Categories: Meditations on Scripture, Our Journey, Our Journey (chronological).
I’m amazed at how many people have read our blog.
Not only those who have read it as we lived it, but more recently, several have commented that they started from the beginning and got caught up with the rest of you in one sitting. Whoa. That is a lot of reading.
And the more I read the comments, from close friends and distant friends and complete strangers, I believe that James has touched more lives than we’ll ever know. At the conclusion of his memorial service on Sunday, both Abby and I felt a sense of peace as we celebrated the time we were given with him, enjoying the video footage that preserves his memory, and imagining the footage we don’t have of all the amazing fun he’s having now.
You, the reader of this blog, have been an important part of our journey. Many of you who aren’t in Central Florida were not able to be at his memorial, but this post is intended to share with you what that was like. Some of our readers are parents of other special needs children who have been strengthened in their daily battle. Others are parents or grandparents of perfectly healthy kids and told us they hugged them a little tighter this past week. But for all of us, I believe James has a legacy to leave, and I hope that you are blessed to watch these videos.
The first video is a photo slideshow of our journey. It runs about 15 minutes.
The second video is me remembering James as a fighter, sharing a couple things he taught me, and giving thanks to those who have walked alongside us. Mostly try to hold back tears. It runs about 15 minutes.
The third video is our pastor, Curt, who briefly relates his own journey with a cancer diagnosis before sharing a meditation from 2 Samuel 12. I offer this disclaimer: although it concerns another young boy who died, is not directly an analogy about James. Rather, it was about three ways that we can glorify God and honor the memory of James: Sorrow, Worship, and Comfort. In my sharing, I mentioned that the parable of the sower (Matthew 13 (I accidentally said “16” on the stage)) shows us that God sends tribulation like sun that scorches those whose roots are not deep. Curt is in my life so that my roots run deep. And that’s why I beg you not to skip this video. Without someone like him in my life, there would be no sweetbabyjames.info. It is 30 minutes long.
Next is a song performed by one of our closest friends, “Uncle Jeff” Stairs. He loved to cuddle James and called him “Captain Lash” and “the Jim-Jam.” It’s about 3.5 minutes. The video doesn’t come over the audio until about 22 seconds in.
Finally, the service concluded with a video montage about the little man who was ours for 482 days. It’s similar to the video we posted up on YouTube for his first birthday, but there was some later footage added, as well as some earlier footage we discovered and added. This runs 15 minutes.Meditations on Scripture, Our Journey, Our Journey (chronological) | Comments (38)
I can honestly say that James was feeling the best he’d ever felt in his life up until he died. Soon after I asked you all to pray for Dr. Yang to come up with a solution other than shots for his diabetes insipidus, he did. He told me to start giving James 8-10 oz. of “free water” (which means plain water that his body can use right away) a day. His next sodium blood draw was 152, down from the 160s (ideal range is 135-145), so Dr. Yang said we were on the right track. He raised the amount to 10-12 oz. to get it down further.
When I first started the free water, I had this crazy hope that I could get James to drink it all instead of putting it through his tube. After half a day, though, James had only drunk 3/4 oz. from his sippy cup, and sometimes he coughed on it. So I ended up tubing most of it. However, John is a big fan of free water himself, and he often shared his with James, whether it was a droplet off his fingertip or a carefully poured swig from his glass.
As I had noted, the higher dose of Reglan (for the gas) stopped working, but we got a prescription for erythromycin, which is an antibiotic in a stronger dose but a motility agent in a weaker one. I couldn’t tell that it helped with his gas discomfort at all, unless it helped empty his stomach’s contents for the subsequent feed two hours later.
I say two hours later because for the last two weeks, I fed James every two hours, eight times a day. I worked off the hypothesis that he had delayed gastric emptying. This would explain the projectile vomiting in the NICU after he had a good bottle session as well as the need to retch after every feed at home; his stomach couldn’t pass on the food fast enough, so his body tried to send it out another exit. I left a message for the GI doc asking if he had any suggestions to help with this since the medications didn’t work, but he never called back. I replaced the apple and prune juice James used to get with each meal (for the enzymes and the constipation) with the free water Dr. Yang prescribed. With smaller-volume feedings, James still had some retching but the venting sessions were shorter. I decided the time spent feeding him every two hours and venting for 10 minutes would total less than feeding him five times a day with the feeding plus venting taking an hour each time. I tried to prepare the formula, water, enzymes, and other meds before James got up and while he napped so I didn’t have to spend a lot of time getting it ready each time. When Dr. Yang increased his free water to 12 oz./day, I decided to put 4 oz. of it through his tube in the middle of the night so the daytime volumes would stay low.
