Wednesday, June 1, 2011

June Feature Family

At the beginning of each month Ella's Halo will have a NICU family tell their story about life in the NICU with their baby. Our hope is that by featuring different families others will have a better understanding of the difficult, roller-coaster ride many face when their baby is in the NICU.  Ella's Halo created the Feature Family series, if you are interested in sharing your story , please email us at to share your NICU story and to be a future Feature Family.

June's Feature Family were in the hospital the same time we were there with Ella.  Evelyn Titus was Ella's first little friend and neighbor in the hospital.  Just this past month the Titus family was helping to support Ella's Halo at Bowling for Babies!  It was so nice to see their little girl enjoying the day and bowling to help other little NICU babies like her. 

Evelyn Titus
Written by Amanda Titus
Former NICU Mommy

Our story starts at the 20 week ultrasound. I will never forget that ultrasound and the technician who seemed very nervous – so nervous that we thought he was new! Turned out he knew something was wrong with our baby. The ultrasound showed very little fetal growth since the last ultrasound 10 weeks earlier. I was immediately afraid for our little girl’s life! We were referred to the University of Minnesota and met with a specialist and had more ultrasounds at 23 weeks and 26. Both showed the same thing – little fetal growth. I guess you could say we knew we were going to have a preemie by this time, especially when the doctor told us we would be lucky to make it to 34 weeks.

At 28 weeks I was admitted to the hospital on bed rest. At the end of my 30th week, I had an ultrasound that showed that my little one had grown very little since the last ultrasound. The doctors made the decision at that time to deliver.

On April 20, 2009 at 31 weeks 1 day we were blessed with Evelyn Grace. We had no idea what to expect. We were very lucky that at Evelyn’s birth she was crying and breathing! She was small at 2 lbs 1 oz. We were lucky enough to even hold her right away! This began our 62 day stay in the NICU.

We live 2 hours away from the hospital. We were very lucky that I was from the Twin Cities and all of my family was still in the area. They were my support system when my husband was back at home working. I stayed with family during the whole NICU stay and my husband would come on weekends after work. Unfortunately, my husband lost his job just a few weeks into Evelyn’s NICU stay. It did turn out to be a blessing in disguise because he was able to be with us in the hospital all the time.

The NICU was a difficult full time job. I would leave at 9am and not get back to a bed until 9, 10 even 11 pm. I couldn’t stand the thought of leaving her at the hospital alone yet I needed sleep to function. I was lucky that I was able to sleep the few hours I had available for sleep. The first time I left Evelyn in tears was about a week after she was born. We were visiting her and were able to hold her. As I was holding her though, her oxygen level would drop. She was stressed out because I, her mom, was holding her. It broke my heart! I left many other days in tears also – when I realized that I was unable to pump enough breast milk for her, when day after day after day I had to leave her at the hospital just waiting to be able to take my little girl home!

The most stressful part for me was not knowing what would happen when I walked into the hospital room each day. Usually for Evelyn, we would find out she had a lot of desats (her oxygen level would drop) and they had to put her on oxygen. Our other challenge was eating. We spent countless hours with Occupational Therapy teaching Evelyn how to eat. We tried different nipples and different techniques to give Evelyn the optimum eating situation – we would have her wear just a onesie to keep her cooler and more awake, we would wrap her in a blanket really tight to keep her attention on the bottle, we would sit her straight up and tilt the bottle up for 5 seconds so she could take a drink and then put the bottle back down to give her a rest, we didn’t allow Evelyn to eat more than 30 minutes at a time – more would burn more calories than she ate in the 30 minutes. These are things that I don’t think the average mom or dad has to think about.

Evelyn finally learned to eat just a few days before her due date of June 21. We went home June 20, 2009. I don’t think I had ever been so happy in my life and what a wonderful Father’s Day gift for daddy.

Two years later, Evelyn is still behind developmentally. She started walking at 23 months. She has a lot of problems gaining weight which is common for babies born so little. At two years of age, she is not quite 20 pounds yet. We have dealt with our fair share of lung problems like pneumonia and respiratory distress that first year of her life along with two hospital stays. The first year of her life we only took her to daycare and the doctor for fear she would get sick again. The latest condition we found out she has is aspiration. We now need to thicken everything she drinks to the consistency of honey. All in all, she is doing great and one day, no one will even know she was a preemie!


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