I had to look up to see when the last time I wrote was. My last post was about finding a balance between all my children. I haven't perfected it by any means but it's gotten better. Weston is sleeping better at night, well most nights anyway. Rylee is healing well and walking while holding onto things. Troy is being 2, throwing a tantrum one minute and helpful the next. He really is a good kid but 2 is a hard age.
I went back to work last week. It was nice to be back but I dearly missed my kids. I would say that Rylee had the hardest time. The first few nights she clung to me and cried in the morning when I left. All in all, we're doing well as a family.
In the last week I got an eye opener. My grandma is in the hospital. She's sick, the sickest I have ever seen her. I told Dr. C, who is also her doctor, that he couldn't let her die, not right now. He just looked at me and said sooner or later it will happen. I know that time will come and I can't even stomach the thought. I haven't gotten to visit with her much lately not only because I don't have a ton of time (which is extremely awful to say because I should've made time) but because she's getting harder and harder to visit with which breaks my heart. I long for the Grandma I had when I was little, the Grandma who played cards with me at the kitchen table in their old farmhouse, the Grandma who hugged me tight after I miscarried my first baby, the Grandma who was always baking. I miss her. She's feisty and stubborn inside, but it's not in her eyes anymore. I will always remember those special times with her. My kids will always know what a great woman she is. I didn't get to visit her today. I hope, pray rather, that she is doing better. I am not ready to let her go. Not right now. She may not be the same Grandma she was 15 years ago, but she's still Grandma. She's a great person, through and through. She still worries about her family, prays for her family and is proud of her family. I look up to her. I hope she kicks this bug's ass all the way to the moon and back.
I love this song!
Monday, September 27, 2010
Wednesday, September 15, 2010
Hmmm...How?
I find myself becoming overwhelmed when I have one child eating, one getting into something, causing mischief and the other crying to be held. I don't know how as 1 person I am suppose to feed, correct and calm 3 kids. It's something that I hope to learn to balance overtime but for right now, I take the most urgent. I am also finding that I feel guilty when I can't spend that time with each child like I used to. I used to dread bedtime but cherished the moments that Troy and I shared whether it be the stories we told each other or the cuddling time right before he fell asleep. I loved the moments that I got with Rylee when we were playing or bathing or just sitting cuddled together. Now I can't balance that time. I find myself feeling guilty if I am holding Weston and Rylee is crying. Or cuddling Rylee and Troy is off in a corner playing by himself. I hate to say but I think Troy has gotten the shaft. I have noticed that Kris and I are both doing it. The other 2 kids require more attention therefore Troy is getting less. For example, tonight we were going to have leftovers for supper but Troy wanted a peanut butter sandwich (at this point, if he asks for something like a PB sandwich, we give it to him because it might be the only thing he'll eat all day, picky picky eater) so I made him one. That child sat at the dinner table by himself, eating his PB sandwich while I wrangled with Rylee and tried to feed Weston at the same time. It wasn't until he asked for more PB sandwich, that I realized I had left him to eat by himself. Our rule at our dinner table is that no one gets up until everyone is done eating just so that no one has to eat alone. And I made him eat alone. My heart throbs to go back and change that moment. I find that a lot lately with all the kids. I haven't quite fell into a knack for this mom of 3 role yet. I thought that bringing Rylee home and transitioning to 2 kids was harder than this time but I don't think so. I think it was hard when Rylee came home because of the monitors and oxygen and her requiring so much time. This time, I can't hold all 3 kids on my lap and snuggle with them all at the same time like I could when it was just Troy and Rylee. I never want to wish my children older, but I am hoping that once Weston can hold his own a little more, than we'll be able to manage a little better. We are also in dire need of a schedule. For whatever reason, we can not get a routine set at all! I am just plain frustrated tonight. It's 9:15 pm and Troy and Rylee are both still up playing. I can't for the life of me get them to lay down eventually they should tucker themselves out, I hope. Once they do, Little Man will wake and be awake all night. The joys of motherhood. Maybe in 10 years, we'll get some rest but not right now.
Tomorrow, we are busy running around. We have Weston's weight check at 9:45 am in Cuba City and Rylee's post-op appointment in Madison with Neurosurgery at 12:20 pm. This means that I have enough time to run Weston to get his weight checked, run home grab the other 2 kids and some sandwiches and chips and head off to Madison. It should be fun, me and 3 kids, stitches removal. Oh lord, help me. I am scared. I pray Troy behaves, Rylee doesn't vomit and Weston doesn't scream his head off. Say a prayer for me for tomorrow. It shall be interesting.
Good night all.
Tomorrow, we are busy running around. We have Weston's weight check at 9:45 am in Cuba City and Rylee's post-op appointment in Madison with Neurosurgery at 12:20 pm. This means that I have enough time to run Weston to get his weight checked, run home grab the other 2 kids and some sandwiches and chips and head off to Madison. It should be fun, me and 3 kids, stitches removal. Oh lord, help me. I am scared. I pray Troy behaves, Rylee doesn't vomit and Weston doesn't scream his head off. Say a prayer for me for tomorrow. It shall be interesting.