The free water helped his constipation quite a bit, and with him being on the carb bolus system it was easy to manage his sugars despite the change in feeding routines. Aside from the continued retching/gas, James seemed to be in great shape. The only troubling thing I noticed was that his head circumference measurement wasn’t increasing during the last two months. I don’t know if that was significant or not.
In the two weeks before James died, John and I were on our own with him (without grandparent help) for longer than we had ever been since he came home from the hospital. While I know it is hard on the GP’s now to feel like they missed that special time, it was a sweet time for us as a nuclear family. We both had a lot of time together with James, and he entered into our social lives more fully, so he got to interact with a lot of other people. I took him out for coffee with a friend, we celebrated John’s birthday party game night, he watched John and his buds practice for the church variety show (James would chuckle at their thriller dance moves), and he entertained a stream of visitors in the cry room during the show itself. Looking back, it seemed like God sort of put him on a final tour.
I gave him his first major haircut a week before he died. He barely fit into that Bumbo chair that used to dwarf him when he came home from the NICU! It was a challenge to cut his hair, mainly because he kept turning to look at me instead of holding still. I cut off a few more curls than I meant to. He looked like such a big boy afterwards.
In our therapy time, James made incredible progress standing, progressing from me holding him under his arms to leaning on a box for support, to pushing up on the box, to doing the same with a taller chair, to showing a clear desire and attempt to “cruise” to a neighboring chair the day before he died. I really thought he was going to walk somehow, even though he still couldn’t sit well, roll over, or crawl. He was incredibly motivated.
We also worked on picking up large beads and dropping them into a cup. He was able to do that 3-4 times after many attempts that last day. Unfortunately his hearing aid was broken for the last week and a half, so he couldn’t hear much and I didn’t hear him try to talk as much. I might have heard a “go” once.
The night before he passed away, I took a sleepy James in to say goodnight to Daddy, who nibbled on his heels and toes, the surest way to make him laugh. I checked on him during the night when I heard him cry and other times when I thought I heard him, but it was just the wind and the rain outside.
Those last days are how I want to remember James. I hate the memories of the next day.
Thank you to everyone who has posted comments on our post “482 days” or invited others to read James’s story. Reading your words has brought immense comfort to us and to our families during these days.
We will post James’s funeral videos after the services this weekend, so make sure you come back and visit to see them. We’ll probably continue to process our thoughts and emotions on this blog beyond that time as well.Our Journey, Our Journey (chronological) | Comments (43)
James Gjertsen’s family will have visitation hours at 1724 Fox Glen Court, Winter Springs, on Saturday from 7-9 pm. This is an open house time to visit with the family if you wish to.
The funeral will be on Sunday at 3pm at the Altamonte Springs Seventh Day Adventist Church at 455 Maitland Avenue (the facility our church, Orlando Grace, uses on Sunday morning).
We encourage you to leave a comment on the previous post, “482 days.” We love to hear how James or the blog has impacted your life. It helps us count all those days as joy to know his life was treasured by you as well as us.
We also ask that, in lieu of flowers, donations be made to any of the following charities on James’s behalf: The Carter Center for Research on Holoprosencephaly, the Juvenile Diabetes Research Foundation, or the Ronald McDonald House.
Carter Center for Research on Holoprosencephaly
Checks made out to: Texas Scottish Rite Hospital
memo line: HPE Research
2222 Welborn St.
Dallas, TX 75219
All charities listed above are fully tax-deductible entities.Our Journey, Our Journey (chronological) | Comments Off on services
Categories: Meditations on Scripture, Our Journey, Our Journey (chronological).
The last time I checked James, at 3:50 am, he was fine. When I woke up at 6:15, he wasn’t breathing and his lips were pale. John called 911 and I gave him CPR, but a dozen doctors and nurses at the closest hospital couldn’t resuscitate him.
James lived 482 beautiful days, almost to 16 months old. He was doing so well! We knew HPE kids could die suddenly, but we thought James was past the fragile stage.
Now Jesus is taking over his care. It’s so hard to let him go. We will blog later about how his last weeks went and put on some more photos and videos.
Here is a something I wrote for James a couple weeks ago. I didn’t realize how God would answer this prayer.
