M.O.T.S.

Dexter is still intubated. Dexter is still having frequent seizures. We still want him to come home soon. We're still waiting for Dexter to prove that he can handle breathing without the ventilator. They still don't know what's really wrong with Dexter.

If you still want more details, keep reading. From the time I got here at around 6:15 this morning, Dexter has been having seizures every five minutes or so. The PICU docs said in rounds that they would wait on neurology's decision about seizure-controlling meds before deciding on extubation. So the funny older neurologist guy came by and was examining Dexter. In the process, he had Dexter's diaper off and discovered it was messy. The Doc grabbed a wipe and started taking care of it; I tried to step in and change my own son's diaper, but he protested and accused me of thinking he couldn't handle a little diaper change because he was a man, at which point Dexter squirted a fountain of number one all over the place. As the doc groaned and grabbed a diaper to control the flow, Dexter let out a nice green number two before the doc could get a diaper under him. The nurse and I were cracking up. The good doctor was so confident in his diapering skills, and darling Dexter put him to shame. But still, it was good of a neurologist to be willing to do a little dirty work.

Sadly, the neurology consult was nearly as messy. As Doctor M said, so far, Dexter has "giggled" at all the medications they've given him. He's afraid that the only way to completely stop Dexter from seizing is to knock him out, which he of course sees as a non-option. So they can increase the dosage of the maintenance medication and see if that will reduce their frequency, but it's unlikely to completely stop them. And he said the seizures are definitely not helping Dexter's brain recover, and they're probably damaging his brain further. Basically, neurology is saying that they can't fix him. But the doc did agree with me that extubating him and getting him home ASAP is the best thing for him. Seizures can be managed on an outpatient basis.

So I was encouraged by his recommendatin to extubate ASAP, but when the PICU team put him on another pressure support trial to see if he's ready for extubation, they did a blood gas and his carbon dioxide levels came back way too high and they said it wouldn't be safe to extubate him today. But I just want to bring him back home! I haven't held Dexter since Monday. I can't even offer him the comfort of snuggling with mom through all of his suffering. Why isn't he breathing well enough on his own??

Please continue to pray for Dexter.

Just what I needed

Dexter is still having a hard time. Yesterday morning the neuro team loaded him up with three different seizure medications at once, which pretty much knocked him out for a few hours. But in the afternoon, he started having intermittent seizures again, and that's continued today. They're waiting to see if the maintenance dose that he's on will kick in and control them. In the meantime, it's hard for me to watch the distress on his face when he's having a seizure. He just looks so pitiful.

Early this morning, they took Dexter off of milk again in preparation for extubation. But here it is 2:30pm and he's still intubated. The respiratory therapist gave him a pressure trial, and he didn't want to breathe on his own. She tried again, and he didn't show that he was ready to take the reins of breathing. So she's supposed to be back again soon to try once more, but if he's not ready then, it'll be pushed off until tomorrow, again. He's responsive and seemingly back at baseline; I can't figure out why he's not showing them that he really does know how to breathe. But when has anyone been able to figure out little Dexter?

I had really been hoping to get Dexter home today or tomorrow. The continued seizure activity and ventilator dependence is NOT what I needed. But when I turned on Aaron's laptop and went to lds.org, I read the title of President Monson's March message, and could tell that it was exactly what I needed. I didn't even get past the second line where he quoted Jacob--I went to that reference and cross-referenced it and was reminded that the most desirable gift from God is not the removal of trials (as much as I desire that at times!), but feeling His love. Simple.

"Look unto God with firmness of mind, and pray unto him with exceeding faith, and he will console you in your afflictions, ...O all ye that are pure in heart, lift up your heads and receive the pleasing word of God, and feast upon his love; for ye may, if your minds are firm, forever." (Jacob 3:1-2)

"Yea, it is the love of God, which sheddeth itself abroad in the hearts of the children of men; wherefore, it is the most desirable above all things." (1 Nephi 11:22)

I'm now seeking after a "firm mind."