Good night all.
Sunday, September 12, 2010
Do you remember?
**Note: I know this is late! I've been trying to write this since yesterday, Sept. 11. Sorry life is a tad busy!**
Do you remember where you were when you heard about the attacks on our great nation? I was in English Lit class. There was a knock on the door and our teacher, Mr. Devlin, stepped out to see what was up. He walked back in with a look on his face like he'd been socked in the gut. He turned on the television and let us watch as the second tower fell. I watched all day from my rural Wisconsin high school (and when I say rural, I mean rural! The baseball field butted up next to a corn field and there were like 4 or 5 little tiny towns combined into 1 little school district. It's rural in those parts! But I loved it.) with shock and horror. One minute I was talking about my new boyfriend, gossiping with my friends, adjusting to life as a junior!, to terrorist attacks, death and wondering what all of this meant. Here we are 9 years later. Too many lives have been lost and Ground Zero is still a 7 story deep hole in the ground.
I don't understand why this world is so full of hate. I don't understand why so many countries "hate" the United States. I personally love it here. I see so many people who have the same scoul day after day. Literally, I can think of a few people who come into the bank regularly with nothing but a scoul. There is a woman who comes in everyday, people have tried to "kill her with kindness", and she's still an old stick in the mud. I don't understand how life could be so bad that everyday you have to be rude and unkind to others. Don't these people know you should never be unkind to your banker, duh?! Anyway, we're no closer to peace than 9 years ago, or maybe we are but it sure doesn't feel like it. I am praying hard for those family of lost loved ones and those in the armed forces risking their lives for me and my family. God Bless all of them (or maybe you).
Want a little update on us...
well not much is new. I have been busy getting the last few things done on our checklist before I have to go back to work. Technically, I was suppose to go back tomorrow morning but I am staying home for another week. Right now, no one in our family is ready for me to go back to work. No one, except part of me. I am excited to return to work. I have a purpose at work, it's fulftilling work. I like to think that I am irreplaceable (but that's not true!). Kris hasn't been alone with all 3 kids yet, and I don't want to throw him to the wolves when he does have to be. After being away from home for nearly 6 weeks, my house needs me to be home. There are common weekly/daily chores that simply didn't get done and now we're paying for that. Weston is on no schedule at all. He eats all the time and sleeps when he wants (which is sleeping through the day and awake at night, and we haven't been home or had enough time to help change this). Rylee has not 7 but 8 healing incision on her body (6 on her head, which is crazy, and 2 on her abdomin). She needs to heal a lot more before she can go to daycare. Troy is the one that needs me home the most. He's had a rough go of it the last couple of weeks. I am not sure how to help him or break him of this behavior. I know he is just acting out but that is no way to try to get our attention. I am having a hard time with him. I also wanted to have him potty trained before I went back to work from my maternity leave but that's not happening unless the potty training fairy comes and sprinkles some potty dust over him. And I am not ready yet. I haven't bonded with Weston near enough, don't trust anyone to care for Rylee but me, haven't gotten to just sit,haven't watch my son's imagination run wild and spent much time time with my husband.
I am finally getting around to filing claims with Aflac. Pray for a big return! It should be a nice amount, whcih we are happy about! Have a good night all.
Do you remember where you were when you heard about the attacks on our great nation? I was in English Lit class. There was a knock on the door and our teacher, Mr. Devlin, stepped out to see what was up. He walked back in with a look on his face like he'd been socked in the gut. He turned on the television and let us watch as the second tower fell. I watched all day from my rural Wisconsin high school (and when I say rural, I mean rural! The baseball field butted up next to a corn field and there were like 4 or 5 little tiny towns combined into 1 little school district. It's rural in those parts! But I loved it.) with shock and horror. One minute I was talking about my new boyfriend, gossiping with my friends, adjusting to life as a junior!, to terrorist attacks, death and wondering what all of this meant. Here we are 9 years later. Too many lives have been lost and Ground Zero is still a 7 story deep hole in the ground.
I don't understand why this world is so full of hate. I don't understand why so many countries "hate" the United States. I personally love it here. I see so many people who have the same scoul day after day. Literally, I can think of a few people who come into the bank regularly with nothing but a scoul. There is a woman who comes in everyday, people have tried to "kill her with kindness", and she's still an old stick in the mud. I don't understand how life could be so bad that everyday you have to be rude and unkind to others. Don't these people know you should never be unkind to your banker, duh?! Anyway, we're no closer to peace than 9 years ago, or maybe we are but it sure doesn't feel like it. I am praying hard for those family of lost loved ones and those in the armed forces risking their lives for me and my family. God Bless all of them (or maybe you).
