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?

thank God and Boost

here we are at 25 weeks. the internet tells me this is a huge milestone because of the 'viability' of our boys. yes, they are tiny, but they are strong and beautifully formed and (with the help of the NICU) could survive being born this early. of course that is not our goal or our hope at this time, but it does make mama feel a little better knowing that life outside of the womb is now officially doable. (my goal is to carry the boys to at least 33 weeks.)

at the 24 week ultrasound we found that baby A (I can't wait to tell y'all their names) had an increase in amniotic fluid in his sac. he's always had more than his brothers, but this jump was enough to cause some concern. the increase in fluid could be nothing or it could be a huge problem - only time would tell. my mom and I (can't wait till J is in Michigan with us) were briefed on the treatment option that may be necessary if the fluid kept rising or if any of the babies showed distress because of the high fluid level, and the bi-weekly ultrasounds were changed to weekly. monitoring is key, and I am happy to oblige. I happen to love seeing those little buggers as much as possible anyways. my mom and I both noted that there was not a hint of worry or concern in my midwife's voice as she discussed baby A's fluid levels or the possibility of having fluid tapped at some point. I cannot sing the praises of my MFM office more, you guys. we left feeling calm, cautious, and confident in both God's sovereignty and the badass-ness of our medical team.

week 25 rolled around and it was time for another ultrasound. this was yesterday. my sister joined me this time (love my family), and the ultrasound tech immediately went to work measuring the largest pocket of fluid in baby A's sac. sighs of relief and "thank you, Jesus" could be heard down every hall of the doctors' office. Baby A's fluid was back down to where it had been resting stably for the many weeks prior, and his brothers' fluid levels were just as consistent as ever. strong heartbeats, visible bladders, and strong blood flow were noted for each of our sons.

since our TTTS scare at 18 weeks, I have been chugging Boost like it's going off the market. I'm sure their stock has sky rocketed and Amazon is wondering why they are shipping 24 packs to Michigan every two weeks. drinking a high protein supplement is one of the things the TTTS Foundation instructs mamas to do when TTTS is a concern. even though we've been told by my MFM that there are no signs of TTTS on our radar, I haven't let up on my Boost-chugging.

and so, with this good news carrying us up to cloud 9 we say: thank God and thank Boost.

TTTS

there is a lot of ground to cover because it has been quite some time since I last wrote. instead of one, long blog post, I think I will write a few semi-long posts. starting with the heavy hitter first. 

TTTS or twin-to-twin transfusion syndrome, or in our case, triplet-to-triplet. TTTS is a scary, serious, and sometimes fatal syndrome that can occur when two or more babies share a placenta. per my MFM (maternal fetal medicine) doctor, it occurs in about 15% of cases with twins and comparable statistics with triplets. because of the shared placenta, there is shared blood flow. TTTS is when, due to no fault of his own, one baby starts "stealing" from another (or two other) babes. this is detrimental to all babies involved. both too much blood flow (to the recipient babe) and not enough blood flow (to the donor babe(s)) can cause heart failure and other fatal health issues. signs of TTTS are: size of babies and amniotic fluid levels in the babies' sacs. these are the two markers that we pay special attention to at our bi-weekly ultrasounds.

at 18 weeks I had a routine ultrasound. at this point ultrasounds and doctor appointments were becoming common place, so I got cocky and went to this one alone. it was in the middle of the day, and John had work obligations, but neither of us gave it a second thought that I would handle this one solo.

the MFM office I was going to in North Carolina is in a time of transition. one of the doctors had retired, so there was a series of locums coming in to cover for a couple weeks at a time. we had had good luck with each of the locums we had seen before, but this day was different. 

the doctor walked in after my ultrasound and got right to the point. in a blur of words, I managed to pick up on the fact that she was extremely concerned about TTTS. the phrase "your children dying" was used way too many times (any amount of times over 0 is too many times; this chick probably said it 5-10 times), and the overall theme was DOOM AND GLOOM. she briefly mentioned the two types of treatment for TTTS, but said "I'm not aware of any hospital in the country that would do it on triplets." She also assured me that there was "nothing I could do to prevent this or help in any way."

