The Journey Continues: I Left My Heart in Boston...

Last night was a really, really tough one for my sister. I guess we knew it was coming. She was finally released from the hospital herself and faced with the experience of having to go back home without her baby. Before leaving though, my sister, her husband and my mom took the long walk over to the NICU to see the baby.

While Thursday morning's report was filled with hope, promise and progress, late Thursday afternoon brought with it another setback. Baby Aiden's nurses tried to turn down the levels on his glucose IV because he seemed to be stabilizing at a reasonable level. Unfortunately, he wasn't ready for that. His levels dropped from the 70's back to the 30's again. My sister was devastated. My mom and dad said she was refusing to leave the hospital. Well who could blame her? Would you want to leave? Where else was she going to go and feel like she was at all in a place she belonged? Having gone through this cycle of good news followed by a setback several times now, makes it that much harder to exhale completely whenever there is good news.

I am realizing this whole experience has brought up memories for my parents as they relive the ordeal they went through when my sister was born. She and her twin were born 3 months premature. My sister was born at 1 pound, 15 ounces while her twin sister was 2 pounds, 3 ounces. Technology and medical advancements have made it possible for so many more little babies to survive. Unfortunately, back in those days, there was no such thing as surfactant and my sister's twin (my other sister) died from collapsed lungs 2 days after she was born. My sister, the smaller and weaker of the two, was fully expected to pass away too. It was just a matter of time. But she fought for her little life.

"We'd hear good news, good news, then days of setbacks," my dad told me yesterday. It was an anxiety-ridden road. This is where faith, hope and character are tested in ways only those who face a struggle like this could fully appreciate.

Needless to say, last night was an emotional nightmare as my sister, her husband and my mom made the trek from Boston to home. The one hour distance stretches to eternity when they can't be with the baby. I think she must feel like he's on the other side of the world.

Even though she was home, I don’t think she felt that sense of, “Ah it’s good to be home,” that comes after a trip or vacation. They called the hospital a few times throughout the night to check on the baby’s progress.

They were back at the hospital today to see the baby and have enjoyed a good amount of time holding him, talking to him, cuddling him and even changing his diaper. Apparently during one diaper change Aiden did what boys do, and continued to “do his business” mid-diaper change. My mom said it had my sister giggling and smiling like nobody’s business. Faced with separation from your newborn obviously instills a deep sense of gratefulness and joy for experiencing the most simple of motherly tasks. I am comforted to hear that my sister is thoroughly enjoying every second she is with her baby.


My mom called not long ago saying that the baby’s sugars are back up and they are trying to turn the glucose IV down again. I guess this is just the process they will be continuing with until they can get him off the IV altogether. He is back to his birth weight after dropping, gaining (too much too fast from fluid and swelling) and so forth. He has also been moved from an isolette to a regular open-type bassinet. They are finding their hope and victory in whatever details they can; cheering each step of progress to keep a positive attitude.

My sister was also excited to be able to try nursing him for the first time today. Those who have any experience with this know it isn’t always easy under the most normal of circumstances, so I’m hoping she has a positive experience.

I’d like to take this time to say, my own personal reaction isn’t really the focus here at all, but I do admit that this has been an extremely daunting week. I feel as if I’m somewhat in another world; as if time has gone on but I’m somewhat standing still along with my family. I realize how I should be feeling gratitude for the health of my own children, and that while I of course love my baby nephew and my sister, I shouldn’t feel so deeply traumatized by this. But I do. And I make no apologies for it. I am blessed to have the ability to fully connect to and plug into what’s going on with people I love. I really don’t know if it helps share their burden or not, but I know that it’s just the way it is and I can’t change it.

I know how many tears and moments of heartache I’ve had this past week. I know how many moments of each day have been spent with baby Aiden and my sister’s welfare as the primary thought in my mind and heart. (All of them). I know that while I can’t say for 100% certain that I KNOW what my sister and her husband are feeling, I can say with all confidence that this is very hard for them. Even knowing that baby Aiden is better off than some of the babies he shares the NICU with, and even though we know in our hearts he is going to make it and what ever - if any - lasting effects may result, right here and right now, this is hard. As simple as they can make life now, the better - cutting away any other distractions.

If ever there was a time to cry, to allow feelings of sadness, sorrow and grief bubble to the surface, now is the time. Nothing good would come from trying to suppress or deny those feelings. They need to flow through my sister, her husband and the rest of us, so they can reach the light and disperse into the air, to be collected by God. I’m sure it’s why each morning we can wake up with a sense of hope. It probably helps that we’ve had almost a week to let this situation settle in our minds and truly become a reality; as does having a better understanding of what’s afflicting Aiden.

For now, we just continue to pray for the baby’s progress and my sister’s recovery – c-sections are major surgery and she’s had complications on top of that, not to mention stress. She's still moving pretty slow, needs rest and as much peace in her life as possible right now. As much as I'd really, really, really like to be there right now, I know that she needs calm - something the addition of other people's presence - my four energetic whirlwind children particularly, cannot provide. I'm hoping that the coming week will bring enough time for her to be ready to face my family at her doorstep.

And since the size and weight of every person’s struggle is largely dependent upon the angle from which others view it, we ask that those of you who pray and have compassion for the struggles of babies and their parents everywhere, to include in your hearts, the babies whose lives are in much greater peril and the mothers who sit by even more fearful and helpless as they pray for a miracle – for the chance to bring their baby home and see him or her grow into a wonderful child of God right here on Earth.