Want a little update on us...
well not much is new. I have been busy getting the last few things done on our checklist before I have to go back to work. Technically, I was suppose to go back tomorrow morning but I am staying home for another week. Right now, no one in our family is ready for me to go back to work. No one, except part of me. I am excited to return to work. I have a purpose at work, it's fulftilling work. I like to think that I am irreplaceable (but that's not true!). Kris hasn't been alone with all 3 kids yet, and I don't want to throw him to the wolves when he does have to be. After being away from home for nearly 6 weeks, my house needs me to be home. There are common weekly/daily chores that simply didn't get done and now we're paying for that. Weston is on no schedule at all. He eats all the time and sleeps when he wants (which is sleeping through the day and awake at night, and we haven't been home or had enough time to help change this). Rylee has not 7 but 8 healing incision on her body (6 on her head, which is crazy, and 2 on her abdomin). She needs to heal a lot more before she can go to daycare. Troy is the one that needs me home the most. He's had a rough go of it the last couple of weeks. I am not sure how to help him or break him of this behavior. I know he is just acting out but that is no way to try to get our attention. I am having a hard time with him. I also wanted to have him potty trained before I went back to work from my maternity leave but that's not happening unless the potty training fairy comes and sprinkles some potty dust over him. And I am not ready yet. I haven't bonded with Weston near enough, don't trust anyone to care for Rylee but me, haven't gotten to just sit,haven't watch my son's imagination run wild and spent much time time with my husband.
I am finally getting around to filing claims with Aflac. Pray for a big return! It should be a nice amount, whcih we are happy about! Have a good night all.
Friday, September 10, 2010
Life is great, again!
We finally got discharged on Wednesday after waiting all day long. We officially packed in the car at 8:45 pm on Wednesday. It was a long day of waiting and waiting! Thursday morning we heard the never ending "NO WYLEE", it was like music to my ears. Weston and I packed in the van yesterday late morning and went to get weighed, to the bank (twice) and to Dubuque to the second hand kids store. I bought a bunch of shirts, sweatpants, 0-3 mo outfits for the boys and only spent $45. They're pretty stocked for winter. Weston is still wearing newborn clothes but rapidly moving towards 0-3 month. He was 7 lb, 15 oz. The nurse was in a hurry, Weston was screaming and squirming and it was one of those weighted scales so I am not sure how exact that weight is. Today, Rylee and I packed up and went to the grocery store and made a surprise visit to Aunt Carmen at work. She was shy at First Capital Group but warmed up when we were at the grocery store. We made a stop at Menards to pick up Daddy's birthday present. I know his birthday was over a week ago but we still got him something. We don't have ladder. Our gutters are in desperate need to be cleaned out and we can't hang up christmas lights outside without a ladder. So guess what daddy got? A ladder! He was actually excited. I was impressed that I could manuaver around the store with that thing. He wanted to clean the gutters out right away just to use his new ladder. Who gets excited over a ladder? We do at our house! We piled our cart full of groceries. Kris and I went through the fridge while I was making out my list this morning and threw out a bunch of stuff. It's crazy how much stuff gets shoved to the back. I need to clean that beast out once a week. It's stocked now. I actually made a list of the meals that we're going to have and got groceries accordingly. It was all just stuff that we're going to use, nothing else. I didn't stray from my list a bit! All 3 of my children are napping right now. I am suppose to head back to work on Monday. My 6 weeks are over but I think that with all the stuff that has transpired over the last 6 weeks, I need 1 more week. My house, kids and dogs need me for 1 more week. So I think that is what I am going to do. It's a good plan! The neighbor decided to mow her grass, there went my 3 sleeping children! Until next time all!
Wednesday, September 8, 2010
The last 43 days!
The last 43 days has been crazy! Here's a quick recap (more for my note taking than anything)
Day 1, 7/28/10 Became an aunt again to Sawyer James in the wee hours of the morning. Mid afternoon got a call from the GI doctor with suspicions that Rylee's shunt isn't working. 4:55 pm, ran my rear end off to get Rylee into the clinic to get her head measured.
Day 2, 7/29/10 UW Pediatric Neurosurgery called and wanted Rylee there ASAP for a quick brain scan to check her shunt. 2:00 pm brain scan, 2:30 pm looked at the scan with Dr. A and found that her shunt was indeed not working, 4:00 pm finally heading back to SW WI, 11:30 pm, got all the running around done and home only to find out we have to be at the hospital by 6 am the next morning...ouch!
Day 3, 7/30/10 Shunt revision surgery to replace the valve at 7:45 am. Problems with anesthesia and waking from surgery got to see her at noon wake up with a smile on her face!
Day 4, 7/31/10 Rylee slept the entire night, was happy as a clam, and by 11:30 am we were loaded in the car and headed back to SW WI to get Troy and go home.
Day 5, 8/1/10 Rylee was doing better than expected so as a last minute decision decided to visit our new nephew Sawyer. We packed up Troy, Rylee and ourselves for the 2 and half hour drive to Tomah. At 4:30 pm, an almost accident which included a big slam of the brakes, brought on some contractions. By 6 pm, Mommy wasn't feeling very well. By 10 pm, Mom felt alright and slept fairly well through the night. Rylee vomited at our visit and at home in the evening with a slight fever, decided to take a visit to the doctor the next morning.
