I took the week of parental leave from work after Julie’s surgery. This finally gave me the time to focus on school and getting caught up. I had slipped further behind that I realized. Since I read so slowly, it took a long time to get caught up on the 3000 pages needed for that semester.
Since Julie’s condition hadn’t radically changed, I didn’t send out any updates for a week…
There were no updates over the weekend… I was trying to keep up with my classes. I’m really far behind on reading and lecture videos. I have a hard assignment due before midnight tonight. I’m taking this week off work, too. I have dozens of things to do in addition to making daily milk runs to the hospital.
Julie graduated from the ventilator to a CPAP machine on Saturday morning. She is struggling as she is being forced to breathe on her own for the first time in her young life. The nurse told me that Julie let out a little bit of a cry during the “graduation” process. Sarah and I haven’t heard a sound out of her since she was born – no breath or energy to speak up – yet. She is definitely my favorite daughter! We were told that she might need to go back on the ventilator if she poops out from breathing on her own. It’s been over 48 hours, so far. Also they have already decreased Julie’s oxygen level and one setting.
Julie is super girl. She just needed to get rid of that kryptonite from her chest!
Julie hasn’t been as responsive to us because the CPAP requires more of her focus. She continues to hold a finger, but she can’t keep her eyes open for very long.
Fluid build up is no longer a problem so now weight gain is a good thing. All preemies build up a bit of fluid from time to time, so Julie will be monitored and given diuretics as needed. She has steadily increased weight since our last update. She is now at 5 lbs 3 oz – that’s pretty much all baby. The nurses are supplementing Julie’s feedings with extra calories to help her gain weight.
The best news is that Julie has no more IVs, no more antibiotics, no more pain meds and blood tests are down to once a day. As of yesterday, she only had one needle in her. It looks very lonely around her space since almost all of her machines are gone.
I’m including a picture of the CPAP machine for those who use one at home to compare. I’m also including a picture of her new head-gear and stitches.
Sarah was feeling pretty sassy Friday. She buzzed around the house cleaning and organizing. She’s paid for it for the past couple days, remembering why the doctor has her on bed rest for another month.
Thanks again to all who are praying for Julie. Also, thanks to those who are bringing food and have helped in other ways. Looking back, I can’t imagine how we could have survived without the support.
Andy and Sarah Horn
Julie turned a corner during this week. We no longer had to worry about fluid build up. That meant no more IVs and limited medications.
Best of all, Julie graduated to the CPAP machine. Another step closer to coming home.
Although the CPAP machine is a welcome improvement for Julie, it comes with its own set of problems. First, the machine forces Julie to work harder to breath. This takes more energy and Julie tended to fight against the machine. Second, the headgear is rather uncomfortable. It doesn’t seem to fit well and needs extra straps to prevent Julie from taking it off.
Sarah remained on bed-rest until the end of April after seeing her doctor. The pregnancy and delivery took its toll on her and the doctor wanted to make sure she heals before letting her go.
Sarah continued pumping for Julie during this entire time. Unfortunately, she had fallen behind on providing what Julie needed each day. This caused Sarah a lot of consternation and undue embarrassment. What we learned since this situation confirms that Sarah did well. Very well, indeed!
I continued making milk runs to the hospital at night. Most times Sarah came with me, but sometimes she couldn’t manage it. The NICU schedule prevented us from coming during shift change between 7 and 8 (both AM and PM). So we tended to wait until after 8 pm. This meant that we would stay past midnight, but this also gave Sarah the opportunity to bathe Julie.
The CPAP machine also meant that we could move Julie around in the baby box (for diaper changing, general cleaning, etc). Sarah still hadn’t had a chance to hold Julie after three weeks. This limitation was starting to weigh on Sarah as the days went by and Julie seemed no closer to going home.