Monday, November 29, 2010

Monday, November 29, 2010 7:21 PM, EST

Tori had a follow up appointment today with her eye surgeon. I don't know if I should laugh or cry......

First I start asking about her NG tube (which wasn't in because she pulled it out earlier today and I figured they would want it out to look at her nose) and the surgeon, who happens to be the man who pioneered the surgery that Tori had, looked at me and said "They should have NEVER put an NG tube in a child who had nasolacrimal reconstruction. I would have never done the surgery if I knew she needed an NG tube" just another example of too many cooks in the kitchen....why the heck didn't someone, ANYONE, know that they should have never replaced her NG tube and why didn't anyone who saw her after surgery mention it, she was seen by ophthalmology almost every day for 2 weeks after surgery and by numerous other doctors.

Second, they want to remove the stints in early March...fine...right....NOPE......since her age will be under 60 weeks gestation, the simple OUTPATIENT surgery is going to be INPATIENT...she is going to have to be READMITTED TO THE HOSPITAL......

At least everything looks fine according to the surgeon and the staff at the office was wonderful about immediately getting us back to an exam room to wait rather than having us wait in the crowded waiting room full of coughing patients! Even though we still had to wait an hour to be seen, at least we weren't being exposed to a host of germs!

BTW, it is kind of weird to hear an entire crowded office say "so this is the little lady we have heard so much about"...apparently Tori and her surgery were the talk of the office, I guess they usually don't see or operate on patients so young!

Like I said, I don't know if I should laugh or cry!

Saturday, November 27, 2010

Saturday, November 27, 2010 4:21 PM, EST

Tori went to the ped this morning. I forgot how long it takes to get out of the house with a newborn, especially one that has feeding issues, since you never want to put a hungry baby in the car! We were running about 20 minutes late, good thing that our ped office is really laid back on Saturday (mainly just sick child visits). Thankfully they didn't make us wait in the waiting room at all and took us right back to the exam room.

She has gained 5 oz since being discharged so they are thrilled! They kept telling us how great she looks and how beautiful her scar on her stomach has healed. They want to see her back in a week or 2 for her 2 month check-up, to get her "on schedule" but I am not sure, we have 2 follow-up appointments at the hospital in the next 3 weeks plus and appointment with the eye surgeon, I think having her in so many waiting rooms probably isn't the best of ideas. Going to have to really think about that one! We may wait and go back in at 4 months instead unless she gets approved for the RSV vaccination, then we will have to go back every month.

She took almost all her feeds yesterday completely BY MOUTH, but was lazy today at her last 2 feds!

She has discovered her voice since getting home from the hospital, she lets us know what she likes and doesn't like and cries to get our attention. I think she realizes that everyone here jumps if she fusses, very different from the hospital and nurses who were too busy to drop everything an pick her up!

Friday, November 26, 2010

Friday, November 26, 2010 4:44 PM, EST

Getting used to being home! Tori took ALL of her 3 AM, 9 AM, noon and 3 PM feds today by mouth! Hopefully this a pattern she will be repeating! I love being able to sit on my bed and snuggle with her as she eats! Hopefully soon we can transition to the breast!

William was so funny when we first came home, he kept looking at Tori's feeding tube and after about an hour, he asks me "so who has to cut up the food small enough to go in there?". I couldn't help but laugh!

Sophia is becoming the most excellent of diaper changers! She even manages the poopiest of diapers with very little stress! She really has been waiting FOREVER to have a baby sister to take care of!

Hope everyone had an amazing Thanksgiving, ours was the best ever! Only bad thing, my grandson was sick so he couldn't spend the day with us because we don't want to expose Tori to ANYTHING! If he had been there, it would have been perfect!

Wednesday, November 24, 2010

Wednesday, November 24, 2010 7:00 PM, EST

Thanksgiving came early for the Riesenbergs......

Exactly 8 weeks to the day from her arrival and 4 days before her scheduled delivery......


Wednesday, November 24, 2010 8:38 AM, EST

The video swallow test showed NOTHING! She even managed to spit up at the end of the test and nothing refluxed into her lungs! It was a bit unnerving, she has the test at 8:30 AM and our phone rang befor 9 AM, we both thought there must be a problem, but no, it was just Allison calling to tell us the "good" news! Their conclusion is that she just can't coordinate falling asleep and eating and breathing at the same time and that she also can't coordinate screaming and starting to eat at the same time. Unlike a normal baby who is quieted when the bottle enters their mouth, she breaths in when she gets the bottle if she is overstimulated or upset, so Tori can only eat when she is pefectly calm! Certainly a challenge for a hungry almost 2 month old!

