MOVING

we found a much bigger, and much cleaner home to move into, so Shailee will have a good place to come home to when she is able to. we are going to start moving tomorrow, but i will still try to update tomorrow night. but we plan to get the rest of the things moved on Saturday, so there will not be any updates from Saturday to Tuesday. the cable company isn't able to come hook up our service at the new house until tuesday morning, so we will not have internet during this time, but i will update again on tuesday nig...

Read more »

Thursday,April 30, 2009 Another New Update

Shailee is still stable and doing well. she now weighs 6 pounds 12 ounces, so she is doing well with weight gain. they have her up to 74 cc's of formula every 4 hours, and she is still tolerating her feeds well. she also had a good blood gas test this morning so they turned her ventalator pressure down to 12 today, so hopefully that will keep improving. they are still doing the teatments for her to help stop her from having her really bad spells. she has had a couple minor spells but nothing serious. we are going to go up and see her on sunday so i should have some new pictures then, as long as i don't misplace my camera in the middle of movi...

Read more »

Wednesday, April 29, 2009 Shailee's Update

I have called and checked on shailee a few times today, and she is doing ok. she is being given breathing treatments a little more regularly to help prevent her from having her spells, and so far it has been helping out alot. She is still just taking it easy and they are not doing alot to her because they are trying to get her healty enough to go to surgery. the geneticist's office called me today with some news from their further chromosome testing, and they are saying that the "unknown" addition that she has on one of her #5 chromosomes is actually some of the deletion from the other chromosome #5. so basically what i know is that part of one #5 deleted or broke off and attached to the other #5, so she still has the deletion, and she still has the cri-du-chat diagnosis, but she may not be...

Read more »

Wednesday, April 29, 2009 Newspaper Article

The story about Shailee was in our local paper today. here is the link: http://www.dailychiefunion.com/I know you will be able to access today and tomorrow, but i am not sure once it is a couple days old if you will be able to see it or not, but if i can get a different link i will post it as we...

Read more »

Tuesday, April 28, 2009 Today's Updates

I have called and checked on Shailee through out the day today, and she did have a couple of spells overnightlast night but thank god they weren't major ones and she brought herself out of it. the nurse told me today that she has had a really good day today, and there were no problems. she has spent the day today resting and catching up on her sleep. the lung doctor said that her chest x ray looked much better but is still somewhat hazy, and they are still looking into getting her something to help get that fluid out of there. she is still eating 71 cc's of formula every 4 hours and they said that she is tolerating her feeds great, so that is good. other then that there are no new updates, i will update more tomorrow. her article is suppose to be in our local paper tomorrow, so if it actually...

Read more »

Monday, April 27, 2009 Today's Update

Sorry i am late posting again, we have been really busy trying to get things packed to movethis weekend,but keep checking back b/c i will always get the updates up sooner or later. I talked with the hospital several times yesterday, and she has had two of her spells (bronch spasims) during that time. the last one wasn't as bad as normal and she came back just with a breathing treatment, but the first one they had to bag her and put her breathing tube in deeper to get her out of it. they did a chest x-ray yesterday too but i haven't got the results on it yet. she is still raspy sounding but there isn't much that they can give her to help that right now with the heart meds that she must have but they are trying to figure something out. the surgeons came in and looked at her foot and said that...

Read more »

Sunday, April 26,2009 Today and Yesterday's Update

Sorry i didn't update yesterday, but we had a busy day here as we had a birthday party for the boys and had alot of people over. But Shailee is still doing good. she is stable, and resting. we went to see her today, but there are no new pictures because i left and forgot my camera. she was uped to 71 cc's of formula today and she is tolerating it well. she is also getting her last dose of the antibiotic today, but she is still very raspy sounding but she is having a chest x-ray tomorrow so they will go from there. she will be having her cast removed tonight and a new one put on tomorrow as well. we spoke with her heart doctor today and he told us that she is making baby steps in the right direction, which is good, and she is improving well. he did say that she will eventually have to have...

