5 Weeks and Counting

Our little boys are 5 weeks old today and 30 weeks gestational age (if they were still in my belly where they belong). It's so strange that these past few weeks have felt like the longest weeks of my life but they really did go by rather quickly now that I'm looking back at them. The last few days have been much the same as the first few weeks...a few ups and lots of downs.

Logan's head circumference measurement jumped up another centimeter and upon examination of his head and fontanelles by the doctor, they determined that the cerebrospinal fluid had again built up to a dangerous level. Unfortunately, he therefore underwent his 2nd spinal tap on Friday during which they were able to extract 3 cc's of fluid. Although these spinal taps are painful and stressful for Logan, they truly are a blessing in disguise and we are lucky to have them as a temporary course of action. I didn't mention this in my last post, but Logan has communicating hydrocephalus, which basically means that there is nothing blocking the flow of CSF from one ventricle to another or from the ventricles into the spinal areas. Instead, this is a problem with absorbtion of CSF. Either the ventricles are producing a greater than normal amount of CSF and it is overwhelming the system, or the parts of the system that are supposed to be absorbing the CSF are not doing their job. If the CSF wasn't flowing down into the spinal areas, then a tap would not be a viable option to drain the fluid and relieve the pressure on the brain. A small silver lining to an otherwise dreary situation, but we'll take whatever we can get these days.

They are off the parenteral nutrition (IV fluids containing vitamins, minerals, salts and lipids) and receiving only breastmilk fortified with extra calories in their gavage feeds. They are taking 15 ml's every 3 hours and are continuing to slowly grow and gain weight. As of Friday, Landon is up to 2 lbs., 2 ozs. and Logan is weighing in at 1 lb., 14 ozs. but they will both be weighed again tomorrow and I'm hoping Logan can top off the 2 lb. mark, what a great accomplishment for him.

In regards to their breathing efforts, unfortunately they are still on the ventilator and don't seem to be making too much leeway towards getting off it, which has been so disheartening. Logan had a particularly bad week and has been bumped up much higher on his vent settings and oxygen due to poor blood gases. On Friday, in addition to the spinal tap, he received a chest xray and a bronchoscopy. The chest xray showed a partial collapse of the right lung so the bronchoscopy was done to check for signs of scarring, inflammation or other blockage within the lungs. Thankfully, his lungs were clear (except for some fluid) but they are still uncertain as to exactly what is causing this setback. They both tested positive to a strain of staph in their ET tubes (very common) and were started on a course of antibiotics that will last anywhere from 7-10 days. If the infection wis playing a factor in their breathing problems, hopefully things will improve once the antibiotics get a chance to kick in. As with all things NICU-related, only time will tell.

I have been continuing my kangaroo care with both Landon and Logan and cherishing every part of it - the feel of their skin against mine, the sweet smell of their tiny bodies, the way they look up at me when I speak softly to them. There really isn't anything better in the whole world. I only hope my babies enjoy it as much as their mommy does.