It's the Little Things

Cliff has always had a thing for giraffes.  We're not really sure why.

Perhaps he likes their long necks or their keen sense of humor. Either way, he loves them.

So it was especially fitting that for Christmas Cliff received a giraffe WubbaNub.  It has proved to be Heaven sent. After Cliff's heart catheter procedure, the doctors all said that if we could get Cliff to take a pacifier it might be easier on him, especially if his future had some surgeries in it.  Cliff has never been one to like pacifiers and so we didn't really hold out much hope that he would suddenly change his mind. But apparently if you throw a giraffe on the end of a pacifier all bets are off.

Cliff took to his WubbaNub like they were long lost pals.  And it definitely helped him as he got done with the surgery for the g-tube placement.  It's actually really cute.  He and his giraffe are inseparable.

All of this made what happened this morning all the more cute. Cliff always seems to have trouble sleeping after about 2 AM. Before he got his nasal tube out he'd be up all the time fussing and crying and not letting anyone else get sleep. That seems to have subsided at least a little bit. Cliff still wakes up fairly frequently after 2 AM but now he seems to give at least some consideration to the idea of going back to sleep.

This morning was no different. Cliff woke up at varying points during the night, but after 5:30 AM he just wasn't going to go back to sleep. He wanted to have some interaction with people. But Teri was still asleep and I was tired so I figured I would lay him down next to me that way I could interact with him without having to be too energetic.  Cliff, as usual, is ok with this plan because he spends most of his day laying around anyway so if someone wants to see the world from his perspective he doesn't seem to mind.

As Cliff and I were lying there babbling back and forth to one another Cliff reached up to his mouth with both hands and grabbed his giraffe WubbaNub and pulled it out of his mouth and then moved it over to my mouth.  He didn't have the coordination to actually get the pacifier end into my mouth, and I wouldn't have accepted his generous offer even if he did have the ability to offer it, but I did get a soft giraffe rubbed on my face for a few moments.

It sounds funny, but I was very touched by the gesture. I have no idea if Cliff understands what it means to share, but I hope that he understands what it means to love and to be loved. I know Cliff loves that giraffe and I hope that what he meant by his little act was that he wanted me to share in something that gave him great joy. And although I may never know what Cliff was actually thinking, I know what I will take from the experience.

I grateful to have such a neat family. Teri and I love all of our boys. Cliff, in case you don't know our family, is our fourth child, all four of which are little boys. I am grateful for my wife, Teri, as well. And I am also grateful for Cliff.  I know Teri is too. We wish he was better. We wish he was healthy. We wish there was a clear cut path for what we could do. But even if the path is rough and a bit murky ahead, we are grateful to share in those little things that brighten our days even in the face of everything else going on. Cliff really is a special kid. I'm glad I get to love him.

Origami Owl Fundraiser

We really are blessed to have good friends in lots of places. One of our new friends is a new co-worker of mine Janina Walters. Janina is an independent distributor for Origami Owl, a jewelry website.

To help Cliff, she is offering the following deal:

1. Take a look on http://jwalters.origamiowl.com/ and let Janina know what you would like to order via email (janinawalters @ gmail.com). Please list Order for Cliff in the subject line.

2. Janina is offering some deals on the jewelry as well. You will receive a free charm for every 4 charms you buy and Janina has offered to cover your shipping costs and taxes.

3. Janina has also offered to donate any profit made on the sale to Cliff.

Thanks Janina and thanks to everyone who helps out this way.

G Tube is in

Cliff got his g-tube put in today.  Here's his last picture with his ng (nasal) tube in.

All we had to do to get him to smile was tell him that we were taking the tube out of his nose.  Well, that and make funny faces, noises, and wiggle around with his cool new stuffed elephant toy that he got from the hospital today.  And although he is pretty groggy from the anesthesia and may not know it yet, we think this will go down as a great day for him.  

For starters, he has been congested almost the entire time since the ng (nasal) tube went in.  That seems to have caused him trouble breathing and sleeping comfortably.  As a result, Teri and I have had plenty of sleep deprived moments over the past couple of months.

Even just the short while immediately after the surgery seemed telling on what kind of effect this may end up having for Cliff.  Where we used to hear Cliff's constant congestion with nearly every breath and had to wipe snot away all the time, we didn't hear him once after his surgery.  And we never had to wipe a snotty nose after surgery.  He did seem to be itchy from the morphine they gave him, but some antihistamines seemed to take that away.  