Day 6, 8/2/10 7:30 am, after a quick shower to help relax from all the contractions, Mommy went to work. At 9:20 am, Visited Dr. Rose, 10:00 am went to hospital for blood draw, mommy wasn't feels so well, 1:00 pm Mommy decided to time the contractions, 2:45 Mommy got in the car to go to 34 week OB appointment, 3:20 pm arrived at the clinic with painful contractions, 4:00 pm doctor finally came in to see Mommy, 4:20 pm being loaded on a stretcher and into an ambulance, 4:30 pm arrived at hospital, 4:35 pm seen Dr. Berger, 5:00 pm got epidural 5:30 pm Dr. B broke water, 7:00 pm started pitocin, 9:45 pm broke down the room for delivery, 9:52 pm started pushing, 9:57 pm Weston Robert Klauer came into this world and was sent to the NICU
Day 7 8/3/10 Spent at the hospital NICU and recovering. Weston doing well except for grunting while breathing.
Day 8 8/4/10 Mommy released from the hospital.
Day 9 thru Day 24 8/5/10 to 8/20/10 Divided time between home and the NICU with Weston. 8/15/10 (Day 19) Become an aunt AGAIN to Lily Evelyn. 8/19/10 (Day 23) Took Rylee to her 18 month well child appointment. She was 28.5 inches long and 15 lbs, 8 oz.
Day 25 8/21/10 Brought Weston home after 19 days!
Day 26 thru Day 29 8/22/10 to 8/25/10 Hung out around home, enjoying visitors!
Day 30 8/26/10 Noticed Rylee's incision was broke open and could see something black. Called the Doctor and made an appointment for the following day
Day 31 8/27/10 2:30 pm met Dr Alison who all but freaked out about the incision. She called UW peds neurosurgery about this and made us an appt for Monday. She removed Rylee's stitches that didn't dissolve like they were suppose to and instructed us to go to the UW ER if it opened again before our appointment and ordered some antibiotics.
Day 32 8/28/10 Rylee broke her incision open at 2 pm which started bleeding. At 5 pm did it again but this time was accompanied by crying and a temp. 7 pm arrived at UW ER, 10 pm new antibiotics and homebound
Day 33 8/29/10 Spent the day at home with some visitors and got ready for our 3 appointments on Monday
Day 34 8/30/10 8:55 am met with GI doctor, 9:20 met Dr Bragg, Rylee's new neurosurgeon, who said the black thing we seen was a stitch holding the shunt together, pretty much exposed as well as the shunt. Tapped the shunt and took some blood to test for infection at which she thought was probably neg. Scheduled shunt revision surgery for 7:45 the following morning.
Day 35 8/31/10 8:05 am took Rylee back for surgery, 10:00 am Dr Bragg came in say that just as she was finishing up the revision surgery, the lab called saying the cultures were positive so taken the entire shunt out. 11 am, surgery was done and they just needed to place a picc line. 12:45 pm Got taken back to recovery to see her
Day 36 9/1/10 Happy Birthday Daddy! First night in the PICU was uneventful.
Day 37 thru 41 9/2/10 to 9/6/10 Kris and I split out time between home and the PICU.
Day 42 9/7/10 Surgery was at 11:30 am to place the shunt back in. Dr Bragg switched the side of the shunt to her left. She had to tunnel a new catheter from her brain to her belly and had a hard time routing it down around her neck area because she's so thin. Rylee has orange hair with none on top.
Day 43 9/8/10 Today we are hoping to go home. Rylee has to have a quick brain scan, which isn't schedule so we're at their will for times, and then hopefully can go home.
Thank you all that called, text us and sent us prayers yesterday. It meant a lot and we appreciate more than you know. It's funny how something so tramatic happens like this, you really find out who cares and who doesn't. Some come to visit, while others can't even pick up the a couple seconds to call. True colors were shown yesterday and it was my feelings that were hurt. Not much I can do about it now but move on! Keep your fingers crossed that we can come home today. Everyone needs it, especially our dogs and house!
Day 1, 7/28/10 Became an aunt again to Sawyer James in the wee hours of the morning. Mid afternoon got a call from the GI doctor with suspicions that Rylee's shunt isn't working. 4:55 pm, ran my rear end off to get Rylee into the clinic to get her head measured.
Day 2, 7/29/10 UW Pediatric Neurosurgery called and wanted Rylee there ASAP for a quick brain scan to check her shunt. 2:00 pm brain scan, 2:30 pm looked at the scan with Dr. A and found that her shunt was indeed not working, 4:00 pm finally heading back to SW WI, 11:30 pm, got all the running around done and home only to find out we have to be at the hospital by 6 am the next morning...ouch!
Day 3, 7/30/10 Shunt revision surgery to replace the valve at 7:45 am. Problems with anesthesia and waking from surgery got to see her at noon wake up with a smile on her face!
Day 4, 7/31/10 Rylee slept the entire night, was happy as a clam, and by 11:30 am we were loaded in the car and headed back to SW WI to get Troy and go home.
Day 5, 8/1/10 Rylee was doing better than expected so as a last minute decision decided to visit our new nephew Sawyer. We packed up Troy, Rylee and ourselves for the 2 and half hour drive to Tomah. At 4:30 pm, an almost accident which included a big slam of the brakes, brought on some contractions. By 6 pm, Mommy wasn't feeling very well. By 10 pm, Mom felt alright and slept fairly well through the night. Rylee vomited at our visit and at home in the evening with a slight fever, decided to take a visit to the doctor the next morning.
