Ivy's Future Medical & Educational Needs

Hello! My name is Ivy, and here is just a little bit of my story!

My Mama and Papa found out they were pregnant with me on February 27th, 2021!

On July 1st, we had our 20-week appointment/ultrasound with our midwife. They took a lot of pictures, checked in with my Mama, and sent us all home. A couple of hours later, Mama and Papa received a call from the midwife; it wasn't good. She told them I had something wrong with my tummy and that we needed to see a specialist. Uh oh!

On July 6th, Mama and Grandma Sarah went to see the specialist at St. Cloud Hospital. They took A LOT more pictures; then they told us that I had something called an Omphalocele; an abdominal (belly) wall defect where the intestines, liver, or other organs are sticking outside the abdomen in a thin sack through the belly button. In my case, it was my intestines and my liver. They also told us I had a heart defect called Hypoplastic Right Heart Syndrome; a range of right-sided congenital heart defects in which the right-sided structures (tricuspid valve, right ventricle and/or pulmonary valve) are underdeveloped or not formed. The doctors tried to scare my Mama, telling her I didn't have a good chance and that I might be born with severe chromosomal abnormalities. The most common ones were trisomy 13 and trisomy 18; both are fatal. We did some blood testing and scheduled another appointment with my special doctors at Children's of Minnesota in Minneapolis.

On July 12th, we met those special doctors! They took more pictures of me and confirmed all of the information we got from the first specialist and more. In addition to those first two defects, I had something called IUGR (Intrauterine Growth Restriction), which means I was super small (in the 6th percentile), had underdeveloped lungs, and a Hypoplastic Nasal Bone! During this visit, we also did an amniocentesis to check my genes for any abnormalities that may have caused these defects, of which results came back normal. We learned that I would need at least three open heart surgeries before I turned four years old! Mama and Papa were so scared for me!

The doctors told us that I would need to come early and that my Mama would have to have a cesarean section for me to be born. My special team did lots of tests and took lots of pictures to ensure I was doing okay in there; I was watched closely for the rest of my time inside Mama's tummy.

On September 29th, my Mama was diagnosed with gestational hypertension. She was very swollen with high blood pressure and too much protein in her pee. We had to spend the night, two nights in a row. They sent us home on October 1st with a blood pressure cuff and orders to rest as much as possible!

Unfortunately, Mama wasn't doing well. On October 5th, we had a follow-up appointment where Mama's Gestational Hypertension turned into Severe Preeclampsia. Mama called Papa to tell him we weren't coming home and that I would be there in the next 24 hours! Mama and Papa were so scared; things were happening too fast!

On Wednesday, October 6th, 2021, at 0800, my Mama was taken back to the operating room. They got Mama all ready before letting Papa come hold her hand. Mama was shaking so bad her muscles hurt. At 0900, the doctors escorted me into this world! Mama heard my cry and quickly told the nurse to pull the sheet down so she could see me. They then took me into my own operating room, where they placed a bunch of tubes and wires, including a breathing tube. Don't worry, I got to say hi to Mama one last time before we had to go our separate ways.

After a few days of Mama and Papa traveling back and forth, Mama got to stay with me full-time! She got to hold my hand every day as I needed a lot of love and support!

On November 4th, 2021, at 0800, I went back for my first open heart surgery! They left my chest open, kept me intubated and well sedated.

On November 7th, after a long three days, I got my chest closed! Which meant that they were starting to wean all of my medications and breathing tube settings.

On November 10th (Mama's 25th Birthday), late morning, I got my breathing tube removed, along with several other lines. Mama was so excited to get to hold me for her birthday, but that never happened because, at about 1440, I had severe respiratory failure. Lots of doctors, nurses and surgeons rushed into my room. They put the breathing tube back in and started running tests to find out what was happening to me. Mama and Papa were scared they were going to lose me.

On November 12th, Mama and Papa almost lost me. My saturations started dropping again. My room filled with doctors, nurses and surgeons once again. At 2100 my Mama and Papa were taken out of the room; the doctors began compressions and placed me on ECMO, also known as the heart-lung machine. The following day, my team ran all of the tests to keep looking at what had happened. I was brought back to CATH lab, where they took a look at the Shunt they placed during my first surgery. It had clotted off. When my cultures came back, we learned that it clotted because I had a blood infection that had become septic. So, they started me on special medications to get rid of that infection. After five days, they were able to take me off of ECMO and close my chest again. I was finally on the road to recovery.

I still had a long road ahead, but I got to go home for the first time on December 28th, 2021!

On March 14th, 2022, I had my second open heart surgery, The Glenn Procedure. They also repaired my left atrial valve and tried to repair my left pulmonary vein. I recovered quickly and was back home in 10 days.

Then on March 24th, I ended up in the ER for a Chylothorax, a type of Pleural Effusion, which is fluid build-up between my chest wall and my lung(s). They placed a chest tube to drain it and after a few days, I was sent home on a fat free diet, but I got to be home!

After several appointments, images and tests, it was decided that I needed a third open heart surgery. The pulmonary vein repair didn't work. So, on August 8th, at 0600, I was brought in for yet another open heart surgery! My stay for this one was a little longer, as I got another Chylothorax, but it was caught before I went home. I have been home for five days and am doing amazing!

I have an abdominal surgery coming up soon, with the approval of my cardiologist, to get my NG removed, a Gtube placed and hopefully, my abdomen completely repaired! Then, I will need a fourth open heart surgery between the ages of two and four!

So, I have been through so much, and many details have been forgotten, but you can find my story and all the special details on my Caring Bridge site, where my Mama keeps everyone in the loop! All while staying home to care for me and all my medical needs, unable to work. So, sometimes we struggle, like when insurance gets picky and doesn't want to cover an important heart medication that costs hundreds of dollars, but Mama and Papa said they will always find a way to get me everything I need!

Lastly, I want to go to a good school, a school that will support me and all of my potential developmental needs. Mama and Papa think my education is important and want to make sure I go to a really nice school! They said they started saving, but I want to make sure they get the help they need, just like they always help me get the help that I need!

So, between my medical costs and my future education, please, help my Mama and Papa, help me! We have along journey ahead and every penny counts!

Thank you so much for all of the love and support, it truly means the world to our family!

--Love Ivy A. Maas--