Oliver update #3 - heart diagnosis

The diagnosis from the pediatric cardiologist is that Oliver has Wolff-Parkinson-White syndrome (WPW).  This is not a genetic "syndrome" per se, but a condition of the heart that has been causing him to have episodes super high heart rate, shooting up to over 300 beats a minute.  A normal heart rate for a baby his age is in the 130-170ish range. 
At first we (Sonya and Joel) thought the concern was more about a heart rate deceleration, but now we understand more about the episodes he had been having:

• First, he would stop breathing for longer than he should (called apnea). 
• Second, his heart would appropriately respond by drastically slowing down (called bradycardia).
• Third, his body would try to recover, but would jump into these super high heart rates (called SVT, supraventricular trachycardia) instead of a normal heart rate.

His doctors and nurses have explained that the first two parts (the apnea and bradycardia) are of concern but are due to his prematurity, and will continue to improve as he matures.  It is the SVT that is a much more concerning problem, and thankfully the doctors were able to use the 24 hour heart study he had earlier this week to determine that he has WPW.   WPW syndrome is when there is an extra pathway in the heart muscle that conducts electrical impulses in an abnormal pattern through the heart as it beats, and this can cause, among other possible symptoms, episodes of super high heart rates.  There are many possible causes of a person having WPW syndrome, including structural abnormalities such as we have seen in Oliver's heart.

The great news is that it is treatable!  He has been on meds for the condition for 24 hours now and has had no new episodes of SVT!  The stats for him growing out of the condition are promising as well - 70% of infants medicated for WPW syndrome outgrow the condition by age 1, and there are common procedures that can be done to correct the problem if he does not outgrow it.  We will have a follow-up visit with the cardiologist in May to see how his heart is developing and how well the meds are helping.  ***So, while this is not an overall diagnosis for Oliver's condition, or even a total diagnosis for his heart, we are really happy that this part of the puzzle is treatable. 

Other good news - Oliver has been getting good marks for improved muscle tone, gaining weight, breathing efficiently without any help (the nurses kept finding his canula - the nasal tube with the low air flow - pulled out of his nose and he was still breathing fine!), and for his first real attempt at nursing today!

Finally, Elsa got to hold Oliver for the first time!  She LOVED it.  I kept asking her if she was getting tired and wanted me to take him, but she said she liked it and held him for about 20 minutes while we talked and read books together.

Thank you all for your continued prayers and support for our family and little Oliver. 

Chesterton on love

(I don't plan on posting reflections like this often, but some have been asking how I am doing through "all this," and this is how I was "doing" and what I was thinking today as my mother left after helping us for three weeks and my girls were being cared for by a dear friend so I could see Oliver and rest.)

I usually ignore the little inspirational quotes that are scattered throughout my day planner in perfect elegant script and pastel ink.  My life usually feels less than perfect or elegant and the "inspirational" quotes, even the good ones, rarely inspire me for more than a few moments before the next chore listed on the page below lurches me back into this earthly reality where I struggle to see grace through my dimmed glassed vision as I try to rest as I heal from surgery and plan when to visit my baby and when to fold laundry. 

But the quote for June, my birthday month, has stuck with me all day like the nagging, fluorescent hospital visitor badge on my sweater lapel.  This morning at my doctor's office as I was flipping weeks of time by with the flip of a finger to schedule the last follow-up visit with my OB I was surprised to find myself choked with words and truth:

"The way to love anything is to realize that it may be lost"

  -- Gilbert Keith Chesterton

I've known for a while that, considering Oliver's physical abnormalities, he could be given to us for only a short while.  We are so thankful that now, so far, we have reason to have great hope of him being with us for a good long time.  But knowing the uncertainty of his condition has definitely caused me to focus on every moment I have with him.  I had a delightful few hours with him this morning, enjoying his new, squinty eyes and small newborn cries.

But what about the other ones I love?  The dear man of my heart, my little fairy princess, my little fireball, my long-loving parents, my beautiful and endearing sister?  Even the silly, little furry animals that purr on my pillow.  They could be lost to me at any time too.  Is there really little difference between them and my little one in the NICU?  I want, no, rather need to cherish the days I am given with each of them.  I wasn't overcome with grief or regret for how I may have or still will squander my precious time (though I know I always should try to do better!), but it mostly reminded me deeply of what great blessings I've been given.  I agree with Chesterton that keeping an eternal perspective of the temporality of this life will drive me to choose to love more intentionally.   

I hope that this might be one of those "inspirational quotes" that sticks with me and resurfaces into my mind and heart as I daily choose how to fill up my time with my day planner and strive to be intentional about what to focus on each moment. 

God tells us our story one day at a time, and shows us his gifts one day at a time, and asks me to trust him for all the days ahead. 

Oliver has taught us so many things in the last few months, and I don't think he's done teaching us yet.  And thank you to G. K. Chesterton and Day Runner Poetica Personal Organizer. 

Mary Poppins and Tinker Bell in the NICU

My mother discovered Elsa carefully placing some dolls into boxes and baskets with little bits of fabric arranged oddly around their heads.

"What are you doing, Elsa?"
"These are the babies and they are at the hospital because they are too small."

