Understanding BPD

Found a good summary of BPD, also known as Chronic Lung Disease, on the American Lung Association's website.  This is what has happened to Zachary's lungs and what he is trying to overcome.

What is BPD?

Bronchopulmonary dysplasia (BPD) is a lung disease that is seen most often in babies who were born severely premature—more than 10 weeks before their due date. Babies with BPD have inflammation and scarring in the lungs.

About 5,000 to 10,000 babies born in the United States each year have BPD. More babies today have BPD than 30 years ago because more very premature babies survive.

How Serious is BPD?

Most babies with BPD recover, and many are able to have normal, active lives.

Recovery may be a slow process. After your baby leaves the hospital he or she may need continued medication, breathing treatments, or even oxygen at home. Although most children can come off supplemental oxygen by the end of their first year, a few with serious cases may need a breathing machine called a ventilator for several years or, in rare cases, their entire lives.

During the first two years, a child with BPD may have a number of lung infections. You should see the doctor when your baby has a cold, runny nose, cough, chest cold or fever.

Within a year or two, most children who had BPD have few breathing problems. They are not restricted in their activities and do not need special medical treatment.

What Causes BPD?

BPD most commonly occurs as a complication of respiratory therapy in premature infants with respiratory distress syndrome (RDS). RDS is a condition in which the baby's lungs are not developed enough to take in the air they need.

Babies with RDS must have oxygen and often need a machine to help them breathe to prevent brain damage and to save their lives. But, the oxygen premature babies need can damage their lungs by causing inflammation. This can injure the airways. High levels of oxygen also may slow the normal development of the lungs in very premature babies.

When oxygen must be delivered into the babies' lungs by a breathing machine (ventilator or respirator), it may be even more damaging. These machines use pressure to push air into the lungs. But the pressure can irritate the lungs and cause them to become more inflamed. To help avoid this problem, babies may instead be given oxygen through the nose with a nasal continuous positive airway pressure (CPAP) machine.

Infections in premature babies' lungs can be another cause of BPD. The infection causes inflammation, which narrows breathing passages.

Goucher player paralyzed in freak accident

http://www.d3hoops.com/notables/2012/05/goucher-player-paralyzed

This has nothing to do with Zachary, but I wanted to share to remind everyone how fragile life is and how we must live each day to the fullest.  I played basketball at Goucher and was on campus shortly after this happened.  I can't imagine how Damone and his family are getting through this but I am sure they would appreciate your prayers.

CRAZY couple weeks

It has been a rough couple weeks around here. 

Zachary got pneumonia and spent all last week in the hospital.  The viral infection in his lungs was making it more difficult for him to breathe, and consequently, raising his heart rate significantly.  We could tell he felt altogether crummy, and last Monday about midnight, went to the hospital after we were having trouble keeping his blood properly oxygenated with the amount of oxygen we had been authorized to administer by his doctors.  Ended up in the Pediatric ICU around 4:00 a.m.

He got more O2 and higher vent settings to help him breathe better.  He got sicker for a couple days but by Thursday morning was feeling better.  Got to go home on Saturday, although he missed the March of Dimes walk, which was that morning.  (Team Zachary raised more than $4,100).  Although he's on the upswing we still have to give him oxygen 24/7, probably for a couple more weeks until he can maintain his sats on his own.  And we've had to suction his increased secretions more often.  Seems like we dodged a bullet though, as we've heard that lung infections can be life threatening for kids with BPD (the lung disease he has).

Unfortunately, his homecoming coincided with his day nurse going on vacation, so we had no day or night nurse for most of the following week.  Started taking its toll on us after a day or so.  Last night we had a nurse and finally got a full night's sleep for the first time since he got home.  Didn't want to get out of bed this morning, that's for sure. 