I rushed home after the appointment and fell apart in my husband's arms. I felt hopeless, confused, lost, angry. we had done our research on TTTS early in my pregnancy and knew the basics, but never expected a conversation with a doctor about TTTS to go SO poorly. 

John got straight to work doing as much research as possible. it took one google search for him to find a list of over 200 hospitals who do the laser ablation surgery (the primary treatment for TTTS) on triplets, one of which is in Ann Arbor, just 2 hours from where we will be living in Michigan. this was our first clue that perhaps the doctor didn't know what the heck she was talking about. 

I found the TTTS Foundation online and immediately started printing out their checklists and articles and e-mailed the founder of the Foundation. I heard back from her within an hour in an e-mail where she offered love, support, information, and prayers. she sent me an evidence-based article showing the positive impact that drinking 3-4 Boosts or Ensures a day and horizontal rest can have on fending off TTTS. you better believe that John was at the grocery store within minutes stocking up on Boost while I laid on the couch continuing our research.

it was a hellish two weeks until our next appointment. our prayer warriors were in full force, and I was guzzling Boost like it was going out of style. 

at our 20 week appointment John had the checklist of things to look for from the TTTS Foundation out as we paid special attention to the weights of our boys and the amount of fluid each had in his sac. after the ultrasound we were fortunate to meet with the primary doctor in our office, not a locum. and boy oh boy was she amazing. she took at least an hour to sit with us and explain every aspect of the ultrasound and the health of our boys. she drew a chart showing the different measurements from 18 weeks compared to the measurements at 20 weeks and impressed on us the importance of STABILITY. if the measurements remain stable, we have reason to rejoice. and at 20 weeks, every measurement was stable. and so we rejoiced.

leaving that appointment we were filled with hope. I have since moved to Michigan and had my first appointment with my new MFM this week at 22 weeks. my beautiful mom and sister sat through the 2 hour ultrasound and the 1 hour meeting with the doctor with me as we scribbled notes while receiving yet another great report. this one was even better than we could have hoped for. 

my new doctor, Dr C we'll call him, is a dream. he is down to earth, straight forward, kind, compassionate, and super smart. long story short, he doesn't really see any signs of TTTS at all and is very impressed with the boys and with me and how well we are doing. if the boys weren't in utero I'm sure they would have been grinning like an idiot just like I was. you hear that boys? we're doing great! we are kicking butt at this whole high risk pregnancy thing. gloom and doom doctor can suck it.

of course TTTS remains a concern until these little men are born, but we are feeling equipped with information, a stellar team, and treatment options if need be. as if in celebration, the boys have started moving and kicking like crazy.  

each kick makes me grin like an idiot as I daydream about having these little boys in my arms. I thank God for His faithfulness, His provision, His sovereignty. He had us in His hands all along and will never stop ordaining our steps in His great wisdom. can't wait to teach my little guys all about this great God who knit them perfectly together in my womb. 

"It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8

14 weeks

how far along? 14 weeks with 3 little gifts.

maternity clothes? oh yes, especially in the pants department. loose dresses are a favorite. waist bands are not my friend.

quality of sleep: when not interrupted by bathroom breaks, very good. dreams are vivid and can be quite strange, however, which can leave me feeling a little disconcerted when I wake.

best moment this week: going public! such a relief to have this (huge) secret out in the open. the love and support have been amazing.

gender: too soon to tell, but we are eagerly awaiting this discovery.

movement: can't wait. 3 active babes - what will that even feel like?

food cravings/aversions: my PB&J obsession from the first trimester is long gone. still gulping down gallons of apple juice. cereal is always sure to please. and I can't get enough red meat. oh, and yesterday after work I snacked on alternating bites of dill pickle and peach slices, ha!

how’s mama? energy is up, praise the Lord. nausea and vomiting took a few days off, but I am back to my routine morning throw up. 

what i am looking forward to: finding out gender. moving back to Michigan to share this joyous burden with our families.

fruit/veggie comparison: I have 3 little lemons in there.

weight gain/loss: working hard on gaining! not an easy task with the regular vomiting + food aversions + the belly that already feels filled to the brim.

