On May 14th, 2013 at 4:11pm and 8:18pm, Jase Nicholas and Milania Maria were born at 23w5d at Lankenau Hospital just outside of Philadelphia. Jase Nicholas was born at 1lb 5.3oz and 12 1/2inches long and Milania Maria at 1lb 2.9oz and 12 1/4inches long. I was admitted there 9 days before on strict bedrest due to bulging waters. Lankenau has a Level 3 NICU and my OB felt I needed to be there though she would not be. The labor and birth were very sad and traumatic because we knew the odds were stacked against our babies. That was nothing compared to what was to come.
On Day 2, we lost Jase due to bilateral grade 4 IVH, Pneumothorax and other issues related to his prematurity. On that same day we were told Milania may not make it because she was acidotic and had an irregular heart rhythm. She also had a grade 1 and 2 IVHs but the docs felt confident that they would resolve on their own…the concern was getting her acidosis resolved before they could be damage to her organs .
In the next few days, Milania pulled through and her levels came back to normal with the help of great care and lots of adjustments to her bicarb…then, she needed to be moved to the oscillator vent from the conventional vent. The doctors explained that she had a PDA. Cardiology came in on June 4th and performed an EKG to evaluate her heart and examine the PDA. They determined her PDA was large but wanted to see if they could treat her with a round of Indomethacin right away. The hope was that the Indomethacin would close the PDA because her blood was not oxygenating correctly and it was “flooding her lungs”. We were warned of all the side effects of the Indomethacin, including the increased risk of developing NEC, but we thought it was worth a try to help her breathe better. She was also given Lasix to help dry up the fluid buildup in her lungs due to the PDA. Once the round of Indomethacin was completed (3 doses over the course of 36 hours) the doctors said that they thought her PDA was closing.
On June 10th the PDA was wide open again and they prepped her for another round of Indomethacin. On June 13ththe PDA sounded like it was closed again but for some reason Milania was needing more support via the vent and oxygen...she was anywhere from 47-60% oxygen, way up from her normal 21-25%. That night her doc decided to start a 10 day course of steroids to help her get through this latest bump. That first dose gave her a little boost and I saw my pretty little miracle with her eyes open for over an hour for the first time in 12 days…it was bliss.
On June 14th the NICU called just as my oldest son was about to walk across the field to receive his high school diploma…they thought Milania was developing an infection. Pure panic insued. Antibiotics were started and cultures were sent to the lab…within 24 hours she seemed to be doing much better thankfully, but her PDA was open…again. Docs decided to wait out the
steroid course before doing anything further about her PDA. The steroids likely opened it up again, but due to her breathing support requirements, it was the right choice to start them. On June 16th, we celebrated Father’s Day in the NICU. On June 17th she continued to improve with the help of the steroids and for the first time we saw her face without tape. She had a lot of secretions so her vent tube needed to be retaped. It was the first time we were there for a change and more than a month after our baby girl was born, we finally saw her precious face. Over the next few days, Milania continued to improve…she tried on her first hat, her first bow and I was able to lean into her isolette and kiss her for the first time on June 21st, but her PDA was still open.
She finished her 10 day course of steroids and the docs were happy with her progress. The plan now was to wait a couple weeks and start another course of steroids to extubate. At this point, Milania was now 29 weeks gestation. She was doing so well, the docs were talking about trying an Evita vent which is the same as CPAP but through the ET tube. On June 27th Milania’s belly became distended and she was not able to maintain her temp…our worst fear was becoming a reality…Milania developed NEC…she was still so small at 2lbs 12.2oz.
By the next morning things went downhill fast and her docs requested an emergency transfer to a Level 4 NICU, Children’s Hospital of Philadelphia (CHOP). We were beside ourselves. She was on the highest settings possible on the oscillator and on 100% oxygen…and the PDA was still open.
Then in came our old friend Acidosis. She was having x-rays and blood gases every 2-4 hours and the docs never left her bedside. The thought was that she would perforate at any minute and need emergent surgery. The goal went from being extubated to just keeping her alive period.
The docs at CHOP worked vigilantly to keep her stable and her blood pressure up. Keeping her blood pressure up would help blood get to her gut…something she desperately needed and the PDA was preventing. Due to her PDA being so large, her blood was shunting the wrong direction and there was limited blood flow to her gut. We did not know this until CHOP did an ultrasound to check her bowels. They were looking for perforations or even bowel death and learned about the blood flow at that time. Milania was extremely critical and the focus had to stay on the NEC…she was treated with Vancomycin, Dopamine, Morphine, Hydrocortisone and Platelets to name a few. Prior to arriving at CHOP she was off all IV fluids and to see her with IVs in every extremity was horrible. Her body had a major inflammatory response to the NEC and she gained 2lbs in fluid over just a couple days…our sweet princess was unrecognizable.
With everything going against her, our little fighter rebounded and was moved back to conventional vent on July 2nd…while she was not being given the Hydrocortisone intravenously for her respiratory support, it inadvertently
helped her improve.
Over the course of the next few days, Milania was stable but the NEC was not clearing up. The docs decided to consult with Cardiology about her PDA to see if surgery would improve the blood flow to her gut. Throughout the next week things continued to be up and down every day and sometimes changed hourly. Cardiology ordered an EKG and it showed her PDA was very much open…that with the ultrasound of her belly showing limited blood flow and her lack of steady improvement led the docs to say “Uncle” and schedule a PDA Ligation as soon as possible.
On July 12th her bedside PDA Ligation was performed. Start to finish the surgery was 40 minutes. The surgeon came to see us and explained that her PDA was “very large” and definitely needed to be addressed. He went on to say that he clipped it twice for good measure. I questioned if her PDA caused her develop NEC. He said that is very much a possibility. There were many more obstacles to come… Milania’s PDA Ligation was just the beginning of her recovery, but without it, she likely would not have survived.
Milania went on to have more surgery and defy all odds. She came home from the NICU on Day 144 with an NG tube and ¼ liter of oxygen, but she was home and that was all we ever hoped for. Today she is a happy, healthy 15 month old princess who lights up our every day.