Micah's nuerosurgical checkup

We took Micah to Primary Children's Hospital for a follow-up appointment with his personal neurosurgeon yesterday. A fresh CAT scan indicated that the new shunt is working well: both his right and left ventricles look much reduced (a good thing). The doctors remain concerned about his "fourth" ventricle. It's located in the back / base of the skull and looks both a bit over-full and somewhat full-er than the last time we checked it out (a month ago). This ventricle can impinge on areas of the brain that control sight, eating-related musculature, etc. We're to go back for another look-see in a month.

Micah's doing well overall. He's generally a happy camper and seems more responsive every day (to me, anyway). He'll even smile socially every now and then (that is, in response to some outside stimulus). We visited a mobile clinic at the Utah Schools for the Deaf and the Blind for a comprehensive developmental checkup a few weeks ago. Either I'll add a quick report on that visit later, or Melissa will do so. Overall, the news was good (especially where his prospects for mobility / motor deficits are concerned).

Mikeyball

Micah has a favorite toy. It's tough to describe, but that's what pictures are for, no? He explores it with his fingers and toes to some extent, but he's much more interested in learning about it with his tongue. He's a snake at heart, I guess.

Spencer's grave

A few weeks ago, Melissa and I finally decided it was time to design Spencer's headstone. In the first place, we held off because we were worried that we might have to design two instead of just one. More recently, we've just not been in the mood. We felt that the time was right now.

Melissa did most of the design-work. The stone was installed a week or so and we visited it as a Family Home Evening activity last Monday. We hope you like the pictures.

Exciting weekend

On Friday morning, Micah started throwing up. This, on top of a bulging soft-spot, led Melissa to take him into the emergency room here in Logan for a look-see. They concluded that he his shunt might be malfunctioning and transported Micah and Melissa to Primary Children's Medical Center in SLC by ambulance--with lights and sirens and everything. I followed them down a bit later after squaring our boys away at kindly neighbors' houses.

CAT scans and x-rays convinced the PCMC staff that the shunt was working just fine. Instead, they reasoned that the shunt (which is on his right-hand side) had worked so well that it had drained the right-hand ventricle to the point where it had closed and was no longer "communicating" with the left-hand ventricle. Thus, the left ventricle no longer benefited from the draining services of the shunt on the right side. To solve the problem, the PCMC neurosurgical team decided to install another shunt on the left side.

The surgery (on Saturday morning) went fine. Micah is having somewhat of a hard time bouncing back: he had to take on two doses of morphine last night and hasn't picked up where he left off eating-wise, either. But the PCMC staff still feels that we'll likely be able to take him home this evening.

Here are a few pictures of Micah in the hospital pre-surgery...







...and here are some pictures of our poor little kiddo post-surgery. He looks pretty knocked-about, but he's going to be OK. The new shunt should immediately take pressure off of his little brain and knock out his headache and nausea. The "DB" initials on his temple are an autograph from his neurosurgeon, Dr. Brockmeyer... I guess they jot on kiddos to confirm that they've discussed the procedure with the parents and to mark which side of the patient ought to be prepped for surgery...

Good morning, Micah

Micah woke up this morning as I headed out the door for work. He has seemed (to me, anyway) more alert and visually attentive the last couple of days. His eyes are pretty clearly brown, now--we couldn't tell for the longest time--and he appears to be learning how better to use them. I grabbed a couple of photos...

Spencer video slideshow

I've created a video slideshow of Spencer's short life. I hope y'all enjoy it as much as I enjoyed making it.



[NOTE: If you see this post in the next couple of hours, the video might not yet be available for viewing. Please check back tomorrow and things ought to be ready to roll. Google reserves the right to review anything they host, which makes sense in this litigation-happy era, and the review process can take several hours.]

More pictures...

Only time to jot down a little news and post a few photos today. Micah's up to 11 pounds and small change. He's generally giving us at least one stretch of 3-4 hours' sleep per day, the kindly soul. A recent eye-exam didn't tell us anything conclusive about his prospects for vision over the long run, but it did alert us to the fact that his optic nerves are something like 50% as thick as they ought to be. We're working with Micah's physical therapists to exercise his eye-muscles along with his others.

More later!

Micah's first month at home

Melissa's better qualified than I to talk about Micah's medical matters right now: work has been hectic for me, and I haven't been home as much as I'd like. I'll say just a few things about The Life of Micah in General and post a few pictures, though.

He's eating very well. He pulled his own nose-feeding tube two days after coming home. We'd been trained on how to reinstall it, but he hasn't needed it: he's bottle-fed like a champ. I think Melissa has enjoyed the flexibility and (relative) freedom that have come along with having a bottle-fed baby. She can run errands, go out of town for the day, and even sleep at night a little every now and then and (apologies to Greyhound) "leave the feeding to Dad."