Read more »

Friday, April 24, 2009 Another Quiet Day

I have called and checked on Shailee several times today and she is doing good and is still stable. she was uped to 70cc's of formula every 4 hours and she is still tolerating her feeds ok. They told me that she has just been resting alot today. she is still raspy but they are going to try a stronger antibiotic to see if that will help clear it up more. other then that there have been no changes today. i will update more tomorr...

Read more »

Thursday, April 23, 2009 A Quiet Day

I have called and checked on Shailee several times today and she is doing just fine today. she hasn't had anymore problems today, and has been resting all day today. they raised her up to 69 cc's of formula today, and that is the only change today. other then that they have left her alone to rest after the day she had yesterday. so she is doing good and is stable which is all that matters. i will update more tomorr...

Read more »

Wednesday, April 22, 2009 A Very Scary Day

We went to see Shailee today, and all was well and she was stable. But she had a very bad episode today where her oxygen started dropping and suctioning her wasn't helping and then her heart rate started dropping dramatically, they called down for Albuterol right away because they thought that it was just from her pnuemonia and the phlegm, she was given 4 puffs of the medication, but that didn't help at all, so they had to bag her to keep her oxygen and heart rate up and she was turning blue fast. they thought that there was a plug (phlegm) stuck in the breathing tube so they had to take out her tube and reintubate her with a new tube, it took them two tries to get the new tube in and they had to bag her in between but they got it in and she...

Read more »

Tuesday, April 21, 2009 Today's Visit

Me and Shaina went to see Shailee today, and she is still stable and doing good. She is handling the new heart medication very well, and they switched her to the oral diuretic today as well. There are no changes today. she was very sleepy when we were there today so she wasn't awake much. they checked her liver out because she was on the lipids for so long but everything came back good. she was sucking on her tubes today, not just the tounge motion she wrapped her lips around it this time and was sucking on the tube! so i hope that means that her mouth functions are coming together. other then that there are no changes today. i will update more tomorrow after i get back from seeing her. and i will upload more pictures tomorrow because photobucket isn't working right for some reas...

Read more »

Monday, April 20, 2009 My Visit With Shailee Today

We went to see Shailee again today, and she is still doing good. She is up to 66 cc's of formula every 4 hours, and she is still handling her feedings really good. they did a chest x-ray today and her lungs still look a bit hazy, but they are getting better. they switched her to the oral heart medication and stopped the milrinone from the iv drip, and they also switched her to oral antidiuretics, so right now the only thing that she is getting through the iv is the antibiotic, and she has to have that for a total of 10 days and once that is done they are going to take out the pic line and she will not have any iv's at all! the cardiologist said that the heart is looking good and all is going well with the new heart medication. the pediatric...

Read more »

Sunday, April 18, 2009 Updates From Our Visit Today

We went to see Shailee today, and she is still doing ok, and is stable. She now weighs 6 pounds 3 ounces, but once again that is including the cast on her leg, but it weighs very little. They are increasing her formula to 63 cc's due to the weight gain as well. She is still on antibiotics but instead of being on 2 she is only on 1 kind. She still has the pnuemonia but it is only in the left lung, and it is improving, but there is a staff infection in the tube that goes into her, but they assured us that it isn't a dangerous type of staff infection and that it isn't the type that gets into your blood, they also said it is very common since the tubes area foriegn body. Her ophalecele is looking great! it is much smaller and the new skin is coming...

Read more »

Saturday, April 18, 2009 Another Day With Little News

Shailee is still doing ok today, she is stable, and less irritable. She is still tolerating her feedings well, and she is still eating the same amount. She has been dropping her oxygen levels frequently today due to the high number of secretions that she has, so the doctor put her on a new medication to help reduce the secretions. She is now taking Robinul 3 times a day to help with this problem. She is still on the same oxygen settings, and the same heart medications along with the antibiotic. Outside of that there really isn't anything new to post as they are not doing alot with her right now other then letting her rest so she can get rid of the pnuemonia and become more stable. we are going to see her tomorrow so i will update more when we get back and post new pictur...