Tuesday, November 23, 2010

Tuesday, November 23, 2010 5:31 AM, EST

Tori's video swallow test is at 8:30 AM this morning. Both speech and OT will be going with her to the test. Hopefully we will get the results later today.

They actually said the words "go home" during my visit yesterday. I won't believe it until we are walking out of the hospital, but it appears there is an end in sight. Of course things depend on the results of the video swallow study and her not having any brady episodes, but they are ordering home supplies for us and making follow up appointments for us!

I placed my 2nd NG tube yesterday during my visit! Mostly thanks to my own stupidity, I caught her tube on the side of the tube when I was getting her out of the bath and then when I laid her down, she started sneezing and the tube came out even further, so we pulled it and placed a new one. Thanks to some tips from her nurse, the placement went even more smoothly than the last time, she taught me to bundle her arms with a blanket and to have her suck on a pacifer while placing the tube!

I skipped the weekly parent meeting last night, mainly because it was a topic we have already attended two times, guess that says we have been there TOO LONG!

Sunday, November 21, 2010

Sunday, November 21, 2010 8:28 AM, EST

Tori was wide awake during our visit yesterday, full of smiles and looking around everywhere. She did well with her feeds, in that she didn't brady, but she is still not taking much volume by mouth! She managed to spit up all over her nurse Christina, to the point that she had to go and put on new pants and wash the ones she was wearing! I guess that beats getting pooped on, which is one of Tori's other tricks for her nurses!

We have heard that the swallow test is scheduled for Monday but no one has confirmed a time for it.

Jay met the new doctor for the first time yesterday and he laughed as soon as he left because I had mentioned about him touching my arm every time he talks to me and he did the same thing to him. Of course he had no answers for us, but at least he is pleasant enough to deal with.

The hospital is starting to look a lot like Christmas, trees and decorations up everywhere! Who would have though when we entered the hospital on that warm fall day in September that we would ever be around to see it transformed into a winter wonderland?

Saturday, November 20, 2010

Saturday, November 20, 2010 7:05 AM, EST

I spent most of the day with Tori yesterday. When speech therapy fed her at noon she had a brady episode, so she reset her clock once again, 5 more days at least until we can bring her home. Apparently this isn't only frustrating me at this point, but her therapists and doctors as well. They are sending her for a swallow study on Monday (or Tuesday if radiology is booked Monday) to see if there is some reason that she keeps having these episodes while she eats. The study might show a problem or it might not, it depends on if she has an episode during the test or not, and even if she has an episode, it still might not show anything. Prayers would be appreciated, that if there is an issue, that the test will show what is going on.

I think I like her new doctor. Although I have to laugh about something he does. Each time he talks with me he touches my arm. It reminds me of an episode of the show "The Secret Life of the American Teen" (ok, yes, I admit I watch it) where one of the main characters, Grace, has returned from a summer camp for kids that want to be doctors and she has been taught to "connect" with patients by touching them. At least he seems to value my opinion and my concerns and he doesn't say "I KNOW WHAT YOU ARE GOING THROUGH...." (man am I sick of hearing that)......during every conversation!

Tori stayed awake from 2:30 PM and was still awake at 6:30 PM when I left the hospital. After being sleepy most of the week, she seems to now like being awake! It was great to be able to interact with her for such a long time!

Friday, November 19, 2010

Friday, November 19, 2010 9:07 AM, EST

Tori looked and acted better yesterday evening when I was with her, although still not completely like she usually does, but at least she was full of smiles for me and awake, something that hasn't happened the 2 previous days. Throughout the day her poop transitioned back to what we think of as "normal" for her....the doctors have no explanation for any of it other than them agreeing with me that maybe she picked up a virus.

Right around her 3 PM feed, she sneezed and apparently did something to the stint placement in her left nostril, you can now see the bottom of it. They called in opthomology and they had no idea so they called the reconstructive people and they are just going to watch it. It doesn't seem to be bothering her at all but it is a little worrysome since I would be afraid to place an NG tube on that side because of it, hopefully it doesn't happen to the other side as well!

She once again had a DIFFERENT nurse, even though her primary was working. She actually ended up with 3 different nurses throughout the day, 3 people that had never worked with her before, when all the discharge coordinator and doctors keep saying is that consistency is the key to getting her eating and home. Someone seriously needs to look at the staffing at that hospital. It is hard for me to believe that this is the 3rd best newborn intensive care unit in the entire country. I really worry about what the 6th best or 10th best or 200th best hospital must be like!

