Tuesday morning (Day 5) started with a very helpful phone call from the neurologist
The rest of the day was rather uneventful with only a few hiccups.
The one major hiccup was that Henryk’s blood draw, for telling us where his phenobarbital levels are, showed that he was not yet up to the “therapeutic level”—which is about 23 (he was at 13). So we needed more phenobarbital.
Why did this happen? Probably because he spit out most of his initial dose! His original dose yesterday was 20mL. His maintenance dose that he took today was about 2 mL. This maintenance dose is what he will take daily for the first 6 months.
Since his level was low we gave him 10 additional mL to get his levels up. Hopefully tomorrow morning he will be at the 23 “therapeutic level.”
Also today Emily witnessed seizure like movements. We really want to get his phenobarbital in line, and we are praying it works and that he would not have any more seizures.
His blood work and cultures came back negative. And they already have stopped 1 of his 3 antibiotics.
The goal is that by tomorrow he can be done with the other two, have his phenobarbital checked, and then get discharged!
Please pray for God to use medicine to stop Henryk’s seizures and heal him.
- Had an early morning phone conversation with the neurologist
- The neurologist will be a long-term specialist for us who deals with pediatric stroke patients
- He gave us new insights into Henryk’s condition
- He also agrees that the strokes are done
- He doesn’t even remember a case where strokes continued after birth
- He also gave us a new potential cause of the strokes that seems to make sense. So far we’ve tried all kinds of blood tests. From Day 1 they tested Michael and Emily but all tests were clear. And all Henryk’s blood tests are clear.
- Well, the neurologist confirmed that he thinks the blood and the brain structure and the vessels were not the problem. Since there were multiple strokes he doesn’t think it was blood consistency or vessels, but rather a drop in blood pressure during pregnancy, like a decreased blood flow from placenta or umbilical cord. Something like that.
- This explanation seems to make most sense, and it also seems that this confirms that most likely the strokes are over
- The neurologist believes Henryk will face many challenges in life. Their aim is to get his care and therapy moving forward. Henryk will most likely face motor skill challenges (cerebral palsy) and speech challenges. Because there were strokes on both sides of the brain it will be more difficult to compensate.
- An MRI and hematology testing will take place around 1 month
- Until then we are to treat Henryk like a normal baby and love him like crazy
- Henryk will be on seizure medicine (phenobarbital) for 6 months
- If Sunday was a good day, Monday was a bad day.
- We arrived at the hospital thinking we would take Henryk home, but instead we found him hooked up to lots of monitors. It was a scary sight.
- Just before we had arrived Henryk had endured a seizure.
- The nurse practitioner saw it and immediately got the EEG monitoring going
- The EEG monitoring confirmed he had a seizure
- This then launched protocol for seizures
- Henryk was put on seizure medicine
- They tested him for infections via spinal tap and blood draws
- He was put on an IV
- We all had a very long day
- Henryk was a champ; he did awesome
- Henryk clinically showed all great signs; he eats a lot! He is very content, but not lethargic
- His bruising has gone away
- His head looks great
- No signs of hydrocephalus
- If Saturday was a “bad day,” then Sunday was a good day.
- We met with the doctors again and asked our thousand questions
- The main message we got was that the multiple strokes is indeed making his long term prognosis more difficult, but the doctors all agreed that the damage is complete. They do not believe strokes will continue outside the womb.
- But no one can tell us why they think this or what caused the multiple strokes
- We were relieved to get feedback, though that they thought to the best of their ability that the strokes were done now.
- The plan is to be discharged on Monday!
Yesterday (Saturday) was already very difficult with learning about Henryk’s condition.
An ultrasound of his head was performed at Children’s Hospital. It confirmed the original stroke at 20-24-weeks gestation, but also revealed evidence of another stroke that most likely occurred around 36-weeks gestation impacting the other side of his brain. We are fighting devastation and the fear that the strokes could continue. There is still no cause that the doctors can find.
Today we will meet with a neurosurgeon and a neurologist to discuss potential causes, tests, and treatments for our baby Hank.
We would appreciate prayer from you in all of these things, especially that the strokes would stop here.
We know that we are not hopeless and that our God is merciful. We are reminded of John 9:1–3:
As he passed by, he saw a man blind from birth. And his disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ Jesus answered, ‘It was not that this man sinned, or his parents, but that the works of God might be displayed in him.’
We also are leaning on Psalm 139 which details God’s complete knowledge, His constant presence, and His work in creating us.
We are sitting in Emily’s hospital room just after having fed, held, and cared for Henryk for his first day. We have a great new gift in our lives. We wantfor him, as Psalm 143:8 says, to hear in the morning of God’s steadfast love, and trust in Him. We pray that God would make known to Henryk the way he should go, and that Henryk would lift his soul to Jesus.
We appreciate everyone’s prayers and support.
Michael & Emily
- If Friday was a “good day”, Saturday was a “bad day”
- We took Henryk to get the first imaging of his head as a newborn
- They did a head ultrasound on him
- The results came back and shocked us again
- Hydrocephalus was not the issue
- What had appeared to be hydrocephalus on the right hemisphere actually presented itself that Henryk suffered a series of multiple strokes on the right hemisphere
- We were devastated and shed many, many tears
- Though clinically Henryk was presenting to be a perfect baby, his head imaging appeared to be looking worse.
- Our biggest concern, worry, fear was that he would continue to suffer more strokes and thus lead to a fatal stroke at some point in the future
We are overjoyed to announce that Henryk Otto Thiel was born Friday, July 27, at 8:40pm!
Delivery was hard on Emily and Henryk because his hand was stuck across his face, but it went well and he is resting in the Special Care Nursery despite a few bruises.
He weighs 7 lbs 14 oz and is 20.5 inches long.
He’s a very, very sweet boy who is already nursing and sleeping like a pro.
He has quickly captured our hearts with his dear little face.
- 20 week ultrasound
- Find out its a boy
- No name picked out
- Ultrasound looked perfect
- Schedule a 24 week ultrasound because they couldn’t get a certain image of his heart androtovol says they needed that picture
April 6, 2012 (Good Friday) – Morning
- Go in for 24 week ultrasound
- Take another full scan of baby
- Sonographer finds abnormal imaging of baby’s left hemisphere of brain
- We learn news and go to hospital to meet with a specialist
- Perinatal specialist confirms the mornings findings and agrees that he is concerned
- We are admitted to perinatal group
- After an all day barrage of new findings and appointments we go home and we name him Henryk so that people can start praying for him by name
- We were in shock
- First appointment at perinatal clinic and perform a lengthy level 2 ultrasound
- We were extremely tense for this meeting
- We had so many questions
- Confirmed that a stroke occurred on left hemisphere
- Right hemisphere looks normal
- Many appointments
- Did research
- Asked lots of questions
- Came to grips with Henryk’s condition and the challenges he may face long term
- Dr says there are enlarged ventricles in the right hemisphere
- Dr says this is most likely hydrocephalus
- Dr confirms no bleeding; also confirms blood flow in brain
- We were again set into shock as we were not anticipating this
- Meet with dr to learn about hydrocephalus and the use of shunts
- Dr puts us slightly at ease in that he did not think we would need a shunt
- Dr also confirmed that he thought Henryk would be born stable