Zhoomiingwenishki's Journey: Spina Bifida & T18

My name is TahSheena Smith, and I am a mother of 4 children. I have decided to start this fundraiser on behalf of myself and my children, while my son, Zhoomiingwenishki, remains a patient in NICU at Sanford Medical Center in Fargo, ND.

I have been on unpaid leave from work since July of this year due to a difficult pregnancy and the birth and hospital stay of my son. The duration of our stay is unknown as he is being treated for several different conditions. My savings have been depleted, so proceeds will help with bills/expenses accrued while on leave and while here in Fargo, and to possibly give my children a good Christmas.

Our story:

Zhoomiingwenishki was born October 19th, 2023 at 36 weeks via scheduled c-section. He arrived weighing 4lbs 1.8oz. It was confirmed during pregnancy that he had Spina Bifida and Trisomy 18, with a known Myelomeningocele, heart conditions, club foot, and other findings. After delivery he was taken to another room to be assessed. It was decided that he would have surgery to close the opening in his back the following morning.

Closure went well, but it was a tight close because his body was small and the opening was fairly large. Healing went well for a couple weeks, but because of a small opening in the closure, he ended up needing new sutures. He has since healed up nicely.

He has several other conditions that come with both Spina Bifida and Trisomy 18, so this has been quite a rollercoaster of a journey with lots of scares. He has issues with his heart: VSD, PDA, and Atrial Flutter. So far his Atrial Flutter is being treated with medications and has been without any events since the initial one. His VSD may need a procedure to close it, however it is partially closed by a "flap" and is also now smaller in size than it was at birth, so it's possible it will continue to shrink. The PDA will need a procedure done and his doctors have reached out to UofM to see if they will do it for him. UofM only considers Trisomy babies on a case by case basis so it's a gamble to see if they'll accept him and we are awaiting their response. If they don't accept him I will have to seek Trisomy friendly hospitals out of state.

During my pregnancy they had given me options: seeing this pregnancy through, and if he made it to birth, receiving palliative care, or the option of termination. Most of the research for Trisomy 18 babies say the will miscarry, they will be stillborn, if they make it to birth, they may only live hours, days, weeks. I didn't know what I was going going to do until I was at an ultrasound and as soon as the tech put the probe on my belly he kicked or punched it and made a loud knock. I knew then that he is a fighter and I wasn't going to give up on him, I was going to fight with him. I was prepared to birth him and spend what time that was with him and love him for what little time I had with him. I wasn't told about interventions until closer to his due date. I requested to know more and they set me up with a doctor to go over all possibilities.

After the meeting, I chose for him to receive all interventions. Zhoom has been through so much in his short time, but he is a fighter and doing so much that wasn't expected of him. He is now at 6lbs 9oz and is growing every day. He knows his momma and loves his snuggles, especially his skin to skin.

Every day there are ups and downs and being a NICU momma is stressful enough as it is. I'd like to not have financial struggles be a bigger worry while here and away from home.

Thank you for hearing our story and thank you in advance ♡