Read more »

Friday, April 17, 2009 Not Alot Of News Today

There hasn't been a whole lot that has changed with Shailee today, she is still stable, and her chest x-rays are still coming up the same. They did do a blood transfusion on her today to get her red blood cell count up, and since they did that her skin is much pinker (she was very pale), and she hasn't been having the bad spells like she was. After they did the transfusion they also gave her LASIK (antidiuretic) so she wouldn't have a fluid over load since she has pnuemonia as well. They are also having her lay with her left side up because she has more fluids in her left lung then the right so it is suppose to help break it up, and they are also doing chest therapy with her as well to help break some of the stuff up in her lungs. they tell me that she is acting much better today after the...

Read more »

Thursday, April 16, 2009 Will Things Ever Start Looking Up?

I have been on the phone with Shailee's nurses several times today, and they haven't gave me the best news today. Shailee is still stable and doing ok, but she had to be put on antibiotics today because she has a mild case of phnemonia. She started having her spells again today where she gets very irritable and arches up and then her oxygen and heart levels drop, so they did a blood culture and chest x-ray to come to their diagnosis. her white blood cell count is up which means there is an infection, and her chest x-ray came back a little hazy again. they are going to do another chest x-ray tomorrow to check it out again as well. But they are pretty sure that the antibiotics will clear it all up without any problems, they also think that once it is all cleared up that it is going to result...

Read more »

Wednesday, April 15, 2009 Another Not So Good Day

We went to see Shailee today, and as usual of the few hours that we get to spend with her we spend most of that being bombarded by doctors. Shailee is still stable, and comfy, but the doctors didn't bring us very hopeful news today, but we will get to that in a minute. First of all, her heart echo came back good and the heart function is still improving. they still haven't lowered her heart medications but that is because they want to wait until they figure out when she will go into surgery (i will get to that as well). if she doesn't go to surgery soon they will begin to wean her from the heart medication to see how she does. She is wasn't quite up to a full feeding but is now, she is up to 63cc's and that is where she will stay until she...

Read more »

Tuesday, April 14, 2009 Shailee's Updates For Today

Shailee is still stable and doing well. She is up to a full feeding now (a little over 2 ounces) so that is great news! The heart doctor came and looked at her today and scheduled another heart echo to look at the heart function before he decides if it is ok to lower the heart medications. They are doing a bronch exam on her tomorrow to look at her airways and her throat to help determine if she is going to need a trach or not. they attempted to gag her today, but there was no luck. Her oxygen levels are still pretty low, they are between 22% and 23% today, which is still way better then 50%. the LNP called me today with the results from Shailee's EEG, and she said that there was no sign of seizure activity so they are ruling that out which was great news to hear. Other then that there really...

Read more »

Monday, April 13, 2009 A Few Changes For Today

Shailee is doing better today, she is back down to 21% oxygen which is way better then yesterday. The EEG still hasn't been read so we don't know about the seizures yet, but i should be able to find out about the test results sometime tomorrow. Shailee hasn't has an antidiuretic today, and she is still having secretions, but not as bad. they feel that that she may be having so many secretions due to irritation from the tubes in her throat. Her labs today have looked good so far, and in a couple of days they will be doing a follow up kidney and bladder x-ray to make sure they are still looking good. She was recasted (third time) today and her foot is still looking good. she is also up to 49cc's of formula every 8 hours, and they have stopped the tpn and lipids through the iv so she is getting...

