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Grace & Larsen

 

When I found out I was having twins, I knew they would be premature, but I never expected our twins would ever be severely premature. We knew it would be a difficult pregnancy because I had a history of a weak cervix. We had a top Fairfield County perinatal specialist watching from day one, a tight cerclage of my cervix, weeks of bed rest, contraction medications, and finally upside down in the hospital for a month. Even with all those precautions, at 26 1/2 weeks gestation, my water broke. Grace May and Larsen Faith were born on January 15, 2000. They were not due until April 20, 2000.

Grace was the healthier of the twins. She was 2 pounds at birth and off a ventilator by one week, and then on c-pap (oxygen under pressure) for about one month. At about 30 weeks she was 2 1/2 pounds and breathing only with help from nasal cannula oxygen, by 33 weeks she was off all breathing assistance.

Larsen Faith, born at 26 1/2 weeks

Larsen Faith (born at 26 1/2 weeks, 1 lb. 12 oz.)

After it was time to try and rid Grace off all her IV lines for feeding at 20 weeks, Grace's biggest preemie hurdle was slow motility in her intestines. She could not digest food. Therefore, the neonatologists recommended a drug (Regland?) for this problem, but we heard about dependency and neurological issues with the drug so we hoped there was an alternative therapy. Thanks to the pediatric gastroenterologist our Grace was able to digest food by passing it directly to her intestines with a long feeding tube passing her stomach. Once the intestines began working, Grace's digestion from her stomach soon followed. She was now on her way to learning how to suck and swallow and breathe all at the same time.

Grace was also diagnosed with a Grade 2t intraventricular hemorrhage and she had Stage 1 ROP (retinopathy of prematurity). Both of these issues resolved quickly. Grace was released from the hospital at 36 weeks gestation at 3 pounds 6 ounces because she was able to gain weight on her own, maintain her own body temperature, and she had not had any breathing problems in one week. She was fragile and scary to bring home with no medication or monitors. After the first year of preventative physical therapy from Birth To Three, she met all her milestones, speech and physical, and she is now a healthy and normal four-year-old! She is finally on the weight chart and has been on the height chart from her second birthday.

Larsen was the fragile fighting twin. She was 1 pound 12 ounces at birth, and by week two she was 1-7. She was transferred to Columbia Presbyterian Hospital 12 hours after birth because her lungs were in very bad shape, and she needed an oscillating ventilator, which is softer on the lungs. By the time she made it to Columbia, both her lungs had collapsed (double pneumo-thorax). Now with chest tubes to drain fluid and an oscillating vent, she recovered and left Columbia after 10 days on c-pap. On arrival in Connecticut, she was found to have a blood infection, and her breathing was deteriorating again because she was sick. She was put back on a ventilator and given antibiotics, and again she recovered by one week and was back on c-pap to breathe.

While in Columbia, it was discovered that Larsen had a Grade 3t intraventricular hemorrhage. We immediately called in neurologists to watch this bleed, and they ordered two spinal taps to release the fluid as it rescinded, she never needed a shunt.

Larsen went on to digest food and gain weight slowly, and by 34 weeks she was off all breathing assistance and finally gaining weight on her own ability to suck and swallow. Larsen then got a very bad cold, and was put back on nasal cannula for two weeks.

Larsen came home one month after Grace, at 3 pounds 6 ounces and 40 weeks gestation exactly. Larsen's prognosis for the future was not looking as good as it was for her twin Grace. The Birth To Three therapists' initial evaluation showed that she may be at high risk for cerebral palsy. Happily I am able to report that Larsen does not have any physical limitations at all, although she does have slight low muscle tone which causes her to walk like a runway model, swiveling her hips. She also has mild sensory integration disorder but it has not affected her school abilities or socially to date. She receives aqua therapy to treat both these issues. If you were to meet Larsen today, you would never know this fiery little child has any issues at all. Her grandmother thinks she will be the President one day!

No story is ever the same with babies born this young. We were given great advice by one doctor when all this started. He said, try not to ride the emotional wave with good days and bad days. He said, each day will be different, some very good and others very bad, and this is what to expect for their recovery. Try not to go down emotionally with every down day, and too far up with the good days — just stay as flat as you can emotionally in order to get through it.

We took a very active role in caring for our children in the NICU. We pushed the nurses and doctors to allow us to hold, feed, bathe, diaper change and even dress our twins, and we know that our warm bodies, our voices, and our gentle caring hands helped them get stronger! Be there for your baby, be there as much as you can and oversee everything that is done to them. You are their parents and you know what is best for them, even when they are sick and you don't think you may know how they are feeling. But trust us, you do.

“Just Because I’m a Preemie…”

by Larsen Klein (age 12, born at 26 weeks)

Just because I’m a preemie,
It doesn’t mean I’m strange
I don’t have any problems
You don’t need to ask me
A million questions

Just because I’m a preemie,
You don’t have to be
afraid of me
It doesn’t mean I’m weird
I don’t have any
Life-threatening diseases

Just because I’m a preemie
I don’t have any
Crazy mutations
I’m not an outcast
I don’t get any
Special treatment

Just because I’m a preemie
I’m not any different
Thank you.

 
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