The illness has delayed the tube weaning, which was supposed to start the day he ended up in the hospital.  Looks like we won't start until the end of June or the beginning of July at the earliest.  His pediatrician and therapists want him to be in optimal health when the process begins, as he is expected to lose weight, which he really can't afford to lose since he still weighs less than 17 pounds. 

We're all looking forward to going to Florida in a couple weeks for the family reunion.  Hope he's ready for all the attention he's going to get!

To momma . . .

How Preemie Moms Are Chosen
by Erma Bombeck

Did you ever wonder how the mothers of premature babies are chosen?

Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."

The angel gasps, "Selfishness?! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see-- ignorance, cruelty, prejudice-- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air.

God smiles. "A mirror will suffice."

tube wean (day 1) . . . not

Today was gonna be the day we started trying to wean the little guy from his stomach tube through which he gets much of his feedings.  That got put on hold, however, because Zachary got sick.

We had to make an unscheduled trip to the pediatrician this morning because overnight he was requiring oxygen (and a lot of it considering he hasn't needed it for several weeks) to keep the oxygen saturation of his blood above where it's supposed to be.  His heart rate was higher than normal too.  And he was coughing and had vomited his earlier feedings, along with being generally fussy, which he almost never is.

The verdict:  pneumonia and a partially collapsed right lung.  Not the best way to start the week for sure.  We're giving him more O2 along with some antibiotics and steroids to see if that helps over the next 24 to 48 hours.  If not, we'll be heading to CNMC for a likely admission until his lung improves so he doesn't have to work so hard to breathe. 

Tough to see him so uncomfortable and not really be able to help.  And a little disappointed that the wean will have to wait for now.  We'll keep you posted . . .

calm before the storm

Things change tomorrow. 

That's when we're going to stop feeding Zachary.  Not to punish him, but to get him to experience hunger and hopefully start eating baby food and other solids that he should be eating at his age.  Right now, he just drinks formula from a bottle, and not even enough to grow sufficiently at that.  So we have to give him the extra he passes on through his feeding tube, supplemented with other oils and calories. 

This "tube weaning" as it's called is sure to be hell on everyone, especially him.  The general plan is to start reducing the amount of formula he's given each day until after about a week, when he'll be denied the stuff entirely in hopes that he will eat solids because he is so hungry.  So my guess is we're going to have a hungry, cranky, irritable, and sleep-deprived toddler on our hands after a couple days. (I get cranky when I miss a single meal so I can't imagine how it must feel to miss multiple ones).

Sounds simple enough, in theory.  The big obstacle, at least in my mind, is that he generally chokes and barfs whenever any real food makes its way into his mouth.  He usually panics and gags whenever this happens.  He hasn't even had any solid food in his mouth for almost two month.  So to say he's out of practice eating would be an understatement.

Not going to be easy for us either, watching our baby cry out in hunger and wonder why we are not helping him.  We've been told by the therapists that parents are often too eager to pull the plug on the wean just before there's about to be a breakthrough.  I can totally see that happening.  There will undoubtedly be some tension between us and his therapists in this regard, so it will be a stressful time for everyone.  But it will be worth it if it works. 

Zachary needs to start gaining some weight.  He's bounced between 16.5 and 17 pounds for the better part of two months.  It could be worse, but it worries me that my almost 19-month old weighs so little, especially if he gets sick.  We've been warned to expect that he'll lose weight during the wean, so we'll be seeing his pediatrician every couple days for weigh-ins and general health checks.  We'll abort the wean if he loses more than 10 percent of his body weight.

So on this calm Sunday morning we're anticipating the coming storm; hoping it won't be as bad as we think and praying we'll all get through it in one piece.

We're almost there!

http://www.marchforbabies.org/personal_page.asp?pp=4157841&ct=4&w=5302475&u=zacharywhite

Team Zachary has almost reached its goal of raising $3,500 for the March of Dimes walk to stop prematurity and help families of preemies.  We're just $135 short!  Please help put us over the top by clicking on the link above and donating before May 12.  Thanks so much!