The Heins Family

Woodbury, MN
$810.00 raised of $2,683.00
Mortgage/Rent $1,483.00
1 months
Car Payment $1,200.00
3 months
    Zariah’s Journey

    Our beautiful daughter Zariah was born at 33 weeks and 5 days by C-section. She had to be given surfactant just hours after delivery and was placed on a ventilator briefly. As weeks passed she did not give cues to oral feed and continued to have desats during tube feedings. On April 16 she had a significant spell (a spell is when oxygen and heart rate decrease) that scared everyone, she needed to have the nurse use a PPV. Since then the neonatologist have been trying to figure out what may be causing our little Zariah to not want to oral feed. After an MRI, EKG, a scope of the anatomy of her mouth through her nose, and an initial genetic test, everything came back good. Then several days later after a dose of caffeine which should decrease  her from having a spell she had two over the weekend. This led the doctors to want to do an EEG. After 2 days of assessing her they determined Zariah has encephalopathy. We were told things by the neurologist that broke our heart, but I looked at her and told her she was not God, she would not tell me what me daughter would not do and she most certainly would not take away my hope! Because of her not showing signs to oral feed, acid reflux and desats they have suggested a g-tube. This idea seems very scary but if it will help her cross the bridge to feel better and hopefully oral feed and we are going to move forward with hope. I have not gone back to my job as an infant teacher for 6 weeks, and given the uncertainty of exactly how things will unfold, I plan to take a little more time off from work. Our biggest need right now is paying our rent. If you are able and would so graciously help us. We would be so very grateful! Thank you for reading our journey and if your able to donate we would be so appreciative! Please keep our little Zariah and our family in your prayers! Thank you!

    November 4, 2023
    Zariah’s journey

    We had to come back to the hospital by Ambulance on October 30, because ZariAh had 2 spells at home. I am trying to figure out so much, with nursing care, paid parent and just caring for our family. Any support would be greatly appreciated! My journey with Zariah will continue to have up and down days but I am so grateful for all of the support, prayers, and help that we have received and most importantly each day I have with her and all those I love!🙏🙏🙏

    October 25, 2023
    Zariah is coming home!

    Zariah is coming home! After almost 7 months in the hospital Zariah is being discharged from the NICU on Friday, October 27, 2023. This transition came up quickly after almost 6 months of just waiting for this day. I completed SSI for her but was just informed 2 weeks ago that in order to get help for Zariah I would have to complete a MN Choices Assessment, which we will complete the day she comes homes but that will take time to get things in order, so I will need to stay home with her and take time off of work beginning this week. So I am hoping to get support with my car payment and rent for the month of November any contribution helps tremendously!🙏🙏🙏 Thank you for all of your support this far! We appreciate and are so thankful for all of you!🙌🙌🙌

    August 13, 2023
    Zariah’s Journey

    ZariAh smiled yesterday for the first time!💗💗💗 She has been taking the new medicine for her medical Cindy for the 16 days! We have seen so much improvement in her breathing! OH HAPPY DAY!🙏🙏🙏 So thankful for all the prayers and financial support! We are in the process of moving so any support given is so much appreciated!❤️❤️❤️

    August 8, 2023
    Zariah’s Journey

    Zariah was diagnosed with Congenital Myasthenia Gravis and we began taking medicine, this Thursday if will be two weeks. This medicine has shown increased movement for Zariah which includes helping with her muscles to exhale.🙏 On Monday her CO2 was 54, which is great! She has had some discomfort the last 5 nights with muscle spasms so trying to figure out how to help her!🙏🙏🙏So grateful for theimprovements and for each day God has given us with her! We are in the process of moving so I am asking for any financial help to go towards our rent! We appreciate all of your support and prayers!🙏🙏🙏 God is so good!❤️❤️❤️❤️❤️❤️❤️

    August 3, 2023
    Zariah’s Journey

    Zariah has had some ups and downs since our last post which I didn’t realize I didn’t submit it for review.😬 So, it didn’t get published.😞 Three weeks ago her CO2’s went up and even with increased respiratory support the medical staff had to have some difficult conversations with me.🥹 We had Zariah Baptized on the roof of the hospital on 7/22/2023. It was her first time outside and it was beautiful! On 7/25/2023 she had her EMG complete which confirmed her diagnosis of Congenital Mystania Gravis, which they do have medicine to help improve her muscle movements. It has been a week since we started the medicine and we are seeing slight improvements!🙏🙏🙏 Please continue to keep our Zariah and our family in your prayers.🙏🙏🙏 Thank you for all of the support thus far!❤️🙏❤️ We appreciate you!

