Luke has been home from the NICU now for one month.
To be honest, it has been the most difficult and stressful month of my life.
When I went to my follow-up OB appointment, I was talking to my doctor about my anxiety. Because, I have anxiety. He told me that if I didn’t have anxiety, he would be worried. He made me feel reassured in my feelings by telling me that with everything I’ve gone through (Infertility, loosing our twins, infertility again, pre-term labor, having a prolapsed cord, having an emergency c-section, having a pre-term baby who is down syndrome, etc.) its okay to be having some anxiety. We’re working through it, and it’s getting better.
Since Luke has been home, we’ve been to numerous doctor appointments, been re-admitted to the hospital once, had our initial visit with early intervention, figured out a home routine, had lots of snuggles and loves, and have utterly enjoyed our time at HOME as a little family.
One night, while in the bath tub, Luke started throwing up pretty decently. It took me by surprise, and he increased his respiratory rate higher than normal through out the night. Eventually, it returned back to baseline, but he continued to throw up. So, the next morning we took him to the doctor. While listening to him, Luke’s lungs sounded a little more junky than normal. We were admitted to the hospital for possible aspiration and vomiting.
We were admitted on a Friday afternoon and were lucky enough to be discharged late Sunday afternoon. The chest x-ray they took appeared like Luke may have aspirated, but it wasn’t horrible. He ended up on high-flow oxygen for about 6 hours, and then was able to go right back to his home oxygen. (1/8 of a liter).
As soon as we got home, we all rested, because Monday we had to make the drive to Primary Children’s and spend the day seeing the kidney doctors up there.
We met with urology first. We reviewed the nuclear medicine scan that Luke had done two weeks before. We’ve always been worried about Luke’s left kidney. This scan showed that it’s functioning at 37%. This is quite impressive, because everyone (Us and the doctors) were thinking that it wasn’t working at all. He has hydronephrosis on both kidneys, but it’s worse on the left side. And he also has urinary reflux on the left side as well. I went to this appointment ready to schedule surgery for hopefully in the summer. I was shocked when the doctor told us that since his kidney is functioning somewhat, we’re just going to leave it alone and see what happens in a year. I couldn’t be happier!
We then met with nephrology who was also impressed by his kidneys. They checked his lab levels and everything came back great. We will follow-up with them in 4 months, when Luke is 6 months old, just to make sure the kidneys are still functioning well. (Note: Urology is the group that performs surgery for anything to do with the urology aspect. Nephrology deals more with the kidneys and how they are functioning. They typically do not perform any surgeries.)
Today, we followed up with cardiology. Luke has a PFO that the cardiologist informed us is basically the size of a typical newborn. He says that over time, just like a normal newborn, it will close up on its own. His last echo looked perfect, his EKG looked perfect today, and his heart sounds great. He isn’t concerned with anything right now. We do have to keep in the back of our minds that Luke is at risk of developing pulmonary hypertension. With his down syndrome, and his tracheomalacia, it puts him at a greater risk. He doesn’t feel like its going to develop anytime soon however. So, we don’t have to follow-up for 2-3 YEARS! Unless of course, we are worried about something. BUT, this is a huge blessing! 50% of kids who are born with down syndrome have a congenital heart defect that typically requires surgery. Somehow we were blessed to not fall into that category and I’m beyond blessed.
At the end of the day, when I’m exhausted from feeding Luke every 3-4 hours, worrying about his oxygen, worrying about his horrible acid reflux, and just worrying about him in general, I can’t help but reflect on how blessed we are to have Luke. His health conditions could be a lot worse than what they are, but we are lucky. There are blessings disguised in all of our craziness, we just have to take the time to see them.