakin doesn’t have TD (an additional loop to the rollercoaster). Anakin wakes and sleeps like a normal newborn. He also potties like a normal newborn. We both got to change his diapers. We also got toys and his own blankets for him to have in the NICU. His chromosome tests were sent off. Daddy read him Nobody Like You.
April 30: Anakin weighs 7 lbs. 4.4 oz. They attempted taking him off the ventilator and trying him on CPAP. He was on CPAP for about 2 hours, but his blood gas pH dropped and his breathing was labored so they re-entubated. He fussed the entire time on CPAP. He didn’t seem to be a fan of the CPAP prongs up his nose. They try to feed him Pedialyte, but he doesn’t seem to be digesting it well.
May 1: Anakin weighs 7 lbs. 3.3 oz. They continue to try him on Pedialyte, and he still isn’t handling it well. Although he was Coombs Positive, he doesn’t require the bilirubin lights.
May 2: Anakin weighs 7 lbs. 7.3 oz. I begin pumping and they start him on 4 mL of breastmilk every 3 hours. Anakin pees on us while we’re changing his diaper.
May 3: Anakin weighs 7 lbs. 10.2 oz. He is handling the breastmilk great. His blood gases continue to be good. He drools quite a bit so his vent tubing must be re-taped more often than normal. He’s having excellent poopie diapers that we get to change.
May 4: Anakin weighs 7 lbs. 9.7 oz. His breastmilk is upped from 4 mL to 10 mL every 3 hours. He has no residual with his feedings. Anakin is an awesome pooper. He kicks his feet directly up in the air when you release his diaper. He loves to be naked. We got to pick him up today while they changed his bedding. It wasn’t holding him, but it was incredible. He was fussy and his O2 stats kept dropping.
Week Two (May 5 – May 11)
May 5: Anakin weighs 7 lbs. 12 oz. He’s continuing to pee and poop like a champ. We continue to change him. I got to give him a bath while Daddy videotaped. I got to hold him up while his nurse changed his bedding and when I was laying him back down, he just started pooting. So, right after his bath, we had to change him again. He’s an audible pooper! They increased his breastmilk to 20 mL every 3 hours and he’s still handling it well. His hair is browning. He also had a head ultrasound again and there was no significant change. His head and neck seem to be getting stronger because he’s moving a little more. I read him If You Give a Mouse a Cookie.
May 6: Anakin weighs 7 lbs. 14 oz. His breastmilk has increased again to 25 mL. He was started on Aminophylline (an asthma drug) to help his lungs. His daddy gave him his first iPod experience. The first song was “Still Calls Me Son.” They lowered the temperature on his bed because he sweats so much (a trait he got from his daddy). His daddy even wiped him down with a cool, wet cloth. He wakes up right before feedings and is very alert. His eyes are so big and gorgeous.
May 7: Anakin weighs 7 lbs. 13 oz. His breastmilk has increased to 35 mL. As his breastmilk has increased, they have decreased his other I.V. fluids. He had another chest x-ray. There was no increase in chest size but there may be some atelectasis (collapsed lung). He cracked us up with the most hilarious, audible poop ever! Daddy said that it sounded like someone threw Jell-o against a wall. It was good to laugh like that. He was happy after being changed. He spent some time on room air (21% oxygen, what we all breathe) as opposed to the 22-23% he has been on.
May 8: Anakin weighs 7 lbs. 11.3 oz. Another chest x-ray showed no atelectasis. His breastmilk was increased to 40 mL, and his fluids were decreased again. He was awake for a good part of the day. We wiped him down with a cool, wet gauze. I began reading him Horton Hears a Who because “a person’s a person no matter how small.” Daddy lifted Anakin’s legs to help him poop and Anakin was very happy.
May 9: Anakin weighs 7 lbs. 12.3 oz. This morning his ventilator tube was pushed too far in so his stats dropped and his heartrate and blood pressure were way high. So, they did another x-ray to make sure it was the tube, it was, so they pulled it back, his stats got better. But, because of the drama, they upped his vent rate to 25 bpm (from 15 bpm). His blood gases were immediately better. He continues to do well on the breastmilk. He rested well and continued to pee like a champ.
May 10: Anakin weighs 7 lbs. 12.1 oz. They increased his breastmilk to 50 mL every 3 hours. He has really bounced back since yesterday morning. He is started on a second medicine for his lungs (which requires him to have a pre-emptive dose of Zantac). His gases are good. His vent rate is dropped to 20 bpm. Daddy played him more on the iPod and he loved it, his heartrate calmed, his blood pressure dropped, his oxygen increased, and he woke up for about 45 minutes with us.
