Monday, March 30, 2009

We'd love to have you!

Dexter's funeral will be on Friday, April 3 at 10:00am at the Church of Jesus Christ of Latter-Day Saints building on 950 Laredo St. Aurora, CO. We would love for all of you--of course our family, my sweet young women at church and the rest of our ward family, Aaron's classmates and co-workers and professors, my good friends from high school who are back in Colorado, our babysitting trade friends, all of Dexter's dedicated nurses, therapists, and doctors, any of you who can make it--to join with us! We love you all and appreciate your expressions of love and your continued prayers for us. We feel strengthened.

We decided not to have a traditional viewing. Instead, we will be showing a slideshow of Dexter's little life in the Relief Society room at the Church between 9:00 and 9:40 before the funeral service itself. All are welcome to drop in and remember Dexter and give us as many hugs as you can spare!

Families Can Be Together Forever

I'm not sure how to say this. We sent our first missionary off to preach the Plan of Happiness. Dexter has left us to begin the next phase of his eternal progression. I feel peace and I'm so sad and I miss him already.

Warning: This post may cause occular leakage

Look at that scrunched up little face! Dexter has gradually gotten less responsive and more floppy since Friday, and today he is really not doing well. He woke up so cold, despite being swaddled and covered in multiple blankets. I've tried sharing my body heat with him and I just can't seem to get him to warm up. He's really pale. I haven't heard him cry since last week. And now his abdomen is hard and swollen and his eyes look puffy. He hasn't been requiring as many diaper changes, despite getting the same amount of milk pumped into him, and I just don't know what to do for him. Should I keep giving him milk when his abdomen is that distended? I don't think so, but then what about dehydration? It's hard to know. Dexter had an EEG at TCH scheduled for this afternoon, but I canceled it because, as strange as this may sound, we want him at home when he's not doing well, not at the hospital. We made some hard decisions before leaving the hospital last time, but we felt peace about them and we still do. We aren't going to admit him to the hospital again. We feel good about that. The Lord has gently given us the impression that Dexter won't be with us on Earth for very long. And I feel submssive and grateful to have him at the moment and for eternity. But it's still so hard to watch him get worse. I think I'll just hold him all day.

Friday, March 27, 2009

More visitors!

Grandma Dahleand SNOW! (Spring snow is just a visitor around here. The sun is already working on melting it off.)Grandma flew in from Texas Thursday morning just as the snow was starting to accumulate. It kept snowing all day yesterday, and by evening, Aaron's professors had already decided to call off class for today. Woohoo! So Aaron got to play in the snow with the kiddos and spend extra chill time with his mom. We LOVE snow days!

We're enjoying BOTH of our visitors, especially Grandma. And we're looking forward to Grandma coming back with Grandpa and Uncle Ron and Aunt Marj in April.

Tuesday, March 24, 2009

My Train Engineer

Xander is such a sweet big brother. After rigging this toy up for Dexter, Xander bounced into the room where I was settling Elodie down for nap and exclaimed, "When Dexter gets big, I can share my trains with him and we can play together!" He was literally jumping up and down; all I could do was share his excitement with him, "Oh yeah, that'll be so fun to share trains with Dexter!" Even though part of me wanted to cry because Dexter may never get to that point. Last Thursday, Dexter had a neurology appointment. She noted that Dexter's EEG's haven't really progressed since birth--even on what she called relatively high doses of two pretty strong medications, Dexter is still seizing. Dr. Expert said that while she had initially been hopeful that Dexter would mature neurologically and eventually catch up, based on the subsequent EEGs and examinations, she wouldn't be surprised if Dexter is doing just what he's doing now in a year. In a year! Part of me kinda senses that, but it was hard to hear, especially from the doctor who had been so optimistic as to compare his brain abnormality to a brown freckle. Anyhow, back to Xander. I was pretty impressed with how he engineered a bungee and a couple train cars to make a hanging baby toy thing. He's so good at showing love to his little brother.