His need for oxygen support seems to be tailing off a bit. We brought him home on a constant flow of 1/16th of a liter of oxygen per hour. As needed, we'd tweak him up to a 1/8th liter flow. Now, we can set him at 1/32nd and leave him there for the most part, jumping up to 1/16th only when he's mad or refluxing (or, as usually is the case, both at once).

His brothers love to hold him (see the pictures below).

I'd best get back to work. Melissa will write more later...

He's home!

Hello all,

Micah and mom (I) came home on Friday June 8. He came home on oxygen and with an NG feeding tube (through his nose). After two and half long weeks of trying to teach him how to nurse, we (I) finally recognized that for him, nursing was not a viable option. I asked the doctors if we could try a bottle before having a G-tube (tube placed surgically directly to his stomach for feedings) placed. He surprised everyone and did excellently. His only hang-up was his energy level--he would sleep through feedings. Because he did so well, the doctors agreed to teach us how to place the NG tube for those feedings he was too tired for and send us home.

The saturday evening after we arrived Micah decided to pull it out. We decided to just replace it the next time he needed it. I guess he enjoyed having a semi-empty nose because he hasn't needed it since. What a trooper!

He still has good days and bad days, and bad nights and worse nights (sleep and night don't belong in the same sentence for him). But we are coping and so glad to be home (it had been four months since I had lived at home).

We are keeping him some-what quarentined and so will continue to post pictures of our little guy. (If I ever learn how) He is about 21 inches long, and just this week reached 9 pounds, triple his birthweight!

We are so thankful for all of your prayers, thoughts, etc. We would love to have a list of names or little note from everyone who has been following our story through this blog, so please post a comment or something!

Thanks!

Micah coming home!

Micah's decided that he's had enough of Club Med (the hospital) and will come home with us on Friday. Today, he'll need to pass a carseat test (three minutes to go, as of now) and an ominously named "Room Air Challenge" (less exciting than it sounds) before he's completely cleared for takeoff, but we don't foresee any problems on either front.

Happy news!

Micah's bathtime pictures

Here are some pictures of Micah's bath (or, more accurately, immediate post-bath), as promised.

Pictures added to post about Spencer's funeral

Melissa's cousin Megan Wilcken kindly provided me with some pictures of Spencer's funeral. I've added them to our original post about the event (under "April"). Thanks again to everyone who came and supported us!

Quick update: May 28th

We were able to give Micah his first non-sponge bath on Sunday. He really enjoyed it. I'll post some pictures tomorrow. He's doing well, all things considered, and is reasonably good at nursing when he decides it's worth the effort. Unfortunately, he's still quite content to receive his food the easy way (i.e. through his nose-tube while he sleeps). Oh, well: baby steps to coming home, right?

Update with pictures

Hi all. Our updates of late have been distressingly picture-free, no? I'll make up for the lack in this one. Melissa's been our primary blogger over the last month or so as I've been buried at work.

Melissa's living in the Ronald McDonald House in Salt Lake City until further notice. The order of the day (week) (several weeks) (month) is to teach Micah to nurse. In all other respects, he's ready to come home. He's still on a little bit of supplementary oxygen (30% on a half-liter flow, which isn't much), but we can certainly take him home with an oxygen bottle. At this point, we'll be happy to take him on any terms.

If Micah can't learn to nurse consistently (or if his stomach continues to give him trouble), he'll need to go to Primary Children's Hospital again so that the docs can install a "G Tube" device. This, essentially, is a little port in the tummy through which we'd feed him directly. Just plug and feed, pretty much. It's a pity that these can't be installed electively in 6-, 4-, and 2-year-olds. Bypass the taste-buds, and they might actually eat something other than peanut butter and honey. :-)

Here are some recent-ish Micah pictures:

Making up for lost time

Hi everyone,

I guess two blogs in one week wore me out, so I had to pace it better ;) Actually, I just haven't taken the time to write. On may 1, after being transferred to Primary Children's Medical Center the night before, Micah underwent surgery for his head. In the 10 or so days before his head had grown 2 centimeters-normal growth is less than 1/2 centimeter per week. I think it took a while for the docotrs to catch it because his head was swelling up, not out. The weekend before they called in the neurologist to look at it, for me and his primary care nurse, it was visibly bigger. Anyhow, the ppor guy was not very comfortable. (His brain ventricles weren't draining the fluid correctly, so his brain was swelling with all of the extra, which causes quite a lot of pressure to his head, and can damage the brain itself-it's called hydrocephalus, or water in the brain).

