ANSWERS!

as if we needed further proof that moving back to Grand Rapids was a good idea...

here we are in one of the nation's best children's hospitals with a little boy with mysterious internal bleeding. and because we are here at HDVCH, we have answers. this hospital employs the best, and so we have the best caring for our sons. thank You, Lord.

ever heard of a hemangioma specialist? well we have now. and she's treating our son. we feel so overwhelmingly grateful for her and her team.

I'll back up. our Ivan has two hemangioma on his facial area - one near his right ear and one on the back of his head. hemangioma are quite common and rarely require treatment. they grow, change color, poof up, and then start to fade away. the hemangioma near Ivan's ear is close enough to the ear that it's been monitored closely to ensure it doesn't cause any problems with his hearing. so we've had hematology on board for a while now.

remember that CT scan I wrote about last? well it showed that Ivan has hemangioma internally on his intestine. the source of the bleeding has finally been discovered. no more trial and error, no more tweeks to his feedings, no more antibiotics just in case. we found it.

enter the hemangioma specialist (because, once again,  HDVCH is awesome). she works both inpatient and outpatient with hundreds of infants and children who have hemangioma. this is her thing. this is what she does. there is one course of treatment, a medication called propranolol, to expedite the shrinking of the hemangioma. she feels confident that this will solve the problem, and her confidence fills us with confidence and hope. and relief.

it is extremely rare to have hemangioma internally, but let me remind you that we have the best caring for our son. we know that God prepared this path for us, bringing us home to Michigan and bringing us to a hospital uniquely equipped to care for, treat, and ultimately cure our son.

THANK YOU for your prayers on behalf of our son. we have so much to be thankful for this Christmas season.

let's get some answers

it's the 21st century, for goodness sakes. shouldn't we be able to figure out exactly what's wrong and just fix it? I know I'm not the only one frustrated by the "watching and waiting" that happens so often in healthcare. there's obviously something not right with my little boy, and I'd like to know what it is and how you treat it. now.

Ivan had another bloody stool today - further proof that we have yet to get to the bottom of things.

he was seen by GI again today, and they seemed quite certain that it is some sort of nutritional intolerance that is causing Ivan's symptoms. they felt comfortable recommending that we start feeding Ivan again, this time using hypoallergenic formula. the GI doc said it was up to us and the neonatologist when we felt comfortable starting these feeds.

our neonatologist is not ready to pull the trigger yet and worries that we haven't done enough to find the true source of the bleeding. I have been interested in more aggressively pursuing answers for quite some time and am relieved to have a doctor who feels the same. side note: everyone in the NICU talks about how brilliant this particular doctor is, so he seems like a trustworthy guy to follow!

the next step to finding the answers we all so desperately want is a CT scan. best case scenario: the CT will show us exactly where the bleed is. knowing where the bleed is will give us a better chance of knowing what is causing it, which will give us a better chance of knowing how to treat it. mama is on board with all of that!

the search continues

more lab work, more imaging, more watching and waiting.

we have yet to get to the bottom of Ivan's obvious blood loss, but my boy is looking more like himself after the blood transfusion. yesterday was filled with lots of skin-to-skin time with mama in between the numerous tests the doctors are ordering to try and figure out how to best care for and treat our little one.

Ivan was seen by hematology and a gastroenterologist and will continue to be followed by them in addition to the neonatologist. we have been so impressed by the care and expertise here at Helen DeVos Children's Hospital and take great comfort in knowing that he's being looked after by the best of the best.

