NICU Journal - October 8, 2003

Note: This is the continuation of a chronicle of the girls' NICU journey which began at their birth at 26 weeks gestation on August 31, 2003. They are alive and well today.

On October 8, 2003, I sent out the following email to family and friends:

Hello, Prayer Warriors!
Thanks for keeping us in your frequent, specific prayers. In the last 24 hours, we have had some very challenging turns of events. I feel like Wayne and Garth in "Wayne's World" playing street hockey. They were constantly yelling "Game On!" and "Game Off!" as traffic kept interrupting them. That's us.

Annie did not have her PDA ligation surgery--again. As of midnight, it was on, but as of 7 a.m., it was off. Her PDA, it seems, is closing to a smaller size; however, until it is closed, it's always an issue and always putting some amount of oxygenated blood into her lungs rather than through her body. Her platelets [used to clot] were low yesterday and she was receiving transfusions to bring it up to a tolerable amount for surgery. Meanwhile, the UAC [umbillical artery catheter] had to be removed because her lower left leg was bruising. Umbilical cords are kept open for an arterial catheter and a vein catheter in premature infants so as to have an avenue for the frequent blood amounts they draw and this type of lower leg bruising is a typical complication of keeping a UAC open. Well, her left big toe and pinky toe looks like they've been dipped in india ink and Welch's grape juice. There are many other dark purple splotches on Annie's lower left leg. We have the option of using heparin [which will not eliminate the clots, but will prevent further clotting by thinning the blood] or just waiting and seeing. The doctor in charge ran a very thorough battery of tests to see what we're dealing with. We know that her brain scan is fine; her kidneys have blood flow to and from them; there is an identifiable clot in the left leg and there are avenues of blood around it. The risk of heparin is that it could cause a brain bleed [not good]; the risk of waiting is that the clotting could worsen. As this is an ARTERIAL issue, the clots are moving AWAY from the umbilicus and the leg; hence the bruising at the cul-de-sac called her big and little toes. There is no risk of her throwing a clot into her lung or heart or brain. I wondered how the bruises were moving and no one could really give me a definitive answer. So I thought we should trace them with a Sharpee pen and watch. Now Annie looks like she was the victim of a frat party prank, but at least we have something objective and definitive to watch. Annie's other issue is her kidneys. She simply needs to urinate. The docs suspect she might have an infection and are treating her with antibiotics. She'll get another dose of lasix [diuretic] soon. Please pray for: complete closing of the PDA; natural resolution of the lower bruising; resumption of good kidney function; good rest and strength.

Mary Jo, not to be outdone, hit a proverbial wall in her little marathon. She was breathing with great difficulty yesterday and had to be re-intibated to the standard ventilator. The docs suspect she has an infection and are treating her with a few antibiotics. They attempted to do a spinal tap to see if she has meningitis; however three strikes and no success on getting a sample. Today, she got moved back into Annie's unit and rested comfortably most of the day. She looks really good to me, pink and comfortable. Mama's intuition is that the "twin thing" is happening and Mary Jo wanted to be back with her sister. The first day of their lives, we were warned that this would be a roller coaster ride. I usually love the coasters, but this ride, quite frankly, has me tired. Dave and I are pulling together as a team and really trying to be clear and loving in all our communications. Zeke seems to be doing fine. Today, as I gazed on the crucifix, I remembered that Jesus had help in bearing his cross when Simon was conscripted from the crowd. I ask all of you good prayer warriors to be Simon to us and to pick up this little cross of ours by praying, praying, praying and sacrificing. I am truly weary and truly grateful. God is still in charge and no matter what I do, I cannot thwart His awesome plan, whatever it may be. Love-- Ruth Anne :)

What was happening: We were losing Annie's left toes and her left leg was being severely impaired. This is the injury which we are still dealing with today. We were tired. During the whole NICU adventure, I only recall saying the Rosary once. It was by Annie's bedside, late on the evening of October 7th, the Feast of Our Lady of the Rosary. I believe that what happened to Annie on the 8th was a direct response to my prayer, although I don't fully understand it. Mary Jo was always happier and better when next to her sister. I repeatedly begged the hospital to keep them together. The NICU was being renovated and Mary Jo was located remotely and getting less time from us by virtue of being away from Annie. If I were a circus plate-spinner, you'd be hearing a lot of crashes from my ring of the circus.