Children · Family · NICU · Parenting · Preemie · Support

OUR PREEMIE FAMILY

My name is Ashton Taylor and I am a preemie mom. I became a preemie mom on June 20th, 2014 at 9:51pm, and I count every day after that as a gift. I am married to a wonderful man, David, we have been married since October 5th, 2013. Our new family welcomed our son Baby David 16 weeks sooner than we should have. He was born at 24 weeks and 2 days, he weighed 1 pound 12 oz. and measured just 11 inches long. From that day our life has changed and we are ready to learn what we can to raise our special little boy.
On Monday June 16th I woke up at 12:30 am to go pee and when I went I noticed some blood. And it was thick and red. So I woke my husband up and we went to the hospital. They checked me in to the labour and delivery observation and had me hooked up to the Doppler and ran some tests and they confirmed I wasn’t in labor and I wasn’t dilated. But the wanted to wait until ultrasound took a look before they sent me home. After 15 hours in a hospital they moved me to ultrasound and after 4 minutes of looking the tech excused herself and the doctor came in and told me I had no amniotic fluid left and I was going to be admitted and put on hospital bed rest. I flipped out and started crying and my husband was trying to get answers out of the doctors like is the baby ok, what happened… They said it’s most likely a slow leak that started they assume on the Friday, and they cannot confirm that there is no fluid, there may still be some. And they also confirmed that my baby was ok, and his kidneys and bladder looked good so he is producing the fluid fine. So they hooked me up to an IV and gave me the awesome steroid shots in the butt and started me on broad spectrum antibiotics to prevent infection for me and baby. I had meetings with my OB, and the NICU doctors as well as social workers and a spiritual councillor. I am not here to rag on them but the lady who talked to me I wanted to punch her out, I believe in god but it was as if she was telling me he was punishing me for something I did. So I refused her help….. Then on Friday June 20th at about 330 pm I started getting crampy and told my nurse and she thought I was just constipated so they loaded me up with laxatives for 2 hours before they realize that I was in labor.

They moved me up to a delivery room, my husband was at home sleeping by this point and my parents were at a fancy dinner. So in between contractions I was texting my parents and trying to call my husband. So I think about two/three hours before my son made his entrance my dad called me to get the whole story, of course his timing was in the middle of a contraction so I answered “in pain talk to you later” and hung up on him and my nurse kept trying to call my husband. Twenty minutes later my parents showed up and my poor dad saw a bit too much of me that night. My son then tried coming out shoulder first so they were prepping me for a C section. And just as they were about to give me the needle with the happy juice he flipped and came out head first face up. And he cried, he took a deep breath at 24+2 weeks gestation and cried when he was born. That was the best sound I had ever heard in my life. He was on CPAP for the first four days of his life breathing on his own, in a way. But he was then intubated on day 4.
When he was intubated he caught pneumonia and was very sick. When we went home on day 6 to cry it out we got a phone call at 3 am telling us that he wasn’t doing too well and they wanted to try some other ventilation methods on him. They wanted to hook him up to Nitric Oxide to help the little hair type things in his lungs open up and absorb more oxygen into his body. We got up, got dressed and drove to the hospital and was there by 3:30 am and stayed for the next 12 to 13 hours making sure everything was being done for our son. Over the next 5 to 6 days they hooked him up to an osolator and a jet ventilation system to go along with the nitric oxide, the pneumonia was causing a lot of damage to his lungs. He would be coming home with and oxygen tank, but then on day 6 of the sickness his oxygen requirements went down from 80% – 70% to high 60%, that was a big improvement for him and his sick lungs. After another 2 week the Jet got turned off and he was on Nitric and the osolator.
I then developed a Love Hate relationship with the nitric oxide, it was helping my son to oxygenate his body, but it was also causing his platelet count to drop. And as they were trying to turn down the nitric to help his body oxygenate itself he would de stat and his oxygen requirements would go up. So the Battle with the nitric went on for about 3 weeks. And then it was just the osolator, and that sucker stuck around for 66 days. The day he was extubated was one of my happiest days in the NICU, that day all the nurses that had dealt with him during the hard times came and told him he did a good job.
Those are just the breathing issues, he was also having blood sugar issues for the first month before his body learned how to regulate his sugars and keep his pancreas going the way it should, then he had super high sodium from the day he was born and that took a month to correct as well. And once all that seemed to be under control he was diagnosed with CMV. And when your immune system is in a compromised or non-existent state like these little preemies it can cause a lot of issues. His CMV caused his liver and spleen to inflame so he was put on a cytotoxic medication to help keep it at bay until his immune system is better. And he has to be on that for 6 weeks, it’s the same medication that they give to people with cancer, so that scared me a lot. Then after that he was diagnosed with a hernia in his little boy parts.
This poor little guy couldn’t catch a break in the least it seemed. Then the day it got better for me was August 1st, my 26th birthday. I walked in and Chris the NP had this giant smile on her face and told me everything good that had happened. The good news outweighed the bad for the first time since June 20th at 9:51pm, 2014.
Life in the NICU is one of the hardest journeys I have ever had to do, but I cannot imagine how hard it has been for my son. What we as parents need to try and do is focus on that one little bit of good news. Even if you are handed a lot of bad news find the one good thing and try and smile about that. Your child may have had more de stats or brads the night before, but he or she gained 100 grams of real baby fat. Smile about that, because that means he or she is building up muscle for the long fight a head of all of you.
Try and remember to smile once a day is my main advice.
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