The surgery involved placing a shunt in his head. They stick a tube through his skull, into the ventricles. Connected to that tube is a valve, which controls the amount of drainage so there isn't too much or too little. Connected to the valve is a very long tube that goes under his scalp, behind his ear, down the front of his body, and into his stomach. (all of this is beneath the skin). The purpose of this is to allow the fluid to drain from his head, relieving the pressure, but retaining the fluids within his body, so he is not constantly replacing the lost fluid. It is a permanent procedure. They coil enough tubing in his stomach to allow for growth up to a certain point, at which time he would have a "shunt revision".

He had to go back on a ventilator for the surgery since he was put completely out, but was off of it and back on his nasal canula by wendesday afternoon (day after surgery). he looks so much better, so much more comfortable. Before, it hurt for him to even yawn, and now he has discovered that it doesn't even hurt to cry....so he does.

Seth was able to take Tuesday morning off of work and be there with me, which I very much appreciated. I think the hardest thing, even more than the actual surgery, for me, was switching hospitals. Primary's is great, but there are a bunch of little differences that I had to make adjustments to because I was so used to UofU's NICU. Even the alarms sounded different....basically an airport (ding ding ding, you may now move about the cabin) noise, to a freeway (honk, honk honk) noise. Neither one enjoyable, but you get used to it after awhile.

Micah did so well that he was ready to be transferred back to the U Wednesday afternoon, but because of staffing issues, he wasn't transferred back untill the following Wednesday evening. It was like going home....t our home away from home. Everyone at the NICU welcomed us back. One nurse mentioned being glad to have my smiling face back....I'm glad i've been able to smile enough that people noticed.

I've also been able to try nursing a couple of times. I think as soon as we get our timing down (Micah awake at the same time I have a milk supply) we'll be able to catch on a little more quickly. He i still on continuous feed, so he is never hungry, which surprisingly actually makes a difference. :)

On Monday they are going to try to turn his NJ tube into an NG tube (move the tube out of his intestines into his stomach). Hopefully his stomach will start working and we will be on the road to eating, which means we will be on the road to going home. Hopefully.....I guess we'll see.
Anyhow, I guess that is all up to now. Oh yeah, one more happy thing! RSV season is over, so as soon as my boys are healthy, Micah and his brothers will finally be able to see each other. Hip HIp Hooray! Our whole family in the same place for 15 min.! (that is the time limit for children to visit siblings, twice a week).

Again, thank you everyone for your prayers and faith....I have literally felt their sustaining power, and witnessed the miracles they have given us.

another update in the same week!

HI everyone,

Micah continues to progress. Yesterday they took him off of CPAP and now he has just a nasal canula with 1 Liter of flow. The only things on his face is the little tube for his oxygen, and his NJ tube, both of which are through his nose. He is such a cute little guy, and it is so fun to be able to see him without any major obstructions. Today they removed his Picc line because he is up to full feeds, so he no longer has any IV's attached to him.

He has been having a few low level A's and B's, (Apnea-stops breathing, Bradycardia-heart rate drops) but they consider that normal, so although it is scary when it happens, it isn't something I need to be overly concerned about.

All in all, things are going good.

Head update

Hi all,

I forgot to update everyone on the head situation. For the past week at least Micah's head seems to have stopped growing beyond what is normal. Hopefully that will stay the case and no further action will be needed. Also, because of his size, and because the Cpap gives him and little more flexibility and because they are trying to ween him from Ativan (a sedative) so they swaddle him instead of giving him the medicine, Micah is now in an open crib instead of an incubator. He is still has his Picc line, and he is still receiving breathing treatment, but I guess they decided that an open crib would be better. Hurray! No more looking through plastic to see my little guy.
That's all, I think!

Happy 2 weeks!

Much has happened since we last wrote. Much of it has been happy! Micah is now completely off any heart support, no nitric, no Flolan, no seldonafel. He is completely weened from his pain medication (fentinal). In one week he went from the jet (helps him breath in and out) to the ocillator (helps him breathe in), to the Cpap, which means he is extubated! Hurray, no icky tubes down his throat any more. Well, he still has his feeding tube in, but that's nothing compared to his vent tubes. He has been on the Cpap for a week now, and his oxygen has been down below 30 for most of the week. There were times when he was at 100% for weeks at a time and reaching 30 seemed like a miracle...and guess what! We got our miracle! Since last Saturday he has gone down on his Cpap support from an 8 to a 7. Cpap is the last support before breathing on his own. We are so close!

I was talking to my dad today and my comment was "As soon as he can breath and eat things will be great!". Yeah, breathing and eating are pretty important things.

