A Special Thanksgiving

I've been very hesitant to point to specific people or acts for which I was grateful since the Bean was born.  I feel I must, however, just share one or two people or bits of service that were especially helpful.  I hope this isn't taken to demean or lessen the gratitude I feel for all of the faith and prayers and acts of service we received.  Please know we couldn't have survived this without them all.

The day after I went into the hospital, a gang of ruffians came to my house and mowed my lawn.  Seems so simple, but it meant that our house didn't look abandoned and Jon could be there with me instead of home mowing the lawn.

One lovely soul took the bummer lamb I was raising.  The bummer lamb who wasn't weaned.  The bummer lamb who thought he was either a chicken or a person, and so would break out of the pasture to hang out with the chickens or on her front porch.  I was so happy to not have to worry about Lambchop, and didn't want to have to prematurely "process" him.  Lamb formula is expensive and we had already been through an entire bag.  Thanks to her, our freezer is now full of the most amazing lamb you have ever experienced.  This was all after mowing my lawn with a broken mower and bringing Jon dinner the night I was admitted to the hospital.  She didn't ask what she could do...she just showed up.  Thanks, Rickie.

I have chickens.  They have to be let out in the morning and put up at night.  Their feeder and waterer have to be filled.  Their eggs have to be collected.  My next door neighbors, who have five kids of their own (one welcomed to the family in June...about two weeks after Mac was born) did this for me until the day Mac came home in September.  I didn't have to choose between getting rid of them and coming home before dark every night. It was a huge burden lifted.


I was admitted to the hospital on the 18th of May.  The morning of the 25th, I found out I was going to have to deliver three full months early as a result of pre-eclampsia.  I was unaware at the time of the ramifications of this...like the fact that it was likely he wasn't going to make it and that the road ahead was long and steep.  I just knew I was scared.  At 2am on the 26th, my friend Maren walked into my hospital room.  Why, you ask, would this make me happy?  Well, she bought a ticket that morning right rafter she heard my news and just left her husband and two little ones and hopped on a plane from Oregon that night to come sit by my side.  For a week.  Not just anyone could have done that.  Maren has a skill set that was especially helpful; she is a neonatology nurse.  She answered my questions and helped me know what to look for.  She asked the nurses questions and told me what questions to ask.  She told me when to be nervous and when to relax, and helped me prioritize my concerns.  She explained the monitors and alarms and needles and wires and tests and vocab.  She bought the nurses chocolate.  She washed my pump equipment at 11, 1, 4, and 7 so I didn't have to get out of bed.  She and my sister made me freezer dinners, did my laundry, and held my hand.  They kept me sane those first days and weeks.

My little sister.  She didn't hop on a plane.  She hopped in her car with her husband and a six month old.  In addition to dinner and laundry, she and her husband D fenced and planted my garden.  She did dishes.  He rigged the feeder in my chicken coop to go up and down so the mice wouldn't eat all the chicken feed.  He entertained their little one (translate: he drove around a lot) so Laura could sit in the NICU with me.  That was most important.

Speaking of sitting in the NICU with me, that is what my super active mom did every day for three weeks.  She managed to do this without going postal.  Nuff said.

Jon and I drove 120 miles round trip every day in separate cars for over 100 days. This got very spendy...but not for us.  Employees at Vivant, where Jon's sister-in-law works, raised $500 for Maverick cards for us.  Jon's parents (in addition to driving an hour down from Heber several times a week to sit by the bedside of their grandson) gave us each a credit card to use for gas after the cards ran out, which happened very quickly.

This all in addition to the many many prayers and days spent fasting and faith of family, friends, and perfect strangers, if there is such a thing in this world. 

"The Lord does notice us, and he watches over us. But it is usually through another person that he meets our needs. Therefore, it is vital that we serve each other...So often, our acts of service consist of simple encouragement or of giving mundane help with mundane tasks, but what glorious consequences can flow from mundane acts and from small but deliberate deeds!" Spencer W. Kimball


I'm feeling especially full of gratitude this Thanksgiving season.