Wednesday, November 17, 2010

Wednesday, November 17, 2010 7:43 PM, EST

Prayers please!

I just got home from the hospital, Tori has had a change in her poop, it is orangish, bloody and mucousy....they did an abdominal x-ray and can't see anything that indicates a problem and she isn't running a fever, but obviously something is wrong. She really isn't acting like herself, she is very, very sleepy and hardly taking anything by mouth. I spend most of my time at the hospital today crying with her in my arms or in the breastfeeding/pumping room crying. I am not dealing with this very well at all.

Wednesday, November 17, 2010 11:14 AM, EST

I spent a few hours with Tori last night. She took 45 ml for me at 6 PM and I gave her a bath after she had a HUGE blow out diaper! She LOVES getting a bath!

They called this morning with her update, the only change, they have once again UPPED the amount they are trying to feed her. She is now at 80 ml every 3 hours! We are NEVER going to get home if they keep upping what she has to take in!

Going to go down and visit sometime later today, haven't decided at what time yet, we try to plan around traffic so I don't want to be heading there or heading back during rush hour!
Two Upcoming Christmas Events:

Yes, I know Thanksgiving is still a week away, but I found the info on two local events the kids and I enjoy and I thought I would share them!

Living Nativity:

This is one of our favorite Christmas activities to attend as a family and it really focuses on the true meaning on the season. I don't know which day we will attend (depends on the kids basketball schedules and the weather) but we will definitely go. I tend to like to go earlier rather than later, but that is just me. Definitely dress for the weather!
9th Annual Presentation of "The Living Nativity" Loveland United Methodist Church 10975 S Lebanon Rd. Loveland, OH 45140 Saturday December 4th and Sunday December 5th from 4:30-7:30 PM
An outside guided walking tour through 21 stations featuring a dramatic presentation through drama and song of the sotry of Jesus' birth. Live animals, including donkeys, goats, sheep and alpacas! Hot cocoa and cookies will be served inside. This is our free gift to you! Sign language interpretation available at Sat. tours.

Ohio National's Victorian Holiday Village:

This is something else the kids and I went and did last year, the trainrdie in the parking lot was HYSTERICAL, I have never been so "scared" on a train in my life, of course the kids LOVED it! Again, this is outside, so you have to dress for the weather, but there was a great opportunity for photos with santa (it was a 5x7 print and FREE and santa was decent looking)....probably more for the 10 and under set, although I took Grant and Jacob with me last year......I will most likely go on the Thursday it is offered......and get there close to when it starts.....we forgot our canned goods last year and no one said anything.....but I plan to try and remember to bring something this year!

From their website: Back for its ninth year, Ohio National's Victorian Holiday Village is a holiday tradition for Greater Cincinnati families. Since 2002, nearly 20,000 guests have visited the annual free holiday event and enjoyed its complimentary cocoa, cookies, free 5x7 photos with St. Nick and more. This year, Ohio National's Victorian Holiday Village will be open the following evenings:

  • Friday, December 3 from 6-8:30 p.m.
  • Saturday, December 4 from 5-8:30 p.m.
  • Thursday, December 9 from 6-8:30 p.m.
  • Friday, December 10 from 6-8:30 p.m.

The lights, child-sized houses decorated with holiday scenes and family-centered holiday fun takes place over a four-night period in early December on the grounds of Ohio National Financial Services at the intersection of I-71 and Pfeiffer Rd. Staffed by Ohio National associates who volunteer their time, the Victorian Holiday Village continues the company's commitment to community outreach and service.

Returning this year is the Century House. A miniature scale replica of a Habitat for Humanity home, this Victorian Holiday Village home celebrates Ohio National's 100th anniversary commitment to build 10 new Habitat for Humanity homes in the Cincinnati community over the next five years. Ohio National announced this gift, the largest ever one-time donation to Cincinnati Habitat for Humanity, in 2009. To date, two homes are complete and two more are nearing completion (with November dedication dates pending) in Cincinnati's Avondale neighborhood.

Back by popular demand will be the ONtime Express, a miniature train that takes guests from the parking garage to the Village, and balloon artist elves. The Village will remain lit throughout December, but the refreshments, photos and entertainment will only be provided during the four nights above.

While admission to the event is free, all guests are asked to bring a nonperishable food item (no glass containers, please), which will be donated to the FreestoreFoodbank. Since 2002, Ohio National associates and Village guests have donated nearly 16,000 pounds of food to the FreestoreFoodbank. In addition, Ohio National will make its seventh consecutive donation to the FreestoreFoodbank to mark the opening of the Victorian Holiday Village.