He is continuing to improve on his breathing, and it feels like he is digressing on his feeds. They are trying something new this week, and hopefully he will start digesting the breast milk he is getting so that we can get rid of his Picc line (semi-permanent IV).

Now, here is the greatest happy part. I get to hold my baby for the first time! Yeah! The OT (Occupational Therapist) is my new best friend. Because Micah has been stable with the Cpap she cleared it for me to hold him. As in, sit in a rocking chair, take him out of the incubator and hold him. The first time was a trial run. He was a happy camper and because he remained stable for it, I now get to hold him EVERY DAY! Hurray! Seth is looking forward to his turn tomorrow. It has been hard for him to be up here in Logan and only get to see Micah on the weekends (mostly just on Sunday). What a trooper! Sacrificing so that we can keep our house, food on the table, and key factor here-our insurance through his job!

Thanks again everyone for your prayers, love, and support. Miracles are happening, and it's because of you!

Micah update... and Spencer's funeral

Hi all. It's been a while since we've updated the blog, no? We've been a little off-kilter over the past few weeks, for obvious reasons. But we've also enjoyed a positive outpouring of love and support. We'd be ungrateful if we didn't do our best to keep everyone up to date on the State of Things. Thanks for all of your thoughts and prayers: they've helped us tremendously.

I'm up against the same quandary I face on the three or four occasions each year when I take time to write in my journal, namely, that so much has happened since I last wrote that I'm torn between (1) trying to make a bullet-point list of everything and risk not saying enough about anything to interest anyone and (2) giving all but the most recent past events a miss-in-balk on the grounds that more about something is better than less about everything. In this case, I'm going with Option B, I think. Melissa might well come along and fill in the blanks later.

But before recounting Micah's status as of the moment, I ought to mention Spencer's funeral briefly. We laid our little fellow to rest on Saturday, March 17th. The day was beautiful, and we were buoyed throughout by helping hands from friends and relatives. I'd hate to even start tallying the miles and hours folks spent traveling to be there. I won't describe the services just now, but suffice it to say that they were uplifting. We buried Spencer in the "Babyland" section of the Logan Cemetery.

The cemetery is situated on the grounds of Utah State University, where Melissa and I attended college. We used to take walks through the cemetery on Sunday afternoons. I remember that we'd pause in Babyland every now and then and wonder how parents who had to leave their children there made it through the ordeal. We know now: with lots of help from caring people and a firm faith in our Father's plan of salvation.







Thanks again for your collective support. It's made all of the difference in the world to us.

Micah is--well--hanging in there. He's still got plenty of fight in him, and we're encouraged by the progress he's made over the last few weeks. We're allowing ourselves to be cautiously optimistic about his prospects, I think. Today's big battery o' tests turned out as follows:

CHEST X-RAY
In general, he's doing about as he's been doing for several weeks. Which is to say, his little lungs are pretty sick. But they've not gotten worse lately, and that's good! The doctors are telling us that he's likely to have chronic lung trouble for several years. It's the sort of thing he stands a fair chance of growing out of (in time), but it's going to be an issue for him. He'll probably tire easily when he's active. He'll be more than usually susceptible to colds, RSV, etc. and may suffer from asthma-like symptoms. On the whole, though, he's taking up oxygen into his bloodstream more efficiently and more independently than ever before (which isn't saying much, frankly). He's on a "jet" ventilator, which holds his lungs open with quick pulses of air (200+ per minute), and a standard ventilator, too. He no longer needs the nitric therapy he'd been receiving since Day 2 of his little life, though, and he's been weaned from his Flolan (a breathing / oxygenating-related drug).

HEAD ULTRASOUND
Micah's head has been growing more quickly than the doctors would like to see. Given that they know he has suffered a Grade 4 brain bleed in both hemispheres, they're worried that clotting may block the natural drainage of fluid from the brain down through the spinal corridor, causing swelling. Today's head ultrasound indicated that some fluid is accumulating (his ventricles are expanding in an unhealthy way), but conditions at the moment don't warrant drastic action (e.g. a transfer to Primary Children's Medical Center, next door, and the installation of a drainage shunt).

EYES
Micah's eyes look OK. It seems likely that at least one will work: the docs who looked at them today indicated that one eye has developed appropriately and that the other, while a little behind the first, is on track to reach functioning maturity. Here's hoping!