**Update: 22 November
I forgot two very important people. 

My best friend, Krista, also left her family and came out to be with me when Mac came home.  Krista had her own early one, and knew that it would be nerve wracking those first few nights away from the nurses and doctors.  She cleaned my  house, did my laundry, made us dinner, and gave me massages (she is a massage therapist...ahhhh).  It was heavenly just to have her here with me and I know it was a sacrifice for her to come out from Oregon.  She has been such a blessing in my life.

Jon's boss, the mayor of Mount Pleasant, not only gave him all sorts of time off the first weeks after McKell was born, but she then let him take off from work an hour early every day so that he could drive up to Provo after work to be with Mac, even just for an hour or two.  Not only was that excellent for him and Mac to bond, but I was in serious need of Jon's emotional support.  And while we are talking about work, how about all of the people who stepped up and helped with my classes the last two weeks of school that I missed.  God bless the people of  this community.

MIA

We haven't meant to go missing, it's just that the last two months have been pretty crazy as we adjust to having the Bean home.

First of all, a reminder:

He was such a little guy, and so covered in wires and stuff.  This was taken just a couple of weeks after he was born.

This was taken tonight:

It's the same bear and, believe it or not, the same Bean.  My goodness, in case we were concerned he wasn't growing, I guess...

So, here's the skinny on life since the last post.

Mac had surgery for a hernia while we were still in the hospital. It went off without a hitch and he recovered really quickly.  He was well enough to come home four days later. We said goodbye to a lot of people we had grown to love.  I spent as long in the hospital as I have lived many places in the last 15 years.

Mac wouldn't eat at first.  He had reflux and threw up most of the small amount that went in.  He cried when we tried to feed him.  He cried when we held him.  He cried when we put him down.  It was tragic.  He was already on medication, but the first Prevacid he wouldn't take at all, and then we got dissolving stuff that he loved, but it still didn't make it all better, so the doc threw in Zantac for good measure.  It worked like a charm. He still wouldn't eat as much as he "should" have, but at least he wasn't losing weight and he wasn't in constant pain from reflux or hunger.

We had to make weekly trips up to Provo for eye exams to monitor his retinopathy, and I am happy to announce that he had his last appointment two weeks ago and was pronounced "out of the woods"! No surgery and no lasting damage to his vision.  It still isn't 100% finished developing, but he's old enough and it is good enough we're safe.  Halleluja.  Curious to know what those appointments were like? Go watch Minority Report...except that Dr. Carver was wonderful and his office was clean...but having things stuck in your eyes to keep them open and then having instruments jabbed into your eyes to move them around, well, it doesn't much matter how great the doctor is; that sucks.

I started back to work part time the beginning of October.  I work every other day and Mac hangs out with his Meema (I have no idea how to spell that). It is wonderful that he gets to bond with her and she spoils him rotten, which is OK by me.  I still treasure my relationship with my grandparents and want the same for him.

All in all, life is grand.  It is so nice to have him home.  I have never existed on so little sleep, but am functioning remarkably well and he is starting to sleep longer stretches during the night.  He is not a very fussy baby, though he does have his fussy times.  This is especially rare for preemies, so we are grateful.  Don't get me wrong, he fusses, but not for hours at a time and he isn't usually inconsolable.  Between his vibrating chair, his sling, and one of us walking him around, we can almost always find something that makes him happy.

We took a trip to Oregon last week and he didn't need oxygen the whole time we were there.  6K feet elevation makes a big difference though, so he still needs a little bit most of the time.  If he keeps eaing like he has lately, however, we'll be done with it in no time.

God is good. We're daily aware of how blessed we have been.  So far, we haven't seen any developmental delays, and there shouldn't be any long term health issues.  He brings us so much joy and we are so glad he is a part of our family.

And that outfit he is wearing in the above pic? Doesn't fit him any more.

100 Days

Friday marked our 100th day in the NICU.  It was also my adjusted due date.  My body seems to know this, as I have begun to loose copious amounts of hair.  I'm sure this is just hormonal and has nothing to do with my stress levels.

We are so close to the end of our stay here, we can taste it.  McKell seems to not want to leave his private spa and personal attendants, though, and is taking his sweet time with everything.  This child, moreso than normal children I'm sure, was sent specifically to teach me patience and faith.

