Leaps and Bounds

William was able to visit yesterday! He is our sensitive soul who has an extra special love for his baby brother. He asked me a few days ago if Henry was going to die. At that time, I didn't have an answer for him. He knows enough about Sydney to know that we have had such a loss before and that babies can die. Perhaps this contributed to the immense anxiety he has experienced in the past two weeks. I was so thankful that Henry was well enough yesterday (and looked like himself enough) for William to see him and know that he is getting better.

The big news is that Henry came off the ventilator today! I can hardly believe it. Just one week ago, we were bracing ourselves for the worst. The ugly words were "pneumonia, sepsis, very sick baby, can't promise you anything, very very ill." Today we are hearing new words like "fabulous, amazing, improvement, good numbers, extubate." I can't even begin to describe our emotions and thankfulness. Last week we prayed for a miracle. Today I finally believe we have witnessed one.

Here is our miracle baby looking a lot more like himself:

Henry's fight isn't over, but we do believe that he is winning!!  Please keep praying for him and join us in thanking God for the huge steps he has taken this week.

Not Me

I open my eyes to darkness and my confusion is replaced by a reluctant awareness of where I am. The Connelly Center. Room 4. Far removed from the bustling noises and lights of the hospital. A separate, silent wing behind double doors which lead to a large, dark sitting room full of sofas. Beyond that is a locked door leading to the five private rooms given to those of us who would otherwise not sleep for days or weeks on end.

It's so quiet that I couldn't handle it last week and chose to go back to the comforting beeps and ventilator breaths of Henry's room. When Scott arrived from Bolivia, I was finally able to rest here. Now we take turns, night after night, so that one of us can sleep without interruption.

Tonight is my turn. But it's 2 am as the phone rings down the hall and I'm suddenly wide awake. I think of the other four and my breath catches as I realize that no one is answering and it might be for me. Perhaps all of us are hearing what I hear in my head: "Not me, not me, not me . . . ." There are no voices as the phone stops ringing, but a door opens at the end of the hallway and I wonder if it's the guard who mans this wing, coming to rouse one of us. "Not me, not me, not me . . . " I hear a soft knock, but not on my door.

(Written at 3 am because I couldn't sleep)

Does it sound too dramatic? It was.

This place . . . we have seen scenes here I wish I had never seen. I was able to block them out the first week . . . the other families who are going through their own worst days too. But this week, I see them. The couple standing outside the ER screaming and placing blame on each other. The young boy with no hair being wheeled into the hospital, recognizing where he is, becoming hysterical and terrified as his parents try to talk him into letting them make the pain go away. The mother sobbing in the waiting area of the PICU as her own mother tries to comfort her. I saw that woman and I've been that woman.

I will not miss this place.

Big Step and Baby Steps

Yesterday was a bigger day than usual. After I posted the "Day 12" blog, the doctors came for rounds and decided to switch Henry back to the ventilator after all. We were surprised, but have gained such a confidence in the Attending Physician that we felt fine about the decision. And it was a good one! Henry was switched back to the vent yesterday morning and was able to come off the paralytic medication at the same time. We hadn't realized we would see him wake up from his medical "slumber" yesterday, so it was really exciting when he began to open his eyes and realize we were there. He focused on each of us and even started to try to cry when he made eye contact (it was SO heartbreaking . . . especially as he struggled with the ventilator while crying . . . because we can't pick him up to comfort him).

He has been alert for long intervals since then, and it has been a joy to catch a glimpse of our Henry behind all the wires, tubes and swelling. He is losing some of the swelling, especially in his face, but his body has a long way to go. He weighs an extra 3 kilos right now, which is over 30% of his body weight. The lasix is helping him lose the edema, but it's not a quick process.

We were on a bit of a high yesterday as such a BIG step was taken, and I have to admit I've hit a low today. It felt like the pace was picking up and giving us hope yesterday, which all came to a screeching halt as not much has changed today, but I do remind myself that no news is still good news at this stage. We're back to baby steps today, but we are so thankful that they are in the right direction.

Day 12

Henry had another uneventful night for the most part. Yesterday morning, the doctors were hopeful that we would be able to transition him back to the ventilator (from the oscillator), but he had some negative reactions to being suctioned and didn't recover fully (yet) for them to make the move. It makes me laugh a little . . . Last week when we were here and Henry was awake and feisty, they would try to suction his nose and he would arch back and put up quite a fight. It always took at least two people to hold him down. I took it as a great sign of the fight inside my usually mild-mannered little man! As much as I wanted to see him transition in a step towards breathing on his own last night, I LOVE the evidence that he still hates suctioning and has that fighting streak in him (even when he is fully sedated and paralyzed by meds). We just need to convince him that it's for his own good I guess. ;) I'm also happy that a slight change in his numbers put the plan on pause. The nurses and doctors are quick to react and are so careful to understand what caused a change and how to even things out again. It's amazing. The nurses work so hard, which helps us to rest when we can.