Day 6, 8/2/10 7:30 am, after a quick shower to help relax from all the contractions, Mommy went to work. At 9:20 am, Visited Dr. Rose, 10:00 am went to hospital for blood draw, mommy wasn't feels so well, 1:00 pm Mommy decided to time the contractions, 2:45 Mommy got in the car to go to 34 week OB appointment, 3:20 pm arrived at the clinic with painful contractions, 4:00 pm doctor finally came in to see Mommy, 4:20 pm being loaded on a stretcher and into an ambulance, 4:30 pm arrived at hospital, 4:35 pm seen Dr. Berger, 5:00 pm got epidural 5:30 pm Dr. B broke water, 7:00 pm started pitocin, 9:45 pm broke down the room for delivery, 9:52 pm started pushing, 9:57 pm Weston Robert Klauer came into this world and was sent to the NICU
Day 7 8/3/10 Spent at the hospital NICU and recovering. Weston doing well except for grunting while breathing.
Day 8 8/4/10 Mommy released from the hospital.
Day 9 thru Day 24 8/5/10 to 8/20/10 Divided time between home and the NICU with Weston. 8/15/10 (Day 19) Become an aunt AGAIN to Lily Evelyn. 8/19/10 (Day 23) Took Rylee to her 18 month well child appointment. She was 28.5 inches long and 15 lbs, 8 oz.
Day 25 8/21/10 Brought Weston home after 19 days!
Day 26 thru Day 29 8/22/10 to 8/25/10 Hung out around home, enjoying visitors!
Day 30 8/26/10 Noticed Rylee's incision was broke open and could see something black. Called the Doctor and made an appointment for the following day
Day 31 8/27/10 2:30 pm met Dr Alison who all but freaked out about the incision. She called UW peds neurosurgery about this and made us an appt for Monday. She removed Rylee's stitches that didn't dissolve like they were suppose to and instructed us to go to the UW ER if it opened again before our appointment and ordered some antibiotics.
Day 32 8/28/10 Rylee broke her incision open at 2 pm which started bleeding. At 5 pm did it again but this time was accompanied by crying and a temp. 7 pm arrived at UW ER, 10 pm new antibiotics and homebound
Day 33 8/29/10 Spent the day at home with some visitors and got ready for our 3 appointments on Monday
Day 34 8/30/10 8:55 am met with GI doctor, 9:20 met Dr Bragg, Rylee's new neurosurgeon, who said the black thing we seen was a stitch holding the shunt together, pretty much exposed as well as the shunt. Tapped the shunt and took some blood to test for infection at which she thought was probably neg. Scheduled shunt revision surgery for 7:45 the following morning.
Day 35 8/31/10 8:05 am took Rylee back for surgery, 10:00 am Dr Bragg came in say that just as she was finishing up the revision surgery, the lab called saying the cultures were positive so taken the entire shunt out. 11 am, surgery was done and they just needed to place a picc line. 12:45 pm Got taken back to recovery to see her
Day 36 9/1/10 Happy Birthday Daddy! First night in the PICU was uneventful.
Day 37 thru 41 9/2/10 to 9/6/10 Kris and I split out time between home and the PICU.
Day 42 9/7/10 Surgery was at 11:30 am to place the shunt back in. Dr Bragg switched the side of the shunt to her left. She had to tunnel a new catheter from her brain to her belly and had a hard time routing it down around her neck area because she's so thin. Rylee has orange hair with none on top.
Day 43 9/8/10 Today we are hoping to go home. Rylee has to have a quick brain scan, which isn't schedule so we're at their will for times, and then hopefully can go home.
Thank you all that called, text us and sent us prayers yesterday. It meant a lot and we appreciate more than you know. It's funny how something so tramatic happens like this, you really find out who cares and who doesn't. Some come to visit, while others can't even pick up the a couple seconds to call. True colors were shown yesterday and it was my feelings that were hurt. Not much I can do about it now but move on! Keep your fingers crossed that we can come home today. Everyone needs it, especially our dogs and house!
Monday, September 6, 2010
Visitors
Oh my goodness, you guys are amazing. I did a little begging for visitors and bam you came running! The last few days have gone amazingly well for Rylee. Other than having to keep her from standing in her crib, she's been a good girl. My sister in law Katrina, aunt Lisa and sister, Carmen, came Friday night and played, put her bed and watched her sleep so that Weston, Troy and I could go to my dad's rehearsal supper. Primarily we went home because Weston was extremely fussy during the night, which woke Rylee each time and left me pacing the room the entire night. Needless to say, I was exhausted. I was almost to the point of no return on my lack of sleep. I was whiny and grumpy and my poor husband was well rested, which made me bitter. So we deviced a plan that if family was willing to help take care of Rylee in our absence that we would take them up on the offer. I decided that it was important to go to my dad's wedding rehearsal (smart choice) since I had family coming to visit. Rylee was left alone all night but the nurses took great care of her and she slept through the night.
