Friday, February 3, 2017

mystery man

There is not much to report on our Ivan because much remains unknown. His labs still show us that there's an infection of some sort, but his blood and urine cultures didn't grow anything so the source of the infection isn't clear. We are running on the theory that it's a lingering UTI, so he is back on antibiotics for that. Labs are being drawn daily to ensure the antibiotics are doing their thing.

In the mean time Ivan has had some periods of strange-for-him fussiness. Really upset for no clear reason, which is torture for his mama and daddy to witness. In a moment of grasping at straws, we returned to the hypothesis that Ivan may have a nutritional intolerance. So he has been switched to a specialized formula that is hypoallergenic. It may be the formula or it may just be chance, but the periods of unexplained fussiness have disappeared. His fussiness has been extremely appropriate and mostly due to being hungry. A little boy with an appetite makes for one happy mama!

He seems more like himself these days. Very tired, which is to be expected if he's fighting off an infection, but waking up to eat and eating pretty well most of the time. But overall we are still feeling that the reason for Ivan's continued hospitalization is a mystery. We know he's not well, but his illness is largely unidentifed. Every mother's dream, am I right? (insert eye roll) His hemangiomas are still being treated and are stable.

Shout out to grandmas who are willing to drop everything and baby-sit William and Harrison so that mom and dad can hold Ivan when he's not feeling well.

Shout out to all of you who are praying and supporting us during this time. We can't thank you enough.

Monday, January 30, 2017

can't catch a break (for real)

Oh, I already titled a post 'can't catch a break?' My bad. Must just be the story of our lives these days.

I should probably wait a few hours - or days - to write this because I'm feeling pretty emotional about the whole thing. But hey, I'm a mom of triplets who spends most of her day in the NICU, so I'm allowed to be emotional.

We get asked about Ivan's discharge on the regular. I wrote in a previous post about how this is one of the hardest questions to be asked as a NICU parent because everything is just so friggin UNKNOWN. Also, the NICU is a rollercoaster by definition and even when things ARE known, they don't always go according to plan.

So we don't talk about discharge. Until we did. Even the docs were talking about it. Excitement was building, and this mama's heart was filled with hope. We had treated the UTI and Ivan's intake was increasing every day. The PICC line and feeding tube came out, and he was almost to full feeds when BAM. Labs came back funky. Another infection. Oh, and let's throw in some odd findings on the ultrasound of his kidneys too. Oh, and weight loss the last two nights in a row.

I don't think I need to explain why I'm emotional.

So we are back on antibiotics while we wait for the million labs that we're drawn to come back and tell us exactly what kind of infection we're dealing with. Maybe just another UTI. Hopefully nothing having to do with his PICC removal. Nephrology will be getting on board to deal with the kidney mystery. And we've moved to "ad lib on demand" feeding, meaning Ivan can eat whenever he wants and have as much as he wants. So far he's loving that and eating like a champ.

Looking for someone bold enough to sneak a 6-pack up to the NICU. Asking for a friend...

Monday, January 23, 2017

can't catch a break

we took a couple steps back with our darling Ivan yesterday. out of the blue, he decided he didn't want to eat. because this is so unlike him, it was decided that some labs would be drawn to see what, if anything, might be going on to cause this disinterest in food. the labs showed that Ivan definitely had an infection, but the type and source were unknown. more labs were drawn and tests done to try and determine this, and Ivan was found to have a UTI. this news actually came as a great relief because there was concern that his PICC line was infected, which would have been very bad. we can handle a pesky UTI!

unfortunately Ivan's hemoglobin and hematocrit have not been going up as hoped. we were waiting for his body to kick in the red blood cell production, but that just wasn't happening. so when I got into the hospital this morning I was told the docs were recommending another blood transfusion. this is Ivan's third. essentially we were just asking too much of Ivan to fight off an infection, eat, and make new red blood cells. a transfusion is a clear cut way that we can give him a leg up and help him feel better. it is our hope and prayer that the transfusion will perk him up and he will just soar.

in the meantime we wait for the antibiotics to kick the UTI's butt, we let Ivan rest as much as possible, and we offer him small amounts of milk as he starts to show the motivation to eat again.

as John said, he's getting so much ice cream when he gets home.

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.