Every month, High Risk Hope would like to highlight ongoing topics, frustrations, or curiosities in your very unique journey with high-risk pregnancy and/or premature birth. Mothers, fathers, family, and friends will touch on their personal tools, tips, and techniques to many of the ongoing concerns you face after having a high-risk pregnancy or a premature infant. Above all, remember that there are no right or wrong answers, only other parents and families figuring it out along the way, just like you. Here is what they have to say this month. Do you have a question you’d like addressed on The Parent Perspective? Email us today!
Kassandra Morales | Jaxon, now 1 year old
“Our experience in the NICU was scary but once you ask questions and start learning about the machines, every beep of those machines and cables make you feel more confident. Life after the NICU is a little challenging. After 57 days in the NICU, Jaxon finally came home with me. It was such an adjustment–no more hospital trips, nobody to guide you, and now what you learned at the hospital is your every day life. When Jaxon was 5 months old, he had to get an NG Tube (Nasogastric tube) for feeding and once the NG tube was placed, it was KEY to ask as many questions as I wanted and whenever I wanted until learning and feeling confident. NG tube feedings required checking placement every feeding, calculating the volume of formula and duration, changing constantly the tape holding the tube, scheduling feedings and finding a good position for feeding. Now he is 1 year and 6 months and no longer has the NG Tube, but we do have therapies they are a big part of Jaxon’s development. We take it day by day and every single week he has more and more improvements!”
Laura Luksik | Emily, now 3 years old
“Bringing Emily home after 77 days in the NICU was one of the best days of our lives. We had been waiting for this day very impatiently and by this point, we were mentally prepared and excited! Our older son was a preemie too and he spent 12 days in the NICU. Although it definitely was not as long and definitely not as intense, it was something we had done before and we were more than ready to have our family together and complete under one roof. Of course, we had our worries and anxieties. I remember the day we finally got discharged we were running out that night trying to find an Owlet sock (tracks heart rate and oxygen level); unfortunately, we could not find one in stock and we could not wait for it to be ordered. After a stressful night without any cords or monitors, Emily slept without incident and that instantly made us more comfortable and reassured that we had nothing to worry about at home. We were also more than ready to be ‘normal’ again and we quickly fell into our new family’s routine. We were not as worried about being out in public as she had already received her first set of shots and she was almost 3 months old at the time of discharge. For our family, we felt we overcame the challenges pretty quickly knowing we had already done this once before and also having had so long to mentally prepare for this day. It was a welcome relief and we wanted it to be a day full of love and excitement rather than worries and stress.”
Marshella Pounds | Emerson, now 2 years old
“The main thing I remember about taking Emerson home was the terrifying feeling around having to change his trach ties as well as his trach. I remember thinking that his trach was going to slip out and that we would definitely end up back in the hospital. I was relieved when that didn’t happen. Aside from that, I remember our first trip to the doctor’s office when we had packed all of his bags and got him in the car with his vent, but it kept alarming. We could not figure out what was wrong and we followed all of the instructions our respiratory therapist gave us. I ended up texting her and it turned out that the vent alarms when it is unplugged and we just needed to hit the reset button. We felt extremely silly and got a good laugh out of it.”
Baleigh Margol | Avelyn and Slade, now 4 years old
“Avelyn was ready to come home after 12 weeks, and when the day came, I panicked. She needed to be on oxygen, and use a pulse oximeter and apnea monitor. A representative had come in weeks before to show me how to use the equipment, but between having one baby at home and one in the NICU, my mind was completely gone and I couldn’t remember how to use any of it. I begged the nurses and doctors to keep her. I totally lost it. I just knew I was going to blow her lungs up by misusing the oxygen, or that she’d stop breathing and I wouldn’t be able to get her to start again. Finally, one of our primary nurses came in from working in a different area, talked me off my ledge, and gave me the pep talk I needed to take our tiny baby home. Though the monitors were cumbersome (she could only be moved as far as her cords or tubes allowed), they ended up giving me incredible peace of mind. While Slade was still sleeping in our room so I could check on him throughout the night, I knew Avelyn was safe in her crib and that we’d be alerted the second her O2 dropped or her heart stopped. She was seven months old by the time she came off of everything and has been a strong-willed, sassy little delight ever since.”
Do you have a question you’d like addressed on The Parent Perspective? Email us today!