Saturday, Kristopher and I decided that it would work out best if he took Weston to the hospital and I took Troy to the wedding (since we were both in it). Again, smart decision! My sister, Erin, and her family and my sister-in-law Katrina and her son, Adam, each came to visit on Saturday. She lit up and had a great time with them. Kristopher and Weston left after Rylee had went to sleep for the night and came home to go to the reception. It worked out well.
Yesterday morning we left rather early, later than I would've liked, to head to Madison to be with Rylee for the day. My friends Dana and Aaron came to visit around 11, my brother Craig, his wife and their daughter, Lily, came at 1, my sister Erin and her family followed; my Aunt Debbie and her husband came too, then my in-laws also and my Uncle Tim, Aunt Jean and cousin Anne. We had constant visitors from 1 until 6 but Rylee loved every single second of it. Needless to say, she crashed at the early hour of 7 pm. It was a great day for her. She absolutely loves visitors. It's a change of pace for her. Last night, Troy, Weston and I went home. We got some relatively good sleep. That was surprising since Weston slept all day. He was awake until midnight but at least it wasn't all night.
This morning, we got up and made a quick stop at WalMart. Troy Thomas has grown and we found out how much when this chilly weather came. We don't have jeans or many long sleeve tops that fit him. So we made a quick stop at WalMart to pick up a few essentials like a few pairs of pants, tops, undies and socks. We didn't have an actual potty chair. He's preferred to use a potty seat on the big potty. I was reading online that naked time or undies time was good and to have a potty chair in the room with him. So I set the potty chairs out on the floor at WalMart and let him pick out his favorite one. He choice a Cars potty chair that has a shifter that makes noise and all. Then I let him pick out a pack of undies, which he choice Sesame Street. Then we headed up to Madison. Kristopher's brother and his family were going to the Madison Children's Museum so Kris and Troy headed over to play with them (or from what Kris said, lack there of). While they were gone, Kris's parents came to visit as well as my sister and niece. My dad and his new wife came later as well as my Aunt Lisa and Uncle Jeff. Rylee liked my Uncle Jeff a lot. They played and played. Tonight after Rylee fell asleep, Kris, the boys and I went to grab a bite to eat. Kristopher dropped me off at the hospital and headed for home. Upon arriving to Rylee's room, her night nurse told me that surgery is scheduled for 11:30 tomorrow. However, the neurosurgery resident said 7:30 earlier today when I signed the forms. I am not sure when the surgery is. Oh well. I am flying solo on this one I am afraid, either when they take her away or when they come get me for recovery (and I'll have Weston). Right now, I am super tired. I am going to hit the hay for a couple of hours and wake Rylee to eat before midnight. Please pray that all goes well tomorrow for everyone. Please pray that Kristopher gets some sleep, he's flying solo with Weston (and troy) tonight.
Saturday, Kristopher and I decided that it would work out best if he took Weston to the hospital and I took Troy to the wedding (since we were both in it). Again, smart decision! My sister, Erin, and her family and my sister-in-law Katrina and her son, Adam, each came to visit on Saturday. She lit up and had a great time with them. Kristopher and Weston left after Rylee had went to sleep for the night and came home to go to the reception. It worked out well.
Yesterday morning we left rather early, later than I would've liked, to head to Madison to be with Rylee for the day. My friends Dana and Aaron came to visit around 11, my brother Craig, his wife and their daughter, Lily, came at 1, my sister Erin and her family followed; my Aunt Debbie and her husband came too, then my in-laws also and my Uncle Tim, Aunt Jean and cousin Anne. We had constant visitors from 1 until 6 but Rylee loved every single second of it. Needless to say, she crashed at the early hour of 7 pm. It was a great day for her. She absolutely loves visitors. It's a change of pace for her. Last night, Troy, Weston and I went home. We got some relatively good sleep. That was surprising since Weston slept all day. He was awake until midnight but at least it wasn't all night.
This morning, we got up and made a quick stop at WalMart. Troy Thomas has grown and we found out how much when this chilly weather came. We don't have jeans or many long sleeve tops that fit him. So we made a quick stop at WalMart to pick up a few essentials like a few pairs of pants, tops, undies and socks. We didn't have an actual potty chair. He's preferred to use a potty seat on the big potty. I was reading online that naked time or undies time was good and to have a potty chair in the room with him. So I set the potty chairs out on the floor at WalMart and let him pick out his favorite one. He choice a Cars potty chair that has a shifter that makes noise and all. Then I let him pick out a pack of undies, which he choice Sesame Street. Then we headed up to Madison. Kristopher's brother and his family were going to the Madison Children's Museum so Kris and Troy headed over to play with them (or from what Kris said, lack there of). While they were gone, Kris's parents came to visit as well as my sister and niece. My dad and his new wife came later as well as my Aunt Lisa and Uncle Jeff. Rylee liked my Uncle Jeff a lot. They played and played. Tonight after Rylee fell asleep, Kris, the boys and I went to grab a bite to eat. Kristopher dropped me off at the hospital and headed for home. Upon arriving to Rylee's room, her night nurse told me that surgery is scheduled for 11:30 tomorrow. However, the neurosurgery resident said 7:30 earlier today when I signed the forms. I am not sure when the surgery is. Oh well. I am flying solo on this one I am afraid, either when they take her away or when they come get me for recovery (and I'll have Weston). Right now, I am super tired. I am going to hit the hay for a couple of hours and wake Rylee to eat before midnight. Please pray that all goes well tomorrow for everyone. Please pray that Kristopher gets some sleep, he's flying solo with Weston (and troy) tonight.
