Hand to Hold's Official Blog: Written by Parents for Parents

Miracle Myla Born at 24 Weeks

This story was submitted by Richelle, one of our readers.

Myla’s story all started in June of 2009. My son Drake was finally one and my husband Dan and I started talking about getting pregnant again. I had to take fertility treatments with Drake, so we figured we would have to do the same this time – but by the time we had gotten home from a July vacation I was already pregnant! After going in for my 25 week check up on Nov. 31, everything looked great. She was even measuring big! Later that night I woke up to severe pain that would NOT go away. I called the hospital and they said if it didn’t go away in a few minutes to come in. The pain got worse, so we sent Drake to a friend’s house for the night and made what felt like the longest ride into Las Vegas from our home in Pahrump. We arrived at St. Rose Hospital – San Martin campus where they admitted me and tried to stop the contractions. It wasn’t until 7:00 AM the next morning that doctors discovered my placenta had ruptured and I had a blood clot. This put both the baby and I in grave danger, and they decided to do an emergency C-section.

Myla June was born at 7:43 AM on Dec 1, 2009. She weighed 880 grams, or 1 lb. 15oz. The worst thing was I wasn’t 25 weeks pregnant like they thought I was ONLY 24 WEEKS pregnant! Within 24 hours of being born, Myla developed grade three and grade four bleeds on her brain. We were informed that the next two weeks were the most critical. The doctors told us that she would probably be severely disabled if she survived and they asked if we wanted them to continue treatment. Our answer was YES!!! Drs explained to us that they had to ask because a lot of parents when faced with the fact that they may have a severely disabled child and know the long and difficult road ahead of them they sometimes turn down care.

Myla was put on a ventilator and was very sensitive to light, and sound we had to be very quiet and gentle when we touched her. Due to her level of prematurity, simply placing your hand on her gently could cause pain. They gave her Morphine to keep her from getting agitated. On December 7th, Myla suffered a perforated bowel and had to have a drain placed in her tummy to help it heal and she went on the first of many antibiotic treatments. On December 18th they had to place a port in her brain to drain excess fluid. Myla had developed hydrocephalus – scar tissue from her brain bleeds prevented the spinal fluid from absorbing, so it would build up and put pressure on her brain. There was a little knob on top of her head and they would drain the fluid every few days. The doctors said she would have to be bigger before they could place a permanent one. On Christmas Eve Myla had to have surgery to close a hole in her heart. Due to her size and all of her breathing problems, the procedure caused her left lung to collapse and she was struggling to survive. Her blood sugars and blood pressure were all over the place and they couldn’t keep her O2 levels up. The doctors said she would get worse before she would get better. Her color was gray and she was dying. “Please don’t take my baby,” I pleaded, “not on Christmas!”

Christmas morning I called for a check-up and she was doing GREAT! On January 3rd, Myla finally came off of the ventilator. She still needed assistance, but no tubes down her throat. January 7th was the first time I got to hold her. She was 7 weeks old!! On January 16th Myla was placed in isolation because she had the Rota Virus and C-Diff, a microorganism growing in her bowels. Luckily the treatment was just antibiotics. February 15 was the day she finally had her shunt placed in her head to drain the spinal fluid. All went well and she was doing great. She even started taking the bottle a few days later. On March 17th Myla had a feeding tube placed. After weeks of trying she just couldn’t get the hang of eating from a bottle. We were scheduled to go home on March 28th. Dan and I roomed in all weekend to show the doctors we could care for her and knew how to use the feeding pump, how to hook up her oxygen, how to place and use the monitors and how to administer her meds. We were packed and ready to go when the neurosurgeon finally came in and told us Myla needed ANOTHER surgery. Not all three ventricles were communicating with her shunt and she would have to correct it.

The surgery did not go well and Myla had to have the entire shunt removed. She got a horrible infection and had to go on another set of antibiotics for 10-21 days! Myla was very sick for these few weeks. They placed an external port that drained the fluid off into a reservoir next to her bed. We couldn’t hold her because if we moved her the drain would either drain too fast or too slow. On April 5th a central line was placed near her heart to pump antibiotics into her little body to fight off the infection. On April 19th, Myla had the final shunt placed – this time on the right side of her brain with an extension in to the rear ventricle.