Elodie is a sweet big sister, too. While I was pumping on the couch, Elodie decided Dexter didn't look cozy enough just lying on the floor, so she carefully placed her special blanket on him. "Not on his face," she reassured me. Then she retrieved blanket after blanket from her bed to make him super "tozy," as she says. After Elodie got Dexter all snuggly in her blankets, she told him a story: "One time, there was a Jesus. And he go to the temple, and he helped people." Xander wasn't to be outdone, so he put his two favorite blankets on the top of the pile and they both snuggled up next to their little brother. (FYI, Xander's gift to Dexter on his first day home from the NICU was permanent. I swaddle Dexter up in Xander's special blue blanket every night and am touched by Xander's sacrifice. That's pure, unselfish love. I mean, Xander used to say, "I need my blue blanket!" so much that Elodie used to call her special pink blanket "myblueblanket.")

Sunday, March 22, 2009


Aaron's three best buddies in the world popped in for a last minute male-bonding weekend and everyone had SO much fun. His nephew Ryan drove up from Texas; his buddy Ricky drove down from Montana, and his brother Ben flew in from Washington. Adventure, fun, survival, dreams, brotherly love, it was all shared. We had a GREAT time together. All of us were so grateful that they sacrificed their time and means to come vacation with us. In case any of you are getting any ideas, yes, we LOVE visitors and all are welcome on little to no notice! This surprise visit sure spiced up an otherwise laborious Spring Break week for Aaron.Relaxing after the guys worked themselves over skiing all day. I don't think Aaron had been since we've been married (nearly 6 years).
Xander LOVED playing with "Uncle" Ryan--Xander found the little stinkpuff game they made up especially hilarious!
Now that Xander actually knows these uncles, he's been periodically reminding me all day how much he loves them.
Everyone got to bask in Dexter's sweetness. And you can, too. Come on over!

Wednesday, March 18, 2009

He's a growing boy!

Last week, when the home health nurse dropped in, he was 9 lbs 10 oz. Today he was 10 lbs 9 oz. Not bad, eh? The nurse also took some blood today because they're still trying to solve the sodium mystery. She ran the specimen over to the lab at Children's and they ran the BMP ASAP (Basic Metabolic Panel). When waiting for lab results, I figure no news is good news. But his doctor called back with the results just after dinner. Good news--the sodium is still normal. Not so good news--the calcium and bicarb are well outside the normal ranges. And Aaron didn't have time to explain the implications of that before he had to rush off to Scouts tonight. The doc wants to take more blood tomorrow to rerun the BMP. We'll already be in for a Neuro visit, so why not throw in a blood draw, too?

Too much of a good thing

St. Patrick's Day was absolutely gorgeous and we really enjoyed it.
As I sat at the park and chatted with my friend while the kiddos played, I didn't want to leave Dexter in the shaded stroller the whole time, so I held him, figuring a little vitamin D would be good for him. But look what I did to Dexter!Sunburning cheeks that cute and innocent has got to be a crime! I felt so bad--when I prayed with him before I tucked him in last night, I prayed that it wouldn't bother him and that it would heal quickly; he's got enough other troubles! And this morning his skin was back to normal.

Dexter's Blessing Day

Saturday, March 14, 2009

Enjoy the Moment

That's child-rearing advice you always hear in association with the tantrumy toddler years, right? Because before you know it, those years will be gone and you'll long for those days. So I've known that and I try to. But this experience with Dexter has taught me that in a more urgent way. Yesterday, the weather was just gorgeous so we loaded up the stroller and headed to the park. And I had this moment. A tender, simple moment. I was holding Dexter and his head was nuzzled just under my chin as I was watching Xander and Elodie play perfectly sweetly together on the playground. For that moment, everything was perfect. I felt such a surge of joy and gratitude for my three wonderful children. This really is what it's all about, people.

Daddy is going to bless Dexter in Church tomorrow morning. I have really been looking forward to the opportunity to get a glimpse of who little Dexter is and what his mission on the Earth may be. All of you are invited to come. (If only, right? I know most of you are long-distance readers.) It's at 9:00 at The Church of Jesus Christ of Latter-Day Saints building at 950 S. Laredo St. in Aurora, CO.

Thursday, March 12, 2009

Music to my ears

Dexter actually cried last night! Woohoo! Aaron was doing his G-tube care and Dexter was bothered enough by it to let out a real cry. That's saying something considering that on Monday he had a doctor's appointment in which they did all the regular prodding, took blood from his heel, gave him three vaccine shots, and he didn't cry for any of it. My previous experience as a mother taught me that shots equal screaming. Dexter likes to break the mold. On the third shot he did whimper, but that was it. Three weeks without crying. And last night wasn't a fluke--this morning, he woke me up with a little fussing. It was rather refreshing. Dexter remembering that he has a voice is definitely progress.

