May 7 2010

Isaac Update – May 7, 2010

Angie and I talked to the orthopedic surgeon today. He said that “if you are going to have a spinal column abnormality, this is the one that you want.” We will have to monitor it, especially through his first two years and his teenage years where the two major growth spurts occur. We will also have to get Isaac a renal ultrasound and have a heart person listen to his heart at some point in the next two weeks, and set up a follow-up appointment with him for sometime later. I would note that I’ve asked the docs about his urine output, both yesterday and today, and they have said that it’s normal.

The fused ribs formed due to the fact that one side of the vertebrae did not form, so there was no place for it to join to the column. Therefore, the vertebrae that would have connected to the missing side of the vertebrae has, instead, joined the vertebrae above. The doctor doesn’t think this will be an issue. If at some point the hemivertebrae leads to significant curvature, he would do a small fusion rather than trying to remove the hemivertebrae, as this is the wisest approach at the place in the column where it’s located. My takeaway from today’s meeting was that the doctor was trying to impress the idea upon us that we are in a (relatively) good place, and that the hemivertebrae can be dealt with successfully. This is a relief.

Isaac nursed twice today. Angie has been doing a wonderful job pumping. She still has not caught up on her sleep, so there will be some feedings missed. The docs wanted to know whether we would rather they insert a new IV (assuming the one that is in fails at some point), or supplement with formula. We indicated that we’d rather go the formula route. Isaacs been stuck enough.

I told the nurse responsible for Isaac that I’d bought a two week parking pass, and asked her if that would be enough to get us to the point where he is released to come home. She said “maybe”. So, he’ll be in the NICU for a bit. He will, as all babies do, loose some weight over the course of the next couple of days. My assumption is that they will want to make sure that he’s gaining weight solely through breast feeding before he’s released.

Isaac’s early arrival means that we’ll have to get some things organized at home earlier than we’d planned. The most pressing issue is that Gracie now sleeps (or at least starts to sleep) in her crib. This will be where Isaac sleeps when he comes home. I’m now washing everything that needs to be cleaned so that Gracie can begin to sleep in her room upstairs. My plan is to try to get her acclimated to this new sleeping arrangement over the course of the next several days. It will not be easy. She spends most of her time in our bed, and this cannot continue.

Thanks again to everyone, especially those who’s uplifting comments that I have not necessarily responded to, but have read, on Facebook.

Peace.


May 6 2010

Isaac Andrew is Born

Isaac Andrew is Born

I wanted to give everyone a not-so-brief update on Isaac, who was born six weeks early on May 5, 2010 at 1:12 pm. He weighed 5 lbs 2 oz and was 18.5 inches long. Initially, his breathing was very good, but he got tired. So, the doctors inserted a breathing tube and gave him a dose of surfactant. He was then transported via ambulance to Akron Children’s Hospital. He arrived at around 4 pm and was off the breathing tube by 11 pm, breathing on his own very well. I returned to Akron General to spend the night with Angie.

Around 9 o’clock this morning I participated in “rounds” as the doctor and three residents made their way around the NICU unit at Akron Children’s. Isaac’s report was very good, and the doctor and I began talking a bit about how long he might stay, and where Angie would stay once she was released (assuming Isaac had to stay longer). She called Akron General to see if there was room for Isaac to return. At this point, I was feeling very good, as I knew she wouldn’t be sending him back to the other hospital unless she felt like the lung problems (and associated heart and brain problems) had been avoided.

However, the doctor on the other end of the line asked her to show me Isaac’s x-rays.

The resident brought the image up, and the doctor proceeded to show me two areas of concern. Two of Isaac’s ribs come together, just before connecting to the spinal column. More importantly, the doctor believes that he has a hemivertebrae, essentially a vertebrae in which only half was formed, leaving a “wedge”. The residents (and doctor) informed me that we would have to have a conversation with an orthopedist in the next day or two. My take away from this conversation was that this could be a problem, but that it was something that would have to be monitored over time (through the teenage years).

After doing some research, I’ve found that hemivertebrae presents itself in a variety of ways. Isaac has one (from what I can tell from my view of the image and the way the doctors talked), which is good. One concern with multiple hemivertebrae is that they provide greater opportunity to lead to curvature of the spine (congenital scoliosis) and instability.

The prognosis for isolated anomalies is fairly good. (Casey says that he sees a fair amount of individuals who present with this condition, yet were never diagnosed until the visit him at some point adolescence.) 25% of patients show no progression, 50% progress slowly, and 25% progress rapidly. Part of what determines the effect of such a condition is the degree to which adjacent vertebrae “fill” the void left by the missing half of the hemivertebrae. I looked at Isaac’s scan for about three minutes, much of this time flustered hearing the news, but there was no apparent curvature. Only what looked like a misaligned vertebrae. This could mean that the half missing, assuming the neonatologists assessment is correct, runs parallel to the scan. Or, it could mean that additional (bone) tissue grew to fill the void.

A second concern is that hemivertebrae can be associated with both cardiac and genitourinary tract anomalies. Isaac’s urine output has been slightly low, but I did witness a bowel movement this morning. The doctor pointed to the fact that all of “his tubes” were inserted without complications as a good sign. Additionally, we are provided some comfort in knowing that a full range of tests and scans were done throughout the pregnancy, and no concerns were raised.

I’m not sure about the ribs, as the doctors suggested that this was not of great concern, but some of what I have read is a bit scary. My guess is that because they join so close to the vertebrae, they do not possess the potential to constrict lung development (the primary complication). This is a question that we will have to ask the orthopedist.

The neonatologist says that this was found “serendipitously”, meaning that the likelihood of severe associated conditions is unlikely. The most conservative course of action for hemivertebrae is surgery early, often times prior to 18 months of age. Often, the purpose of the surgery, for isolated hemivertebrae, is to remove it, resulting in near complete alignment of the spine.

They will run the full gamut of tests tomorrow morning, to check for any other areas of concern. We will talk to the orthopedist as well.

Angie and I have a choice in terms of how we view this. Nothing would have been found if Isaac was not in respiratory distress, which necessitated the taking of x-rays. This means that we have caught things early, and thus have the best opportunity to solve problems successfully and to minimize the extent (and number) of any surgery that has to occur. Isaac is in a great hospital, with competent, confident, and skilled doctors; individuals that will provide the greatest opportunity in terms of any course of action that must be taken.

Much of what I’ve written here is formed from extrapolation, synthesis, and deduction, and is based on what the doctors have said, how they’ve said it, and what I’ve read over the past twelve hours. Some, even a lot, of it may be wrong. I will let everyone know what we find out tomorrow.

Thank you to mom and dad who’ve done whatever we’ve asked, specifically helping watch the kids. Thank you to Dorothy and Joe, who certainly (and noticeably) put Angie’s mind at ease this evening. Thank you to Casey, who’s answered all of my questions honestly, precisely, and all the while never making me feel like I was “bugging him”. Thank you Laurie for watching Gracie today. Most of all, thank you all for your thoughts and prayers. Please continue to keep Isaac in mind. We are all connected and I firmly believe in the power of this sort of collective good will.

Images of the little guy can be found here. He’s beautiful.