Anyone who has loved a baby in the NICU has heard the expression that their stay is like a rollercoaster ride. A baby can be doing amazingly well and then the next day have a huge setback. This is mainly because babies who are born premature have immature systems and they are trying to do things that term babies do. This can be really overwhelming to those sweet little ones. So, as you know Easton's first week was amazing. We heard everyday how well he was doing for a 31-weeker. This week I have felt that everyday we have gotten a little bit of not-as-good news but have been reassured that the doctors are not concerned. Well, when you are a mama and they are telling you that your baby is not doing things that they need to be doing in order for you to bring them home, it can be emotional. Lately we have been told that Easton had a slightly abnormal head ultrasound, he has his typical bradys (drops in heart rate) typically he brings it up on his own but a couple of times he has required stimulation, his hemoglobin is low, he has been spitting up the multivitamin that helps his hemoglobin to rise, and has had a weight loss (only 10g but still, he is supposed to gain 20-30g/day). Ugh.
So, last night I went into Easton's room all excited to try to breastfeed and snuggle my sweet boy until we went off to our mandatory CPR class. Kasey met me and we started taking his temperature. We tried three times. Then the nurse tried. Then she tried again with another thermometer. Then she called and got permission from the nurse practitioner to do a rectal temp. Every time Easton had a low temperature. When Kasey asked what it could be attributed to our nurse replied, "Well, it could just mean that he wet his outfit earlier and is a little chilly, or, it could mean something major." REALLY?!? Then she looks at me and says with a wrinkled up face, "I don't want to disappoint you but I hate to take him out to breastfeed if he is cold." WHAM. I lost it. Tears streaming down my face. She says, "Mom, come here, I have a hug for you." Kasey tried to warn her that I just needed some time but she just wouldn't quit. She kept talking and talking about how she understood how frustrating it was, that we had only been there for 2 weeks, that this is all completely normal. I kept it together for the most part but on the inside I was seething! It is NOT normal to be able to hold your child for only an hour a day. It is really hard for me to believe that someone who has not left two babies in the NICU to be cared for by someone other than themselves can truly understand how frustrating it is. So I might have said something along the lines of, "He will be 13-years-old, still in the box (isolette) and I will still be pumping!" (there probably was a naughty word somewhere in that sentence). OOPS.
Needless to say, when we arrived at the NICU today we were greeted by our nurse, the doctor, and a patient advocate. Guess I might have caused a stir. I explained my frustrations and Dr. H. assured me that Easton is doing great. Everything he is doing is because of his prematurity (which gives me severe mommy guilt since it was my body that couldn't seem to keep him in any longer). She did let me know that his head ultrasound results showed the same thing as last week. That his left ventricle (space in the head near the brain) is slightly enlarged than his right ventricle. Also, there is a bright spot that his showing up that may or may not be a level I brain bleed. After Dr. H. talked with the radiologist she is reassured that it is not serious, not causing any swelling or pressure on the brain, and will likely not cause any long term problems. She just kept telling me that if there was a book on how to be a good preemie, Easton read it. I told her that he might have gotten some tips from his tough-guy older brother.
So, I am going to continue to breath. I will also continue to worry, it is my job as a mommy. I will try to not let that worry get in the way of enjoying every moment with my little miracle men. I will try to remind myself of the journey that Kasey and I have taken to become parents, how lucky we are to have each other and the two amazing children we have. We can get through this, it will be challenging, there will be tears, but in the end we will be a stronger family because of it. When Logan was in the NICU Kasey and I listened to Kenny Chesney's "Alive and Well" nearly every day,
So damn easy to say that life's so hard. Everybody has their share of battle scars. As for me, I'd like to thank my lucky stars, that I'm alive and well...
Breath in, breath out.