Read more »

Sunday, April 12, 2009 There Has To Be Some Steps Backward

Shailee had a rough night last night and day today. She was having these "spells" and was very irritable so they had to sedate her to get her to rest. they think that she may be having siezures, so they are going to do an ECG on her tomorrow to see if that may be the case. they also had to adjust her et tube (repirator) and turn her oxygen back up to 50% because her secretions were so bad they were suctioning her every 15 minutes, so they had to give her an antidiuretic to help get rid of some of the fluids, which as of the last phone called really seemed to be helping because she hadn't been suctioned in over an hour. the thing is that they are not sure where all these secretions are coming from so they are checking into that as well. her last chest x-ray looked hazy so they are also going...

Read more »

Saturday, April 11, 2009 Our Visit To See Shailee

We went to see Shailee today, and she is still doing good. They haven't changed any of her medications. She is up to 37 cc's of formula every 8 hours now, and they are still slowly weaning her off of the iv nutrition as well. Her belly is still healing well, and her heart rate and oxygen levels are staying pretty steady as well. We took her her very first Easter Bunny today as well. They moved her into a different room again, but she is just one room down from where she was. She had a pretty easy day today, she didn't have any lab work done, so she had a little break. There really aren't any other updates for today, but there are some new pics, and she is yawning in one (she just ate and was sleep...

Read more »

Friday, April 10, 2009 Today's Updates

I talked with the nurses today as well as one of the doctors. Shailee is up to 31 cc's of formula every 8 hours now, and they are still uping her formula the same as they were. And for my mom, who keeps asking me how many cc's are in an ounce, well the answer is 30 cc's is 1 ounce so she is having 1 ounce and 1 cc every 8 hours. which isn't much but it is a start. Shailee has also gained 1/2 an ounce, which once again isn't much but it is better then losing more weight. They told me that all of her lab work is still coming back good. her heart echo results weren't in yet, but they told me that everything must have looked good or they would have changed something or ordered something else, which they didn't do, so i guess no news is good news in this case. I was also told that they drew more...

Read more »

Thursday, April 9, 2009 Nothing Too Exciting Today

I have spoke with the nurses several times today, and not much has changed with Shailee today. She is up to 25 cc's of formula every 8 hours now, and they are going to continue to up her formula 2 cc's every 8 hours, so 6 cc's more every 24 hours! she is still doing great with the formula as well. Shailee had another heart echo done today (even though they said they weren't doing another for a couple weeks, suprise!) but the results wont be back until sometime tomorrow. She is also going to be having a follow up head ultrsound in the next few days to make sure that everything still looks good with her brain as well. Also another one that gets me is the geneticist who told me that he wasn't going to check her again until she was 6 months (if she makes it that far according to him), well guess...

Read more »

Donation Site

We have found a website where donations can be made to us via paypal. We will still get a p.o. box as soon as we can, but for the time being you can use the following site to make donations over the internet. if you have any question feel free to email me.http://www.digitalcharity.com/m.php?id=68...

Read more »

Wednesday, April 8, 2009 Our Visit Today As Well As More News

We went to see baby Shailee today, and all in all she is doing good. They raised her formula again she was taking 18 cc's earlier but they were putting her on 20cc's every 4 hours starting at 4 pm today. She is still doing well with the formula which is a good thing. She is still pottying good and without the aid of a supository. She is still on her respirator due to her high level of secretions as well as the fact that she can't swallow. She is still out of her icolete and in a more normal bed that isn't completley closed in, and she was still in clothes today as well. She woke up for about 45 minutes today so we got to play with her a little, then they gave her some food and she was out like a light. Sister Maxine Young came down and did...

Read more »

Tuesday, April 7, 2009 An Uneventful Day

I spoke with Shailee's nurses several times today, and there really isn't much to update on today. They have uped Shailee's formula to 12 cc's every 4 hours instead of 5 cc's and she is still doing really good with it. She didn't have any labs or tests done today so she pretty much had a day of rest. She was still out in the crib today, and the nurse said she spent most of her day looking around and checking everything out, and cat napping. We will be meeting with her geneticist tomorrow so hopefully i will know a lot more about her then, and lets all pray for good news with no more suprises because i don't know how many more suprises i can take. I will update more on Shailee tomorrow after we get back from visiting h...

