No privacy in the hospital

Poor Oliver had quite a few spectators at his last bath:

Our first family picture

Elsa's first haircut

Oliver update #5 - Swallow study and MRI results

Joel and I met with one of Oliver's doctors and one of his nurses today in a parent conference to review his condition and discuss what will need to happen before he is discharged.  The primary reason Oliver still needs to be in the hospital is because of his high blood pressure.  His doctors are hoping that a higher dosage of his current heart medicine will help with this and we'll see how it looks over the next few days.  He is still having occasional apnea (when he forgets to breathe) and bradycardia (when his heart rate slows way down) events, so we'll probably be sent home with him on a portable home monitor that will send an obnoxiously loud alarm through our house if he stops breathing or has a severe drop in his heart rate.  We will also probably be bringing him home with his feeding tube (see below) and a long list of follow-up appointments with the cardiologist, nephrologist, geneticist, occupational therapist, and of course our regular pediatrician.

• Swallow study results: The mechanics of Oliver's swallowing appeared normal!  Yea!  The therapist now attributes Oliver's difficulties (holding his breath, dropped heart rate, and a bit of choking) to his low stamina.  This means that we will continue working with him to learn to nurse when he is awake and alert but we'll stop as soon as he shows signs of fatiguing and then the remainder of his meal will be given through his feeding tube.  We expect to continue this combination of nursing and gavage (tube) feeding at home after he is discharged until he has enough stamina to nurse for all his meals.
• MRI results:  The MRI study was conducted on his brain to follow up some concerns about Oliver's ventricles appearing enlarged in the ultrasounds before he was born.  (Note: these are the ventricles in the brain that allow the spinal fluid to flow in and around the brain, not the heart ventricles, which in Oliver's little body also happen to be thicker than normal.)  The MRI confirmed that the ventricles in Oliver's brain are indeed mildly to moderately dilated.  The doctor believes that, in Oliver's case, this is due to some part of his brain being smaller than expected, and that the lack of tissue allows the ventricles to take up more space.  We are not able to tell at this point what part of the brain may not have developed correctly; we'll just have to wait and see how he grows and learns.  The great news from the MRI report is that all other aspects of the brain (the ridges, size, density, etc.) look completely normal!  Allelulia! 
• We're still waiting on a few more genetics tests. 

So, we still don't know what Oliver's full capabilities will be, but we are encouraged by both the study results and the fact that as he gets older he continues to grow in alertness and curiosity.  He tries so hard to lift his head up already (see the photo below)!  We hope to all be home together as a family soon. 

I am exhausted, but the Lord is good.

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!):



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!

Sibling introductions

Elsa adores her little brother.  Of course she has known all along that we were having a little boy named Robin Hood, but thankfully she has accepted the name Oliver without any issue.  She made a darling card for him, and tells everyone "My baby brother Oliver knows who I am because he likes to hold my finger."

Nora was pretty excited about seeing the baby in the enclosed bed, and tried hard to get her hands on him to play and pat the baby like she does with her "Anna" doll at home.  Unfortunately I don't think that Oliver would enjoy being lugged around the house in the manner to which Anna is accustomed!



Oliver Michael Dunham - our little Elf King

Decision Day came Sunday, March 25th.  The nurses saw several longer-than-acceptable heart rate decelerations early in the morning, so they called my doctor and the perinatologist who who came over and quickly did an unscheduled ultrasound to check on the baby.  With the index they use, normal fluid levels should average around a 15.  They sent me to the hospital when the index level dropped to a 6, and it had continued to decrease slightly each time they checked.  This time she found that the fluid had dropped further to just above a 3.  They had been trying to keep the baby growing inside of me for as long as healthily possible, but now the fluids were definately too low and the risk of damage to the placenta and cord were too high.  It was time for us to meet our baby!

Then we had to decide on how to have the baby - induced natural labor or C-section.  Most of you who know me well know that I DID NOT WANT TO HAVE A C-SECTION.  My doctor is wonderful - she was so patient through all of our questions and would have still let us done whatever method we wanted.  It soon became clear to us though that the best choice for the baby, in our situation, was a C-section.  My first two labors were relatively long though very simple and uncomplicated, and we didn't know how my body would respond to being induced.  Every time there's a contraction the baby essentially has to hold its breath as the the blood vessels and everything tightens around it.  Considering that we has already been seeing some heart rate decelerations before any contractions had started and the "padding" fluid around the baby was so minimal, there was serious concern that the baby would not be able to sustain the pressure of natural labor and we would have to do an emergency C-section anyway. 

So, after weighing the options and risks, and praying fervently for God to help me overcome my great pride in having only natural, unmedicated births and my fear of being awake while having a major surgical procedure, Joel and I decided that we would have the baby via C-section.  I was filled with such a comforting peace after we had made our decision, and I knew we had made the right choice.

