Tuesday, November 1, 2011

World Prematurity Awareness Day

Above is Jax on the day he was born. Pink as can be and without any oxygen. Perfect.
The picture above is to show you some perspective on just how small Maryam was. She was roughly the same size as Brett's hand.

Maryam on the day she was born. Her skin was pretty much transparent. The diaper that looks so giant on her is actually the size of a maxi pad.
Jax holding Brett's wedding ring. He was small.

Today is World Prematurity Awareness Day. It is a day that I hold very near and dear to my heart. Being the mother of a preemie puts me in a different circle from other mothers. It seems like other mothers don't truly understand what having a preemie really means. I can't tell you how many times I've heard a pregnant mother say, "I just wish this baby would be born already!" When I ask how far along she is and she replies with something like, "7 or 8 months" I get so bent. I want to scream at her and tell her what could happen to her baby if she had it "already."
Most women are pregnant for 40 weeks or 9-10 months. (I know that 40 months seems like 10 months, but somehow its not always.) 7 months is 28 weeks, 8 months is 32 weeks. Maryam was born at 25 weeks or just over 6 months. Jax was born at 33 weeks, or just over 8 months. Only the mother of a preemie would describe a pregnancy in weeks instead of months or trimesters. With Maryam, I didn't even get to my 3rd trimester!
How being born premature has affected Maryam:
Born at 25w 2d
1lb 10ozs, 750 grams
13" long
On a ventilator for 8 weeks, high frequency and traditional
CPAP for 4 weeks
High flow oxygen for 3 weeks
Low flow oxygen until she was 21 months old
1st surgery, heart surgery at 3 weeks old, PDA ligation (which caused vocal cord paralysis)
2nd surgery, laser eye surgery at 8 weeks old to repair Retinopathy of Prematurity (ROP brought on by the high frequency ventilator)
Several blood transfusions.
Hundreds of chest x-rays. (Literally hundreds. I stopped counting at 157)
Dozens of brain ultrasounds.
Respiratory Distress Syndrome diagnosis changed to Chronic Lung Disease/Bronchopulmonary Dysplasia diagnosis (brought on by the high frequency ventilator)
Severe Gastro Esophagial Reflux Disease GERD, given several meds to try to get her to stop vomiting. Vomiting caused micro aspirations which prevented her lungs from developing.
3rd surgery was a fundoplication and gastrostemy tube (G-tube) placement. This changed Maryam's anatomy so that she was no longer able to vomit and her stomach was permanently attached to her abdominal wall.
She eventually stopped taking all bottles and was 100% tube fed before she was 9 months old.
Starting when Maryam was a year old she was in physical therapy and occupational therapy twice a week. She also had once a week weight checks until she was 2 years old.
Maryam has had about 9 pneumonias.
She has had RSV once, however we didn't tell anyone because we were afraid everyone would freak out. She had been getting Synigis shots all winter, she got them for 3 winters. We were shocked she had RSV, but happy that her pulmonary doc felt we could treat her at home.
She was hospitalized once for pneumonia and flu B.
Maryam is small, started out small, so I guess it makes sense. She weighs 32 lbs and is 41" tall. She wears glasses. She uses an inhaler a few times a day. She is currently on 5 medications, 4 for her lungs (BPD and Asthma) and 1 as an appetite stimulant.

Affects of Prematurity on Jax:
Born at 33w
Weighed 4lbs 4ozs
19" long
Spent 13 days in the NICU
No oxygen support
NG tube for a few days
During his second winter he had RSV and bronchialitis several times.
Suspected asthma.

As you can see, the differences between the two are staggering. Micro preemie versus regular preemie, I've lived both worlds. The doctors told me that every minute, hour and day that the baby can stay in the womb helps. There is an 8 week difference between my two preemies. Those 8 weeks made a world of difference.

If you'd like to read my World Prematurity Awareness Day blog entry from last year, you can find it here.

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