Being sick and "too small" are the reasons we have given Elsa about why Oliver can't come home yet.  I love seeing how she understands the world through her great imagination and pretend play.  Her dolly NICU is on the chair to left of Elsa in the photo, and the dear babies in the isolette beds are Mary Poppins and Tinker Bell:

Also, here's an image my mother captured of some twirling fairies (we seem to be having a fairy infestation lately!):



Oliver update #2 - Heart concerns

While we visited Oliver yesterday he had a severe heart rate deceleration - the heart rate plotting line went flat, the monitor alarms went off, nurses came running, and his mother's heart started beating twice as fast to compensate for his lack of cardiac activity.  The doctor and nurse have told us that he has had a couple of these heart stopping moments, often followed by an extreme increase in heart rate as his body tries to kick itself back into gear, several times a day for the past few days.  Today a specialist came in and started a detailed, 24-hour study of his heart that will hopefully inform us about what part of his heart is causing the problems and how it can be resolved if he doesn't grow out of it himself.  His little chest is half covered with sensors and wires!

Talking to the doctor was very reassuring today as she explained that little babies, especially preemies, are much more resilient than adults in bearing extreme heart rate changes, and that even going a day with an extreme heart rate does not cause any damage.  That was a great relief!  So far Oliver has been able to recover from each of the incidents on his own within the 5-10 minutes they give him before they would start intervening to get his heart rate back to normal.  We'll get the results from the heart study probably by Friday. 

Two weeks old, 5 lbs 6 oz.

Oliver is two weeks old or 37 weeks old, depending on how you're counting.  Technically he's "full term" now!  He's been consistently gaining weight (5 lbs., 6oz!) and he's just started to wake up more often and be more alert.  Today is the first time that I've seen his eyes open for more than a few minutes.  It was so fun to watch him follow my face from side to side and stretch his neck to look around (not that he can really see very much yet, but he's noticing something!).  The nurses have commented several times on how calm he seems to be all the time, so I've really been enjoying the few times he gets some volume when he cries.

He really woke up after he got his bath yesterday.  My mother and I got to be there and help - he didn't mind the bath but he hated being dried off!

As for me, I've been doing well and am still trying to rest and heal.  I've been cutting back on the pain meds and I was discouraged at first at how sore I still am, but I'm so thankful for several friends here who keep encouraging me to be patient and keep resting. 

Oliver update #1

We got the results from his chromosome test today - there is NO EVIDENCE OF A GENETIC SYNDROME!!!!!  He has a complete set of chromosomes with no obvious duplication or errors!

*** EDIT: a day later, after talking with another NICU doctor, we understand better that the chromosome test that was completed for Oliver was a very basic test that looked for "obvious" and common syndromes, such as duplicated or missing genes.  It could be that he still has a syndrome, but it would be one that is less common and more difficult to see, such as a genetic "spelling error" in a particular location on a particular gene.  We will keep watching as he develops and if/when other symptoms of a particular syndrome appear, then we can go back and look at his chromosomes in much more detail at particular locations.  So, the results from this first test are still very much worth celebrating, but we will still be carefully watching his development and continuing in prayer.

We'll still be working through all of his congential "defects" (I hate using the word "defects" about our perfect little Oliver, so I think I will call them "uniquenesses" instead, at least until I find a better phrase!)  We'll still be working through all of his congenital uniquenesses, but it won't be with the label or expectation of a particular syndrome hanging over it all, at least for now.  We praise God that so far his little body has been funcitoning ok!



Life in the NICU

I am so thankful we live only 10 minutes from the NICU.   I am so thankful that he is doing so well and that we can hold him whenever we want, and can invite our friends to hold him as well.  I am so thankful for so many dear friends who give me rides to the hospital while Joel is at work.

I try to be in the NICU to hold him through at least two of his meal times a day.  Right now he is in a a NICU room where two nurses care for 4 to 5 babies at a time.  When ever I come to visit him I can do all the normal "mommy" things - change his clothes (provided from the NICU while he is there) and diaper, take his temperature, pick him up and hold him, and encourage him to start nursing during meal times while he is still being tube fed.  They provide recliners and chairs for visitors.  When I want to let him rest against my skin the nurses draw some curtains and set up a screen around us for privacy.  Often the lights are turned down low so that the babies rest easier, but that also puts me to sleep too!

The best estimate of when he will get to go home is around his due date, which is the expectation for most premature babies.  So far he continues to grow and behave just like the doctors expect for any baby born early at 35 weeks. 

 

He doesn't open his eyes too often yet, but he is getting more active everyday!

Here's a summary of his current situation:

• He is breathing room air with minimal "help" from a nasal cannula - it just provides a very small, steady stream of air to help him remember to breath, but he does very well without it too.
• He is digesting milk very well and they are gradually increasing his food volume every meal.
• He is maintaining his own body heat and now is in a "big boy" bed - a smaller "crib" instead of a hooded incubator
• The two echo cardiograms (heart scans) they have done since his birth have shown a thickening of the lower heart walls and three slightly "leaky" valves, but his heart is still functioning normally and well and his heart rate has remained consistent and strong.  He'll have another echo cardiogram before he is discharged, and then the doctors will decide how often to keep checking up on it.  We are hoping and praying that his heart will will heal or at least remain stable and not develop serious problems. 
• The ultrasound for his kidney confirmed that the left kidney did not develop normally and probably is not functioning.  The right kidney looks normal, and is functioning well (he fills his diapers!).  We will see a specialist at OHSU in Portland sometime soon after Oliver is discharged to learn more about how much, if at all, the left kidney is functioning and to see what may need to be done about it. 
• He will have an MRI on his brain just before he is discharged so see if that will tell us anything about the dilated ventricles and "webbing" in the ventricles that they saw in an ultrasound just after he was born.  Even if we don't learn anything new from the MRI we will be especially attentive to Oliver's development so we can be proactive about any special needs he may have. 
• An x-ray showed that his arms, legs, and overall structure is just the right size, and not particularly short like they thought based on the ultrasound, so he's little but just the right size for being born at 35 weeks!