FEEDINGS
Micah is receiving breast milk through a feeding tube. Over the past few weeks, he's had trouble digesting this from time to time. The docs put him on a half-and-half (half milk, half water) diet a couple of days ago, though, and everything's been hunky-dorey in the digestion division since then. They've asked Melissa to quit dairy cold turkey and will see if Micah can tolerate 100% breastmilk if it's not dairy-enhanced. Our other boys all had tummy trouble when mom indulged in dairy, so why not Micah? Poor Melissa. :-)

GROWTH
Micah's put on a couple of pounds and grown an inch or so since birth. He now weighs in at a whopping five pounds or so and measures 16.5" in length. As soon as he's off of his remaining IVs and his ventilator, in fact, he'll be eligible to move out of the isolet and into a crib. And we'll get to hold him, too, which will be nice.

Thanks again, everyone, for all that you're doing for us. We appreciate it. I'll try to write at least a little every day from here on out, but I'll probably come up short of the mark. Bear with us... :-)

Hello all,

Life since our boys were born has been a rollar coaster of visitors, activities, and emotions. The thursday following the birth of our beautiful babies the doctors and nurses called us in for a meeting. They described to us how sick the boys were (basically on death's doorstep) and then informed us that if they did survive, they would both be severely handicapped-with the possibility of them being hospitalized the rest of their lives. They then gave us the choice to let our boys go. What a devestating day! They encouraged us to make our decision within the next 24 hours. the next day, after having a different neonatologist review the head ultra-sounds, they encouraged us to wait to make a decision until after a new set of tests on Monday. The ran the tests on Monday, but results weren't ready unti the following day.

Tuesday morning, March 13, one week and one day following his birth, Spencer made the choice for us, and went to magnify his calling in the Spirit world.He was a sick little fellow and we feel priviledged that he stuck around as long as he did. We were able to give both of them a name and a blessing Sunday morning with both sets of grandparents, two uncles and one set of great-grandparents in attendance. It was a special day.

Tuesday afternoon we received the status report prepared for Micah. According to our interpretation of what the doctors said Micah was extremely close to following his brother (a few more days maybe) and they again gave us the option of sending him home to join Spencer. If I have one major peice of advice it would be -do not make any major decisions on such a day. We came close to deciding to let go of Micah as well. However, we weren't positive and Seth was wise enough to say, if we're not sure, then we shouldn't do anything. Thank goodness! The next day, upon reflection we decided that in our emotional distress we couldn't do anything but stick to our original plan, which was let things go on as they were. Basically we chose to say "Heavenly Father, you may have these little ones if that is Thy will, but we're going to keep them until you tell us you need them". He let us know that it was Spencer's time, (spencer got perforated bowl syndrome, something untreatable in his state) and so we said good-bye.

It has been over a week since we made our choice to hang on to our little Micah, and he likewise is hanging on. His lungs are still very very very sick. They started giving him a new treatment involving steroids two days ago that they reserve for only extreme cases because of possible side-effects. However, his heart is looking better, and they are weaning him off of some of the treatments they have been using for that. They did another brain ultrasound (performed every Monday, unless needed more often) and although he still has the same problems as before, things have not progressed, or gotten worse. So basically, things are about the same, Micah is not really getting better, and not really getting worse. Each day we are grateful for any good news we receive, like his oxygen support being down to 61 instead of 84, etc. We are learning a whole new set of medical data, and are becoming pretty effecient in reading what all of his monitors are telling us. We continue to pray that Micah will remain with us and are grateful for all of the prayers of faith and support in his and our behalf. We have been buoyed up during this difficult time and are eternaly grateful.

For those of you wondering about what our family is doing, The arrangments right now consist of Scotty and Seth living in Logan (school and work do happen, and are neccessary unfortunatley). Max, Simon and I are staying in Tooele with Seth's parents so that I can go to the hospital each day and visit Micah (children under 14 are not allowed in the NICU during RSV season which lasts usually until the end of May). For the past two weeks, my Mom picked me up and drove me because until yesterday I wasn't allowed to drive (results of my C-section). She however, after 6 weeks, is finally going home to California, and my dad and brothers still there. Right now, our family gets to be together on the weekends. However, as the needs of the family change, then most likely our living arrangements will change as well.

That, in brief, has been our last two weeks. Services for Spencer were held on March 17, and his little body is now a part of "Baby Land" in the Logan City cemetary.

We might keep this up better in the future, and we might not. things are still in upheaval and it might take us a while, but we will try to keep people informed on how micah is doing. Hopefully, that will continue for a long, long, time!

Middle names

We've chosen middle names for our kiddos:

Spencer Dee Johnson (middle-named for Melissa's maternal grandfather)
Micah Dale Johnson (middle-named for Seth's maternal grandfather)

The fact that both middle names start with "D" is a bonus.

More Spencer pictures

Spencer pictures

More Micah pictures

Micah pictures