Yesterday and today have been SLEEPY days; he's making up for lost time and enjoying every second of it, by the looks of it.
When he wants to sleep, he's not easily disturbed. Even all this noisy rough-housing (while Aaron was trying to get some studying in) right by his bassinet didn't phase him a bit.

Monday, March 9, 2009

Who needs sleep?

Apparently Dexter doesn't. Or at least his brain doesn't remember that he does. He was awake almost all day Friday, and possibly all night.

I wouldn't know because he's a very quiet little guy these days. I haven't heard him really cry since before we took him to the hospital (over two weeks ago). He occasionally whimpers or groans or sighs, but other than that, we don't hear too much from Dexter. Friday night when we went to bed, Dexter was all cozy in his bed, but with his eyes wide open. And when I got up the next morning a little after six, he was just as cozy and his eyes were just as open. Poor Dexter was starting to look totally exhausted; when he pulled that awake-all-day stunt at the hospital on Saturday and Monday, they just gave him some medicine to help him sleep at night, but his neurologist didn't recommend continuing that at thome. He said that if his seizures were under control, he should be able to sleep. It looks like his seizures have broken through this dose of Topamax and Kepra, so it'll probably be increased tomorrow. Gratefully, the current dose is still keeping the longer tonic clonic seizures at bay; he's just having more frequent short spasms. Well, he finally fell asleep Saturday afternoon for a couple of hours, but he was awake again too soon for his tired little body. Sunday he was awake for who knows how much of the morning. He finally fell asleep during his first ever Sacrament meeting and slept through the rest of Church--I'm glad he could finally get some peace there. And then after another long awake spell, his eyes were getting puffy and purplish and he looked totally worn out by his own brain. That's when he fell asleep in Grandma's arms and looked this angelic and sweet and peaceful and cozy.
Doesn't Dexter look better at home? It is so good to have him home with the whole family. Life still isn't easy for him, but I like to think it's a little easier for him at home than it was at the hospital. I've felt bad for the little guy, so I haven't made him go through the stress of trying to take a bottle. We've just been doing his oral exercises and giving him a milk-dipped pacifier. His suck was really weak right after extubation, and it's getting a little stronger, but it's still so much weaker than it was when he was a month old. And his PT recommended tummy time over the boppy to help him develop the strength to hold up his head. Even though he's been awake, he's not awake enough for such exercises--that takes energy! Watching him try to lift his head is simultaneously sweet and pitiful. Poor guy!

Thursday, March 5, 2009

Back Home Where He Belongs!

I was having a hard time feeling decisive on my own, but once Aaron finished his stuff this morning he came to Dexter's bedside and saved the day, as usual. Talking together about the immediate decisions, we agreed right away about getting Dexter home today without a monitor and we felt instant peace. I didn't feel distressed, confused, or overwhelmed, as you may have sensed from this morning's post. And I no longer questioned if those decisions pushed me out of good-mom territory. As far as the other decisions go, we're sure that we'll be blessed with the light we need to see that stretch of path when we've traveled to that point. We're grateful that we've been given enough light to see as far down the path as we need to for now. And I'm so blessed to have Aaron as the head of our household; he really keeps his head together when I'm getting muddled!Aaron and I felt simply JUBILANT walking out of the hospital this afternoon.And Xander and Eldoie were so happy when Dexter got home that they littlerally danced and jumped and squealed for joy.
Families CAN be together forever. And it's so wonderful that we're together NOW, too!

