Saturday, January 14, 2017

dare we hope?

I suppose it's time for an update. Things have been going so well with Ivan the last week or so, but, to be honest, I'm nervous about getting ahead of ourselves. Dare we hope? Could this be it? Are we finally on top of it?

It all started on the 5th when Ivan had his first normal stool in WEEKS. That was our go-ahead to restart feeds with breastmilk. We eased Ivan in with a whopping 5mls, which he handled beautifully. Then to 15mls, then 20mls, and then another normal poo. And another. And another. And another. We're talking ZERO trace of blood, normal baby poop. You guys. My relationship with poo has changed a lot since becoming a mother, but this time it actually made me cry. Weeping tears of joy because of poop - that's my life now! And I wouldn't change a thing :)

So, it appears that the medication is doing its job to stabilize the hemangioma in Ivan's intestine. He is currently able to eat real food (not just the TPN that's been giving him nutrition via IV) without aggravating the hemangioma and causing bleeding.

There you have it. Good news. GREAT news. Have we done it? Dare we hope that we're finally on top of what has been ailing my sweet son? With great caution, we hope. With great certainty, we have peace in the faithfulness and provision of our good God.


“May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.” || Romans‬ ‭15:13‬

Friday, January 6, 2017

hemangiomas are stupid (part 2)

The ultrasound yesterday showed that the internal hemangioma had grown from 3.1cm to 4.7cm. I cringe at those numbers because of how small our little buddy is - 4cm could be his entire intestine for all I know! Hemangiomas are stupid, and I'm sick of them.

Once again, this does not mean that the treatment isn't working. It just means that the hemangioma is running its natural course, which is to grow, until the propranolol can kick it into gear and stop the growth. We need the propranolol to be at its full dosage to work its magic, but that takes time.

Something that can help expedite that process is steroids. After speaking with the world leader in internal hemangiomas (!!!) in Boston, our team at HDVCH has decided to do a 10 day course of steroids to help with inflammation and to help us get to the full dose of propranolol faster. Propranolol can lower blood pressure, so that's why you have to ease into the dosing. Steroids can raise blood pressure, so the idea is that they'll "even each other out" so that blood pressure isn't a hindrance to getting the full dose of propranolol on board. Hopefully that makes sense. I feel like I just typed 'propranolol' and 'full dose' about 473 times. Ivan is also on an antacid now to help calm his belly and ward off any GI issues.

The million dollar question when you have a babe in the NICU is, "Do you have an idea when he'll go home?" The short answer: no.

We have a plan, we have treatments, we have a team working around the clock to do what's best for Ivan, but we do not know how long it will take for everything to work the way it should to bring our boy to a point where he would be safe and comfortable at home. And my mama heart breaks with this unknown timeline and this distance between us. Believe me, when we have a discharge date I will shout it from the mountain tops. Or at least on Facebook. 

Thanks for your love, support, prayers. We know that our good God has ordained each one of these steps and knows exactly when Ivan will be at home with us and his brothers. He knows what's up, so it's ok that I don't.

Thursday, January 5, 2017

hemangiomas are stupid

Another step back today. Our dear Ivan was restarted on feeds about 48 hours ago - a very modest 5 ml of breast milk. We were waiting for a BM to see how his body was tolerating the reintroduction of food, because from the outside he seemed to be tolerating it wonderfully. Belly was soft and he wasn't fussy or in any distress.

The stool finally appeared this morning, and there was blood in it. (Insert expletive here.) So there's our answer. The hypothesis is that his internal hemangioma must still be growing. We were hoping to cut the growth off at the pass with the propranolol, but we must not have gotten it on board soon enough.

This is not to say that the treatment isn't working. It just took a while to get the full dosage of the propranolol into his system, and in that time the hemangioma was continuing to run its natural course - which is to grow.

Ivan's hematocrit isn't low enough to require a transfusion, but that's where we'll be headed if it continues to trend down. I hate seeing him so pale, so I welcome a transfusion if it would help him feel better.

He just got another ultrasound of his belly to see what, if any, changes there are in the hemangioma. GI is also being consulted to see if Ivan is big enough to have a scope done. This would give us the clearest picture of the hemangioma and allow us to continue with treatment with our eyes even more open. Ivan is growing like a weed, even though his only nutrition is coming from TPN, but he is still pretty tiny, which may make a scope too dangerous to perform.

We are crying out to the Great Physician and asking Him to prepare a clear and direct path to healing for our darling son. Please join us in that plea.

Saturday, December 24, 2016

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.

Thursday, December 22, 2016

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!



Wednesday, December 21, 2016

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.



Tuesday, December 20, 2016

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.