Ohio National's Victorian Holiday Village will be open rain or shine. Please note that due to the outdoor terrain and gravel path, the Village is not handicapped accessible. On-site covered parking for 800 vehicles is available. Ohio National is located at the southeast corner of the Pfeiffer Rd. (Exit 15) and I-71 interchange. Pfeiffer Rd. is the first exit south of the intersection of I-71 and I-275. For more information, please visit

Tuesday, November 16, 2010

Tuesday, November 16, 2010 3:09 PM, EST

Is this ever going to end?

I called to talk to Tori's nurse a little while ago and she had 2 brady episodes today while eating, once at 6 AM and once at 9 AM and then she refused to take anything by mouth at 12 PM. After doing well since noon on Saturday she is taking steps backward. So the clock is once again reset......I don't know that we are ever going to make it 5 days without a brady episode.

Monday, November 15, 2010

Monday, November 15, 2010 7:34 AM, CST

I placed my first NG tube! It was really VERY EASY (ok, I was a little nervous, but it was EASY!) and I am confident that I can do it! The amazing thing that was since they inserted the tube last Sunday after her surgery, she has had a 6 cm difference in the depth it needs to be inserted which means she is GROWING, aparrently like a little wildflower!

We watched the CPR video, so another discharge requirement checked off our list!

Tori took 21 ml and 40 ml for the two feeds we were at the hospital for yesterday. Jay fed her both times, focusing on making sure she didn't brady over her volume. We can't seem to win....they want her to take everything by mouth, but if she bradys she can't come home for 5 days. If we feed her conservatively, they aren't happy, if we feed her agressively and she bradys, they aren't happy. Hopefully they will agree to send her home with the NG tube.

Sunday, November 14, 2010

Sunday, November 14, 2010 7:35 AM, CST

I went to visit with Tori yesterday in the late morning. She had been doing so well! I gave her a bath (which she LOVED), it was the first one she got to take in a "big" bathtub instead of the rubbermaid style container they call a tiny tub and then she promptly POOPED all over the towel I wrapped her in, which I guess is better than pooping in the tub! Then we sat down to eat. After going almost 3 days without having a brady episode, 3 sucks into the feed, she coughed and little girlfriend earned herself another 5 days in the RCNIC. I told her that her staying IN the hospital was NOT the birthday gift that I wanted, that 45 days had been long enough, but apparently she has plans of her own. Jay said, only half joking, that we will soon be buying her a christmas tree to set up at her bedside.

Saturday, November 13, 2010

Saturday, November 13, 2010 6:40 AM, EST

It dawned on me the other day that many of you following our story don't really KNOW us! I so appreciate that you shower us in prayer and love, so I thought I might tell you a little of the STORY OF TORI that doesn't have to do with her abdominal, eye or prematurity issues!

I am Laura, Tori's mom! I am 41 years old (as of today). I have been married to Jay (46), also known as Tori's dad, for 20 years and we have known each other for 24 years. We met when we were both working at a country club, me in the front office, him in the pro shop. Yes I have been married to him for 1/2 of my life and with him for more than half my life! Tori has 6 older brothers and 3 older sisters. Yes, for those stumped by even the simplest math, you did add that correctly, that makes Tori our 10th child! Yes, I carried each of them and no, there are no multiples, I don't enjoy being pregnant or have easy pregnancies. Each of our pregnancies has been high risk because our oldest child was born prematurely and has hydrocephalus (a continue which prevents his spinal fluid from draining from his brain and requires him to have a shunt) and because I have had gestational diabetes with the majority of my pregnancies. My pregnancy with Tori was by far the highest risk of all my pregnancies! At no point during the pregnancy was her survival or mine a certainty, but God is good and brought us both through it!

Our 6 boys are Brett (20), Grant (14), Jacob (12), Cade (10), William (6) and Luke (3 1/2). We also have a beautiful 15 month old grandson, Noel. Our boys LOVE sports, especially basketball and baseball and are extremely competitive, both amongst themselves and when they play against others. They love PS3 and the computer. The current favorite PS3 game is the newest release in the Call of Duty series. Even Luke at 3 has his favorite website (webkins) and his favorite computer game (Backyard Baseball) and can navigate both without help. Brett, in addition to working 2 jobs, manages to find the time to coach his 10 year old brother's basketball team!