More Hard Decisions

The Seizure Expert Neurologist wants to keep Dexter here another night for his safety, just in case he has trouble breathing at night. I really just want him to come home, but I don't want to ignore the man who actually has experience with this syndrome. And for further safety at home, the PICU attending threw out the option of having an oxygen saturation monitor at home, so that we can bring the hospital dings home with us. Am I a bad mom to not want that? I did sleep here at the hospital last night, and every time the monitor dinged, my eyes popped open and if the nurse wasn't by Dexter's bedside yet, I hopped up and when he was desatting into the 60's and 70's, I pinched his little toes to remind him to breathe. I was happy to do that for him. But sometimes it dinged because he had moved his foot and disrupted the reading, and Dexter was actually satting at 100 and doing great. I think the dinging might make me crazy. But am I jeopardizing Dexter's safety for my personal preferences? I had felt so at peace with taking him off the ventilator and leaving his life in the Lord's hands. But now we have to decide what that looks like. Does that mean keeping him home and loving him and not intervening at all to prolong his life? I think some medical intervention seems reasonable, but how much? Non-FDA medicines that you have to get from Canada? Not holding and playing with my baby because stimulation increases seizure activity? Weekly EEG's? A high-fat, high-protein, no-carb diet instead of breastmilk? Brain surgery? Does improving the quality of life for our family really decrease Dexter's chances of developing to where he can enjoy quality of life? Last week's attending neurologist may not have been able to pin a diagnosis, but he sure was a lot more practical about fitting Dexter into family life.

Wednesday, March 4, 2009

Breathing Inside the Box

Extubation successful. Whew (heavy sigh of relief). The Care Conference went well. Overall the tone was more hopeful than not. And I miraculously asked questions about very sad possibilities without shedding a tear. The seizure-expert neurologist talked to us more about treatment options, and I got a bit overwhelmed when he mentioned the possibility of brain surgery. It would take more tests to see if it would be helpful in his case and it would be down the road, perhaps, but, whoa. I mean, I was hesitant about a little G-tube surgery, and now there's talk of cutting out portions of my son's brain?!?!

And now for the play-by-play of this evening's action. I am so grateful and relieved that Dexter is breathing on his own as I type. He got over the ventilator hurdle! This is just before extubation. Wow, my boys are cute!
A blur of action as they were actually yanking the tube.And right after, Dexter's getting some blow-by oxygen.
Here's me hovering over Dexter after the extubation team left.
Now don't you feel like you were right there in the PICU with us? I know so many of you were in spirit, sending strength our way through your prayers. As we were eating the dinner that someone brought us at the hospital, gratitude washed over me. It has been a blessing to receive so much service and generousity and thoughtfulness. People ask if they can do anything for us, and I usually can't think of anything, we're doing well, so they push and suggest something they could do to help, and do you know what? It's always just what I didn't know I needed. I'm learning a lot about service here on the receving end. My family and ward members are just so remarkably in tune. This "bearing one anothers burdens" thing is good stuff.
So yes, my little Dexter is still breathing and he's pink and his eyes are even open for the first time today. The Lord heard my pleas and granted my request that Dexter stay with us for at least a little longer. All is well. But I'm still feeling a bit anxious and hypervigilant in my Dexter monitoring. I don't think I'll be able to pull myself away from the hospital tonight.

Tuesday, March 3, 2009

Diagnosis Pinned

Apparently Dr. Confidence had a reason for his confidence. Within the specialty of neurological disorders, he specializes in seizures, so he was able to put Dexter's symptoms together in a way that others had not. Dexter has a seizure disorder called Ohtahara Syndrome. The doctor said he can be 100% confident about that because it's a clinical diagnosis rather than an etyological one. That means that it's based on observable behavior and the EEG and MRI, and Dexter fits perfectly, but it doesn't address what caused the disorder. He explained that Dexter's MRI (and prenatal ultrasound, actually) showed Ventricular Muh-muh-something-that-means-softening, which was caused either by a hypoxic event like a bleed in the brain or a metabolic disorder yet to be determined with the pending blood tests. He also asked me if I noticed increased fetal movement compared to my other pregnancies, and I actually did. Dex may have been having myoclonic spasms or seizures in utero.

Regardless of what caused it, the good doctor somberly informed us that the prognosis for Ohtahara Syndrome is not good. Although the syndrome is very rare, this doctor has had four patients with it (one of the advantages of Dexter being at a Children's Hospital where people from all over flock to the experts). While their outcomes have varied based on the severity, the doctor feels like Dexter's case is quite severe as his seizures are not controlled by high doses of two seizure medications. He added a third. It was another somber discussion with a Doctor. Tomorrow we have a Care Conference to complete the serious discussions with all of the doctors together. I am so grateful that the Lord prepared me for this last week; it really helps me to handle such unwelcome news. Once again, my mind turns to the principle from Mosiah 23 and 24 that I pondered on Dexter's second day of life--that sometimes rather than immediately deliver us from our burdens, he strengthens us so that we can bear them with ease. And that's really not such a bad deal since the purpose of this life is to learn and become.