When I typed "firm mind" in the lds.og search engine, it brought up the talk "But If Not" by Elder Wickman from a few years ago. I remember the premise of the talk being about Shadrack, Meshack, and Abednego's faith that they would be saved from the fiery furnace, but if not, they would still be faithful to God. That seemed quite applicable, so I clicked on the link. But I hadn't remembered just how specifically the talk was designed for me as I sit here by Dexter's bedside until I read the first two paragraphs. Check this out.

I feel such a reassurance that God is aware of me.

Hospital Irony

Tuesday evening, Dexter was responsive again and not floppy anymore. Yesterday morning, he was starting to get even more active; so much so that they had to sedate him so his movements wouldn't cause irritation and inflammation in his trachea since he's still intubated. It seemed a bit ironic to me that I took him to the hospital because he was too sedated, and then he wakes up and they sedate him.

Yesterday they said that his hematicrit is low, meaning he doesn't have enough red blood cells. Why? Because they've taken so much blood to run every test that the pediatricians, endocrinologist, metabolic doctors, and neurologist have ordered. Today Dexter's resident doctor informed us he was to the point of needing a transfusion. So you have to give him blood because you took his blood? It's hard not to think that he'd be better off at home in his bassinet!

This morning Dexter was having seizures increasingly frequently. The neurology team came by and Dexter was very cooperative--he showed them exactly what he'd been doing, and they confirmed that he's having seizures. I was telling the doctor about how the onset of his seizures last week was correlated with increased sleepiness, and he was telling me the irony of seizures. Seizures can make a kid tired, so it's good to give them medication to let the brain rest. But seizure meds also make a kid tired. Alas.

And in case any of you are wondering what's actually wrong with Dexter, so are we and a lot of really smart specialists. It still seems to be all questions and no answers beyond "his brain didn't form quite right and doesn't function quite right."

Aaron's Worst Fear

Aaron's a lab guy. He knows a lot about bacteria--sometimes too much about bacteria. And some of you know that it makes him a bit bacteriaphobic. Especially of one superbug, Methicillin Resistant Staff Aureus, MRSA. If one of the kids starts playing with his badge from work, "Aah, no, that has MRSA on it." When he'd come to Dexter's NICU spot straight from work, he wouldn't hold him for fear his shirt had MRSA on it. If you drop something on the floor, "Ew, throw it away, it has MRSA on it." You get the idea. And yesterday, when Dexter was admitted, they did the standard test for MRSA and it came back positive. So they retested, and it confirmed Aaron's worst fear. Dexter has MRSA. But they don't think he's necessarily infected with it, he just has it. Hmmm. I don't quite get it either.

Another thing that has everyone confused is Dexter's Sodium levels. When they ran all the initial tests in the ER yesterday, his Sodium levels came back dangerously low. Yep, he was hyponatrimic. They said that could be an explanation for the onset of seizures and the unresponsive behavior. They gave him a load of Sodium via an IV, and by last night, the levels were back to normal. But as they've run through the list of all the things that might make Na drop so drastically, none of them seem to fit. He hasn't gotten significant amounts of free water, he doesn't fit the picture of cerebral salt wasting, his thyroid tests were normal so they don't think it was an ADH imbalance. Essentially, they said they have no idea. And even weirder, they said he returned to normal levels from extremely low levels with hardly any intervention from them. They didn't quite understand how he could have corrected so quickly. But Aaron, the lab guy, has despised the chemistry analyzer in the lab since they got the new machine upon moving to the new hospital over a year ago. That Cobas 6000 (that's the name of the machine) was always giving wacky Sodiums; I remember him ranting and raving about it and getting home late because he was retesting every Sodium back when he was s full-time lab guy. Last night when they had to repoke Dexter about 7 times to retest the Sodium because the numbers were a bit wacky, Aaron declared that his rage against the Cobas was now "getting personal!!" Again, it seems that Aaron knows a bit too much for his own good.

Tender Mercies

21. We really needed Aunt Melayna's help with X & E, but we couldn't contact her because she had forgotten her cell phone at home today. At work, she had a nagging feeling that we needed her help, so she went home early to get her cell phone and check the messages, thereby saving the day once again. It was so nice to be reminded of how much the Lord loves us and takes care of little details to make this burden bearable. We're so grateful that Melayna was in tune with the Spirit today!

