Pink and white blossoms

Elsa and our apple tree:

 

 

 



Oliver update #4 - an ongoing puzzle for his doctors

Oliver is now 4 weeks old (wow, a month already!), or 39 weeks, just seven days til his due date.  I'm driving again and that has made it easier to be at the hospital more, but I am still very easily fatigued and find that I have been succumbing to weariness more often.  We know that the end is in sight for Oliver to come home, but of course we won't really know just when that will be until it is happening.  So, here's the report:

• GAINING WEIGHT:  Oliver is now 6 pounds!  He had stopped gaining weight for a few days so his milk is now fortified and he has responded well and started gaining weight again.  (They first spoke of adding a high calorie formula or corn oil to his meals, but I asked if we could use another more healthy and beneficial oil, so his doctor called me a few hours later from the grocery store and we settled on a gourmet grape seed oil!  Hopefully he won't turn into a gourmet food snob at too young of an age.)
• HIGH BLOOD PRESSURE:  His blood pressure has been steadily rising over the last few days and his doctors are trying to determine if this is due to his heart conditions or because of his problematic kidney (which could be signaling to his body that it is not having enough fluid flowing through it, and then the body responds by increasing blood pressure to increase the fluid flow).  They ordered another echo cardiogram which has shown that his leaky valves have resolved (good), that the ventricle walls have thickened even more (not good), but that the overall functioning of the heart is still normal (very good).  The doctors suspect that his heart is thickening as a response to having to work harder against the high blood pressure.  The medicine Oliver has been taking for the WPW condition is also used to lower blood pressure, so they have increased his dosage slightly to see if that will help.  We are also now waiting for results from a test that will tell us if his kidney is sending bad signals to his body and causing the high blood pressure. 
• LEARNING TO SWALLOW:  As the nurses have been working with Oliver and me on nursing some concerns about his swallowing have come up - he will often hold his breath, cough, and/or have a severe drop in his heart rate as he tries to suck, swallow, and breath at the right times.  On Monday he'll do a swallow study where they will take x-ray-like pictures of his mouth and throat as he drinks his meal. 
• On Monday he'll also have an MRI on his brain.
• We still have yet to hear back from one of the more in-depth genetics tests.     

He is generally still a very sleepy baby, but the times he is calmly awake and alert are slowly increasing.  I adore the times I have with him when his eyes are wide open and he tries to pick up his head and look around.  He loves being held and usually hates having his diaper changed, but I enjoy his moments of fussing as an encouraging sign of vigor. 

Flowers

I love flowers.

And I've been missing my garden, so I've been bringing it inside for me to see.

Oliver's new room, and Nana's here!

Oliver was moved into the "Special Care Nursery" this Sunday -this is a "step down" unit for the NICU where babies are moved as they stabilize and we all start working towards going home (but no, we don't have a date yet, and it still could be a while until he figures out how to eat on his own)  So now he gets his own room and even a window!  The room is huge for a little baby, but just the right size for all the monitors, special equipment, and visiting sisters.

And we're so happy Nana (Joel's mom) has come to help us for the next few weeks.  I'm so grateful to be able to spend more consistent time with Oliver as we work towards bringing him home!

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!):