Let’s start from the beginning, can you tell us how you learned about the pregnancy and your initial reaction?
Jude is truly our miracle baby! After I gave birth to his older sister, Isla, I developed Asherman’s Syndrome which required several surgeries and IVF treatment to become pregnant again. We found out in December I was pregnant, and Jude would be due on August 21st, just six days before his big sister’s birthday! We joked about saving money on dual birthday parties, but Jude had obviously had other plans.
When did you find out that things in the pregnancy were not going perfectly? Did you know you would have to spend time in the NICU?
I was monitored closely by Maternal Fetal Medicine and my OB due to my history of Asherman’s Syndrome and the potential for complications – mainly being placenta accrete and cervical insufficiency. At my twenty-week scan everything looked great which was a huge relief. Four weeks later, I was admitted to hospital due to a concern my water had broken. After an exam and ultrasound, it was determined my water was intact, but I was already in active labor and would deliver within the next few days. I had not been experiencing contractions, so this came as a total shock. We knew Jude would spend a significant time in the NICU after birth.
Can you share what you are comfortable with on the delivery of your baby?
Jude was delivered via c-section at 25 weeks and 1 day gestation. I was terrified but also felt calm about his birth. I was fortunate that the OB on call that night had been with me several times throughout the past week, so I felt comfortable with her delivering Jude. A few days prior my water had broken and then I developed a uterine infection. Jude needed to be delivered before the infection crossed over to him and so it was time. In some ways I remember feeling a sense of relief that he was going to be born because I knew my body was failing him. I was also feeling pretty terribly due to that infection! I knew Jude would receive excellent care in the NICU and tried to remain optimistic. When Jude was born my husband was able to see him before the NICU team took over. Jude even let out a tiny cry that sounded like a kitten meowing and I felt joy and relief in that moment. I was able to see Jude a few hours later and will forever be grateful to the L&D nurse who wheeled me and my entire hospital bed into the NICU so I could see him in his isolette.
What was the scariest day for you in the NICU?
There were many scary days in the NICU. But probably the scariest day occurred when Jude was 4 weeks old (29 weeks gestation). I received a call from one neonatologist who said Jude had lab work done and it showed he needed a blood transfusion. We knew this scenario was common in micro preemies, so I was not too alarmed. A few hours later, I received another call from the neonatologist. She advised that they had just received the “differentials” and Jude had an infection. I was driving my daughter home from preschool and trying not to cry. From the get-go, Jude getting an infection was one of my biggest concerns. I knew how susceptible he would be, and it felt like there was no way I could protect him from getting sick. Jude’s neonatologist told us they started antibiotics very early and she felt like he would turn the corner. Jude had urosepsis and spent 21 days on antibiotics, but he did turn the corner and recovered completely.
How long were you in the NICU what was it like when you heard the words “you will be taking Jude home?”
Jude was in the NICU for 78 days. He was discharged at 36 weeks gestation and 4 pounds. I honestly did not know a 4-pound baby was big enough to leave the hospital. We had a day’s notice that he was coming home, though we had known it would be happening soon for about a week and had been able to organize his nursery and other items. I remember his primary nurse, Meredith, telling me Jude was going home the next day and I was equally thrilled and terrified! We had grown accustomed to the NICU, the constant monitors and having nurses around for reassurance. I was anxious about all that lied ahead with bringing home such a tiny and fragile infant. But mostly, I was just so very happy and relieved.
What was the biggest challenge that you had to face for Jude when you went home?
Since Jude was so small when we went home, he was still learning to be efficient at feeds. We had to supplement his breastmilk with formula to ensure he was receiving enough calories and it would take him a very long time to drink a bottle. I was eager to transition him to breastfeeding so I could stop pumping. It took several months but by the time Jude was close to six months adjusted we transitioned to exclusively breastfeeding. This was a huge accomplishment for both of us!
Did you have a lot of fears or anxieties regarding germs once you brought your baby home?
Yes! I was very anxious about germs (and had been in the NICU too) so we had some strict protocols in place. Initially we only allowed immediate family to see Jude. We made sure to always change clothes before holding Jude if we had been out and asked family members not to kiss Jude. We had hand sanitizer everywhere and throughout his first winter home we quarantined. Turns out it was good practice for the past year. The hardest part though was worrying about our daughter giving Jude a germ she picked up from school. I felt like we could not let our daughter cuddle or kiss Jude which was really hard for us and for her to understand.
When did you know that Jude would need extra therapies? What therapies is he still in now?
I never realized Jude would need extra therapies until the NICU OT mentioned that preemies are discharged “with therapies” one day in the NICU. I remember asking her what that meant, and she explained Jude would need support to meet his milestones. This felt scary and unknown to us, but we were fortunate to find an incredible PT, Jen DiCicco, who did home therapy sessions with Jude. Jude engaged in Physical Therapy from the time he was about a month old (adjusted) until he was fourteen months old. Jude will begin Occupation Therapy soon to help manage some sensory issues he is experiencing, and we are also planning to have a speech assessment done.
What does a typical day with Jude look like now?
Jude is a very active and curious little guy. On a typical day we get up, have breakfast, drop his sister off at school and then play outside. Jude loves to be outside messing in the dirt and mud! He takes an afternoon nap and is always eager to pick his big sister up from school. We are looking forward to warmer weather when we can get out the water table and spend more time outside. Jude goes to bed around 7pm every night and occasionally sleeps through the night. He keeps us all smiling.
Any advice you would give another family going through the process? Anything that really helped you get through the experience?
My main advice to new NICU families to ensure you find primary nurses. We relied on Jude’s primary nurses so much as advocates and our support system. It has been an absolute pleasure to keep in touch with them as they have shared our joy in watching his progress. We are so grateful for them and the incredible care they gave Jude. My other main bit of advice is to just take it one day at a time. Everything about the NICU is scary and overwhelming. It helps to celebrate each day’s victories no matter how small, they are significant to your preemie! Ask questions, kangaroo when you can, believe in your baby’s strength and lean into the nursing support team your baby has – they will keep you going.