May 11: Anakin weighs 7 lbs. 11.4 oz. Today is Mother’s Day. They try him on CPAP again. He was really fussy in the beginning, breathing through his mouth and not his nose, so they sedated him a little to calm him down. When he calmed down, he was fine on the CPAP, but after an hour, he got crazy fussy again, dropping his oxygen, so, he was put back on the vent. His vent rate was upped to 30 bpm. His head measured 16 ¼ inches (a quarter inch increase since last week, which is normal). He is still 16 inches long.
Week Three (May 12 – May 18)
May 12: Anakin weighs 7 lbs. 11.7 oz. He got his first haircut today (before and after pictured above) at 2 weeks old. We wanted to get a lock of his hair for his baby book, so I just cut off his “party-in-the-back.” I also trimmed around his ears since his hair went down to the middle of his ears. They replaced his UAC line (one of the lines in his belly button) and put in an I.V. line in his belly button for his fluids. The fluids line stopped working so they put an I.V. line in his head temporarily. His vent rate is still 30 bpm. He was put on Vancomycin (antibiotic) for infections in his lungs.
May 13: Anakin weighs 7 lbs. 12.2 oz. His vent rate is down to 25 bpm. His breastmilk has been increased to 55 mL, so his fluids are down to almost nothing. He’s spending quite a bit of time on room air. He’s still on Aminophylline and Vancomycin. He’s still a great pooper and wets a diaper like nobody’s business.
May 14: Anakin weighs 7 lbs. 13.7 oz. His breastmilk was upped to 60 mL, and his other fluids/lipids were stopped. They took the I.V. out of his head. His vent rate was dropped to 7 bpm. His gas pH was okay. His nurse had to change his bedding this morning because he peed all over it while she was changing him.
May 15: Anakin weighs 7 lbs. 15.5 oz. Daddy read him some graphic novels, and he loved the pictures. His O2 rate is between 25 and 30% (a bit higher than is his normal). They took him off the vent rate completely, but was put back on a rate of 15 bpm sometime in the middle of the night.
May 16: Anakin weighs 7 lbs. 15.3 oz. His breastmilk is increased to 70 mL every 3 hours. He got tummy time for the first time today, which he loved. It was the first time that his daddy and I got to see his back (it’s fuzzy). He seemed much more peaceful on his tummy. We also got his handprints and footprints for his baby book. The neonatologist told us that he was going to call about the genetic test results today. We asked him not to tell us until Monday, we want one more weekend of hope.
May 17: Anakin weighs 7 lbs. 12.3 oz. Daddy read to him, and I read him The Sorcerer’s Apprentice. He got his last dose of Vancomycin. He audibly pooped for us. He’s so much fun!
May 18: Anakin weighs 7 lbs. 14.2 oz. They took the I.V. line out of his tummy. His head measured 16 ½ inches. He had tummy time again today and we got it on video. He threw up a little at his 4:30pm feeding. It was the first puke that we’d seen or heard about. We finally got a picture of him yawning.
Week Four (May 19 – May 25)
May 19: Anakin weighs 8 lbs. 1 oz. The genetic test results are back, it’s confirmed that he has Thanatophoric Dysplasia. We cried. They pulled the UAC line out of his tummy. His only internal tubes are the vent and his feeding tube (both down his throat). We get to hold him for the first time. He pooped really loud when Daddy held him. His stats were great when we were holding him. He and his daddy got baptized together (although we believe in believer’s baptism, we felt like we should baptize him). His daddy gave him a bath. After his bath, he got to wear clothes for the first time. Then the nurse handed him to me to hold again and his O2 dropped so low that he turned blue. We laid him back down and his rate was upped for a couple of hours. We decide today that we want to take him home, and that we’re going to do it on May 30th, so, that’s when he’ll come off the vent.
May 20: Anakin weighs 8 lbs. 2.9 oz. He had another O2 drop spell this morning. Our friends came to see him. While changing his diaper tonight, he started to pee but I didn’t notice and he peed all over his outfit. For the first time he wore an outfit that we bought him, a Cutie Pie sleeper with a giraffe on it. We forgot his iPod. He was not happy.
May 21: Anakin weighs 8 lbs. 4.7 oz. We bought new outfits for him. He has to have preemie size in sleepers and newborn in onesies. Daddy and I filed his long little fingernails. Daddy and I are learning how to check the placement of his OG tube (feeding tube) and how to feed him. He pooped on me while I was changing his already poopie diaper. He loves the nature sounds on his musical star toy that his mammaw got him. We took him his own mp3 player. He wore his dino buddies outfit.