22. Aaron's professor was merciful and emailed Aaron "strongly suggesting" that he not take his test Wednesday. Whew--he was supposed to study all day but only got in about 20 minutes today. What a relief.

He's Back

At The Children's Hospital, that is. This morning I called the Neurology Clinic, and the nurse said she'd report our concerns to the neurologist, but that she wanted us to see his pediatrician today. So I called the Special Care Clinic to get him in ASAP, and after an hour on hold, the nurse there told me I should take him to the Emergency Room. Not what I wanted to hear. And now we're here at the Emergency Room, and they're telling us he needs to be admitted to the ICU again. He is moving up, though. He'll be in the PICU (Pediatric), not the NICU. Of course I knew that Dexter's completely unresponsive weekend was a bad sign, but for some reason, when I left the house this morning, it never crossed my mind that he'd have to be admitted. His bassinet is going to seem very empty tonight.

Name them one by one

In case you didn't gather as much from the previous post, yesterday was kind of a hard day. This is the hymn that kept coming to mind:

Are you ever burdened with a load of care? (YES!)
Does the cross seem heavy you are called to bear? (Uh-huh.)
Count your many blessings, every doubt will fly. (Sounds good!)
And you will be singing as the days go by. (OK!)

So here goes naming those blessings one by one. (In no particular order.) When you start to think about it, there really is more to be grateful for than you can count.

1. I'm grateful for Jesus. (When things got tough yesterday, I told Xander and Elodie we were going to play the Name-What-You're-Grateful-For Game, and this is the first one Xander said. Anyone wonder why Christ admonished us to be like little children? And Elodie's first one was, "I'm grateful for Mommy." Both of those answers melted my heart and put things back in perspective.) I really am grateful for Christ's loving mercy and generous offering of forgiveness. It's pretty easy to see your weaknesses when you're under pressure, and I've been reminded daily how much I need Christ's Atonement.

2. Xander. As I just mentioned, Xander is such a blessing to me. As I was filled with concern looking at Dexter, tears were starting to form and Xander asked, "Why are you sad, Mommy?" I told him I was worried about Dexter, and Xander gave me a big hug and said, "I'll say a blessing for Dexter" and then offered the sweetest prayer. "Aaaaah" (in your best baby shower gift opening tone) is about all you can say.

3. Aaron. I could devote a whole Monette-lengthed blog to this one (which I may do one of these days, so remind yourself to skip it if you can't handle the sap), so I'll just say that he is the strength I need. I feel so blessed to be his wife.

4. Bananas. Ever heard that they get rid of headaches? They really do work.

5. Technology. Like the means to pump milk out of me and into Dexter since he can't do it himself.

6. Aaron has a job that lets him work whenever he can and they pay him good money for it. And he's in school to learn the profession of his dreams.

7. Dexter wriggled his back a little when I was holding him and massaging him today--he's a touch (pun intended) more responsive today than yesterday.

8. Aunt Melayna lives close.

9. Grandma and Grandpa live close.

10. Generous, supportive, thoughtful friends.

11. Chocolate that's 75% off after Valentine's day.

12. Tax returns that return more than you paid because you're in the starving student phase of life.

13. Elodie ate her vegetables at dinner without a fight (and without chipmunking them for an hour or more after dinner).

14. The young women I teach at Church thoughtfully participate in the lessons every week. I love them!

15. The Comforter.

16. Elodie's positive attitude when she was out-both-ends sick for 5 days last week. Every time I asked her how she felt, it was, "I'm fine, I'm better, I'm not sick anymore." Although hearing "Mommy, please hold me" for the 200th time that day reminded me that she really wasn't feeling as great as she claimed.

17. The motivation I needed to keep one of my New Year's Resolutions: writing in my journal at least once a week. Meredith told me that blogs count as journaling back when she was convincing me to start one, so woo-hoo! Unfortunately my goal about being a better housekeeper hasn't come to fruition quite yet.

18. Weather warm enough for a picnic at the park last week.

19. Ice cream. Mmmmmm.

20. Uplifting music.

OK, like I said, there are far too many to count so I'll stop there to enjoy the blessing of a cozy bed so I have the energy I need for the week!