Ivan will be on antibiotics once again for 48 hours and feeds will be stopped for 5-7 days to give his belly a rest. once feedings resume, Ivan will most likely try a hypoallergenic formula to test the hypothesis that he is experiencing some nutritional intolerance.

we feel the power of the many prayers being lifted up on behalf of Ivan and our whole family and wholeheartedly thank you for them. the peace of Christ truly surpasses all understanding.

something isn't right

another call from the NICU about Ivan, this one at 1 o'clock in the morning.

anyone who knows our sweet son has noticed that he had been very pale for the last week or so. once a ruddy red like his brothers, now with very little color to speak of. I asked if it was just because he was sick and if his color would start returning and was told there was no reason for concern. his labs were good. he was tolerating feeds once again. he seemed to be perking back up.

until last night. and so a call came in at 1AM about our dear boy. one of our regular nurses was caring for our boys and said she watched as Ivan got more  pale and more lethargic as the night went on. she placed calls to the nurse practitioner and to the doctor because she knew something was not right. labs were done which showed that his hemoglobin and hematocrit were no longer stable. they had dropped drastically in a very short amount of time.

imaging was done to try and find a bleed somewhere in his body. antibiotics were restarted and feeds were once again stopped. our precious boy got yet another IV placed, this one so that he could receive a blood transfusion.

so here we sit. we are waiting for the results of the imaging that was done. we are comforting our dear son. we are praying for answers.

please join us as we pray.

stable

Throughout my entire pregnancy, 'stable' was a word we longed to hear at every appointment. "Stable fluid levels, stable weights..." Here we are once again, on the other side of things, finding relief in that word. It's been 24 hours since Ivan's incident, and he is stable. Stable labs, stable vitals, stable x-ray images.

At this point, this is the best we could hope for and we praise God for His provision and faithfulness.  We have suffered a setback as far as Ivan's timeline to come home, but it appears the infection was caught early enough that they can get on top of the NEC.

He will continue to receive antibiotics for the next 10 days and it is our prayer that he will continue to have good IV access throughout that course. If not, we will discuss having a PICC line put in. The thought of all these pokes in our son's future makes our hearts hurt, but we know it is necessary for our sweet boy's recovery.

Ivan and I were able to have some skin-to-skin time today which is better for healing than any antibiotics, if you ask me :)

Recovery. Stable. Music to this mama's ears

it's not "just reflux"

When both you and your husband miss a call from the NICU, you know you're in for a rough Saturday. 

Our dear little Ivan had a very hard night. There was blood in his stool and he required extensive stimulation to come out of an episode of bradycardia. His feedings were stopped, an IV was placed, an x-ray and an ultrasound were done, and our sweet little man, who we thought was just fussy with feedings or maybe had some reflux, was diagnosed with necrotizing enterocolitis. An infection of the intestines, it can be life threatening. 

It was caught early in our sweet son, and we thank God for that, but we are not out of the woods. Ivan will be on antibiotics for 7? 10? 14? days and will be getting regular x-rays (every 6 hours) to make sure that his intestines do not perforate. If this happens, he will require surgery.

His little body is once again hooked up to lots of machines by lots of wires which requires lots of pokes on his little body. He is lethargic and pale, which has his mama longing for the days of "fussy during feedings."

We beg for prayers on behalf of our Ivan.

our boys

December 13 was marked in the calendar. a scheduled c-section at 35 weeks on the dot. I couldn't help but think "that's a little optimistic" when our doctor gave us that date, but we were shooting for it nonetheless.

Well, our boys had other plans. They decided to choose their own birthdate, and I went into labor early morning on Saturday, November 26, 2016. John got me to the hospital in record time and I was in the OR 4.5 hours later.

We met our sons, Ivan John, William Lloyd, and Harrison Kenneth, at 11:28am, 11:29am, and 11:31am respectively. Ivan weighed in at 4 lbs 7 oz; William at 5 pounds even; and Harrison at 3 pounds 15 oz.

We are so overjoyed and blessed by their good health and impressive birth weights. Ivan and Harrison required a little help with their breathing from CPAP for just one day, but have been on room air like their brother William ever since.

All three are making steady gains as we allow ourselves to daydream about having them home with us. Our dear Ivan has been having some issues with feedings, getting fussy and looking very distressed and breaking mama's heart. We covet your prayers as the NICU doctors make adjustments and work to find a good balance that leaves him feeling more comfortable.

The outpouring of love from our family, friends, and community has left us speechless. We are so grateful to God for the amazing people He has placed in our lives and the lives of our sons, including a top notch NICU team.

Thank you thank you thank you for your gifts, meals, prayers, and overall love and support. It takes a village, am I right?