Penelope was diagnosed with a heart condition in utero at my 20 week anatomy scan. It’s been a roller coaster ride ever since!

I developed high amniotic fluid so had to go on leave early and do non stress tests twice a week to closely monitor her. I was induced at 39weeks 3 days and Penelope made her way into the world! She went immediately to the NICU where she stayed a week and we couldn’t stay at her bedside overnight as there are multiple babies per room in the NICU. Her siblings were able to visit and we celebrated dad’s birthday while we were in there!

At exactly one week old she had her STENT placed to keep her PDA open and hopefully let her go home. After a scary night of her desatting she recovered well and we spent a week in the PICU! We were able to stay the night there and had our own room which was so relieving! During our PICU stay we also found out that she has DiGeorge Syndrome which is what caused her heart condition. A lot of other problems can come with DiGeorge like low immunity or problems with other organs but for now we don’t see any other problems with her!

After a week in the PICU we got to take her home for 2 1/2 months on home monitoring. Daily weights, meds and pulse ox checks became our norm, but other than that she was a normal happy baby! We prepared for her surgery to happen early February but to our surprise at the pre-op appointment the day before her surgery they told us they were postponing it since she was growing so well and if she grew more her surgery would hopefully be more straightforward. We went home, heads reeling but getting to snuggle her at home for a few more weeks. She got RSV during that time and absolutely crushed it with little response to it. Thank the Lord!

Finally her surgery day came and even though we were prepared as much as we could be and we knew everything that was going to happen in the procedure, there is nothing that can prepare you for the day you hand your 3 month old baby over to a surgeon and trust that they’ll bring her back to you. We prayed like crazy and after 9 hours, she made it through the surgery with no complications! We are thanking God and everyone who has had Penny in your prayers as we know that’s a big reason why she’s doing so well. We still have a long road ahead of us in the hospital as she continues to recover, but we are so hopeful that she will continue to blow everyone away as the fiesty girl she is!

Parking fees, food and bills continue to pile up as we go through this hospital journey so any help would be so appreciated! Thank you to everyone for all the thoughts and prayers. They mean the world to us, and to Penny