Friday, September 3, 2010
Rylee update
I think this is post #456 titled "Rylee update". I couldn't think of anything better. I have had quite a lack of sleep lately so give me a break. You'll probably read run on sentences, misspellings and punctuation problems but I don't care!
Rylee went into surgery at 8:05 am on Tuesday, 8/31. As far as the doctor knew, the CF culture from the shunt tap on Monday was negative. Dr Bragg was just finishing up the shunt repositioning surgery when the lab called. The culture grew out, her shunt was positive for infection. I am still unsure exactly the kind of infection, some say staph infection, others say they're not entirely sure yet. Anyway, Dr. Bragg came in to tell us the lab had just called and that she was going to go back in since Rylee was still under to remove the shunt entirely. There wasn't a dry eye in that room when she delivered the news. I can honestly say that for the third time in Rylee's young life I was scared that she would die. Maybe that sounds trival but there was infection so close to her brain and spinal fluid. I was scared for her and still am. At 11 am, Dr. Bragg stopped back in the room to tell us that she was finished but that they'd like to have a PICC line placed since she's having so many surgeries. It would make blood draws easier and then they don't have to stick her to do another IV. Finally at 12:30, after 4 and half hours, I got to go back to the recovery and see her. She was awake already this time. Dr. Bragg put in an EVD, external ventricular drain, to drain the spinal fluid from her brain so her head had a white band around it to secure that. By 3 pm, she was in a lot of pain. A little morphine helped her tremendously and she hasn't required any pain medicine since. Tuesday night, Kristopher stayed with Rylee and I took the boys home.
Wednesday was Kristopher's birthday so I baked a cake at midnight Tuesday night and brought it up to celebrate. Kris took Troy to the new Children's Museum to play and hang out together while Rylee, Weston and I stayed back to hold down the fort. She was sitting up, playing with toys and books and watching tv. Kristopher again stayed the night while the boys and I went home.
Thursday, Weston had a doctor appointment with Dr. Connolly. According the measurements, he has grew an inch and a half and gained 1 lb, 2 oz since birth. He told me that Dr. Allison met him at the door Monday morning to tell him about Rylee. She worried about her all weekend. I filled him in on what has been going on. He always asks how Kris and I are doing in which I can usually honestly say "fine". This time I said "We're doing the best we can. We're trying to do what's best for each child." He then asked how Troy was handling it. I just lost it then. Earlier that morning, Troy kept constantly asking where Rylee was in which I replied "at the doctor with boo boos". That's how he explained it to us one time so to keep it simple, that's what we tell because we know he semi-understands that way. We had decided that during Weston's doctor appointment and the limbo time before Kris would take him that it would be best for him to go to Tara, the babysitter's, to play. I put him in the van, told him to climb up in his "cool cool carseat" while I got Weston and when I came back to load Weston, Troy was sitting on the floor next to Rylee's carseat playing with it. When I asked him what he was doing, he looked at me with the saddest face and said "I sad. I want WYLEE" and started crying big tears. I hugged, explained that she didn't feel good and had to stay for a little while longer but would be home soon. He misses her plain and simple. He comes to visit but she's pretty much confined to her bed and has to stay in one position so he can't really play with her or hug her or love her up like he's used to. I told Dr. Connolly about what happened that morning, he said he's worried about Troy. I think we're going to see if a child life specialist can come and talk with him about this stuff. He understands that she has "boo boo's" but doesn't understand why she can't come home. I don't know how to help, I think that he would benefit from seeing someone. I also met Dr. Connolly's wife, I guess we're family friends now or something. He popped his head in the room as I was going to load Weston in his carseat to see if his wife could see him. She was smitten over him! After we left, we headed up to Madison. I met Kristopher on the road between Mineral Point and Belmont, we waved at each other and that was all I got to see of him for the day. I don't think you can even count that as seeing one another. Last night was a bunch of playing with toys, watching tv and just laying around. My aunt Lisa came to visit. I had a fussy, squirmy boy who thought he had to be held all the time. So her visit was extremely helpful, she was my saving grace!
Today, we're just doing the same old same old. She just got a bath and is a little fussy because they're messing with her. Overall, she's happy and extremely friendly with everyone. She loves visitors. Anyone who comes in has to come over to play with her because she's so darn bored. So if you happen to be wandering the halls of the UW Children's hospital, PLEASE come visit her.
Tomorrow is my dad's wedding. Rylee has a beautiful dress that her grandma Klauer made for her but it will just hang in her closet. She won't be there. Kristopher is going to come up and stay the night with her while the boys and I do our thing at the wedding.
