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Posted by Project Sweet Peas | 9:01 PM |
Here are their stories:
Kiernan was born at 36 weeks and immediately taken to the NyICU (nursery icu) which we knew was going to happen. We had toured it only 2 days before his birth and thought we would actually have at least 2 more weeks to prepare but medication was no longer stopping contractions. At 32 weeks inutero Kiernan was diagnosed with CDH and a chromosomal defect called klinefelters syndrome and the long road began. Trips twice a week for NST and amnio counts which was nice to see my baby all the time but did get old and he began to hate it as well. Once he was born it was about 14 hours before i got to see him in person for the first time and i could not hold him yet. He was on all kinds of IV's and an oscolator plus all the monitors. We quickly learned how to read them and what went where and why.. The first night nurse made him a sign with his name on it and decorated it. In fact each child in there had a personalized hand made sign with there names. It was a small but thoughtful thing and it was heart warming. It really gave us the sense that these nurses were special. St.Joes where he was born was actually our 3rd hospital. We started at one hospital that thoguth they were going to have to deliver a 31 week preemie that only had a level 2 nicu and went to a hospital with a level3 nicu and once the cdh was found we were transfered to St. Joes since they were the ONLY hospital in the valley that could deliver babies and do ECMO if needed. Only 1 other hospital can do ecmo and they only take transfers and dont deliver. Kiernan was intubated the second he was delivered and it was a c-section for 2 reasons 1 the cdh and 2 i had already had 2 prior c-sections. My wonderful husband took a picture of him and brought it over to me so i could see him since he was taken right away to Nyicu. He was born not breathing anyway but they had already planned on intubating so they were prepared. The hardest thing i ever had to do was go in there the first time after he was born and see him hooked up to everything and sedated and know that I couldn't pick him up and hold him. The nurses were so nice and answered all of our questions and comforted us in whatever way they could. Kiernans first night was rough and he had to be put on heart medicines and needed the oscalator and it was just so hard. The surgeon came the next day and did there x-rays and ultrasounds and stuff they needed and started to prepare for whne he might have surgery to repair the cdh. They set goals and my little guy started to hit them ALL. To the amazement of the staff and docs he was switched over to regular ventilator 2 days later and then surgery was set for the next day. I got to hold him for the first time the day before surgery. I begged them to let me hold him. I did not know what was going to happen but wanted to at least hold him once while he was alive in case he didnt make it. I wanted him to know his mommys touch. He was still on all the stuff and it took about 15 minutes for them to get him ready so i could hold him but it was awesome yet very sad at the same time. He had surgery the next day and did great. I ended up staying an extra day due to spinal headaches from not resting enough after the c-section. It was so hard to leave without him. We went back to see him only hours later I couldn't stay away. Within a week he was off the ventilator completly and getting closer to starting feeds. He was about a week old before we could hold him anytime and put clothes on him and then at 2 weeks old we got to feed him. He was moved to intermediate care right around two weeks when he was down to just the picc line and almost up to full feeds. A couple days in there and then i got to breast feed him. The most wonderful thing in the world and he was a champion feeder. He was born August 20, 2008 and went home as healthy as a cdh baby could be on Sept. 10, 2008 -- His originally scheduled c-section date. Our experience with the Nyicu was great and i just want to be able to give support to other parents going through what we did. We love St. Joes and it is still a second home in a way seeing as we still go there for follow ups and specialist at least every other week. I hope other parents can have a positive experience like we did at such a trying time in there lives.
My name is Danielle and Im 25 years old. I have 4 children and am married to an awesome husband named David! My kids are Cati who is 7, Keli is 5, David Jr. is 3 and Vincent is going to be 2 this November. My husband and I have been together for 7 yrs. Before becoming a stay at home mommy, I worked as a medical assistant for a neurologist in Tempe, AZ. I love being a stay at home mommy just some days are harder than others! My long term goal in life at this point is to become a nurse. I want to specialize in NICU. I have wanted to be a nurse since my grandpa got so sick back in 1998. I will one day reach my goal and be able to help many families in the NICU differently then the way I do now. I want to be part of the amazing group, Project Sweet Peas because of Julie, Kory and Kiernan. They have inspired me and I want to be able to help other families with babies that are in the NICU for what ever the reason. I want the parents to know that they are not alone and that there is help/support to turn to. Its wonderful to know that there is so much support for NICU families.