Keeping Up With Paige!
We’ve always planned on having children. We planned on what the baby’s name would be, we picked out cute baby clothing, and we planned what the room would look like.
We thought we planned for everything. However, we didn’t plan on staying at the hospital for over 180 days. Paige was born with an omphalocele – an abdominal wall defect which causes the internal organs to develop outside the body in a clear sac. In addition to having an omphalocele, Paige was also diagnosed with pulmonary hypertension and a heart condition known as an ASD (Atriel Septum Defect). During Paige’s stay at Hasbro Hospital, her condition would fluctuate. One day things would be great, and one day things wouldn’t be. Just as things started to look brighter, Paige required a tracheostomy as well as 24-hour ventilatory support to assist with breathing.
Several days after Paige was born a Social Worker approached us a asked us if she could make a referral to the Ronald McDonald house on our behalf. At this point we knew we would not be able to leave Paige’s side, so we accepted. We took a tour of the residence and we were blown away. We instantly felt comfortable. We felt like this was somewhere we could rest. We felt like this was somewhere we could escape to, even if just for a few hours. We instantly felt connected to the staff and volunteers at the house. Their genuine concern for everyone in the house and for their well being was so refreshing and much needed. Being able to connect with the other families in the house served as a support group. We all had similar stories. Different experiences, but a familiar road. We supported each other. Cried when there was bad news and cheered when there was good news. Everyone was there for each other.
Being able to stay at such a warm, loving, a welcoming house is one of the biggest reason we were able to make it through such a tough ordeal. Being able to stay a short walk from our daughter was comforting, those late night phone calls are never pleasant ones. Being able to have a warm home cooked meal, a hot shower and a soft bed any night of the week was priceless. Feeling some type of “normalcy” in such a confusing and stressful time in our lives. We were all treated like family – and for that, we will never be able to thank you enough!
Today, Paige is doing so well!! To date, Paige has had 13 procedures, including open heart surgery, with still more procedures to come. We were recently told that Paige’s heart has TOTALLY healed up and she no longer has any traces of pulmonary hypertension! Paige still has the trach but is only on her ventilator at night while sleeping! Paige’s personality is shining! She’s running around the house, making a mess out of everything, and doing her best to try and talk!! We are so proud of her! Even though our battle is not over, we couldn’t have predicted how well Paige would be doing today. We are ready to face each day as it comes. We are very thankful for being where we are now, and we owe a large part of that to the Ronald McDonald House!