Our 3 other daughters are Hannah (18), Emily (16) and Sophia (8). Our girls have enjoyed dance and gymnastics and are all strong, opinionated young women. The older 2 girls both work and are often out of the house either at their jobs or hanging out with their friends. Sophia loves girlscouts, 4H, Sunday school and her monthly cooking club!

We live in Loveland, OH, a city about 20 or so miles northeast of Cincinnati. We have lived in Loveland for 5 1/2 years but have been in the greater Cincinnati area our entire lives. Jay is the youngest of 10 kids, all his siblings live within about 4 hours of here, I have one brother. If I counted correctly, my kids have 26 cousins, cousin-in-laws and second cousins. Both of Jay's parents are deceased, as is my father, so Tori only has one living grandparent, my mother.

We are Christians, growing stronger in our faith each day! I know that it is only through God's grace and the power of prayer that our beautiful daughter has made it this far! We are surrounded by a loving church family! I have never felt so loved, blessed or covered in prayer as I have in the last few months. God is AWESOME!
William and Sophia are both busy practicing for their parts in our church's Christmas play. Sophia even has a small speaking part, she is so very excited! We are all excited too, we can't wait to see the two of them on stage!

We are homeschoolers. We are CHRISTIANS that happen to homeschool, but about as far from the conservative, denim skirt wearing, long hair in buns, kids dressed in matching jumpers sew with my own hands, Christian homeschoolers that so many people envision. I don't grind my own wheat or bake my own bread in my solar powered oven. My 6 year old isn't studying quantum physics and my 12 year old is no closer to finding a cure for cancer or winning the national spelling bee than the Bengals are to winning the Superbowl. We believe that the world is our classroom and life is our curriculum and we LOVE the life we live! We didn't chose to homeschool to limit our children's experiences within the world but to expand it.

If they were to make a reality show about our family they wouldn't be able to air in on TLC, maybe MTV or VH1, but we definitely aren't TLC material. Our language is too rough, my children too rowdy, our friends too colorful! Our son was a teen father, our daughters free to date who they chose, our arguments are loud, our opinions are strong and often not politically correct, I don't spend my day with a smile on my face or gently reminding my children to not run through the house. My house is rarely clean and it certainly wouldn't make an issue of Good Housekeeping other than as an example of a "before" photo. I cook, but not well! The kids and Jay tend to have simple taste so I can keep them fed but a gourmet 5 course meal isn't coming from my kitchen unless someone else cooks it and drops it off here and if it is dropped off here it will most likely be eaten off of paper plates rather than matching china! Even with a large family, you will rarely find more than a day's worth of dirty laundry in my house, laundry, well that is my strong point! You never have to worry about having clean clothes if you live here! I do at least 3 loads of laundry a day, more if I happen to need to wash diapers. We go through more toilet paper in a day than most families go through in a 4 or 5 days!

So that is a quick peak into who we are and the family that loves Tori and can't wait to get her home. The picture at the beginning of the post is our annual family picture taken the end of last year, we are looking forward to updating it once Tori is home!

Friday, November 12, 2010

Friday, November 12, 2010 4:21 PM, EST

Jay and I went and visited with Tori first thing this morning. We were there for her 6 AM and 9 AM feedings. She took 57 ml at 6 AM, completely pacing herself and with no bradys and then took 60 ml at 9 AM, once again pacing herself and with no bradys but she did spit up a bunch of the feed. She didn't take as much by mouth the last 2 feeds (12 PM and 3 PM--she took about 25 ml at each feed) but hopefully her volume will pick up with her later feeds. Her grandma visited with her late this morning (as Jay and I were leaving) and her two older sisters visited with her this afternoon.

We started part of our discharge process. We watched the carseat video--talk about a joke, the video is ridiculous and rather than require you to go and have the carseat fitted at a local firestation, they expect that parents will figure it out on their own after watching an outdated video that doesn't even note the latest changes in Ohio's carseat laws--a complete waste of time. But it is one thing checked off the list, well technically 2 things off the list, they let us skip the "basic baby care" video, I guess the figured that if the other kids survived we must at least have "basic" skills! We have to watch the CPR video and then we are finished with the videos. There will be other teaching we have to do, especially if she comes home with a feeding tube, but we are eager to take on the challenge!

I really DISLIKE her current attending....I can't wait for her to LEAVE on Wednesday and never breath the same air in the same room I am in again. I have never met someone so contrary and with such a superiority complex. Hopefully the new doctor we get will be a bit more agreeable, pleasant and actually remember what he/she told us.