Let me 'splain.

About one month ago, he was moved to a low flow oxygen system.  This meant that we could start working on oral feedings.  I thought for sure we'd be home within a week.  He has always sucked so stupendously on his pacifier, he has woken up for feedings for months, and he queues his hunger like a champ, with much rooting and sucking on his fist.

Alas, it was not to be.  He just wouldn't get into it.  His swallower seemed to be broken.  He choked every time, and this would usually lead to a vasovagal response, which means that his heart rate dropped to almost nothing and he would basically pass out. This is not an enjoyable experience and so he started to hate to eat.  It was much more convenient to be fed through the nose.  He even started playing opossum so that we would leave him alone, or he'd just pretend to suck.  We call this an oral aversion and had it really taken hold, it would have made life not an enjoyable experience, so we backed off and started being very careful to let him take the lead.  Then we tried thickening up his milk with banana baby food, which made it easier for him to figure out what to do with all the liquid in his mouth.  We took it very slowly.  We waited until it was his idea. 

The other problem we were having is that he would not wake up when he got hungry.  He didn't recognize his hunger for what it was, so he would sleep through it.  He is IMPOSSIBLE to wake up.  Cold towels, naked baby, tickling the foot, baths.  Nothing worked.  He would get furious, but as soon as I'd stop harassing him, he'd be totally asleep.  When we tried to get him to eat when he wasn't fully awake, he would choke even more, or gag.  It was lovely.  The following are some pictures I took while he was supposed to be eating:

So, as you might imagine, I was getting very frustrated and impatient.  I'm so tired of him being there and not home.  Heck, I'm so tired of being there myself...but I keep reminding myself that the Lord is in charge.  One night while feeling especially discouraged, I found myself having a car conversation with God (never had one? Try it out sometime).  As I was telling Him that I thought it was time for McKell to come home, I had a very distinct, almost cartoon, image appear in my mind...it was of me handing over something to God, but when He tried to take it, I wouldn't let go.  It was like watching a movie in my head.  I realized I kept telling Him I wanted Him to take over, but then wouldn't let Him.  Can you picture it?  Very comical.  Made me laugh out loud, actually.  In the car.  All alone. 

I'm secure like that.

And here is the beauty and the resolution: Mac has a hernia that needs to be repaired, and the surgeon that does them just moved to UVRMC (our hospital) from Primary Children's in SLC.  This means we don't have to drive all the way to SLC.  The surgery is scheduled for Friday of next week, and will happen before we leave the hospital.  This means that it is covered under his hospital stay as far as insurance is concerned, which saves us about $5K.  It also means we keep our nurses and the presidential suite.  Nice, right?  And this week, our little Bean has started eating like a champ.  He should be ready to head home sometime next week (keep your fingers crossed...er,  I mean, that whatever  is right will happen...)

I guess maybe the Lord knows what he is doing after all.

A Room with a View

Meet Mac.

Well, that is a little outdated now.

Now, he's fat. He has wrist rolls and neck rolls and a double chin and dimples on any and all joints.

And his head is bigger.

And he has 3 tubes coming off of him instead of 13. It's much easier to pull in and out of bed to snuggle him and doesn't require three people to do so.

And he lives in a Robbed-the Convenience-Store-looking-Jail-Crib,

instead of a Wrath-of-Khan-looking-Spock-Coffin.

He cries now, and grunts, and does the baby yawn noise.  He opens his eyes and interacts.  He communicates happiness and displeasure.  He wears cute onesies, which is good because I have about 150.

He now weighs five pounds and breathes all on his own.  Okay, mostly on his own.  He is only on 1.5 liters of air at 25-30% O2, which is a jump from where he was six weeks ago, which was intubated. Hooray!

He loves his bath.

And, he was moved from the high maintenance side of the NICU to Nursery B, which is where the bigger babies are, which means he is closer to going home.  Not only that, but thanks to a nurse whom we love, and who obviously loves us, he now has a room with a view (thanks Mary!).

 
Ignore the rooftop and focus on the mountains and the temple.  The rooftop has it's purpose, but is not where we should focus.  Can you see the analogy?

