Elise has had a rough couple of days. It started with Tuesday and my last blog post. Then came Wednesday when she continued to have several brady episodes and nine episodes on Wednesday night to be exact. On Wednesday, the doctors decided to do a full work up on Elise for possible infection. As of today (Thursday) labs are starting to come back saying NO infection. Whew! They did go ahead and start her on antibiotics as a precautionary measure. My heart broke when I learned they had to put her IV in her little head. Her arms and legs were hard sticks and they feared she might pull it out, now that she is bigger and moving around more. What a trooper! If all lab work comes back negative, they will discontinue the antibiotics in 48 hours. As I've said before, the professional team in the NICU is outstanding, and they never want to miss anything that might be going on besides the obvious. We learned today that Elise’s team of neonatologists were grilling Dr. Pyle, her neo on record this week. Have you tried this? What about this? Of course all the neonatologists round early in the morning and discuss their babies together. Three of Elise’s neo’s stopped by the bedside today to check on her and just simply say hello to us. Dr. Pyle came by three different times to have conversations about Elise. We love the teamwork, and we are in constant awe of the professionalism and love they show us. Even one of Elise’s nurses and two of the neonatologists got in a fun argument of claiming Elise: She’s my baby! No, she will always be mine! Hearing this warmed our hearts.
The obvious problem for Elise is reflux right now. She was doing great with bottles last week, but as with most preemies, reflux has entered her little world and she doesn't like it one bit. Who would? Lately, when the nurses suction her nose, they pull up breast milk. That is one leading sign that the reflux is getting worse. Before today, the doctors wanted to try putting her feeds on a continuous pump. Meaning, she gets 9 mLs every hour and the pump never stops. They started the continuous pump yesterday, but since she continued to brady throughout yesterday and last night, they decided that the continuous feedings weren't doing the trick alone...Elise needed more support.
Today, we met with Dr. Pyle and he thinks Elise needs to start on the medicine Prilosec. The other thing he is considering is putting her feeding tube farther down (into her small intestines) rather than in her stomach where it is now. By placing the tube in her small intestines, reflux will definitely minimize, and hopefully the medicine will also help.
We can certainly tell Elise is uncomfortable lately. She grimaces many times and doesn't like to be moved around very much. We also know that the bradys are not comfortable to go through and must tire her out quickly. It was hard to be away from her yesterday when I kept calling the nurses, only to find out more bradys were being written down on her report. We both couldn't wait to see her today. Dad gave me the first holding round and I think that calmed both Elise and me. She immediately started high satting and got very comfortable while snuggling on my chest. Although I wanted to see the doctor right away, Elise's snuggling made some of my worry fade away.
When Dr. Pyle came by again, he saw how comfortable Elise was on my chest and told me that he thought Elise should try some non-nutrient sucking today (exploring with breastfeeding). We scheduled the appointment with lactation to come by and coach me through it. As soon as they arrived and I got all ready, Elise brady'd and needed stimulation. Sometimes Elise can bring up her heart rate and oxygen without 'help' from the nurse or one of us. If she can't, we have to give her stimulation at times. Stimulation is usually rubbing Elise's back and sides to try to get her to take deep breaths. We also tap/pinch her feet until her blue color disappears and her rosy pink color comes back. We also watch the monitors closely to make sure her numbers are back where they need to be. This is definitely not something I've grown to love. My heart breaks every time I have to do it. However, I have gotten better with staying calm because I know that is what is best for Miss BLUEberry Muffin (G and I agree her latest nickname is quite fitting).
If Elise’s several bradys weren’t enough worrisome news over the last couple of days, the eye doctor came by the bedside for his bi-monthly check-up today. In order to get prepared for the eye doctor, Elise got a series of eye drops and then he puts a huge contraption on her face to force her eyes open. After he leaves, she is fussy and her eyes are red and swollen for a few hours. It was the last thing I wanted her to go through today, but nonetheless, she was on the schedule to be seen.
For the last three appointments with the eye doctor, he saw no signs of ROP (Retinopathy of Prematurity) in Elise’s eyes. We rejoiced with this good news in earlier blogs. Ever since the first appointment, the eye doctor did say there was always a slight chance signs for ROP could become visible before Elise is considered a full-term baby. Today when he examined her, he unfortunately saw a mild case of ROP. He said he is not envisioning surgery now or in the near future, but he definitely wants to follow her case more closely now. He now plans to see her weekly instead of every two weeks.
As you can presume, my mind has worried a lot lately. Elise was having such strong/good days with finally getting off the CPAP, taking bottles, and transitioning into her big girl bed. It was all looking up. Not to mention, we are probably in our last month of the NICU. Not that things are looking down now, but whenever there are bumps in the road, it makes you reflect on what is going wrong (and many women like myself tend to WORRY when we don’t feel like we can provide an immediate fix to the problems).
I just left my role as a worrying daughter. I worried that my mom was getting the right treatment for her lung disease. I worried she was eating enough living by herself. Was she really putting down that glass of chardonnay and drinking the V8 juice I bought her from the store, or was she fibbing to her daughter?? ha! I worried when she would sleep at night and when she would feel the need to sleep all day long. Why was she not having any energy? Was she getting sicker?
Now I have entered my role as a worrying mother....the role my mother just left. She is now up in Heaven where she can look down upon her children and granddaughter and know that things are going to be ok. Those of us still on Earth don't get that privilege until we meet up with our loved ones in Heaven. For now, we remain here on Earth to worry or anticipate the unknowns. Of course, we like to say we cast our worries on God and let the big guy handle them, but I'm as guilty as the next person...I still hold onto some of the worry even after all the prayers and talks with God.
I understand worrying is part of life. Some people can handle it better than others. I have been one of those people who tend to OVER worry about things going on in my life. At least I admit it, right?? Grant is always wonderful and correct to remind me, "Honey, it hasn't even happened yet; let's not worry about the what ifs right now." However, I think there is a difference between men and women. Men have this beautiful trait of compartmentalizing worrisome issues in their lives. Women throw everything into one big heap in their brains and take all of it on at the same time. Ladies, how many times have you been asked by someone, "What wrong?"...and you don't know where to begin???
Worrying doesn't always have a negative light. Many times women worry about positive things too. I found myself asking the question today, Will I ever stop worrying about Elise?" When she gets into school? No. Grades. Right teacher for her. Behavior in school. Making friends. When she goes off to college? Heck no. Independence! When she marries? Well, probably not. Did she find the right husband (hopefully just like her daddy). When she has her own children? Oh no, because they will be my grandchildren. Sounds like the worrying just changes during the different phases of our lives. It never really ends.
After spending a somewhat tense day in the NICU, G and I headed to dinner. It seems as though God gives us a great ‘night cap’ when He knows we need it. We went back for Elise’s 8:00 hands on time after dinner. It was the first time all day that she had both eyes wide open! We were loving on her and snapping pictures as usual, when Karrie, Elise’s favorite night nurse, asked us if we’d like to try non-nutrient sucking. I first said no, remembering how it went earlier today and not wanting to ‘push’ Elise. Then Grant reminded me that her eyes were wide open and she seemed very happy. “Ok, let’s give it a shot,” I thought.
Elise never ceases to amaze us! She latched on right away and started sucking. It was exactly what this Momma needed…a little love from her lady! She never brady’d and she kept her sats at high levels the entire time. After exploring, Elise got held by her daddy as he rocked her fast asleep.
A mother's worry never ends. Or shall I say, "A mother's love never ends." We worry because we love so very much. The love I have for Elise is indescribable… even if she is a blueberry muffin at times.
G & J & E