Our sweet baby boy is two weeks old today. The past week has been incredibly difficult. It has been a trail of tears.
From our last post at age one-week, for the next couple days we as a family started to settle in to life with two kids. It was fun and challenging. Henryk was doing great eating many ounces at each feeding and growing quickly. Our Monday appointment with the pediatrician went great.
On Tuesday we had an EEG to check on the seizures. There was no seizure activity. There were abnormal brain waves, but typical of a stroke patient.
Tuesday night Henryk began vomiting after eating. Emily tried cutting back on feeding and slowly increasing two times over the next 24 hours but it didn’t help. On Wednesday night Henryk got sick again and we came to the ER at midnight. This was a long process and when it was clear this was not a straightforward assessment they admitted us, around 7:00am Thursday morning.
We were admitted and have been at Children’s Hospital since. Henryk is increasingly unable to keep down decreasing amounts of food. Us and the team of doctors have worked through the various causes of the vomiting and done many tests. As usual, Henryk passes almost every test they throw at him. The only test he consistenly fails are any bain imaging tests. We don’t feel this is a “bug” because his throwing up was rather consistent once it started and he showed no signs of any other flu-like symptoms. In fact once he would throw up, he would be hungry and ready to eat, and never fussy.
Although they did not think the vomiting was brain related, since we were at the hospital and looking for answres the neurologist decided to sedate Henryk and do the brain MRI that had been planned for the future.
The results of the MRI were shocking to everyone. Even the doctors were not expecting the amount of damage in his brain and the severe lack of brain tissue found. The neurologist said that Henryk will be severely disabled, unable to form relationships, speak, or move. His life expectancy is unknown. Truly the MRI was shocking, and this comes after months of coming to grips with the cysts that we knew about. Again, we don’t think he has any more strokes, this is still the aftermath of the issues Henryk dealt with while enutero.
We feel as though we are living out a nightmare. It is unbelievable to us. Yet we know that God is here. Even when we do not feel it, we know God has sent his angels to be at our side and help us walk this tough road.
The doctors think that we need to do brain surgery to put a shunt in Henryk’s brain to relieve pressure that is being put on the tissue by extra fluid. Although there is no guarantee that it will end the vomiting, it is most likely necessary anyway, since Henryk’s head is growing in size and showing signs of being under pressure. The neurosurgeon will let us know tomorrow.
In the meantime we sit with our beautiful, amazing boy and gaze at how he has Emily’s eyes and Michael’s nose. He has long fingers and only ever cries when he gets cold. He is so tough and such a snuggler. We are heart broken that he cannot keep food down and at a loss for why. His organs are perfect, his body is perfect, he is so healthy in so many ways, yet it is clear to us now, he doesn’t have much brain tissue.
On another note, we have been struggling to know how to balance time with both kids. While we feel unable to leave Henryk, we know Lily is confused even though we have amazing friends and family who have been protecting and loving her. We got the chance to sit down and have a serious talk with her today. We Told her Henryk is really sick and we need to take care of him because we love them both. We asked her to be our strong girl. She flexed her muscles and started singing “Jesus Loves Me” because in the song it says “We are weak but He is strong”. She ministered greatly to us in that moment. We had a great interaction with Lily filled with some serious talk and also a lot of fun and laughter.
We keep whispering into Henryk’s ears that we are very proud of him, and that this wasn’t his fault, and we share stories with him about how awesome our God is.
Isaiah 43:1-3. But now thus says the LORD,
he who created you, O Jacob,
he who formed you, O Israel:
“Fear not, for I have redeemed you;
I have called you by name, you are mine.
When you pass through the waters, I will be with you;
and through the rivers, they shall not overwhelm you;
when you walk through fire you shall not be burned,
and the flame shall not consume you.
For I am the LORD your God,
the Holy One of Israel, your Savior.