May 22: Anakin weighs 8 lbs. 1.5 oz. They increased his breastmilk to 75 mL. Our friends from work came to see him. He had another O2 drop spell. He’s wearing his lizard onesie.
May 23: Anakin weighs 8 lbs. 3.3 oz. He had a poopie blowout. He even got it on his outfit. He wouldn’t calm down at all so they gave him a sedative to calm him.
May 24: Anakin weighs 8 lbs. 4.9 oz. He had mostly a good day. He had some de-statting while pushing to poop, but his stats were fine after he finished. He had some green residual at his 1:30pm feeding. His mammaw cut his sleeves off because she said they were too long, you couldn’t see his hands.
May 25: Anakin weighs 8 lbs. 2.7 oz. He got tummy time today. His mammaw and his cousin Brady read him Brown Bear, Brown Bear. His pappaw helped me change his diaper. He got to hear Bob Marley for the first time, he took a second to get used to it, but he liked it. He got to see all his uncles. His mammaw started reading him The Monster at the End of the Book, but he started to de-stat so she quit.
Week Five (May 26 – May 29)
May 26: Anakin weighs 8 lbs. 4.2 oz. Anakin threw a crying fit today just because he wanted his daddy. His stats went perfect as soon as his daddy walked in the curtain and said, “What’s wrong with my boy?” and put his hand on Anakin’s head. His sugar was high this morning so he was given a sedative to calm him down, and at re-check it was fine. He had lots of visitors and his other pappaw helped his daddy give him a bath.
May 27: Anakin weighs 8 lbs. 4.5 oz. He got a sedative again this morning because he wouldn’t calm down. He had quite a bit of residual at his 10:30pm feeding. And, as I was switching sides of the bed with Travis, I noticed Anakin’s chest wasn’t rising, but his O2 was in the 90s. I called for the nurse practitioner who was near, and by the time I turned back, his O2 was in the 70s. He wasn’t fighting though, he had just quit breathing. They suctioned him and his stats came back up (with vent help). One of the nurses said they saw his O2 hit the 20s. We can tell that he’s starting to wear out.
May 28: Anakin weighs 8 lbs. 8.1 oz. Today was his 1 month birthday! We had a party for him in the NICU. I baked him a cake with Sesame Street on it, and we had Cars party hats, plates, and napkins. The nurses, Daddy, and I sang him happy birthday. Daddy gave him a birthday flip on his tush (1/12 of a year=flip). He got presents: a little dump truck, a ball and glove, a Hot Wheel, a prayer doll, and a blanket. We even put a little chocolate fudge icing on his lips and tongue and he loved it! He slept through the whole party but his tongue kept licking away. They upped his vent rate to 25 bpm because his CO2 rate had been increasing. He had another episode tonight, although he was on room air for quite awhile. But his breathing slows and he requires suctioning before he will get better. He got more tummy time. And he peed on his outfit and bedding again. He also got a round of Lasix to get some fluid off.
May 29: Anakin weighs 8 lbs. 4.9 oz. Anakin was awake all day, from 7am-8:30pm (minus a couple of catnaps). Daddy held him again for about 45 minutes. I gave him a bath, and we put him in his coming home outfit, it has a doggy on the butt. Nervous about taking him home tomorrow, we spent lots of time in the NICU today.
Coming Home
The morning of May 30th, Anakin weighed 8 lbs. 6 oz. Travis and I got to the NICU early (7:45 am) to see him. He woke up for us, we fed him, and we talked to him. We tried to explain to him what was going to happen and why we were doing it, maybe trying to convince ourselves as well as him.
We cannot even begin to describe the intense nervousness that we felt that morning. We were excited to get to take him home, but we also knew that taking him home meant that he would be gone soon. We soaked up every second before things started happening.
First, the portable oxygen tanks were delivered. Then our nurse started gathering everything we would need at home, syringes, gauzes, nasal canulas, medicines, feeding tubes, etc… She seemed to be trying to keep herself quite busy, she was very attached to Anakin, the greatest nurse, and I think she didn’t want to have to think about it. It started to get very scary. The time we had been dreading so much was getting close.
A couple of nurses helped Travis take everything to the car. Then the sedative arrived. And I knew when they gave that to Anakin, there was no turning back. When they started to give it to him Travis was still outside and I cried and cried while they gave it to him. The nurses didn’t leave me alone but I was nauseous and hurt so bad. Travis showed up as they were finishing the dose. They gave it 10 minutes to kick in.