Monday, March 2, 2009

New Week, New Attending Physicians

in the PICU and in the neuro team. The new neuro guy came in and said something we've never heard--"I think I know what's wrong with Dexter." Aaron and I were kind of blown away and, I'll admit it, somewhat dubious. He said he needed a 24 hour EEG to confirm it. He told us the name of the syndrome he suspected and sounded quite confident about it. Dexter's all hooked up to the EEG right now (doesn't he look COOL?), so tomorrow we'll see if the EEG confirms Dr. Confidence's suspicions.

The new PICU Doc had a different take on Dexter's ventilator dependence than the last one. He said that the pressure support trials aren't as accurate about predicting extubation success or failure for little babies. If a 5-year-old performed the way Dexter did on the trials, he would be very concerned about the outcome of extubation, but for a guy Dexter's size, those same results are less concerning. He concluded rather noncommittally, "I'm not completely optimistic about extubation, but I'm not completely pessimistic, either." Which makes him somewhat more optimistic than yesterday's attending doctor.
Plus, Dexter had a pretty good day today. He was awake for most of the day without being agitated. He was only having 3-5 seizures per hour instead of 12-15 like he was on Saturday. I got to hold him for several hours, and he gazed in my direction and got all nice and rosy pink as he snuggled in my arms. He looked better than he has in a couple days. It was awesome to see the fulfillment of yesterday's blessing that Dexter's body would be at ease and gain strength and that he would be able to feel his mom and dad's love. I'm trying to just enjoy every day we have with Dexter, whether they be few or many.

Willing to Submit

Friday when I read Elder Wickman's talk, I felt comforted and loved and grateful and strengthened yet incredibly sad at the same time. I wondered if the Lord was trying to prepare me for what is to come. Then yesterday, the attending doctor had a very serious conversation with me in which she was trying to prepare me for what may come. Essentially, she said that Dexter has not shown that he will do well if they take him off of the ventilator and that Aaron and I need to decide what we want to do if they take him off and he doesn't do well (also noting that he may surprise us and do just fine breathing on his own). Do we reintubate him to give him another chance, give him a permanent trache by cutting a hole in his chest and send him home on a ventilator, or let nature take its course? Wow, it is hard to blog about this, that's why I didn't do it yesterday.

Saturday night, Aaron and I had a very serious discussion as we were preparing to begin our fast with prayer. Like Nephi, we know "that God will give liberally to him that asketh. Yea, my God will give me if I ask not amiss; therefore, I will lift up my voice unto thee; yea, I will cry unto thee, my God, the rock of my righteousness." (2 Nephi 4:35) We didn't want to ask amiss, so we pondered and talked and studied scriptures before we asked for anything. As we knelt, we both felt truly submissive to God's will. We prayed that Aaron would have the guidance of the Spirit in giving Dexter another priesthood blessing. We really sought the Spirit to guide our pleas, and found ourselves asking for Dexter to be able to rest and to come home to our family soon, to somehow be aware that his family loves him. I commented to Aaron, "we should pray that fervently more often--it felt so good." Aaron and I feel so united with each other and the Lord. What a blessing! In church yesterday, I felt prompted to stand and testify that "through the Atonement of Christ the Lord," we really can become "submissive, meek, humble, patient, full of love, willing to submit to all things which the Lord seeth fit to inflict upon him, even as a child doth submit to his father." (Mosiah 3:19) I didn't really want to submit to the possiblity of Dexter's earthly life being very short; I want Dexter to just get better and grow up and play football with Xander and goof around with Elodie and be our little guy. And I haven't even put forth any effort to try and convince myself that I should be accepting and open to other possibilities. That willingness to submit has simply come as a gift from the Lord. His grace is all sufficient. I am struck by how real and powerful His Atonement is.

When Aaron and a friend from our ward gave Dexter a priesthood blessing yesterday, it was not exactly a blessing of healing. He blessed Dexter that his body would be at ease and have strength. He told Dexter that he would continue to be a blessing to our family. And he blessed him to feel the love of the Savior and his father and mother. Shortly after the simple blessing, the nurse let me hold Dexter, despite the fact that he's still intubated. I felt like Dexter was able to feel my love for him. It was a very precious hour and a half.