    July 12, 2023
    Zariah’s Journey

    On 7/4, we have been in the NICU for three months. Our journey has had its ups and downs. We don’t have a going home date yet. We have found a safe feeding plan but not a safe breathing plan yet. Her CO2 levels continue to be slightly increased and so she had to go up on her respiratory support last week which helped to decrease her CO2 levels. They mentioned a tracheotomy last week. But don’t know if that will be needed. We have a EMG scheduled for 7/25/23 to determine if she has myasthenia gravis. It has been a really tough journey and any continued support would be helpful! Thank you for your continued prayers and support!🙏🙏 We are so grateful!🙏❤️🙏❤️🙏❤️

    June 18, 2023
    Zariahs’s Journey

    Our journey this week has been filled with peaceful moments and a relaxing bath day. Zariah continues to be weaned off respiratory support and is now off the cpap machine and just on high flow. She was introduced to a formula to help increase her nutrient intake to help her continue to grow. She did develop a granuloma next to her G-J tube site that we began to treat on Friday. I am so thankful for the good moments over the last 12 days! Continued prayers for our sweet little Zariah!🙏🙏🙏 Thank you for your continued support and financial gifts!🙏❤️🙏❤️🙏

    June 9, 2023
    Zariah’s Journey

    Since her G-Tube surgery on May 24, 2023, things have been hard but once the J-Tube was placed on June 7, 2023, life has been so much better! No more spells, throwing up or lots of mucous. It is so nice to see Zariah peaceful after so many days of struggling!🙌 Thank you for your generous gifts thus far and we appreciate continued support to meet our funding goals!🙏Thank you so much!🥰

    June 6, 2023
    Zariah’s Journey

    Zariah’s Jtube placement was a success and she can’t stop smiling in her sleep.🥰🥰🥰

    June 6, 2023
    Zariah’s Journey

    This photo was taken last week and is probably one of the hardest photos for me to look at but it captures Zariah’s journey last week. Last week on Monday, Zariah began a four day journey of very difficult events. Monday night she began to develop a lot of mucous and was throwing up a lot and after 1 day of this it started her trend of spells. On Tuesday night she had 4 spells. Up until last Tuesday she only had 4 spells over almost a 2 month period, our entire stay in the NICU thus far. From Wednesday to Thursday she developed a cough, something she never has had since she has been born. It was a very explosive cough that would cause her face to change color and a lot of mucous to be expelled. On Friday morning when I called for an update, we had a new nurse, one who has never cared for Zariah. I had asked the hospital staff several times in the past that we have continuous care for Zariah, so we would be with nurses who knew Zariah and not to have anyone care for Zariah, who never worked with our family. So my phone call Friday morning caught me by surprise. I never talked to this nurse before. The nurse asked for my phone code, I have been there 2 months and no one has asked for my phone code because they all know me. So I told the nurse I would be there in 10 minutes and I will just talk about her night when I arrive at the hospital. Upon walking in Zariah’s room, the nurse entered her room. I asked him how her night was, he said, “She had several spells, was unresponsive and needed a neopuff”. I literally lost him at several spells. I was outraged! I have told the nurses, wrote it on a note in her room to call me with any changes. Communication has been my biggest battle in the NICU, so I was outraged! How could my daughter have such a hard night and morning and I was not notified, so if I wanted too I could come up and be with her. I demanded they find a Jtube to place for Zariah to eliminate all this hardship for her, since the Jtube would allow her food to go into her intestines instead of into her stomach which is what causes the acid reflux, mucous, and has led to her on Friday having 10 spells to where she became unresponsive and needed a neopuff for two of her spells. After Friday they placed an ivy for fluids and nutrition to pass into her through an ivy and stopped her feedings through her Gtube. They checked her for infections. Everything came back clear. We have had the weekend to recover and she has not had any spells. Praise God!🙏🙏🙏They had located a Jtube on Friday after I demanded that they have an answer of when they would have one. We had waited a week and half for an answer about locating a Jtube, because we were told they were on back order. Over the last week and a half, we have had four days of recovering from the anesthesia she was given for her surgery, then we spent fours days battling vomit, mucous, desats and spells and then three days recovering with just ivy fluids. All this could have been limited if they had kept her on breathing support longer post surgery and if they would have had a Jtube to place on her surgery date, May 24, when she was suppose to receive a G-J tube but only received the Gtube because the Jtube was not in the kit. Radiology was suppose to place the Jtube yesterday. But 5 minutes before we were suppose to go down to have it placed, they called Zariah’s nurse and said they couldn’t do it and we would have to have a GI doctor place it which meant we had to go to the OR. The hospital staff told me for three days leading up to the placement of the Jtube yesterday, she would not need anesthesia. When we entered the OR room we were told by the GI doctor that they would place it through her JPEG, which she would not need anesthesia for the placement. Then the anesthesiologist came in and said that she would need anesthesia because they were going to do an endoscopy. This was not the plan that was discussed for three days leading to to the placement of the Jtube. I was outraged! We would not even be in this place if on the surgery date they would have completed what I signed a consent form on 5/23/23 to have completed. So yesterday we postponed the placement of the Jtube in the OR and are planning to have it placed in the Radiology department today at 11 am. Continued prayers for our sweet Zariah and any financial gift would be so much appreciated!❤️🙏❤️🙏❤️ Thank you for taking time to read our family update.❤️❤️❤️