Aiden's Arrival: Riding the Rollercoaster of Love... & Despair

Now I lay me down to sleep, Jesus please let me go home with mommy & daddy this week....

During Saturday night, Aiden's blood sugar dipped again. This rollercoaster of highs and lows, hope and despair is truly taking its toll. I could hear it in my sister's wavering voice during our morning phone call today. Aiden is so sweet and tiny and beautiful; she just wants him to come home and "start" their family life together.

The daily commute into Boston is tiring. Anybody who drives the Mass Pike knows it's really not a joyride. My mom said it seems like the drive is getting shorter though; perhaps because they know the route by heart now.

But other concerns are lurking that make peace hard to come by. There is some concern over what parts of the care will and won't be covered by insurance. They feel hopeful they will be able to straighten that out but there is the added cost of driving into Boston, toll roads, parking and eating out so much more frequently.

But I know they'd drive across the earth to be with Aiden if they had to. In fact, there are some mommies with babies in the Children's NICU who live as far away as Los Angeles. My sister counts her blessings in living close enough to an excellent hospital so she can still have her husband, our mom and friends to support during this time of trial.

So the last few days have been a cycle of Aiden's sugars dipping down - usually in the evening hours. The nurses then have to increase his glucose IV. While my sister, her husband and other visitors spend the day with him, he nurses, takes a bottle and gets cuddled a lot. His blood sugar goes up, starts to stabilize and the nurses can turn down his IV. They had it as low as 3.5 today (I am not sure what measurement this is... as in 3.5 ml/per ???? But compare it to just a few days ago when the IV level was at 7 and higher.) I got a very upbeat phone call from my mom today telling me about Aiden's Adventures.

My sister, her husband and my mom spent about 9 hours in the NICU with Aiden today. She was able to nurse him a couple times and enjoyed his increased energy. He is more alert than in the
first few days.

My four kids (Aiden's cousins) made a Build-A-Bear Bunny for him when my sister was pregnant. They brought Baby Bailey the Bunny to meet Aiden today. They took pics (which I don't have yet) but said Aiden is the same length as the 14 inch bunny. Seriously, that is only 2 inches longer than a kids' classroom ruler. When we made the bunny, we put him in newborn fashion clothes that came with two bibs. Aiden is small enough they joked about using one of the bibs for him. My mom also teased about maybe going to buy some Build-A-Bear clothes to dress Aiden.

"We could use the little hole in the bottom for the stuffed animals' tails to put all his tubes and wires through!" She said. They do actually prohibit them from putting him in the cute newborn ensembles that is so much a part of the thrill of a new baby. Just as my mom and sister were lamenting how painful it would be the day they finally remove the feeding tube from Aiden's nose, he reached up with his tiny delicate hand, grasped the tube and yanked it completely out. Just like that. No tears. No coughing. Nothing. Just Poof... "No more tube up my stinkin' nose!"

Yeah, it was a funny little circumstance and they were happy to hear the nurse show up and say, "Well, let's see if we can go without it then." If he could drink enough they wouldn't put it back in. I can't tell you what a lightened heart it gave my sister to see one less wire attached to her precious little handsome. He still has the heart monitors but when he is all swaddled up, you really can't tell and without the tube in his nose.

The evening phone call from my mom and sister shared this fun, exciting news with me. I was so excited to share it with my dad and my husband. No sooner did I tell them, my phone rang and it was my mom informing me Aiden wasn't able to focus and stay awake long enough to drink enough milk. I guess he needs to be taking in about 36 cc's right now (just under 2 ounces) but the nurses could only get him to take about 21 cc's.

My sister is feeling a little (or perhaps a lot) helpless. She wants to head back to the hospital. I know what she's thinking, "I'm his mommy. If I was there, I'd be able to get him to do it." Oh, the pressure and guilt we put on ourselves as mothers; as parents. I worry about her a little because I know she is completely not thinking about her own health and recovery. Thankfully, my mom and her husband are doing a pretty good job making sure she doesn't overdo it. She really needs to take time to rest and put her feet up as she is having trouble retaining post-pregnancy fluid. We all worry if she's eating enough. But again, I know she is doing her best.

Something I thought was really kind of precious and thoughtful of her husband was that he took a picture of Aiden and put in on their laptop as a background and screensaver so my sister can see her sweet baby's face as she pumps.

So for now, it's more slow and steady. We're just hoping and praying that very soon, Aiden will win this race and get to come home.

As an aside, my family is preparing to leave this week for a road trip back east. We are eager and anxious to see Aiden and everyone else we love so much back East. By this time next week the Mateuszczyks will descend upon Massachusetts once again.

Hoping Aiden makes lots of progress between now and then!