Miriam’s Story

Site created on January 4, 2019


Caution this story contains graphic descriptions accompanied by birth.

On Dec 4th, during a routine 20 week anatomy visit, our OB-GYN noticed something troubling on the ultrasound and immediately sent us to a neonatologist to continue the appointment from there. The Dr. walked us through what was happening, my cervix was "coning" and the cervix gateway had thinned away at the opening, disallowing a circlage or "stitch" to be placed. Along with this some membranes had begun to migrate downward. The doctor placed us on minimal bedrest, and stated that he would most likely be born in the next 2 weeks, which would result in the loss of the baby. We attended 2 more weekly appointments after this, with no progression in labor, and became more and more hopeful as we inched toward viability.



On Dec 25th in the late morning I noticed that something had come down, and now it was time to race to the hospital, we had officially added 3 weeks to his development. We went to Texas Health Presbyterian as it is the closest level 4 NICU. The NICU doctor came and talked to us about what viability means and different stages, and difficult choices to be made. We were willing to give our baby a fighting chance.

We were 22 weeks and 6 days at admission, it is hospital policy not to resuscitate until 23 weeks. I was placed on a magnesium regimen along with a steroid set to give extra protection and develop babies heart and lungs- which have some terrible side effects on momma like body pain, burning sensation, heat flashes, and general nausea.  I was also placed head down and feet up to try to coax the membranes back upward.  These protocols lasted for 48 hours, during this time my water refused to break, and I did not have a single contraction, baby was on 24 hour monitoring, but was jumping around so much that the nurses would chase him with the monitoring tools sometimes for more than an hour! Finally, I came to a stable place and I was moved into a long-term room to wait on hospital bedrest. Thankfully, I was allowed to get up for a moment and my sister and Saul helped me take a quick shower.

On Dec 29th, in the morning, there was a tinge of blood, and the presence of what was believed to be amniotic fluid sweating from the membranes that had descended, a round of antibiotics was begun to prevent infection, and then because there was no progression we continued to wait. At 10pm another round of bloody show occurred. The Dr. let us know that although my water had not broken, babies foot had come down and he could kick through the waters in breech position at any time causing a very bad emergency. So, it was time, we could risk birthing vaginally but baby would most likely not survive; the doctor asked us one more time if we wanted to resuscitate we needed to do a c-section now; so we agreed, we cried, and we prayed. We also nailed down his name as we walked down the hall. Joseph Alan Xander Ledezma. Joseph after Saul's father Jose; Alan after my father; and Xander which means warrior. Altogether his name means Jehovah who increases, Noble, Warrior.

At 10:30pm we got rolled back into the prep area, Saul called my sister Tabitha who had been with us for the holiday week but had gone  to our house to prepare for her flight the next day.  They pushed another full round of magnesium in under an hour and took me back to get the epidural which they had trouble placing straight, it kept migrating to the right. My labor and delivery nurse "A" was the kindest, most amazing calming feature of the delivery room, she helped me up to get the epidural, but her embrace felt like an angel. Finally, they brought Saul in and he held me while they went in with a vertical cut to the uterus to find baby and bring him out. We both held our breaths as a huge question mark hung over the entire room.

11:37PM the tiniest, yet fiercest wail came from the most perfectly formed 1.35lb baby. The nurses and anesthesiologist were amazed, as typically a 23 weeker can't cry so young. The NICU team was there to receive him and get him set up with oxygen. His heart never faltered once, he just needed help to breathe. I was crawling out of my stirrups trying to twist to see him. Until they turned to us and said, "mommy and daddy baby is good!" They brought a huge bundle with a tiny face over and it was our sweet Joseph, looking oh so perfect and cozy.  Saul went with baby to NICU, and Tabitha received me in the recovery room. So much elation, he is alive and well. There is a long road ahead as typically NICU babies stay in the hospital until their due date, or later, which is April 24, 2019.



We will try to update on J>A>X whenever we have a moment. Thank you for all of your prayers and support, we love you!






Newest Update

July 25, 2019- Home & Therapies

Journal entry by Miriam Ledezma —

Baby JAX has been home with us since May 13th. Yesterday July 24th has been 3 months since his due date, and in a few days he will be officially 7 months old!

It has certainly been a struggle transitioning into full time parents, and especially for me as I finished with Toyota to stay home with baby.

We are so pleased to watch him grow steadily each day, yesterday he reached 12lbs! He still is not on the percentile charts for 7 months. But he is in the 25th percentile for his adjusted age of 3 months!

Some incredible updates:

Eyes:
Just 2 weeks ago we had a final follow up for Retinopothy of Prematurity (ROP), the vessels in both eyes have completely grown into the final stages, and he is completely cleared! There is no damage present. From now we will only have regular annual eye exams. 

Developmental:
We had a exam with our developmental doctor, and she was pleased to report that he is measuring some milestones in the 2-3 mo, and a number of milestones in the 3-4mo stages. Meaning he is right on schedule for his adjusted age, and is actively 'catching up' to his actual age in development. 

Heart:
As of today's follow up, he has no more discernable PDA(heart murmur)! An update on his pulmonary stenosis, which was a slight thickening/narrowing of the ventricles in the heart. This effects the pressure of the blood coming through the heart. Best pressure is 15, and 65 is actionable with a small balloon procedure to open the ventricle. While he was in the NICU he measure about 44, and is now in the low 30's. It appears that it is moving in the right direction. The cardiologist advised that about only 30% of babies get worse from this point, and worsening usually happens in infancy, so once he is gets to the toddler phase it drops down to a 10% chance of worsening. All in all, miraculous news!!

Eating:
We are still using breastmilk fortified for calories and thickened so that it is easier for baby to swallow. We have been going 3 times a week to feeding therapy. JAX has been receiving VitalStim therapy, baby gets electrodes attached to his throat during feeding to exercise the muscles, and hopefully aid us in moving JAX off of the thickener and be able to eat milk straight.

We are daily in awe of the miracle we get to parent, and so so grateful to everyone who has stood with us through these crazy times.

Strong God We Are Watching You Do it!
Read More of the journal titled "July 25, 2019- Home & Therapies"
Patients and caregivers love hearing from you; add a comment to show your support.
Help Miriam Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Miriam's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Leave a comment of support for Miriam

Did you know? A quick comment, no matter the situation (positive or negative), can boost morale by 28.2%.

Comments Hide comments

Load more comments
Read More Journal Entries

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser
Support Links
Helpful Requests
Go to Ways to Help
SVG_Icons_Back_To_Top
Top