Saturday, March 1, 2008

First Update

First of all, I want to thank you all for your prayers and your concern over our Isabel. Kari and Adam and the rest of us have had a pretty tough and scary week, and it looks like it may continue into the foreseeable future. Since she was born, we have had to practice some monumental patience as we wait for little bits of information to come our way.

To date, we have been seeing the various symptoms that Isabel has been suffering from, but the cause (or the source of the problems) wasn't discovered until yesterday. Dr.Cherney, a St. Luke's children's neurosurgeon studied Isabel's CAT scan (and various other imaging and test results) and met with Adam, Kari, Matt (Adam's brother), and myself yesterday afternoon to give us his assessment of Isabel's condition. Here is a simplified summary of what we know to date:

The blood being sent to Isabel's brain is not leaving the area as fast as it is coming in. The arteries bring blood in, and the veins take the blood back to the heart. The veins leaving her brain are not large and effective enough to allow an adequate amount of blood to leave her brain. This is causing a certain degree of pressure in Isabel's head, which seems to be the source of her other symptoms. This is not part of any condition or syndrome that the doctor has ever seen before, so he will be conferring with other specialists in the country to examine her case. One blessing that we noted is that Dr. Cherney is attending a cranial/facial specialists conference this weekend which will be attended by the most experienced and knowledgeable doctors in the country in this field. They noted that Isabel would probably be the star of the conference, and more importantly, she is likely to have the attention of the particular doctors that can help her.

The doctor gave us a lot of information rather quickly yesterday, so everyone is still processing what they heard. The four of us in the conference room talked for a little while after the doctor left, so that we could all recount what was said, and be able to articulate it to other people. There was much more information discussed than what I have summarized above, but in the interest of keeping things concise and easy to pray for, I decided to paraphrase it.

There is one clearly defined action that we can all be praying for. The pressure in Isabel's head is not critical right now, but prolonged, chronic pressure is a big problem. Until the pressure is relieved, her condition is not likely to improve. We were disheartened to hear that this cannot be solved via surgery. In fact, Dr. Cherney stated that there is nothing that he or anyone else can do to solve the pressure problem. This is something that Isabel's body has to do by itself. When there is inadequate means of circulating blood out of the brain, the body will try to create other channels for this happen, in the form of new blood vessels. So, in effect, we have to give Isabel some time to generate these. This couldn't be more in God's hands at this point. If you would like something specific to pray for, this would be it. Isabel's body has to create these new channels in a timely fashion, and in locations in her head that don't cause other problems later...all on her own.

One thing to note: babies are metabolically superhuman. They produce and develop cells as part of their normal growth at an alarming rate. They are extremely resilient and can do things ( like growing new veins ) very well. As fragile as they are, babies were designed to survive. Isabel's problems seem to exist entirely in the cranial (head) area. The rest of her body has been imaged and evaluated, and appears to be in perfect working order.

She is a beautiful little girl who is very strong and doesnt like to have I.V.'s in her hands (she has pulled out at least three). She grabbed the doctors arms when she was born and didn't let go. When she sleeps, she folds her arms to her chest, and was even caught "praying" with her hands folded a couple days ago. She crosses her legs like she's "taking it easy", and absolutely does not like to be disturbed from this lounging for diaper changes and check-ups. She has beautiful blue eyes that are very alert and attentive to what is going on around her.

Her breathing has been improving day by day. Her oxygen levels are perfect as long as she is calm and resting, or eating (or lounging). When she gets upset, the oxygen levels go down, so this is another thing we can pray for. She has to be consistent with her oxygen levels before she has any hope of going home.

Adam and Kari are amazing parents. They are so committed to Isabel and her care. They are both at the NICU with Isabel every day, all day, with short breaks for fresh air and food. They are staying with Ron and Karen for the time being, to make travel to and from the hospital easier. They appreciate your prayers and concerns very much. As you can imagine, they really need the space to be good parents to Isabel at this time. Isabel's grandparents can also use some space to process all this new information. We ask that you keep us all in your prayers, and if you have any questions, please contact me via email and I'll try my best to answer them. If you would like to contact Isabel's parents or grandparents, send me your contact information, and I'll make sure that it gets to them. I try to see Isabel everyday and keep up to date with her treatment, so I will update you all as we know more.

Thanks again for your prayers and your concerns. We very much look forward to the day that when Isabel can meet you all.

Byron

2 comments:

Christie Who? said...

The Jr. Seideman's (Steve, Christie & Co.) are praying and wish for both blessings and peace.

Lisa Wheeler Milton said...

Her fighting spirit is a good sign, I think.