Not what you want to hear

It's been a tough week for little Dexter. On Tuesday, it seemed like the myoclonic jerks were getting more frequent, and when I asked for Aaron's second opinion, he didn't disagree like I hoped he would. It's hard to admit that he's getting worse. And then he started to get even sleepier and worse at sucking and swallowing. That night he woke me up several times with this awful gagging, retching, choking noise. Was he just unable to swallow his own secretions? (I know, it's getting a bit gross, I warned you this wasn't what you wanted to hear, and you're the one still reading it.) Gratefully he was still breathing--I'm coming to appreciate what King Benjamin says in Mosiah about each breath being a gift from the Lord.

When the occupational therapist came for her first visit this week to work with us on Dexter's oral feeding, those myoclonic jerks were completely disrupting his ability to stay latched on, let alone suck-swallow-breathe. And then he got really sleepy after just a few minutes of being awake which didn't help him either. She wondered aloud if the myoclonus was interrupting his sleep so much that he could never actually get rested, making him completely exhausted all the time. And the physical therapist, who came on Thursday, saw how difficult he is to calm and how he doesn't appreciate the changes in position that physical therapy generally entails. She affirmed that Dexter is a tricky one and said she'd try to come back next week with more ideas.

Wednesday, Dexter got his first dose of the medicine, which is a type of Vitamin B, that the neurologist thinks may help reduce the myoclonic jerks. Thursday the neurologist called and talked to us about what she's doing to try to get a diagnosis. He's going to get a spinal tap as soon as possible to run more tests, and she wants him to meet with a metabolic specialist. I shared our concerns about the increased frequency of myoclonus, so at least she's aware of that.

Then Thursday evening I noticed something new and disturbing, and once again when I asked Aaron to confirm what I thought, he unfortunately agreed with me: these new episodes look seizure-like. He gets completely rigid; every muscle goes tense, including face muscles; his eyes pop open looking very distressed; he purses his lips and makes spit bubbles while his hands do this rhythmic movement. It's scary to me and rough on him--he makes this little whimper afterwards and kind of sputters and coughs. Oh, Dexter! I haven't timed how long they last, but it seems like a long time to me. In reality it's probably 30 seconds or so. Friday I called to talk to the neurologist about it, and the nurse I reported to said she'd pass it along and call back if anything needed to be done right away. We haven't heard anything.

Today, Dexter's myoclonic jerks are very infrequent. Maybe the medication is kicking in. And he doesn't cry and arch his back when I change his diaper or mess with his G-tube. Or when I yank tape off of his cheeks. Or when I gave him his first real bath since his surgery (the steritape finally all fell off yesterday, it was about time!). Being more tolerant of being messed with might sound like a good thing, but not when he's as limp as a rag doll and completely unresponsive to such aggravating stimuli. It was so scary. And he looks so pale today. The neurologist said this medicine wasn't supposed to have side effects since it's just a vitamin. But Dexter's his own little unpredicatable man--maybe this is his reaction to it? Or is it just the course he was already on since we'd noticed his symptoms getting worse this week? Who knows. I wondered if I should take him to the emergency room, but what answers would they be able to provide? I wish it wasn't the weekend so I could bring him in to the neurology office. We're praying that we'll know what we need to do for him. We put our trust in the Lord and hope that he'll get more responsive soon.