 

three heartbeats

our journey to triplets was not an easy one, which is fitting seeing as how not-easy life with triplets is bound to be (pregnancy already is the opposite of easy).

it was almost 2 years ago that I told my rheumatologist, the beloved Dr. J, that I wanted to be a mom. after a series of instructions on what meds to stop, what meds to wean, and when I'd be in the "safe zone," the process had officially begun. I thought those 3 months while waiting for my body to rid myself of the toxic meds were long, but I had no idea what laid ahead.

month after month of negative pregnancy tests with no apparent reason until a joyous day last September when I finally saw two lines on that dang stick. FINALLY. it was an early morning pee, so poor John got woken up my a giddy wife at 6:30 in the morning while on vacation in Michigan. I believe his exact words were "Shit just got real" and I think that means he was excited. FINALLY. the weeks ticked by as we prepared for our move to North Carolina and kept this happy secret close to our hearts. we prepared to tell our friends and family the news right before moving so we could do it in person, albeit a little early. FINALLY.

then came the pink streak on the toilet paper in late October. I think I knew immediately. a trip to the emergency department and an ultrasound at 9 weeks 2 days showed a 6 week old babe with no heart beat.

no one tells you how incredibly painful miscarrying is. seemingly never ending waves of pain that caused me to yell out "I just need a break, God, please!" as I lie sweating and screaming on my parents' living room floor. as my sister said, all of the labor pains and none of the resulting joy. what a cruel joke. what a sickening pain. what a life-altering blow.

on a walk around my parents' neighborhood a well-meaning neighbor told me not to "do anything stupid." evidently I looked like I was about to off myself.

in late November we suffered another loss, that of my sweet and special niece. another life-altering blow. the story of Ellie is not mine to tell, but I will say that she changed all who knew her. the absence of her still leaves me feeling gutted.

in early April we suffered yet another loss, that of my larger than life dad. the glue that held our family together. the hits just kept on coming. seemingly never ending waves of pain that once again caused me to yell out "I just need a break, God, please!"

my dad was the best grandpa. my siblings could regale you with hours of stories of how my dad stepped up to the plate, lightened the mood, provided words of wisdom, and did it all in the name and love of Jesus. one of the most heartbreaking realizations I had in the hours following his death was that he would never meet my children and that they would never meet him. what a horrible loss. he was the best grandpa and the best father.

and then, still in a heavy haze of grief, the two lines showed up on the dang stick again. and then on another stick. and then a stick that clearly said 'Pregnant' on a little digital screen for good measure. this time there was no secret to keep. I called my mom, my sister, and my brother immediately and told them the news. if we lost this baby too, I wanted them with me every step of the way this time.

a call to my doc resulted in a 6 week ultrasound. what were we going to see? what does a fetal heat beat even look like? we hadn't made it this far last time; this was uncharted territory, and I was an unhealthy mix of excited and terrified.

so that's what a 6 week old baby looks like! that's what a heart beat looks! I must be a quick learner because even through my tears of joy I spotted baby #2 pretty quickly. I shot a look at John and asked "Do you see that? That's your fault, you know" (twins run in his family). OK, we're having twins! this is happening!

the ultrasound tech said something about taking a look at my ovaries and suddenly I wished I wasn't such a quick learner. and that's when shit actually got real. baby #3. [insert legs shaking uncontrollably, John turning white as a sheet, ultrasound techs rushing a garbage can to said pale husband, and probably a string of expletives because that's how I usually roll but honestly don't remember much of what followed.] three heartbeats.

another ultrasound tech to confirm, my doc to re-confirm, and there we are. parents of triplets. the subtitle of our pregnancy announcement is definitely: Be careful what you wish for.