A Psalm of James (based on Psalm 129)
They have struck at me since my conception–
deformity, delays, disability, death–
They have attacked me until my list of problems is unspeakably long.
But they have not defeated my heart.
Shots, medications, blood draws and surgeries–
my scars are many, and long.
But God is mighty– He has freed me from most of that.
Now I can live a happy life at home and feel good most of the time.
May my disabilities be so diminished
that I no longer bear their names.
May my medical problems wither away as I grow stronger,
the list of problems dwindle to a handful, not an armload.
May all the people bless the God who triumphs over deformity, delays, disabilities, and death.
He is stronger now, and his medical problems are gone. He can sit, and roll over, and walk, and pick things up and drop them when he wants. He can hear and talk and understand more. He can finally eat with his mouth, with no extra medicines and no pricks for blood sugar or insulin, and best of all, no painful gas afterwards. He is very happy to be with Jesus and his little sister now, and he understands that Mommy and Daddy will be with him again someday. He knows we did everything we knew to do to help him, and that we would do it all again for as long as we needed to, with joy.
He knows he was loved to the utmost. And because Jesus first loved us to the utmost, and died to take our penalty for our pride and disobedience, we praise God who does triumph over death. “If only for this life we have hope in Christ, we are to be pitied more than all men” (1 Cor. 15:19). We do believe in a resurrection to eternal life–for those who treasure Christ, to live with Him, and for those who don’t, to suffer forever apart from Him. Since James was too young to understand this, we believe God will have mercy on him and that we will see him in heaven someday. And we hope that we will see you there too.
But oh, the loss is hard to endure right now! He is happy but we are missing him so much. Please pray for us to continue to cling to Jesus in our grief. We will post details about the memorial service soon.
One thing you could do that we would appreciate is to write a comment on this post about James, expressing whatever he means to you or why you have followed his story all this time or what you loved about him. We would enjoy hearing any of these things and knowing that his life touched yours.
Meditations on Scripture, Our Journey, Our Journey (chronological) | Comments (387)
Categories: Meditations on Scripture, Our Journey, Our Journey (chronological).
According to the medical examiners, Dora Jewel Gjertsen was perfect. Her chromosomes were normal, and every part her body, inside and out, was formed correctly. According to Scripture, her soul is eternal. I like to picture her in heaven in a place I call the Baby Garden.
During the initial shock of Dora’s loss, God sustained my faith in His goodness, but after a month of running in crisis mode, I started to sag. I began to feel like God was against us, that there was no way to reconcile her miraculous conception with her unexplained death. James wasn’t seeming to improve much and there just didn’t seem to be anything to look forward to. I felt sad and hurt and totally unsanctified. I didn’t like it, but I couldn’t snap out of it.
Thankfully, God had ordained that I would be in a Beth Moore Bible study on the Psalms of Ascent this summer, so when I finally forced myself to open my Bible and try to catch up on my homework, He met me there and pulled me out of the pit. He reminded that it was possible to be confident and sure in the Lord (Psalm 125:1), even when I am walking by faith in His favor, and not by sight. Another thing I learned was that those who sow in tears will reap with songs of joy (Psalm 126). This encouraged me that a time of sadness could be a time to prepare for a future harvest, and not to stop working hard on whatever task God has assigned me when things seem unfruitful. At first, it was hard not to feel bitter when I read verses saying that everybody who fears the Lord is going to be prosperous and have lots of strong children (Psalm 128). Now I feel like I can interpret them less literally to mean we will be full of faith and purpose and have spiritual fruit. This is much more true to God’s character, because we know His overall purpose in our lives is for us to grow to be happy in Christ, not just happy by ourselves.
Since then, God has given us a lot of bright spots. James in particular has had a very exciting week. On Thursday he got to see miniature horses that were visiting patients at the children’s hospital. He stroked the mane and nose of one of them. Friday he had his first away-from-home play date with his friends Lydia and Isabella. I am happy to say that he behaved very well and did not steal any toys. Saturday he took his first bubble bath. We have a family beach trip planned next month, and I wanted him to get used to being in the water. He loved it. We usually bathe him on the bathroom counter because immersing his insulin infusion site on his thigh makes the adhesive soak off, and putting on a new one is an extra prick. Saturday morning I knew I already had to change it, though.
