The first 21 weeks of pregnancy with our daughter Veda was bliss. We had prayed for this blessing for so long and every day we repeatedly reflected on the fact that we were finally parents! We found out on August 18, 2015 that we were expecting a sweet baby girl and we couldn't have been more excited. She had completely stolen our hearts and we
talked about her to everyone.

September 24th we went in for our anatomy scan. Neither my husband or I were nervous. I remember being really excited to see her growing features and all our previous ultrasounds had gone well. Since this was our first time in an anatomy scan we didn't know what to expect and cheerfully watched as she wiggled her body all around.

After a little bit the technician told me to get dressed and said she would be right back. I sat back down next to my husband and a few minutes later our tech and the radiologist came into the room. The radiologist went on to tell us that our daughter had some abnormalities which included an enlarged kidney, a hole in her heart, and she was measuring around 2 weeks smaller than what she should.
They couldn't give us anymore information than that at the time and said they were sending us to a Maternal Fetal Specialist.

We were in shock and our hearts broke for our baby girl. We didn't know anything except for the fact we were so in love with her and were going to do everything we could to protect her and fight for her life. So that's what we did.

We spent the next few months in and out of specialist appointments which all continued to confirm that she had existing abnormalities. They kept suggesting an amniocentesis but early on we didn't want to risk
miscarrying and later in the pregnancy we knew that the results wouldn't change the outcome or our love for her so we continued to just keep an eye on her to make sure she was still thriving in the womb. Her heartbeat
was always strong and she didn't stop moving! We got to know her very well through all the ultrasounds and loved seeing the process of her development. It is truly amazing.

We saw numerous specialists and looked at each part of her in as much detail as we could. Some appointments things would seem worse and other appointments she surprised us all by how well she was doing. It was hard emotionally going back and forth all the time but I would do anything for her and that's what I stayed focused on. We knew she would need special care once she came, would be in the nicu and possibly need surgery, but we were just looking forward to seeing her face and holding her in our arms.

I left my job early to avoid stress and to be able to take care of her and I both the best I could. I spent every day at home talking to her about our life, singing to her and reading her books. I soaked in every kick and hiccup. We never stopped thanking God for her and celebrating her life. We had the BEST baby shower and setup her nursery perfectly. We were so hopeful and although we knew there would be struggles we were expecting to bring her home.

December 18th,2015 I got up in the morning and my husband and I headed to our weekly specialist appointment. I had been feeling extra exhausted that week and was assuming this appointment would be quick like the last few so I could go back home and rest. Veda was active but not doing all the things she had been before, such as practicing breathing. They ended up hooking us up to a non-stress test and after seeing my blood pressure was high too, they decided it was best to send me down to labor and delivery for further testing.

It was concluded that I was quickly heading into preeclampsia and needed constant monitoring if not early delivery so they kept me in the hospital. I was only 33 weeks so we were very nervous. Like always, we
prayed. I asked God to give the doctors wisdom and to give me peace.

Before all of this, the specialists had told me to count Veda's movements and if I noticed less movement I needed to go in. With everything that was going on, the weight of that responsibility was very heavy and I had
asked God to make it known if there was a problem. I believe He orchestrated my hospital stay so that Veda could be born alive, which was something else I had asked of Him.

Nonetheless we were still very nervous and my blood pressure kept rising and meds were not helping. I went in on Friday and by Sunday evening they did another ultrasound and saw Veda was weak. We knew at that point she was going to need to come out.

Early the next morning I was awakened by the nurse who told me I was priority and would be the very first csection that day. This was December 21st, just a few days before Christmas and my husband and I looked at
each other with huge smiles and said, "Merry Christmas to us! We get to meet our girl!"

Going into the delivery room, of course I wasn't sure what to expect but I was surprisingly calm. I was more nervous of the needle than I was of anything else at the time, but I knew due to Veda's condition a csection
would be better for prolonging her life.

It felt like no time at all and my husband said, "There she is". I peeked as high as I could through the curtain window and saw my little babe. Hi Baby! I yelled to her. She wasn't crying but she was looking around the
room. The nicu team quickly took her to another table in the room to assess her. We were so happy.

After a few minutes the doctor came over to my husband and I and kneeled down and said, "Her heart is strong but she is not breathing on her own. We are going to try a few things but we don't know if she will be able to
survive this. I'm sorry." Then he went back over to the others.

My husband and I immediately grabbed hands and began to pray. We knew it wasn't too late for a miracle.

Shortly after, the doctor came back and said that the oxygen machine only gave her 65% which was not enough to sustain her. They were going to test one more thing and if it didn't work then they would have to stop in
order to avoid hurting her. And again he came back and said they had tried everything and she was not going to live.

The nurse brought her over and laid Veda in my arms. I told her I loved her over and over, sang to her and kissed her. I wanted to break down but knew this would be our only few minutes with her alive and I didn't want
her to only hear me crying. I wanted her to hear my voice and how much I love her. She was gasping for air and so my husband took her into his arms so he could get a moment with her as well. I could see the heartbreak in his eyes, but the time was so very special. Before the nurse took her to assess her again, she leaned Veda down and I kissed my baby one last time alive. About a minute later the nurse came back and said Veda passed while she was with us.

That is when I began sobbing uncontrollably. I was laying on the table, my womb being sewn back up, and all I wanted to do was run to my baby. We spent the next few days in the hospital cuddling Veda and making
memories, taking pictures and letting family get to know her as well. I'm so thankful for that time and have many mementos to cherish. Christmas was so very hard.

We had a beautiful and meaningful memorial for her and now as we continue to grieve her loss we also continue to thank God for the daughter He blessed us with. Although our time with her was short, we would relive it all over again if we could. We found out from blood tests that she had Trisomy 13. None of it mattered though, she is absolutely perfect to us.

We are looking forward to the day we will see her again and spend eternity together in the presence of Jesus.

Back to Trisomy 13

 

-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.