Leaning Hard

The first week home has been so emotional...joy that's hard to explain from having our baby right here with us to love on anytime we want, fear and stress from the usual worries of being a parent all over again, that doubled a few times over, learning the extras of gtube care, dressing changes and pump feedings, oxygen tanks, heart and apnea monitors, etc etc, trying to navigate through the new world of back and forth to his doctors (specialists in opthamalogy, cardiology, neurology, neurosurgery, genetics, urology, surgery, GI (or not - nobody knows who exactly is in charge of helping us with his Gtube and diet changes, pediatrics, plus setting up early intervention programs for occupational and physical therapy for feeding issues and developmental issues, vision therapy, on it goes. It is a lot to swallow ... and a new challenge or adventure every night. Here are some first-week "initations" we've experienced so far:

Tuesday: after carefully mixing up 24 hours worth of the hospital dietician's formula recipe (30 oz of water to 18 scoops of powder to make it 24 calorie/oz instead of the usual 20), and storing it in labeled bottles so we knew he was getting the right amount at the right time, we got ready for our first night home together. It didn't take more than one occasion of forgetting to pinch the Gtube to remember it's a messy mistake. Then it was bedtime. We were amazed at how well Mason slept all through the night, never cried once! But he grunted quite a bit in his sleep, obviously gassy from the inability to burp. We tried venting his tube and that didn't help, but other than not sleeping much from that, the night went well - we thought. Then the next morning we realized that although the feeding pump said it had delivered all 350 mLs of formula (which it was supposed to do), there was at least 85 of that 350 STILL in the pump. So what did we do wrong?? Did we miscount and put too much in the overnight bottles? Or did the pump misread and just not give him all he was supposed to have?? We had no idea whether to try to give him the extra in case he was 3 oz behind or if it would be worse to overfeed or underfeed him?? The home health nurse who came the next day told us to let it slide for the day...if it happened again we would need to see about a pump replacement.

Wednesday: well the formula amount left over was correct this time. And we vented him using his "chimney" syringe all night, so he slept a lot more soundly, less gas. But to our horror when we woke up the next morning, the chimney had come untaped from his gtube, despite 20 minutes worth of "safeproofing" it, and it spilled formula and stomach contents all over the bed. Uggg... what next??

Thursday: We decided not to vent the Gtube tonight since we decided it wasn't worth crying over spilled milk all over again. We ordered some Farrell Valves which some other moms said were "magic wonders" to vent reliably...they cost a ridiculous amount for a month supply and none of our docs have heard of them to let us know if insurance will cover them, so if these work we'll just buy a few and reuse them I guess. Surprise of tonight? At midnight the food pump alarm goes off with an error message. Funny thing to find out in the middle of the night is, there's no manual. If we have a question we are to call the help line and wake someone up to help us at that hour. Um. Really? We opted to dig up the info online from the user manual. Just as we were getting that sorted out, the apnea monitor went off. At 85 decibals. I hope no one else in the neighborhood was trying to sleep. Thankfully, Mason hadn't had apnea. It was just another error message we had to figure out. "Lead loose." Ahh.  Of course.

Friday and Saturday same story...lots of gas, not much sleep.

Sunday we went to church and Mason had his first seizure since coming home, during the middle of the worship service. He'd gone about a week since the last one, in the hospital. We tried to do what the docs had told us - give him oxygen if he turns blue (he did but the oxygen tank got set up wrong so pretty much a big ugly FAIL there and thankfully it was less than 2 minutes or so and he came out ok on his own), call neurology and tell them so they can adjust his seizure med dose (we did, and now he is on MORE than the max allowed dose of Keppra for babies). Any more seizures means another trip to the neurologist and a new med added or total change of approach, meaning another wean. This I DREAD. Sunday night due to the increased Keppra Mason was fitful and insomnia boy all night, and groaned from feeling sick all over. His big brother woke up screaming after going to bed with an ear ache.

Monday we woke up and Micah had a full-blown cold, along with his ear ache. Mason was sick to his stomach from the Keppra increase, and kept trying to vomit but of course could not. We already had an appointment for Mason, to his first follow-up doc visit to meet his pediatrician. He told us Mason's ear had fluid in it too. Sigh. Looks like a week of sickness on horizon. I guess we'll be back to the ped. tomorrow to talk about Micah. Oh, how I love cold weather. :(

Really, I have no idea what tomorrow holds or how we will get through these long days and never ending doctor visits that don't seem to yield much helpful information, but I imagine it will involve a lot of surprises too. I just hope there are more of the happy ones -- like Mason smiling when I put him down on his tummy for the first time since surgery today, or playing with his musical toys all by himself in the video below :) I will just have to remember a poem my grandma sent me a long time ago by Octavius Winslow ...if ever I needed to "lean hard," it's now...

"Child of My Love! Lean hard! Let Me feel the
pressure of your care. I know your burden, child!
...For even as I laid it on, I said I shall be near, and
while she leans on Me, this burden shall be Mine,
not hers. So shall I keep My child within the circling
arms of My own love. Here lay it down! Do not
fear to impose it on a shoulder which upholds the
government of worlds! Yet closer come! You are
not near enough! ... You love Me! I know it.

Doubt not, then. But, loving me, lean hard!"