After he finished his round of antibiotics and started feeling better, he improved rapidly.  And now that there isn't so much air blowing into his nose, he is able to feed orally.  So, we started nursing last week, which is really exciting.  It was a bit rough at first, due to a disparity between the size of his mouth and the size of my...well, you get the picture. Once we found a breast shield that was small enough for him to latch on, though, he did remarkably well and is continuing to improve.  This is a huge step toward going home sweet home.  We still have our hurdles though.

Because he has had to have so many blood transfusions, his bone marrow has gotten lazy and has never learned to produce hemoglobin properly.  It should step up here in the next little bit, but in the meantime, he is anemic and that makes him feel a bit poorly.  We have to have that straightened out before they will release us to the world.

Lastly, his eyes.  He was diagnosed two weeks ago with stage one retinopathy of prematurity, which is a problem with the way that the vessels in the eyes grow into the retina.  This happens as a result of swingy O2 levels, crummy lungs, high oxygen saturation, transfusions, and basically everything he has done or had.  Last week, they discovered it had progressed to stage two.  Stage three requires laser surgery to correct.  It is possible that it will resolve itself, but he is a high risk baby for needing the surgery.  It will save most of his vision, but destroys the peripheral vision.  We feel blessed to live in a time when it is possible for him to keep his sight at all though.  For many years after they got to a point that they could save preemies with supplemental oxygen, many of them lost their sight altogether as a result of this disease.  His next check up is tomorrow and we are praying that his eyes will be protected.  Without peripheral vision, he can't ride a motorcycle.  Poor boy!

Otherwise, life flows along.  He is making progress and we are so grateful for the amazing docs, nurses, RTs, and other staff at UVRMC. They have been fabulous.  If you have to have a micro-preemie, this is the place to have him!

A Listening Ear...

For the past two weeks, Leah has been holding little Mac, and feeling as though something were amiss. For the past several days, she has pressed the nurses and doctors to run a few tests, take a look, pay attention, check the results, and then recheck them. She couldn't shake the feeling, or prompting rather, that an infection had taken hold somewhere, though she had not the slightest idea where, nor  proof with which to back her feelings.

So why in the world would the nurses and doctors take her pleadings seriously?

It's Provo, of course, and she said, "I just have a hunch". It is the land where hunches are heeded. And thank goodness for that. They decided to throw in a test for infection when they did their blood gas tests the next day, although, they assured her, they thought he wasn't sick. He didn't look sick. He didn't act sick. She wasn't convinced. Just do it for peace of mind, she asked.

They did. On Tuesday, results came back indicating that there was inflammation and probably an infection. Strange though, his white blood cell count was normal. They started him on broad spectrum antibiotics anyway, just in case. Good thing, on Wednesday, white blood cell count was elevated.  Because they listened, they were able to catch the infection before his little body even reacted to it. They found the source in his intestines and now they are getting better.

There were also things that they had assumed were just unique to him: high heart rate, high temperature, inability to properly oxygenate, sleeping more, grumpiness…all the signs that made mama wonder…they have all resolved themselves now.

The Lord is definitely watching over this little one. And his mama is trying to pay attention.

As for now, Mac, Faith, and Jon need our prayers and support more than anything. So keep them coming!!

Elephant Man

Well, yesterday was a monumental day in the life of the Bean. That darn tube...the one causing much of the inflammation, the secretions, and his distress, came out.  He is ventilator-tube-free.  He even has vocal chords he has been exercising, although they are still a little weak.  It is wonderful and terrible to hear his tiny, whispery cry...my heart soars and then it makes me weep to hear that plainful little song.

The loss of the tube does not mean comfort on this earth for little Mac though.  At least for the time being, comfort doesn't seem to be his lot in life.

Poor little guy.  It's hard to believe, but he seems to be more at ease with this than he was with the tube...makes you wonder what it must have felt like to have that thing in his windpipe.  So, meet the NIPPV, which is a Non Invasive (cha right *snort*) Positive Pressure Ventilation, like a CPAP, but with a set number of "breaths" per minute, instead of just the constant flow.