The tentative plan is for Rylee to have her EVD removed and a new shunt placed on Tuesday, spend another night, go home on Wednesday. At least it's a holiday weekend so Kris and I can share the responsibilities better and Troy doesn't have to be shipped off somewhere. So for the next 5 days, we're just hanging out. I again beg that if you're in the area, please stop by and see her, she'd love it!
Rylee went into surgery at 8:05 am on Tuesday, 8/31. As far as the doctor knew, the CF culture from the shunt tap on Monday was negative. Dr Bragg was just finishing up the shunt repositioning surgery when the lab called. The culture grew out, her shunt was positive for infection. I am still unsure exactly the kind of infection, some say staph infection, others say they're not entirely sure yet. Anyway, Dr. Bragg came in to tell us the lab had just called and that she was going to go back in since Rylee was still under to remove the shunt entirely. There wasn't a dry eye in that room when she delivered the news. I can honestly say that for the third time in Rylee's young life I was scared that she would die. Maybe that sounds trival but there was infection so close to her brain and spinal fluid. I was scared for her and still am. At 11 am, Dr. Bragg stopped back in the room to tell us that she was finished but that they'd like to have a PICC line placed since she's having so many surgeries. It would make blood draws easier and then they don't have to stick her to do another IV. Finally at 12:30, after 4 and half hours, I got to go back to the recovery and see her. She was awake already this time. Dr. Bragg put in an EVD, external ventricular drain, to drain the spinal fluid from her brain so her head had a white band around it to secure that. By 3 pm, she was in a lot of pain. A little morphine helped her tremendously and she hasn't required any pain medicine since. Tuesday night, Kristopher stayed with Rylee and I took the boys home.
Wednesday was Kristopher's birthday so I baked a cake at midnight Tuesday night and brought it up to celebrate. Kris took Troy to the new Children's Museum to play and hang out together while Rylee, Weston and I stayed back to hold down the fort. She was sitting up, playing with toys and books and watching tv. Kristopher again stayed the night while the boys and I went home.
Thursday, Weston had a doctor appointment with Dr. Connolly. According the measurements, he has grew an inch and a half and gained 1 lb, 2 oz since birth. He told me that Dr. Allison met him at the door Monday morning to tell him about Rylee. She worried about her all weekend. I filled him in on what has been going on. He always asks how Kris and I are doing in which I can usually honestly say "fine". This time I said "We're doing the best we can. We're trying to do what's best for each child." He then asked how Troy was handling it. I just lost it then. Earlier that morning, Troy kept constantly asking where Rylee was in which I replied "at the doctor with boo boos". That's how he explained it to us one time so to keep it simple, that's what we tell because we know he semi-understands that way. We had decided that during Weston's doctor appointment and the limbo time before Kris would take him that it would be best for him to go to Tara, the babysitter's, to play. I put him in the van, told him to climb up in his "cool cool carseat" while I got Weston and when I came back to load Weston, Troy was sitting on the floor next to Rylee's carseat playing with it. When I asked him what he was doing, he looked at me with the saddest face and said "I sad. I want WYLEE" and started crying big tears. I hugged, explained that she didn't feel good and had to stay for a little while longer but would be home soon. He misses her plain and simple. He comes to visit but she's pretty much confined to her bed and has to stay in one position so he can't really play with her or hug her or love her up like he's used to. I told Dr. Connolly about what happened that morning, he said he's worried about Troy. I think we're going to see if a child life specialist can come and talk with him about this stuff. He understands that she has "boo boo's" but doesn't understand why she can't come home. I don't know how to help, I think that he would benefit from seeing someone. I also met Dr. Connolly's wife, I guess we're family friends now or something. He popped his head in the room as I was going to load Weston in his carseat to see if his wife could see him. She was smitten over him! After we left, we headed up to Madison. I met Kristopher on the road between Mineral Point and Belmont, we waved at each other and that was all I got to see of him for the day. I don't think you can even count that as seeing one another. Last night was a bunch of playing with toys, watching tv and just laying around. My aunt Lisa came to visit. I had a fussy, squirmy boy who thought he had to be held all the time. So her visit was extremely helpful, she was my saving grace!
Today, we're just doing the same old same old. She just got a bath and is a little fussy because they're messing with her. Overall, she's happy and extremely friendly with everyone. She loves visitors. Anyone who comes in has to come over to play with her because she's so darn bored. So if you happen to be wandering the halls of the UW Children's hospital, PLEASE come visit her.
Tomorrow is my dad's wedding. Rylee has a beautiful dress that her grandma Klauer made for her but it will just hang in her closet. She won't be there. Kristopher is going to come up and stay the night with her while the boys and I do our thing at the wedding.
The tentative plan is for Rylee to have her EVD removed and a new shunt placed on Tuesday, spend another night, go home on Wednesday. At least it's a holiday weekend so Kris and I can share the responsibilities better and Troy doesn't have to be shipped off somewhere. So for the next 5 days, we're just hanging out. I again beg that if you're in the area, please stop by and see her, she'd love it!
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