It was a most difficult but incredible experience.  I will spare you all the details, but that I was amazed that from the time we made the decision it took less than an hour before I could hear our son crying on the other side of the blue screen across my chest.  Though I didn't get to actually see him or hold him for another 7 hours as I recovered and he was "tucked" in at the NICU, I cried with him to hear his lungs working and the ohhs and aahhs of Joel, the doctors and nurses as they told me he was pink, with good muscle tone, and ever so cute.  My doctor confirmed that there was hardly any fluid around him, but that the placenta and cord were still very healthy.  It was so great to have feel a confirmation that he was delivered at just the right time - he stayed inside as long as he could but came out before any damage had occured.

Joel held my hand the whole time and stayed with me until I was calm and resting back in my room, and then he went to Oliver's bedside to hear the doctor's report for him.  I was so blessed with such a wonderful team of doctors and nurses for the procedure.  Besides Joel, the only other man in the operating room was the anesthesiologist, and he had such a sweet and gentle spirit that really helped me get through it (I almost fainted, but my doctor and nurse held me up and kept me still for him to finish the spinal).

He is finally here! 

Oliver Michael Dunham, March 25th, 4 lbs. 11 oz.

His name comes from the olive tree.  In the Bible the olive branch symbolizes peace, and "Michael" means "who is of God?"  For us his name means "Peace that is of God," because that is what we have been learning about for the last several months. 

James 1:2-4 "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything."

I thought I knew about God's peace, but I realize now that I was previously lacking that "peace that passes understanding." We praise God that he has used, and is still using, this trial in our lives to draw us closer to him as we mature and learn about true hope and perserverance. 



The name Oliver can also mean "Elf King" or "Elf Army," which will go very nicely with the Fariy Princess and Pixie that we already have at home!

Hospital hostage

On Tueday, March 21st I went in for my regular, twice weekly ultrasound at the Maternal Fetal Medicine Clinic for the perinatalogists to check the Little One's growth and fluid.  Unfortunately the fluid levels had dropped and I was told to check into the hospital in two hours!  I had planned a morning out to do errands!  My friend was watching the girls for me and I needed to get groceries!  No!  Our baby wasn't supposed to be here for another five and a half weeks! 

Well, since the baby's health was more important than my grocery trip I checked into the Rogue Valley Medical Center for continuous monitoring of the Little One's heart rate and a plan for another ultrasound in the morning.  And with the most beautiful and timely bunch of my favorite roses that my husband has ever given me.  They stayed fresh and gorgeous the whole time I was in the hospital. 

If the fluid levels continued to drop then there would be no protection for the baby, placenta, and umbilical cord and thus a greater risk to the baby if anything was damaged.  At the hospital the nurses promptly put me on "bed rest," got an IV started (after two tries! I HATE needles!!!  and I think needles hate me too!) to put a total of three liters of fluid into my system, and told me to drink as much water as I could to try to increase the fluid level as much as possible.  Unfortunately the fluid level was mostly up to the baby's urine output, so it made sense that with only one functioning kidney, our Little One was having trouble producing enough. 

The girls handled my sudden departure fairly well.  We had just told Elsa that the new baby may be "sick," so she understood why the doctors needed to be careful and watch the baby closely at the hospital.  Even so it was very good when they came to visit the next day.  Elsa got to help the nurses monitor the baby's heart rate and they both thought my bed was absolutely exciting with all the buttons.  My bed was like a carnival ride!

Over the next few days we kept monitoring the baby's heart rate, watching for "d-cells," or decelerations, the perinatologists came about every other day to check the fluid levels via ultrasound.  The baby's heart rate was mostly strong and stable, but the fluids kept dropping each time they checked so we kept waiting and I kept resting (or trying to!), drinking tons of water, and ordering whatever I wanted from the hospital menu.

These days were so very strange to me.  I had never been admitted to the hospital before except when I was in labor, and then we were busy the whole time until we went home the next day!  At first the prospect of day after day in bed in the hospital with nothing wrong with me was very challenging, but I began to count my gifts again and realized that this was an incredible, unexpected blessing.  God knew just what I needed before the baby came:  a forced time of rest, with my husband at my side, with no dishes to cook or clean, no toys to pick up, no laundry to fold, and all with complete confidence that my girls were being cared for.  Plus, this is what I could "do" for my baby.  I couldn't really do anything to help my Little One's condition, but I could rest and work with the doctors and nurses to be prepared.

I will be forever thankful for the friends that changed their daily plans to care for our children at our home, and for the sweet spirited nurses who took turns caring for me.   God sent some of the most perfect women to watch over me during these days.  They encouraged me, told me their own stories of challenging but blessed childbirths and caring for special children, and patiently answered all my many, many questions.  Also my mother was able to get a last minute plane ticket to come and help us.  She arrived late Thursday night, and we were all so happy to have her join us. 

We also had several visits from dear friends during our days of waiting and they were so encouraging to us.  As the reality of the situation for our baby continued to sink in for me as the days passed I definitely found myself emotionally struggling through all the possibilities, but it was amazing how God kept providing just the perfect, strengthening and affirming scriptures, visitors, and phone calls. 

On Saturday my family took me out for my first ever wheel chair ride!  I got to watch the girls play on the hospital playground, and we all had a wonderful time in the brisk early spring morning.