First Blog ~ 7 Months old

Hi everyone! I guess we had better catch up on my story. A year ago on april 1st of all days we found out we were having multiples. At first the doctor said he see's 3 for sure, but also two other spots so it could be quints. I knew there was no time for extreme panic so I instead went into education mode and started to find out everything I could about multiples. When I googled quints it brought me right to blogspot where I met the Wilkinsons. I wrote them a letter in panic and they took the time out of their day to send me a few links to helpful websites. A week or so later I found out it was only triplets. By then I realized how much less my life would change, so triplets didn't seem so hard. With quints we would have probably went to a doctor out of state because the hospitals locally dont have the experience of anything over triplets. We also would have had to buy a new house, a van, etc. The pregnancy went very well for my wife. She never really ran out of energy and was rarely in extreme pain. She also worked all the way up to 26.5 weeks. We had the kids at 27 weeks missing our target of 36. The boys were on the vent for minimal time and had very few problems throughout their hospital stay. Our daughter had a different story. She had to get transfered to a different hospital because ours didn't have a pediatric surgeon. I wish I could go back in time and tell them to take her to St. Louis Childrens hospital but instead we picked the closer Columbia Regional. She had her PDA ligation without any problems but when we told the staff we were going to move her back to the original hospital, things changed. We did not want to stay at Regional because everything about it seemed to be ran poorly. They would let kids oxygen saturation sit at very low levels for long periods of time while they sat in the hall at a computer. When she would have complications sometimes we couldn't find any staff to come help. There were hundreds of issues, it almost seemed like they tried their hardest to do as little as possible just to get the day by. Once the hospital realized we weren't staying they seemed to put her on a "back burner". She kept having lots of sputum and I asked a nurse if they were culturing it. Her responce was "No..........Do you want us to?" I replied yes so she did and found pnemonia. For a month straight on the jet ventillator and 70-100pct oxygem levels the doctors only came in once a day to do rounds not changing much of anything except her antibiotics and tpn levels. They were just trying to get her good enough to transfer back but somewhere along the way they forgot about her. They would try about every 3-4 days to feed her a couple ounces but when she didn't digest them right away they would pull feeds and repeat. Every day got worse. My wife would be crying because our daughter kept getting worse and the doctors would ask her why she was crying and tell her she should be on anti-depressants. After realizing that no one at this hospital knew what they were doing I started to research online things you could do for someone in my daughters condition. It turns out there were multiple things they weren't trying that they SHOULD have been. Including Nitric Oxide, breathing treatments, Reglin etc. We forced a care conference and it turned out to be a joke. We expected lots of experts in different fields to be in there and problem solve. It turned out they just wanted us to ask questions so they could blow smoke up our backsides with a smile and not really answer anything. We caught the doctor in several lies. She said babies my daughters age couldn't have bronchial spasms which every expert since then has since said yes she can. She said Nitric Oxide could cause cancer, which at the time I didn't realize she probably meant the 1000 parts per million from cigarettes, not the 5 PPM used in hospitals. Since she was so answerless the next day she asked if we wanted to transfer her to the old hospital. This was the hardest decision of our lifes by far. They would have to bag her since there was no jet ventillator on the ambulance. Since the doctors put no effort into finding out what her "episodes" were throughout her stay in the hospital, her condition was degenerating everyday, and they refused to put her on sterroids which she should have been on long ago, we decided to make the move risking her life but hoping to save it. The move was scary. Once in the other hospital they put her on Nitric, gave her Reglin, gave her breathing treatments, put her on steroids and fed her. She ate 10cc's which was more than the entire stay at Regional, she got of the jet vent and onto the regular one and her oxygen need went down by around 10pct. All this in the first HOUR at the other hospital. Her condition got better a little everyday. As it turned out she didn't even have pnemonia anymore, Regional just didn't take the time to look at her carefully enough to know her high white bloodcell count was because of being on the ventillator too long and anyone intibated has gram negative rods. I skipped lots of mishaps and neglect that happened at Regional because it happened every minute she was there so it would take me a month to type it.
The boys ended up coming home after 2 months in the hospital, our daughter 3 months. The boys dont have very many long term major conditions. They are a little behind because they are preemies but thats normal. Caden has a flat spot on his head and mild torticollis which is getting better. Olivia however has had an onslaught of medical problems since coming home. The kids are awake so I'll get into that the next chance i get to get on here. Thanks for your time.