Dr. Expert Neurologist

Dexter went back to see the expert neurologist last week, and unfortunately the news was not as hopeful as her assessment back at five days old. He has now had three EEGs in his short little life, and the Doc was hoping to see some improvements, some maturation, some neurological development. But no, it has stayed pretty much the same. She said she's very concerned and called it "neurological dysfunction." During the last EEG, they filmed Dexter so they could correlate his movements with the wave patterns. From that, Dr. Expert found that the spikes in brain activity were correlated with his full-body jerks. She called that myoclonus and prescribed a B vitamin that may help reduce its incidence. The EEG also showed that his sleep patterns aren't really differentiated from his wakeful patterns, and that his overall brain activity is suppressed, meaning the line is mostly flat instead of bumpy like it should be. Concerning to the neurologist. Definitely concerning to us. Especially concerning to all of us is that his brain doesn't seem to be making progress with regulating basic functions like swallowing. It's frustrating that he's not making progress in the milk swallowing department, but it's downright frightening that he hasn't mastered swallowing his own saliva--I do not like hearing my sweet little baby choke and sputter while I watch, completely helpless. Poor little guy. He's so helpless--even more than your average newborn--and to make it worse, his mom is pretty helpless, too. I feel like I have no "Mom power" with him. When a baby cries, Mom's the one with the power to make it all better by holding or rocking or nursing, right? I'm trying to get to know Dexter and what makes him feel content with life, but I've got a long way to go. I am grateful that the Lord is helping and strengthening and assuring me that all is well. Thanks for your support, everyone. Even though Dexter is home and we've kind of settled into life, we still appreciate your prayers. We need all the help we can get around here!

The Best Medicine

Always good for a laugh!

The other night, I was pretty exhausted and my mood was less than chipper, we'll just say. So Aaron took it upon himself to put Xander in this gettup (shredding courstesy of our hungry washing machine) and, unbenounced to me, prompted him to shout "fighting crime!" and strike a pose when asked, "Whoa, what were you doing last night?" So I come upstairs, and Aaron asks, "Whoa, Xander, what were you doing last night?" Xander shouts, "Fighting grapes!" and strikes his best super hero pose. That snapped me right out of it!

Elodie got a little sick right after we brought Dexter home. Thursday we took her temperature with an axillary thermometer and she had a little temperature--38.2. The next morning I was commenting to her that she didn't seem to have a fever anymore. She pointed to her armpit and said, "Yeah, I had a fever in there."

(A little later, while I'm on the phone.) "Mom! Mom! Mo-ooom! The step is icky!" Why was the step icky? Because Elodie threw up on it, and then just went on playing, not feeling the need to tell Mommy to get a little sympathy or popsicle or anything. She's no wimp when it comes to sick! And when I ask her if she feels sick, she says, "No, I'm better." She's got quite the positive attitude!

Xander is into quantifying things lately. After dinner, we were eating the ice cream generously given to us with the dinner. Xander wasn't satisfied with the size scoop I gave him. "No, I want a lot! I want 83mls." He defnitely has his ears tuned when I'm talking about his little brother. I mean, he and Elodie pretend that their baby dolls go to the hospital "to get surgery."

Do Not Disturb

This is what Dexter does best.

I want to hold him and interact with him and make sure he's getting enough love and attention and stimulation, but when he wants to sleep, he kinda has a don't-mess-with-me attitude. Of course he's upset by diaper changes, wiping crusties off of his mouth, being unswaddled to take the tube in and out of his gastric button, having the gauze changed, and all of that kind of stuff. But he's also upset if you try to give him a pacifier or bottle when he's not in the mood, and sometimes he's even aggravated by me trying to hold him when he just wants to sleep. So we try to make the most of moments when he's awake. Xander and Elodie love to dote on him and excitedly shout, "Look, his eyes are open!" It is still kind of a novelty."Why does Dexter have punching things on his hands?" Xander wanted to know. Well, you gotta train boxers young, that's what I always say, so his PT at the hospital designed these boxing gloves especially for Dex. And, oddly enough, he doesn't mind wearing them or putting them on or taking them off.
If only he was that agreeable to the bottle feeding attempts. When he is in just the right wakeful yet calm yet hungry mood, he does really well (really well being a relative term describing the condition in which he only gulps and forgets to breathe 2 or 3 times at the beginning and then takes more controlled yet very intermittent sucks while remembering to breathe and stay latched on until he wears himself out). As you may have guessed, Dexter is not in just the right mood each of the three times I attempt to bottle feed him everyday. On Friday, the morning and afternoon attempts were so frustrating for both Dexter and me that I nixed the evening feed altogether. It was so disheartening to see him doing worse than he had been a week before. When my dear visiting teachers came over that evening to bring me dinner, they asked the simple question, "How are you doing?" and I started to cry. I tell ya, when someone is too nice to me, the floodgates open. Well, I recovered and regained perspective, and Saturday and Sunday I was more careful to notice when Dexter was ready to try the bottle, and the feeds went really well (see above). Since then, he's had his shining moments and his gagging moments. I'll just sum up by saying that Dexter has DEFINITELY confirmed our decision to have the surgeons install that G-button. He couldn't survive without it.