Staffing issues are also really getting to me. There is absolutely no consistency with her nursing staff, she ends up with a different nurse every day, every shift, sometimes even 2x a shift. Someone seriously needs to take over staffing at the hospital. They also need to hire more patient care assistants/attendants (PCAs), they seem to be able to pay plenty of people to walk around and stock drawers, change sharps containers, and talk to each other, but not enough PCAs to make sure that patients that really need someone constantly at their bedside have them. It really irks me because since Tori isn't hooked up to any machines or with any critical tubes she tends to get "ignored", her feeds get pushed back, her alarms go off, she doesn't get changed or lays in spit-up yet we are being told by Dr. "I know better than you" that we aren't able to take care of her....believe me I KNOW I can do at least as good of a job as they are is just so frustrating!

Can't wait to see my princess again tomorrow! Hoping to be down there by 10 AM to spend the late morning and early afternoon with her! Maybe she will give me a BIRTHDAY present and take her entire feed for me!
These were posted to a local homeschooling list and I thought it was too good not to pass on! I am of the firm belief that you don't need a curriculum at all, but for those that are so inclined, these offer far more freedom than being tied to one of the e-schools (public school at home)!

Totally FREE, all tested and tried. Find one you like or borrow what you like from all of them:

Ambleside Online -- A Charlotte Mason Curriculum for preK-12:

Lessons Pathway for K-5:

Simply Charlotte Mason -- K-12:

An Old-Fashioned Education Christian Homeschool Curriculum:

Mater Amabilis -- A Charlotte Mason Style Curriculum for Catholics:

Thursday, November 11, 2010

Thursday, November 11, 2010 11:10 PM, EST

Tori blew the 5th IV in 7 they have decided to discontinue her IV antibiotics! I am THRILLED she isn't being stuck again, but worried that she might still need the antibiotics. Hopefully the doctors know what they are doing.

She is still getting antibiotic eye drops 3x a day through at least Sunday (possibly longer) and is on the nose drops 4x a day (until the stints are removed).

Slow goes the eating. She only took one full feed today by mouth, the other times she took less than 1/2 of what she needs to take. I just wish she would get the hang of it all so that we can get her home.

Since her surgery and them cutting the calories on her milk fortification, she hasn't gained much weight this week, not really a bad thing, since they really put weight on her over the past 2 weeks.

I have started to get used to the idea that she might be coming home sometime soon and Sophia and I put some of her things in her drawers today. We have some small clothes for her, many of which I have taken to the hospital so that they can dress her everyday, but I realized today that we really have next to nothing in 3-6 month or 6-9 month size for her for the coming months. Since we didn't know if we were having a boy or a girl I didn't really do much shopping before she was born and haven't had much time or any money since she got her. Sophia can't wait to get her home and start "dressing" her, she keeps asking if she can pick out her outfits every day. I think she sees Tori as her very own live baby doll! I pulled out the carseat and washed the cover and the pack and play is out but not set up. I just can't handle seeing it set up and not having her here to put in it. I don't think I will set it up until she is actually home, it will only take a few minutes and it will be easier on me emotionally, far easier than looking at an empty bed. I have a hard enough time with tripping over the carseat!

Tuesday, November 09, 2010

Tuesday, November 9, 2010 9:03 AM, EST

Tori is EATING! She took full feeds by mouth at 3 AM, 6 AM, 9 AM and 6 PM! She is now up to 70 ml (2 1/3 ounces) at each feed! She didn't stop breathing at all when I fed her at 6 PM and there was no mention of her having any brady episodes at other feeds (we know for sure she didn't brady at 9 AM because the occupational therapist fed her and they stop the feed immediately if they brady). Maybe we will finally get to bring her home!

Unfortunately there is something wrong with her right eye (not the eye with the infection). The lid is a very odd shade of pink/red (even according to the eye doctors) and they have been up to look at it twice. They thought maybe it had been scratched during surgery but there is no sign of trauma to the inside of the lid (on the side that touches the eyeball) or to the eye itself. Since they don't know what it is, they don't know what to do to treat it! She is still on IV antibiotics, hopefully that will keep it from progressing to anything else!

Sunday, November 07, 2010

Sunday, November 7, 2010 5:27 PM, CST

Tori came through her surgery with flying colors! She still really isn't awake but the surgeons said everything looked great and they will most likely go in and remove the stints in a couple of months! Her little face looks bruised and swollen! Poor baby!

