Our Angel Eli

As many of you probably know by now (and as some of you may not have known), our little Eli was diagnosed on Saturday (8/26) with congenital obstructive hydrocephalus. "Hydrocephalus" literally means water in the head, but the condition actually refers to an obstruction in the passage of fluid from the ventricles of the brain to the spinal column. In Eli's case, the Ct. scan revealed an obstruction between the third and fourth ventricles. Sunday morning (8/27), the doctors performed an MRI to double-check against the presence of a tumor (thankfully, there was none) and to decide on operation procedures. The preferred operation, when possible, is called an endoscopic ventriculostomy, a procedure where the surgeons puncture a whole in the wall of one of the ventricles in an effort to re-establish the proper flow of cerebral-spinal fluid (CSF). This is the preferred option for suitable patients because it doesn't require the permanent presence of a foreign object in the patient's body and therefore reduces the risk of infection and other complications. The other option is the insertion of a shunt which diverts CSF flow away from the area of obstruction and down into the belly. The downside to the shunt is that it runs the risk of infection, clogging, and other complications--it places a foreign object in the patient's body indefinitely. Most hydrocephalus patients end up getting a shunt because particular conditions are required for making the ventriculostomy effective. In Eli's case, the MRI revealed that her body has already tried to create an alternative ventricular pore through which CSF could flow--and it hasn't worked. This failure left the doctors no choice but to opt for the shunt. Dr. Chang, the neurosurgeon who operated on Eli this afternoon (Sunday), decided that the soonder Eli was operated on the better for her development and so decided to operate today instead of tomorrow (Monday). The operation itself went much more quickly than we had anticipated. By all counts, it went very well. Eli, to this point, seems to be recovering as well as could be hoped for. The incision marks on her little head are much less striking than we expected and, aside from being a meta-skinhead (the doctors had to shave the area of operation), Eli is as beautiful as ever.Eli has been so good and so sweet throughout the entire ordeal. In fact, she's really charmed the socks off of one of the nurses, who in turn has been wonderfully solicitous of Eli's and our well-being; she not only responds to our needs and questions, she anticipates them. Her name, Wendy Myers, deserves to be gratefully recorded. Apparently the Yale-New Haven hospital where Eli and Lia are staying is one of the best in the United States, period, with a special strength in pediatrics. We are very lucky to be where we are--Heaven, in Eli's interest, surely had a hand in my admission to Yale Law School.Our ward has been spectacular. On Saturday, we had to walk to the Yale Health Clinic because our car wouldn't start. Our neighbors and ward members, Devan, Anna, and Emerson Bennett (Devan is a 2L at the law school), came to our rescue. Anna gave Lia and Eli a ride to the hospital and stayed with Lia throughout the testing period, including the Ct. scan. Meanwhile, Devan helped me clean our car battery and get it going again. The Bennetts then set up shop at our house and watched Julia throughout the afternoon and evening after dropping me off at the hospital. Devan later picked me up and took me home in time to put Julia to bed. Before putting Julia to bed, we called Lia in her hospital room and put her on speaker phone. Julia was a little dolly, immediately saying eagerly, "Hi Mommy! I miss you Mommy! I love you Mommy! Mommy, I need for you to be home" (these are all direct quotes).This morning (Sunday), Travis Sevy, a ward member and Lia's close high school friend, came over and took Julia and me down to the hospital. Travis and I gave Eli a blessing, and then Travis, his wife, Lindsay, and their little ones, Maya (2) and Asher (4 mos.), took Julia to church with them. After church, the Sevys brought us lunch and kept Julia with them throughout the afternoon and evening. Julia, we're told, had a riot romping around their apartment with Maya; we and the Sevys may have conspired to present the world with its latest terrible tandem.Lindsay, a counselor in the Relief Society presidency, told us that when they told the Relief Society about Eli's condition, there was a veritable eruption of outpouring love and willingness to help. Dozens offered to provide meals and/or babysitting. The Relief Society president, Joyce Thomas, already provided a hearty Carribean meal which we've not yet had time to eat (we were given a spare dinner tray at the hospital, and we had a late lunch). We really feel overwhelmed by the kindness of the New Haven saints to a family of strangers--but I suppose that in this church and kingdom we are "no more strangers and foreigners, but fellowcitizens with the saints, and of the family of God" (Eph. 2:19). I know that all of you have questions about what the consequences of all of this will be for Eli's development. At this point, we simply don't know. Some hydrocephalus children live a perfectly normal life with the shunt in place, while others struggle developmentally. We hope and pray that Eli will be in the former category, but only time can tell. For the near future, Eli will probably spend at least a day or two recovering in the PICU of Yale-New Haven before coming home. After that, she'll return periodically to the pediatric wing of the hospital where the doctors will track the progress of her recovery and the effectiveness of the shunt. If all goes well, her brain should enclose upon the space now occupied by excess fluid, and her skull will mold itself to the new contours of the brain. Fortunately, Eli was operated on before the sutures in her skull were fully hardened, so her head should adapt relatively successfully to the operation.Many of you will also want to ask how Lia and I are doing. We're okay, under the circumstances. Lia, in particular, is emotionally and physically exhausted. I gave her a blessing today as well. We've heard the "facts" of Eli's case recited to us ad nauseum, and Lia really doesn't want to hear them again or repeat them herself, so if you have any questions, please ask them as comments on the blog and I'll respond to them here when I can. The big questions, at this point, are all unanswerable. By the way, it hasn't really stopped raining in New Haven for the last 72 hours or so.We do want to thank all of you for your prayers. Please spread the word about Eli's case to persons who you think ought to know and refer questions and questioners to the blog. This has been a taxing experience in many ways and continues to be such; we have, however, known much of the tender mercies of the Lord and of the ministering of angels in the process.