And then the time was upon us. Our respiratory technician came in and prayed, and the hospital chaplain came in and prayed. Then, at 10:30 a.m., our wonderful respiratory technician pulled Anakin’s ventilator tube and feeding tube out. They quickly put his nasal canula on him and monitored his oxygen level. He was holding his own oxygen in the 90s. That was a huge relief.
Next, it was time to move him to his carseat. Travis and I didn’t feel like he would do well in the carseat because it would put extra pressure on his lungs based on the position it required him to be in. However, it is the law that they go in a carseat to leave the hospital. But, we were right, the carseat sent him into distress. An incredible woman (who we could never re-pay) rode home with us and bagged Anakin (necessary because of the carseat), while Travis drove. It was only a 2-3 minute ride. Hospice met us at our apartment.
We arrived home and I walked our son into our apartment. I quickly sat down in our rocker/recliner that we’d bought for us to rock him in. Because we had been told to expect only minutes to an hour with him, I handed him off to his daddy, we both needed to hold him at home. Within a couple of minutes at home, he started to fight, to turn blue, and we thought that was it, but we suctioned his mouth out and he recovered. About an hour later, he did the same thing. Hospice told us that eventually we’d need to quit suctioning because that would prolong him. But, we decided that if there was something we could do, we would, we knew he was going to go, but we were told that his lungs would give out, not that he would choke, so we weren’t going to let him.
After the second scare, Anakin stabilized. We figure that we were getting that bit of fluid out of his lungs left by the ventilator. By 2 p.m., his oxygen tanks were running down. You see, they were so sure he wouldn’t live long that they’d only given us two portable tanks. When we all saw that he was going to outlast the tanks, and possibly survive the night, our Hospice nurse and social worker jumped into gear to get an at home oxygen machine (concentrator), more of his medicines, and more sedative. Our Hospice support also looked into getting us an in-home 24-hour RN to stay with us. We declined the RN, however, because she wouldn’t be able to do anything that we couldn’t. It needed to just be us. And, about 6:30 p.m., Hospice left.
We hadn’t talked to our families all day. We didn’t want them to think that something had happened to him and we weren’t telling them, so we called. Of course, they answered the phone prepared to hear the worst, but they were so happy for us. We even put him on web-cam for a couple of minutes. We told them we’d call them in the morning unless something happened in the middle of the night. We watched the NBA playoffs that night. Travis was excited to get to watch sports with his son, we’ll always be Celtics fans now. We even brought our dog to him so he could pet her. He woke up and looked around, at us, at his home. He actually got to see home.
Although we were exhausted, and hungry, we held Anakin all night long. We fed him every 3 hours, he got his medicine every 8, and his sedative every 6 (as needed). He was never out of our arms. We sat on the couch in the living room with him the entire night. We took catnaps. When Travis slept, I was awake. When I napped, Travis watched us to make sure I didn’t drop Anakin. Back when we found out that he had TD, Travis and I had started to pray for quality time at home with him, to see the sunrise with him. And that prayer was granted. Early Saturday morning we opened the blinds and watched the sun come up with him in our arms.
Around 5 a.m., we put him in his bassinet for like 5 minutes. Neither he nor we liked him in there. After the sun came up, we called our parents again. And we heard from Hospice pretty early. Hospice was utterly shocked that our baby boy was so strong. The Hospice nurse checked in a couple of times. We watched Big Trouble in Little China. Anakin got to hear the ice cream truck. We tried to do everything we could for him while he was home. He continued to run through diapers.
He had 4-5 spells on Saturday, not like those first two, though. He didn’t turn dark red, then blue. Instead, he would just start looking dusky. His breathing had started changing. He’d even miss a breath then have to take a big gasp. Every time, we thought he was gone. Our hearts would drop, we’d cry, we’d hold our breath for him. We lived every moment believing it was his last.
We called family again before their bedtime. That night, we continued our turns with catnaps. I woke Travis at 2:15 a.m. so he could get Anakin’s breastmilk ready for his 3 a.m. feeding. Anakin wasn’t good. At 2:45 a.m., Travis brought in his milk, but I told him that Anakin didn’t look good so we decided to hold off for a few minutes. We just sat and watched him. At 3 a.m. Sunday morning, June 1st, he started looking really dusky and his breathing was so slowed. I started singing to him the song I made up for him, the one I sang him every night. Travis held his hand and talked to him. We both told him how much we loved him as he took his last breath. We stared at him, praying that he was going to take a big gasp, but he didn’t. We wrapped him up and Travis held him while I called our Hospice nurse.