Of course the surgery was supposed to start at 10 AM and it didn't start until noon, poor baby was STARVING and not very happy with any of us! It was really weird to be the ONLY people in the surgical waiting area, there wasn't even a receptionist at the desk. About 50 minutes after they took her back I heard the phone at the desk ring and after about the 3rd ring I said to Jay "I think we better answer that, since we are the only people here" It was someone calling from the OR telling us the surgeons were on the way out to see us. Even though it seemed like a fairly simple surgery, the surgeon said she would need to be in the hospital at least 3 days post surgery (not an issue since she is still having feeding problems but he was unaware of that issue), so I guess there is a lot of fear over infection since they released Brett 2 days after brain surgery!

By 2 PM we were back up in her room and she seemed comfortable. Hopefully she will continue to rest tonight and tomorrow start working on her feeding!

Prayers for her healing and comfort are appreciated!

Saturday, November 06, 2010

Saturday, November 6, 2010 3:58 PM, EDT

Tori is having surgery tomorrow at 10 AM. When they did the CT scan they found a cyst (mucoceles) in her nasolacrimal duct system and since her tears can't move in her closed lacrimal drainage system, it caused the infection known as dacryocystitis (which they have been treating since Thursday with antibiotics). so they have to go in and do something called bilateral (meaning both eyes) nasolacrimal system reconstruction and she will have stints in her eyes to keep the system open for a few month. We were told that the surgery will last about one hour. She will have to have surgery in a few months to remove the stints.

On a very POSITIVE note (remember typically with Tori for every step forward there is one back, well today we took a step back--surgery--and a step forward!)....Tori took 53 ml at her 8 AM feed, 50 ml at her 11 AM feed and 51 ml at her 2 PM feed! Way to go Tori!

Prayers are much appreciated for Tori, her surgeons (both an opthalmologist and an ENT), the residents, the members of the anesthesiology team, the nurses and all of the staff working with her tomorrow!

Friday, November 05, 2010

November Invention Convention: Bridges

What great fun! We gave each child/team 100 popsicle sticks and glue and had them build bridges! Who would have ever thought a bridge made of popsicle sticks would hold the amount of weight that they did!

1 pound- William
2 and 1/2 pounds - Cade
3 pounds- Sophia and Sarah
7 and 1/2 pounds - Shelby and Joseph
10 pounds- Grant and Jacob
15 pounds- Kyle
27 and 1/2 pounds- Samuel
31 pounds- Michael
37 and 1/2 pounds - Bret
71 pounds - my bridge! (go me!)
120 plus pounds - Jessica and Brenda

Technically the WINNING bridge didn't really follow the directions (they didn't build a suspension bridge) but their design was innovative and impressive! I would love to see how the kids would modify their bridges if we tried the challenge again. 3 participants didn't finish their bridges, all 3 of which probably would have held even more weight than the ones we tested as they were well researched and planned out!

Here is the email I sent to the group prior to the event:

Please RSVP to let us know if you will be joining us! Also does anyone have any idea for testing how much weight each bridge will hold? I am still on lifting restrictions post surgery (I am only allowed to lift 10 lbs) and haven't really given it much thought!

What: Invention Convention Bridges
When: Friday, November 5, 2010 10 AM to 12 PM
Where: Symmes Township Library
Who: Homeschoolers of all ages. Children 12 and under will be expected to have a parent/responsible adult on premises with them during activities, Teens 13 and up may be dropped off.
RSVP: Laura

What to bring: 100 popsicle/craft sticks per child (or team if you children wish to work in teams), glue (if you don't want to use hot glue guns/glue sticks). The only things an individual/team can use to build their bridge is popsicle sticks and glue. Bridges must be assembled at the event!
What will be provided: Glue guns with glue sticks

Popsicle Stick Bridges: if you go to the bottom, there is an example of a short pratt truss bridge that only used 46 popsicle sticks and held 73 lb before it broke....I wouldn't have thought a bridge that small would hold that much! The first link (top of page) shows a bridge made with less than 100 sticks that held 140 lb. Pretty cool!
Fun site with tons of info:

And here is a slideshow of my kids bridges:

Thursday, November 04, 2010

Thursday, November 4, 2010 6:24 PM, EDT

Poor Tori!

Her blocked tear duct is now infected. They had to start her on IV antibiotics and on an antibiotic ointment. Dr West ordered a CT so that they can make sure that the tear duct into invading the nasal cavity, they did it at 3:30 PM, hopefully we will get results in the morning. She looks miserable, like someone punched her in the eye, she can't even get it open!

