Nile's & Jackson's medical expenses

Afton Hunziker is organizing this fundraiser.

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As many of you have become aware, Brian and I had our amazing and beautiful baby identical twin boys much earlier than expected. Nile Parker Hunziker (1lb 5 oz & 13 inches long) and Jackson Bentley Hunziker (1 lb 11 oz & 13.25 inches long) were born on February 20th at 26 weeks and 3 days old. (Pictures to follow...and yes they look 100% like thier daddy...mini Brian's).

Prior to birth, week 17, we had learned we were having twins and they were identical and had Twin Twin Transfusion Syndrome (TTTS). This is when one twin donates blood and amniotic fluid to the other twin. One will get too much and the other will not get enough. I was monitored weekly with high-risk doctors in Kansas City at Saint Luke's hospital. Throughout the pregnancy the TTTS remained stable. I made it to the third trimester and my doctors thought we were "out of the clear" and were hopeful I would be able to carry until at least 33 weeks. On week 26 we rapidly had a huge change in the TTTS, one twin became fluid less and the other had far too much. I was placed on bed rest in the hospital while my Perinatologists called across the nation asking what to do from other Perinatologists. There is a procedure that pregnant mothers with TTTS twins can get; a laparoscopic laser procedure where they divert the blood/fluid supply evening it out back to normal parameters, however, this procedure is not done after 26 weeks. Since I was 26 weeks and 3 days, I could not have the procedure. My doctors decided to treat the condition with amniocentesis reductions. I had two and during the second one, Jackson's heart was overloaded with fluid and his heart rate began to drop very quickly. I was rushed into an emergent C-section and the twins were delivered all in 15 minutes. Nile was born first at 12:00PM and Jackson followed at 12:01PM. Immediately a team of Neonatology, Respiratory, Neurology, Nurse Practitioners and Nurses worked to revive the children. It took approximately 20 minutes to revive Jackson and approximately 10 minutes to revive Nile. Jackson became acidotic and needed two bicarb treatments for revival and Nile only needed one to stabilize.

Since birth, these two twins have been through much more, as if TTTS and premature birth were not enough, the doctors discovered other major heart wrenching issues individual to each boy. It was discovered Jackson had a grade 4 brain bleed in the left hemisphere and a grade 3 in the right and developed hydrocephalus, which is all due to his premature status. Nile developed an intestinal perforation day 4 of life at the duodenal-jejunal junction and needed immediate abdominal surgery to suture the perforation back together. At Saint Luke's Hospital, they do not have Pediatric Surgeons so Nile was transported immediately by ambulance and a team of 5 people to Children's Mercy in Kansas City. Thankfully he was just down the street from Jackson. Jackson remained at Saint Luke's hospital for the rest of the week, until it was discovered he developed hydrocephalus and needed surgery too. His surgery consisted of placing a port in his head to drain cerebral spinal fluid that was backing up due to the brain bleed. Three days after Nile was transported to Children's Mercy, Jackson had a transport team come get him and transport him, by ambulance, to Children's Mercy too. We are thankful both boys are in the same hospital and also sharing the same "pod" so they are side by side.

Both children have been on ventilators for the first few weeks of life. Currently they are on Ram cannula, which is less invasive high pressure ventilated oxygen. Due to the perforation, Nile was not able to have breast milk until he was three weeks old as they were waiting for the perforation to heal. He has finally started very small (1mL) feedings. He gets them on and off so that they can "prime his gut" (so to say) until he starts having regular stools and they know that his intestines are able to pass the feedings normally. Nile is (and has been since birth) on total parenteral nutrition to maintain his nutrients. Jackson has been able to feed for the past week and a half and will soon be on full feedings of breast milk and no longer on parenteral feedings.

As for Jackson’s hydrocephalus, he gets daily checks by his Neurosurgeon. These checks consist of evaluating his head circumference and palpating his head to check how full of fluid it is. He gets fluid removed by his port every other to every third day. He will continue to have this done until the blood from his brain bleed dissipates to nothing and the cerebral spinal fluid becomes clear again. This could take weeks to months and at that time he will be a candidate for a shunt to be placed to drain the spinal fluid so they don't have to tap his port inorder to drain it. We will not know of what type of damage the bleed has caused until he develops and hits milestones. He will get an MRI when he is much closer to term and this will show soft tissue damage just not he extent of the damage. His neurosurgeon has explained to Brian and I, all children are different with brain bleeds and he could develop normally where other parts of his brain compensate for what is damaged or he could have developmental delays, cognitive delays, deafness, blindness, or motor developmental issues. No one will know until he is older and does or doesn’t reach milestones. As for Nile his prognosis remains good as long as his perforation doesn’t cause issues with feedings. Neurologically/developmentally his is at risk for some issues due to being acidotic at birth, however he is at less risk because he responded so quickly to the bicarb. treatment at birth. Our next step with Nile is getting him some more frequent feedings and gaining weight. Both have a goal of working toward weaning a little more off their ventilators. Both children are at risk for Bronchopulmonary Dysplasia due to being premature and on a ventilator so long. They will be monitored and have testing when they are closer to term.

My initial due date was May 25 and the Neonatologists at Children's Mercy have told us that Nile and Jackson will not go home prior to this date, due to their extreme prematurity and their individual medical issues. I am not living at home during these months, but rather I am staying across the street from Children's Mercy at the Ronald McDonald house. Brian has gone back to work and he drives back and forth from Saint Joseph, which is about an hour away, daily. We cannot wait to bring our twins home and pray daily they will have a full recovery without complications. We believe miracles happen everyday and do pray for them daily. The first few weeks were extremely tough for us. Some days we were uncertain if our children would make the night and other days it seemed things were great and there were no worries. These two twins are so strong...one would never expect a tiny little 1 lb 5 oz and 1 lb 11oz child could survive through surgeries, anesthesia, early birth, ventilators, IVs, PICC lines, Arterial lines, etc, but they surprise me daily how strong they are. Everyday when they squeeze my finger, as I hold them, it lets me know things will be ok; we just have to give it time. The love a mother and father have for their children is just simply amazing; something that we never knew existed until we had Jackson and Nile. These babies have brought Brian and I closer together as a couple and it is an amazing feeling we both have as we are learning to be parents!

Many of you have asked us what you could do to help and we have not had an answer aside from "please pray for us and our family.” About a week ago, one of my nurses recommended this website to me and said that I should start a fundraiser for medical expenses, gas, food, etc for the twins and Brian and I. I looked into the site and asked around about it. There are other families here at the Ronald McDonald house that have too used it and expressed how it has helped them to fundraise for their childrens' medical expenses. Brian and I don't like to ask for help much, but these babies are now literally our "million dollar babies" and we could use all the support we can get. Their medical bills will be substantial through out the next few years of their lives while they work through to achieve their milestones and receive all therapies (OT, PT, ST, etc) they need for acheiving these. Thank you so much for your help, prayers and support...we cannot express enough how much we appreciate all everyone has done to help us through what has seemed to be a nightmare that we never expected to happen. We are so happy our boys have almost made it to one month of life and cannot wait to see what the future holds for them and us as a family. Please share our story and Go Fund Me Website Link with your friends/family on facebook.