One Month Old

Dexter's second month of life is off to a much better start than his first one! He really seems to be enjoying life at home. He's been calm, comfortable and content. I've been amazed by how at ease he's seemed--I've rarely seen him startle or jerk, and the last couple of days at the hospital, it was the norm. He was even awake and alert for over three hours in a row this morning. All of us really enjoyed having him around today. I do feel like I spent all day pumping, attempting bottle-feeding, and then G-tube feeding, but in reality, I got more done today than I have with the multiple hospital visits. Last night when we returned with Dexter, Xander said, "Mom, I'm so glad you don't have to go anymore!" Me too! It feels so good to have our whole family at home together. But if you look closely at this next picture, you'll see that I still need some work on the home oxygen thing. Gratefully, the home oxygen delivery guy stopped by later and gave us more of those sticky cheek circles, so we shouldn't be oxygenating his eye anymore. Pretty soon I'm sure all of this will feel normal.

Day 31--There's no place like home!

A picture is worth a thousand words...

Xander is such a sweet big brother! He gave Dexter HIS special blue blanket (we're not sure yet if that's a permanent gift) and sang him his favorite song, "I am a Child of God." It was SO sweet!!

I det a butterfly tate!

After I came home from the hospital today, we managed to whip out a birthday party for Elodie, complete with flaming antennae.

Elodie had been very good at telling people, "I one." And when they'd comment on how well she can talk, I'd throw in that she was almost two, at which point she'd say, "I det a princess tate!" But when I was looking at princess-cake-making tips on the internet, we saw a butterfly cake and she changed her mantra. Lucky for me because this one was much simpler to throw together. Today we practiced "How old are you?" a lot, and I tried to drill the new answer into her head, but she kept skipping right over two and claiming, "I free!"

Xander was very, uh, helpful when it came to opening presents. As she was enjoying the one they'd just opened, he was digging into the next. He was courteous enough to show her what she got before moving on to the next one.

While we're on the subject of Elodie, just look at how much she's benefitted from going to other mom's houses everyday. My friend Kara, who is an experienced mother of a daughter, managed to get Elodie not only to cooperate with having her hair done, but also to somehow leave it in longer than 5 minutes--it stayed in the WHOLE DAY! Kara taught me her tricks so hopefully my daughter can now look a bit more respectable and girly, despite the fact that she barely has enough hair to get in her eyes. Yep, these are the first real pigtails of her life. Thanks, Kara! And thanks to all of my great friends from Church who have taken such good care of my kids everyday! It feels like Zion to be surrounded by such unselfish, pure-hearted people! You are all an answer to prayer!

Day 30--Back to baseline

Since the nurses at The Children's Hospital don't know Dexter very well, they've been asking me, "Is this baseline for him?" Well today, I'd say he was pretty much back to baseline. He even got to try taking a bottle again today. It wasn't his best attempt ever, but Dad was doing it for the first time, and Dexter's not the hugest fan of change. The G-tube is doing its job--Dexter is up to his full volume of milk via enteral feeds (that's another fancy way of saying it) and is tolerating it well. Which means he's still on track to go home Wednesday. And Aaron and I will be attending a G-tube class tomorrow so we can learn to feed our own baby, and then we'll be on track for him to survive at home. We're sure he's going to do much more than survive at home; he's going to thrive! As Aaron put it in the Care Conference last week, we're going to get him home and give him all the love that he can stand! Bring it on.

Day 29--I'll do it myself!

Saturday night, I called the NICU just before going to bed to check on Dexter. They told me that he was still intubated and probably wouldn't be extubated until Sunday morning. Shortly after that conversation, Dexter took matters into his own hands and extubated himself. It looks like he's a Dahle boy for sure--he's our little man of action! (When I tell Xander it's time to go, he's out the door and down the driveway before I've even gotten Elodie's coat out of the closet. And you know Aaron--why talk about it when you could just be doing it? ACTION.)