He also went to his first pool party on Saturday – the first birthday of his buddy Parker. He got to “swim” with Daddy and float around in a baby floatie thing. He really liked the water, so I can’t wait to do that again. I wish I had pictures to show you. I do have a photo of his first wedding, on Sunday. He filled his pants right at the start of the ceremony and slept through the rest, but he was the life of the party at the reception. We sat at a table full of college girls, and he knows how to work that kind of crowd.
Tuesday James took his first trip to the Sanford Zoo. It was hot and the animals were mostly hiding in their caves, but he seemed to enjoy the porcupines and the farm animals in the petting zoo. Actually to be honest, his favorite thing was all the other little kids. He much preferred looking at them to the animals. We also took a little train ride at the end, and he seemed to like that. It felt good to give James a “normal” experience like regular kids his age would have, even if he didn’t exactly declare it to be his favorite thing ever.
Medically, James has had some victories and some setbacks. For some reason, James is not absorbing the oral form of DDAVP (anti-diuretic hormone) used to treat his diabetes insipidus (water diabetes), so we are going to have to go back to the shots unless Dr. Yang gets a different bright idea. I am praying for that bright idea, because the shots are going to be over 1/3 mL in volume, twice a day, and that hurts!
On the plus side, we moved James onto a complete carb-bolus strategy for his diabetes mellitus (sugar diabetes). It’s what most people with insulin pumps do, and after a couple weeks of trial and error to discover his proper settings, it’s keeping James’s blood sugar below 350 most of the time. We give James a dose of insulin every time he eats, so that when his sugar starts to rise from the food being digested, the insulin is also increasing to cover that sugar. If it wasn’t enough insulin, we just give him a little more later on. What is working right now is about 8 units a day for his basal rate and 11 as carb boluses.
A couple weeks ago his new pediatrician prescribed Reglan for his terrible gas; it stimulates gastric motility so his food would be moved out of his stomach more quickly and thus lessen the bloating and gas pain that leads to the marathon venting sessions. Well, it was like a dream drug the first three days; I thought I saw my life transform into something more than a string of 2-hour blocks between feedings/ventings. Then, the Reglan gradually worked less and less until it was totally ineffective. I tried to research possible reasons online and discovered there were lots of dangerous side effects of Reglan besides the diarrhea the doc had mentioned (which was actually helping with James’s constipation). It could give him seizures or serious tone problems. I started to get worried that he ever took it at all. Finally I called back the doc, and he increased his dose. I haven’t seen any side effects, just a return to the idyllic state of feeding James without him having dry heaves and crying and foaming at the mouth until I vent all his food back out, squish his stomach to get all the gas out, and tube all the food back in. Ahhhhhhhh, what a relief. I hope it lasts this time. [Note Thursday: today the effects of the new dose started wearing off. 🙁 ]
The outcome of the big therapy meeting a couple weeks ago was that we got a new Family Care Coordinator and Early Steps is still paying for all his therapies. I think I was obstinate enough about not choosing one kind of therapy over another to put them off for a while. After it was finished, the whole thing seemed sort of silly, especially since everything is staying the same. If they had just admitted that James was globally delayed at the beginning, we could have skipped the drama, but it was sort of fun to play the part of the indignant, overprotective mommy.
I saved the best news for last. James is getting stronger! A couple weeks ago I started working harder with him every morning on brushing, stretching, bouncing, rolling, sitting, crawling, and standing (these are mostly his PT and OT goals). After I started feeling better I made a music playlist for our morning exercise time with energetic songs about believing God for big things (it also has Romans 8 and some fun songs like “Let’s Hear it for the Boy!”). It helps motivate me to work with him more consistently. We have been practicing standing with me lifting him under his arms (“1-2-3-stand! OK, take a break (sit down). 1-2-3” etc.) and today he actually pushed with his legs up off my lap when I said “stand” and I could have let go of his trunk and, aside from the balance, he would have stayed erect. What a big boy!
Today he also worked hard to pick up small objects with a raking grasp and drop them into a cup. Wow! His arms are moving much faster and with more precision than they used to. This is great progress. Now I have to get him orthotic shoes to wear when he stands because his legs both turn out too much, making him put a lot of weight on the insides of his feet and his ankles.
Does this mean he is eventually going to stand independently…and someday, WALK? What a miracle that would be! Please petition God for this, as well as a lasting, pain-free solution for his gas and diabetes insipidus.
Meditations on Scripture, Our Journey, Our Journey (chronological) | Comments (7)