Cliff definitely has some uphill battles ahead but this is at least one of them that he appears to have cleared successfully.  Now we'll see what tomorrow brings.  

About Cliff

We welcomed Cliff into this world in spring of 2012.  Like all newborns, he was adorable.  But we noticed early on that Cliff seemed to be suffering from a stubborn case of jaundice.  Unfortunately, it turned out to be a symptom of something far more serious.

After two weeks of severe jaundice our pediatrician sent Cliff to the hospital, where a parade of doctors and various –ologists came in to check on our little guy.  One hospital visit followed another and, over time, we began meeting with a whole host of specialists.  The conclusion, confirmed by genetic testing, is that Cliff has a variant of Alagille Syndrome that has only been seen once before.

For Cliff, Alagille Syndrome means health complications.  Cliff’s liver is not able to route the majority of the bile produced there to his intestines to digest food and his kidneys are unable to filter out enough acid from his blood.  Cliff also has a condition called pulmonary stenosis where the arteries leading from his heart to his lungs are too small which results in his heart having to work harder in order to do its job.  Cliff takes multiple medications each day to assist with many of these problems.  In addition, Cliff struggles to gain weight which is a problem for many children with Alagille Syndrome.  His doctors have put Cliff on a specialized formula and given him a nasogastric feeding tube for night feedings.

All this has kicked off what has become our new normal.  Cliff heads into Phoenix Children’s Hospital, among other places, on a regular basis to check-up with his doctors, including his hepatologist/gastroenterologist, nephrologist, cardiologist, nutritionist, and pediatrician.  We are very grateful for such a talented and helpful group of doctors who have been gracious in their help and explanations as we’ve gone through this experience with our little boy.

At this moment the future is still unclear.  There are some benchmarks that Cliff is doing great on and there are some that are more worrisome.  We enjoy each and every moment we have with our little guy and hope that we continue to have him here in our lives.  But in the meantime, we do our best to take care of him and put the rest into the loving hands of our caring Father in Heaven.

A Minor Roadblock

A few weeks ago Cliff's cardiac surgeon did a catheter of Cliff's heart where we found out Cliff's pulmonary stenosis was getting worse.  His pulmonary arteries are still the size that they were when he was born even though he is now 9 months old.  The effect is like attaching 3 garden hoses to a fire hydrant.  The water flows but under incredibly high pressure.  Ultimately that pressure makes Cliff's condition unsustainable long term without some kind of intervention.

With future surgeries on the near horizon our doctors have all recommended putting in the g-tube so that Clif would have an easier time getting nutrition after surgery.  It seemed like it took Cliff a week or two to bounce back after the heart catheter.  Perhaps some of that was because having the ng-tube in his throat was causing some difficulty.  But it also seemed as though Cliff had a rough time with congestion

That seems to be our biggest concern at the immediate moment. Cliff is just so congested that we worry about him not being able to even undergo the g-tube procedure on Monday.  With Teri having just had bronchitis last week we didn't want to take any extra risks tonight so Teri took Cliff down to the Phoenix Children's Urgent Care to get him looked at because his breathing and wheezing has gotten worse. The trouble is that it is very difficult to determine if Cliff is having trouble because of the complications from his heart or if it is just chest congestion.  Cliff is headed for the cardiologist tomorrow so hopefully they will be able to give us a bit more insight.  And hopefully this congestion goes away sufficiently that Cliff can get his g-tube in on Monday.  Here's to hope.

Cookbooks have arrived

We are very excited to announce that the cookbooks have arrived.  If you'd like to get a copy please give TeriDel or Tad a call or email us at babycliffnotes@gmail.com.  We'll post pictures once we get them.

Thank you for your support of Cliff.  It means a lot to us.  

Preparing for another hospital visit

Cliff is headed back to Phoenix Children's Hospital next week to have a G-tube put in. This will hopefully alleviate a bit of the congestion he has had with the ng-tube in place and make life a little easier on him. I'm sure he'll appreciate not being tethered as he learns to crawl.

The surgery itself is normally out-patient but with Cliff's heart condition they plan to keep him overnight to watch and see how he does. Hopefully the procedure will go fine and we'll be back home the next day.

We'll keep you posted.