Scott and I are taking turns sleeping in a special parent sleep room the hospital provides. There are only five of these rooms and they are given to parents of the most critically ill patients. While I am grateful for the quiet dark space and bed, I get a pit in my stomach when I consider how big this hospital is and yet we are always given a key.

We continue to be amazed by the generous ways people are reaching out to us to help with meals, play dates for our big boys, and other needs. We can feel the prayers surrounding us and are in awe when people who don't even know us tell us they are fasting and praying for our boy. We definitely do not feel alone.

Our big boys are on our minds a lot. We were able to visit them at home last night for a while and give them their baths and put them to bed. It was wonderful to spend time with them, but being in my house with evidence of Henry in every room was almost unbearable. His pack and play, high chair, and toys made me long for our normal life back. Some of you have mentioned my post from January (Boring, In a Good Way) and how striking it is that we are in such a different place.

Many people have asked if Henry's Down Syndrome has contributed to this situation in any way. It's a great question and not one that doctors have been able to answer. Last week, before he was in the PICU, I asked it many times and the doctors there brushed it off (as they brushed off many concerns) and simply said no. But his PICU doctors seem to think that it has contributed to the extremity of his reaction. The doctor who is the "main boss" (according to others here) is a man of great knowledge and experience, and he told me he has seen many other kids with T21 who have had serious reactions to common viruses. He believes this is probably the case for Henry. Surprisingly, they have tested for numerous viruses and only one has been positive: rhinovirus. Sound familiar? It's the common cold. They have not ruled out that there may be another virus on top of that, but nothing else has shown itself in the blood tests, and the PICU doctors have said that some kids actually just have horrible reactions to certain strains of rhinovirus. They told me they had many kids this winter who had colds and ended up in the PICU with life-threatening pneumonia, and that some of those kids had Down Syndrome.

We are waiting for the doctors to do their rounds this morning. They usually start with Henry, so they should be here soon. We are thankful to be asked to stand in on rounds and participate.

To leave off on a positive note, one of the residents who has been involved with Henry's care from Day 4 until now had the weekend off. She walked in this morning to check on him as soon as she arrived and said, "Wow, he is doing great compared to where we were on Friday." I have to hold on to that and hope that this trajectory will continue.

Thank you for all of your prayers and the many ways you are helping us.

Day 11

Henry had a good night last night. I am beginning to feel like I need to come up with a new way to say that. I don't want to mislead anyone with the word "good." It's so very relative. Our new definition of "good" is that nothing scary happened last night. He doesn't appear to be declining. He is stable and showing very small improvements.

A clear picture of Henry is that he is on an oscillator, which has taken over the job of breathing for him so that his body can rest while it fights off the numerous infections which are threatening his life. He is heavily sedated and often needs additional medicine to be paralyzed because sometimes he starts to move around a bit and they have noticed changes in his vitals when this happens. We really need for him to just rest peacefully as the many treatments (antibiotics, blood transfusions, platelets, etc) do their work.

Our sweet boy does not look like himself right now. His whole body is swollen from the medications, and while they can give him (and have given) some lasix for this, it's a delicate balance and they have to watch his blood pressure, heart rate, oxygen saturation, ventilation, etc. One affects the other, which affects the other and so on. Sort of like "If You Give a Pig a Pancake," but not nearly as much fun.

The diagnosis of what caused all this (a virus is suspected but not confirmed) is still a mystery and may always be. Last week, diagnosis seemed important. Now, as I watch my baby fight for his life, I don't care what the initial cause may have been. I'm sure I'll care again later, but for now I just want my Henry back.

Scott and I feel so loved and truly appreciate all of the prayers and concern from our dear friends and family and what feels like thousands of others who are lifting us up.

Prayer Requests:
* Continued improvement. We are taking baby steps, but they are in the right direction.
* Our older boys, who haven't seen us much and are also very worried about the brother they adore.
* Strength and endurance for us and for my mom who is watching the kids so much of the time while she is dealing with the emotional toll as well.

Please Pray for our Boy

I am sending out an urgent request for everyone who still checks this blog to PLEASE PRAY FOR HENRY! He was admitted to the hospital 9 days ago for symptoms of dehydration due to vomiting. Fever and a rash persisted and worsened over the course of a week. By day six, Henry was fighting for his life. He is in the PICU and continues to fight. There is a raging infection in his lungs and his blood, in addition to a staph infection in his trachea. Henry is only 9 months old. He is the joy of our lives. His brothers adore him. We are devastated at the thought of losing our precious boy. PLEASE PRAY! Last night, Henry showed some small improvements. We are clinging to hope that this might mean that he is on the road to recovery, but the doctors are being very cautious and have reminded us often that he is not out of the woods.

I will try to update here if people seem to be reading the blog.

The photo above was taken about 24 hours before we ended up in the ER.

New Mama

Please, please go read this beautifully written (and photographed) blog about a new Mom of a child with Down Syndrome:

http://enjoyingthesmallthings.blogspot.com/2010/01/nella-cordelia-birth-story.html