It's day two now and his signs are all good.  We were worried about too much CO2 in the blood, which often elevates with this contraption, but his has actually gone down.  His settings are comparable to what they were on the vent, and his O2 supplementation is about the same as well.  He's also breathing on his own.

Did I mention that there's no more tube in his throat?

Did I mention I hate the sight of this thing?  But I keep telling myself it is better than the alternative and that if it means his lungs are healing, which they already are, I can stand it for a little while.

This experience has really increased my empathy for how the Father must feel watching the trials we endure.  It is a meager comparison, but how often I get impatient with His "pruning" and the pain and suffering, and how often His heart must break to see us hurt, even though He knows it is for our best good and development, which is the whole reason we are here on earth...to grow and become more like Him.  I want McKell to breathe, and this is what is required.  I can't skip steps, or his lungs become more damaged.  Though it is hard to imagine right now, when he is older and can run and sing and sigh, we will be grateful he went through this.

If he ever picks up a cigarette though, I'll kill him.

Wrestling Crocodiles and Fighting Bears

Mac turned one month old on Wednesday.  Thirty days old and thirty weeks gestation.  Yesterday, when we went to see him, there was a noticeable difference in his size.  Because we see him everyday, it is hard to notice sometimes, but every once in a while we catch it and are amazed by how he has changed.  He's bigger and stronger. Linda the amazing nurse tells us it is from wrestling crocodiles and fighting bears at night.

When he was born, he had almost no fat (so he had no butt cheeks...it was hilarious) and his skin was so papery thin, he was brick red because his blood was so visible.  His head was still very mushy, and his eyes were fused.  He looked like an adorable little alien baby. 

Jon's ring fit on his perfect little foot.

I had never seen such a small baby.  But then, I spent every day with him, and suddenly, I didn't see the tubes and wires anymore and instead of him looking small, all other babies started to look obscenely large.

Slowly, his eyes opened and he started looking more human. His skin got flaky, and then came back much thicker and, well, skin like.  He has always had as much hair as Fabio though, good grief; look at that mop.

In the last week, though, he looks downright babyish to me.  His cheeks are filling out (both sets!),  he looks longer in the isolette, and he is more often alert and interacts more.  It really is remarkable how much he has changed in just 30 days.

The last week was eventful.  I already talked about his switch to the conventional ventilator, and he has done remarkably well on that.  After a week though, they were still unable to get his vent settings weaned down and he was still producing a ton of secretions, so his lungs continued to be really cloudy, and are starting to become scarred as a result of the inflammation, so we started discussing the use of dexamethasone again.  The difference was, this time the idea was to use it to extubate, as opposed to using it as a treatment for Chronic Lung Disease.  I had also had several discussions with other doctors about how it is used here and the differences in protocol between here and the studies I had read, and was feeling more comfortable with it's use.  They use smaller doses and start when the babies are older, which decreases the risk of developmental disorders.  They started it on Friday and he has done really well on it.  His vent settings have come consistently down.  We're hoping that we can switch him to the CPAP (like what people who have sleep apnea wear) on Friday and get rid of that tube so his lungs can start to heal, and so I can see his cute mouth.  This is a pretty big step and we are pretty excited, so keep fingers crossed that he responds well.

The other thing that happened this last week is that he decided he had had enough of his tube and extubated himself.

Ok, so that isn't quite what happened.  What actually happened is that he got some fluid in his tube while I was holding him as a result of some medicine they had given to thin the secretions.  He waterboarded himself and, in the process of freaking out (who wouldn't), he did a pushup with his super micropreemie strength and pulled the tube out of his wind pipe.  This led to several minutes of bluish grey skin, resuscitation, and panic among family members (mom and me) and determined amazingness among the respiratory therapist and nurse (go Pam and Val!).

Makes you realize (again) how fragile this life is, not just for these little ones, but for all of us.  So, we revel in the beauty around us, love as much as we can, forgive, enjoy the time we've been given, and eat dessert first.

Oh, and express gratitude.  I hope you all know how aware of and grateful we are for your prayers and love and support.  We couldn't ask for better friends and family.  Or strangers, for that matter...we know you're out there lurking and following our story through mutual friends. I hope our story brings you hope and you can share our joy.  That is part of what this life is about, after all.