One week later, on Monday, April 26th, MYLA CAME HOME!!! For those of you counting, she stayed 146 days in the hospital and had 9 surgeries in 4 months on her tiny little body. She came home on an apnea monitor for sleeping and a feeding tube with a pump. No oxygen. Myla has been home now for almost 10 months and is doing very well. She has glasses now and started to coo and smile.

In November we had a set back and her shunt had failed and had to be replaced.  Surgery went very well but recovery was rough and she was admitted into Pediatric Intensive Care Unit and was having breathing problems and started having seizures. Now with medications she is seizure free ans she is back to being a happy baby. She is trying really hard to hold her head up and roll over, and we are still struggling with oral feedings.  We have many more doctor appointments and surgeries and LOTS of therapy ahead of us, but at least we have her! GOD bless our Miracle Myla!!

Afton Mower About Afton Mower

After Mower (UT) lost her firstborn son at 21 weeks.  Her daughter was born a year and a half later at 27 weeks.  The NICU was overwhelming and isolating and it was through those two experiences she was led to found this social hub for parents to find the support they needed. Afton also gave birth to another daughter, born two days overdue after four months of strict bedrest. She believes it is a tender experience to hold a special baby in your arms when his spirit returns to his heavenly home, a miracle to watch tiny babies survive the risks of prematurity and a blessing to hold a healthy full-term baby after months of difficulty and sacrifices.

Comments

  1. She is beautiful and so, so strong! So are you! Congratulations on a beautiful baby girl!

  2. Beautiful baby girl and amazing parents.

  3. Its amazing how the smallest ones seem to be the strongest. I’m glad despite doctor recommendation you never gave up.

  4. Thank you for sharing your story. I am also a mommy of a 24 weeker and this gives me hope.

  5. What an amazing little girl she is. Thank you for sharing your story.

  6. I’m a grandmother of a 27 week, 1 lb. 13 oz beautiful baby boy. He’s had heart surgery to close the PDA and has been on a jet ventilator for all 3 weeks of life. It is a struggle to watch him fight and to see our son and daughter-in-law go through this. Thanks for your inspiring story, it gives me hope.

  7. We are the proud parents of a 24 week old 1 lbs. 10 oz (740 gms) baby girl. She’s doing very well after a long 6.5 month hospital stay. We consistently record and cherish her many milestones (1st smile,giggle,sitting up w/o assistance etc). Thank you for sharing your story, it has definitely given us hope.

  8. I am 24 weeks pregnant with my forth baby it’s boy and I have been havein contractions and am 1cm so I’m scared to death i hope I will be able to carry him but if I was to have him now at least I know he would have a chance thanksfor sharing your story

  9. My sister in law had her boy at 23 weeks and one day… he was born at 1lb and 6oz… he is doing well… he is now 1lb and 9 oz… we are all praying and hoping he comes home… any advice would be GREAT! my e-mail is MoDaigle@gmail.com! thank you all!

  10. Stacy Woldanski says:

    What a happy ending to a story. Congratulations.. My son was born at 24 weeks weighing 1lb 9oz… He is now 18 years old…

  11. Your baby is an inspiration. My sister had a baby at 24 weeks. This her and her husbands first child. I am on my way to see them and I know my sister must be in agony. thank you for sharing your story. It gives us all hope!

  12. cathy dejesus says:

    I just had a 26 weeker @ 710 grams on 3/12/12.She also battled with jet, grade 3&4 brain bleeds,preferation, and now a skin infection.As a first time mom I’m trying my best to be strong for her and staying positive.And at times when I feel like I’m losing it,I always come across inspirational stories like yours that pull me together….she is doings well as expected on certain days.I pray to keep her…God bless to you and yours….

  13. Your story is truly amazing. Coincidentally, I also have a 24 weeker named Myla. She’s now 10 weeks old and was just extubated today. Her main problem is her lungs. We’ve been told by almost all doctors that she probably won’t make it. I’d love to hear how your little Myla is doing now!

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