They confirmed our meeting for 4 PM tomorrow, it will be interesting to see if we leave with more questions than answers!

She was so upset at her 11 AM feed after the eye exam and getting her IV started that she promptly puked up the entire feed! She did much better at 2 PM (maybe because she was starving!) and took 44 ml by mouth! Her best EVER! The 5 PM feed didn't go so well, she was sleepy and only took 10 ml!

Thursday, November 4, 2010 5:44 AM, CDT

Tori did well with most of her feeds yesterday! Although her volume was typically pretty low (20 ml or less) she didn't quit breathing during any of her feeds! She took 31 ml for Jay and I last night at 8 PM and had one episode where she choked herself, but she recovered pretty quickly! Her left tear duct is blocked, her eye is all goopy and she looks like she is miserable. The little girl who NEVER cries, cries when you touch it. Hopefully it will clear up soon, I hate to think of her with a crusty, yucky eye, laying there in her crib all alone!

The are supposed to be setting up a parent meeting for us to meet with the doctors to discuss getting her home. Tentatively it is set for Friday afternoon, I will find out today if the time is definite of not.

Wednesday, November 03, 2010

Wednesday, November 3, 2010 11:03 AM, CDT

I got to feed Tori 3 times yesterday! At 2 PM she took 30 ml for me, at 5 PM she took 34 ml for me and at 8 PM, she was exhausted and I ended up using her feeding tube! It was great to spend so much time with her. Another one of her nurses is encouraging us to take her home with a feeding tube, we will see!

Grant got to see her for the first time yesterday, it was so cute to see him hold her, he has gotten so big over the past few months and she is so small!

Tuesday, November 02, 2010

Tuesday, November 2, 2010 11:11 AM, EDT

Tori took 42 ml (almost 1 1/2 ounces) for us last night at 5 PM, but she had a brady episode during the feed. I wonder if we aren't pushing her too hard, as much as I need her home, I don't want her to stop breathing each time we feed her! Her nurse showed us how to check her feeding tube for placement using 2 different methods, I think she is thinking the same thing I am, bringing her home on a feeding tube may be the answer. They have cut her back to 24 calories in her fortifier, since she is gaining weight so well! When they get her back to 22 calories, supposedly they will start letting her nurse, of course I won't believe it until it actually happens!

During the parent meeting, they gave us all "safety kits" to childproof our homes with. Jay and I laughed about it since all of our kids have managed to outsmart any safety device we have ever used. We are hoping that the cabinet latches might keep the puppy out of the kitchen cabinet, he likes to climb in there and chew on the hose for the water sprayer. I am willing to bet that even our puppy is smarter than the safety devices but we will see!

I am taking the little kids to the zoo in a little bit and then heading to the hospital (my friend is bringing them home) so I am hoping to see the doctors and talk to them. It is so hard to figure out just when they will be there to talk to them!

And my public service announcement for the day-----> GET OUT AND VOTE! I was so disappointed when Jay and I walked down to the poll at about 10 AM and saw that we were the 64 and 65 voter in our precinct. Just pathetic if you ask me! Of course voters #66 and #67 might also be from my household once they get themselves dressed and out the door!

Monday, November 01, 2010

Monday, November 1, 2010 2:13 PM, EDT

Since today is the 1st of the month, Tori will have a new group of doctors following her. Apparently the residents rotate once a month on the first. It should be interesting to see if the new doctors opinions agree with the old ones.

Jay and I will go down later today and hopefully see the doctors and of course visit with Tori. Each Monday there is a parent meeting and we want to be there to attend it. Don't want to end up with a "black mark" because we didn't attend! It is a nice opportunity to meet with and talk to other parents and well as complete items needed for Tori to be discharged!

Tori is now typically taking something by mouth at each feeding. She didn't do that well for us yesterday at her 2 pm feeding, she only took 20 ml. Her nurse, Kari, said she did well at her early 2 feeds that shift, so I guess I can't complain. She didn't brady during those 2 feeds, although she did brady once on me. Little stinker!

It is hard to believe that her first halloween has come and gone, the first holiday (and hopefully the ONLY holiday ever) spent in the hospital! I tried dressing her up for halloween and she let me know what she thought of her frilly pink and white tutu by spitting up all over it! Maybe my princess is a tomboy at heart!

One of our friends is having surgery this week. Please keep Carrie in your prayers tomorrow. And remember our friend Benita next Thursday (11-11) when she has surgery as well! Continued prayers for Tori's room mates, as they recover from their surgeries last week and prepare for upcoming surgeries is also appreciated!