Back to Work for Jesse

Jesse returned to work today. He spent last week at home, with me and Miles. I am so glad we were able to adjust together. We spent many hours, just the 5 of us (dogs included) snuggled on the bed- crying, hugging, and simply wondering. The dogs contributed many licks to the mix; we call them "puppy kisses." Being together recharged our batteries and gave us the strength to continue. Additionally, both sets of grandparents were present- in full force. When the going gets tough, the tough unite over pizza and Pierce's BBQ. We are not just family; we are friends.

I know Jesse hard a hard time leaving this morning. He lingered over a napping and full-bellied Miles for several minutes before kissing me good-bye. My two men have such a strong bond; Miles is permanently linked to Jesse's heart. Despite all of our recent set backs, Jesse still attests that Miles is his world (his words exactly). We both agree that he is the best thing that has ever happened to us. Maybe that is why our hearts hurts so much; this intensity can swing in many directions.

A Reflective Sunday

Things have finally settled down a bit. Jesse and I both agree- this has been the worst week ever, but at least it is over. Miles is doing wonderful on the apnea monitor- no indications yet of actual sleep apnea. No alarms sounding during the night. His breathing looks good on the monitor and sounds good to my ears. He will remain on the monitor until his next visit with the cardiologist- just to make sure. So far, this looks like it might just be a case of weird infant breathing. Thank God.

We are meeting with the geneticist this coming Thursday. I was just filling out the paperwork for the appointment. Hundreds of questions about my pregnancy- which was completely normal. I did everything I needed to do. . .then some extra credit work because I am such an over-achiever. For example, I never dyed my hair (which was like holding my breath for 9 months). I ditched nail polish, food preservatives, glorious caffeine, heeled shoes, fast food, and loud music. Sleep was courted in abundance, though I got plenty of exercise chasing after my 8th graders. I did everything I was supposed to do, and yet, my body didn't hold up its end of the bargain. In keeping true to my type-A personality, I am also a control freak. Miles' diagnosis is throwing my inability to control life in my face. Sometimes, actually most of the time, life is out of our control. I am quick to freak out in situations where I feel powerless or at the mercy of someone/something else. My son is who he is, and I can't change that. I need to realize that his Down Syndrome is not my fault. Logically, my head easily accepts this fact. Emotionally, my heart is breaking because I feel like I failed my family. Once I truly understand that it is nature, not me, calling the shots, I will be able to let go of the pain.

Another Road Bump

Feels like we (all) can't catch a break. Last night I realized that Miles also has sleep apnea. Tonight, a nurse is coming over with a monitor for us to use while Miles sleeps. It will sound an alarm every time he stops breathing. If tonight is anything like last night, we will hear the alarm often. We are going to the doc's in the morning to review data from the monitor. His doc has been great- she gave us the option of keeping Miles at home for observation or admitting him to the hospital. She said our week has been terrible enough- we should keep him home tonight. I agree. I need my silly little biscuit man here. That goes for Jesse, too.

A New Perspective

I said, "This isn't fair."
Jesse said, "This isn't fair to Miles."

The morning after

Miles greeted me this morning with a devilish smile! His grin was huge, and as he stuck his tongue out he pointed it at me. Too cute! I really needed that smile.

I can't sleep.

As I lay awake in bed, I am soothed by Miles' chortling on the baby monitor. 3 am has always been his favorite time of day. While pregnant, he would really run my womb through the paces then. He was also born at 3am- a man of true consistencey.

Jesse is currently on bottle and diaper duty. I sat with them for a few minutes and rewarmed Miles' bottle because he has learned that warm bottles are much tastier. He is really being active- making too many cute faces and sounds for my sad heart to handle at the moment. I had to step outside for some air.

While outside, I resolved that I needed to write about my feelings. Let me share with you the thoughts I have running on repeat:

-My brother Clark, Miles' most amazing uncle and a true wordsmith, put our situation into a perfect analogy earlier tonight. "You and Jesse have been thrown a fast ball to the brain." He is referring to the speed and severity of which we have received this news, and Clark is right. Not a week ago, our family was still living in a reality where our son was healthy, and life was status quo.

-Also, while talking to Clark, I had a revelation. I told my brother I would totally exchange my life for my son's- that I would give my health for his health. I know with my whole being that I am prepared to do anything that my son requires. Guess this is what it means to be a parent.

-While sitting outside moments ago, it came to me that the Yin & Yang symbol is an excellent sign for my family. In the brightest of lights, there is an element of darkness, an undercurrent of fragility. And in our darkest moments, there is always hope. Right now, Jesse and I are sitting in darkness. Miles is our beacon of light, our source of hope, and our reason to be strong. We are living for him as I think he is living for us.

A matter of the heart. . .

Yesterday's cold and rainy day was the perfect backdrop for the events which occurred. It was like the sky was crying with us- grieving as we grieved. Today has been a brilliant and sunny day; a new warmth warming our house. Knowing the health status of our son made getting started this morning so much easier than many mornings past. We left for our appointment with the cardiologist feeling renewed and hopeful.

I wish I could say that the good weather was an accurate omen for our visit with the cardiologist, Dr. F. Sadly, we have learned that Miles' Trisomy 21 has affected his heart. Miles was diagnosed with a Ventricular Septal Defect. VSD is an "opening in the wall that separates the two lower pumping parts of the heart." Miles opening is large enough that surgery is required. Dr. F said we will probably be taking Miles to Charlottesville (UVA) by the end of July for the procedure. In essence, his heart is doing double duty- it is re-oxygenating oxygenated blood. There is a silver lining to our news. Miles exhibits no exterior symptoms of heart defect. His weight gain is phenomenal. In two and a half months, Miles has doubled his birth weight. He now weighs 10 pounds- and technically, he should not be doing so well. He is also very strong; he rolled over on his side during the examination- a wonderful sign of progress.

How are Jesse and I doing? Not so good. This has been a very painful day. We are slowly contacting family and friends with the news. We have no intention of keeping Miles' condition a secret. We are proud of him- extra chromosomes or not. Not 5 minutes ago, as I sat down to start this posting, I was sobbing. Now, I feel better having committed my pain to printed word. I wish we could have all of our dearest friends over to hold and love our child. However, we must limit Miles contact with germs. He must not catch any viruses before his surgery. Additionally, we will have to maintain the same visitation regulations until he fully recovers from the procedure. I encourage you to e-mail or call us. Even respond to this blog- I will be updating frequently.