Mateo
Mateo is diagnosed with Beckwith Weidemann Syndrome. BWS is a rare genetic syndrome. Hypoglycemia is a potential issue for a baby with BWS, which has been Mateo’s biggest battle since birth. He made a lot of progress at Vanderbilt but transferred to Children’s Hospital of Philadelphia to seek further treatment. CHOP specializes in BWS and Mateo has made even more progress since transferring! We can’t wait for Illyana and Mateo to reunite outside hospital walls..
Mateo was the first neighbor we got to meet in the NICU.
Meriam Delaine was born March 27th, 2020. She was born with CHD (congenital heart disease). It was found during my 20 week anatomy scan. The tech spent a lot of time looking at her heart. Lee asked is there something wrong? Me knowing the tech couldn’t say anything I told him we have to wait on the doctor. I went back by myself because Ezra was with us and I knew something was found. I went in to his office and the words ” we see something wrong with your daughter’s heart ” came out. I held in my tears until my nurse reached out to hug me and I wept in her arms 😭we had to wait for two weeks to get an appointment with Vanderbilt to get an ECHO. This was the longest 2 weeks of our lives. All I could hear God say is ” You need only be still” those word stand firm in me to this day. Finally the day was here to find out Meriam’s defects. We met with who I think is the best Cardiologist at Vanderbilt Dr. Stacy Killen. She was soft spoken and gave us ALL details from top to bottom. She was seeing a hole in the center of Meriam’s chambers. This defect is called AVSD. We we’re told throughout my whole pregnancy will have to wait til she’s born to know how severe. This was do hard on both Lee and I, but I held onto God’s words “you need only be still”. We had a few weeks left before she was born when they found the 2nd heart defect COA ( coarctation of the aorta). Which is narrowing of the aorta. We were told this one was critical but we wouldn’t know how critical until she was born. Well the day was finally here March 27th, 2020. Let me remind y’all this was the beginning of the covid pandemic. So everything was crazy! But God kept reminding me to be still He was working this out 🙌 I wasn’t able to hold her only see her through a window and then she was rushed off to get an ECHO. Hours later Lee wheeled me down to meet my baby girl. I wasn’t able to hold her til day 3. She was on what they called a “roller coaster”. They had to tweek meds and oxygen. The first ECHO showed severe COA. She had to have her 1st surgery at 11 days old. Her surgeon repaired her hole and reconstructed her Aorta. We were getting updates. The last update the nurse said everything was successful he was able to close her chest up and they will call us when she was ready for visitors. We’ll a few hours had passed and I thought something isn’t right. Maybe they forgot where they put us, because they had to hide us in a room. They were only allowing 1 parent with their child at the time, but thankfully with Meriam’s having OHS they knew we needed each other, but they didn’t want to upset other parents so they put us in a random room. I remembered them say she’ll be on the 10th floor by this time it had been 4 hours. I told Lee I’m done waiting so I marched myself up to the 10th floor asking for answers. The surgeon met me in the hall saying your girl gave us A BIG scare. The chest tubes were placed in the wrong area and fluid had built up around her heart. We had to open her back up in her room and replace the chest tubes. She now had to leave her chest open because of swelling. He told but I believe this repaired her completely. She won’t need another OHS. We we’re so relieved to here this. Well this wasn’t how it went. At a year old I started to notice her breathing becoming faster and her feet and hands were turning purple. Her Cardiologist always asked me 1st how I think she was doing before she would go over her ECHO. I told her I thought she was declining. She agreed and said there was more narrowing in her aortic valve. There was going to be another OHS. We were devastated! But God said again ” all you need is to be still He has this” at 15 months on June 15th I handed my sweet baby over to have her 2nd OHS. The surgeon performed the Konno Ross procedure. This surgery went well and we busted out of there in 4 days. Things went great for a few years. I started noticing my girl getting and staying very tired Dec of 2023. She had an ECHO planned for January. After the ECHO Dr. Killen asked how I thought she was doing i said I believe she is declining again. She said you are correct. She stated your intuition is always spot on. Her flow in her aorta was back to moderate/ severe. They planned a cath lab with ballooning to hope this would fix it, but by the same afternoon it was back to moderate/ severe. It took a month of talking/ meeting with her team to decide what our next plan of action would be. They finally decided her best option was heart transplant. I bawl as I type this because even though everything has went so well it is still so hard! My sweet girl went in on April 30th and was listed as 1a because of how critical it was to get my girl a heart. The words your girl won’t make it another year in her condition were so hard to hear… But God was working 🙌 Meriam received her heart 19 says which is unheard of… But God 🙌 her transplant was successful 🙌 she went home 11 days after receiving her beautiful heart. We will forever be grateful to the parents that selflessly gave so our daughter could live 🙌 forever thankful to our church community, family, and friends that were by our side praying along with us 🙌 forever to God who has been faithful to His word ” You need only be still” 🙌