Read more »

Tuesday, April 7, 2009 Our Family

I have had alot of people ask about our family and wanting to know a little about us. Well I am the mom, Stacy, and my husband is Bill. I am 25 and Bill is 39. We have a total of 7 children (2 of them we currently don't see). My children (before me and Bill) are Austin age 9 (will be 10 April 20th), and Chase age 6 (will be 7 April 13th), then my children (with bill) are Shailyn age 1 (will be 2 May 14th), and Shailee age 1 week 6 day (but you know all about her), Then there is my step daughter who is her with us quite often and her name is Shaina age 16. My husband works full time (actually over full time more like 50+ hours a week) and he is also a full time college student studying for degrees in human services as well as criminal justice....

Read more »

Monday, April 6, 2009 Another Day And More Waiting

I didn't get to go see my little girl today, but i have been on the phone with the nurse checking on her 4 different time today already. Shailee has been having a good day, she is still stable. I wish i could be there to see her today, the nurse has her out of her isolete and in a crib, but she has clothes on her today and a blanket, but she is hoping that she will be able to be out Wednesday when we go up too. we are still unable to hold her but that is because if they have her propped up she gets more secretions in her throat and it will affect her oxygen and heart rate :( they are still suctioning her regulary to keep her airways clear, and that is because she doesn't swallow. They told me today that she does have a gag but not enough of one yet, and the swallowing usually follows the gag...

Read more »

Sunday, April 5, 2009 Another Visit And More Unwanted News

We went to see Shailee today, she was still stable, which is what we want. Shailee is still intubated (breathing tube down her throat). She didn't get any lab work done today, they are waiting until Monday to do her chest x-ray, ekg, and all the other blood work they do. The pediatric surgeon gave the ok to give Shailee a little formula in her feeding tube tomorrow to see how she will handle it, so hopefully everything will remain ok and she will finally get to try it out.We met with Shailee's endocrinologist for the first time today, to find out that they are concerned with Shailee's pituitary gland and its ability to produce her body's hormones. He feels that she may have a pituitary deficency. He told us that her Cortisol levels are good,...

Read more »

Saturday, April 4, 2009 My Visit To See Shailee

I went and spent a few hours with Shailee today. She is still doing good and is stable. Once again she was unable to have formula today due to her dijoxen levels being too high, but they are going to lower the amount of her heart med to correct that and maybe try tomorrow for the formula. They dropped her respirator from level 40 to level 35 and she is still breathing at 21% (room air, like us). Her blood gases were still coming back good today as well. They are suctioning secretions from her throat about every 2 hours, which they said is because she has the tubes in her throat so she is unable to clear it out on her own. She has lost a total of 8 oz. since she has been there so she is down to 5 lbs. 1 oz. Shailee stayed awake for about an...

Read more »

Friday, April 3, 2009 Another Update For Today

I know i updated already, but i just got off the phone with the hospital and i just had to post this stuff now. Shailee is still doing good. The nurse told me that Shailee DOES GAG!! she gagged 3 times on the suction tube today! They said that they don't know if it is going to be an effective gag or not but we should know for sure in a month tops. they also told me that they found that she has a dual pelvis but they said that it isn't anything to worry about and it isn't going to hurt anything, basically she has a pelvis bone on top of another one, just one more way she is unique. they gave her the suppository and she did poo!! so they are going to give her a little formula tomorrow through her feeding tube!! they got the results back from her heart echo and they said that everything still...

Read more »

Friday, April 3, 2009 A Couple Updates

We called the hospital and checked on Shailee today. There really isn't a whole lot of new news but her respirator levels have been dropped twice today, and her blood gases are looking good. They are going to check them again in the morning and if they are still looking good they might take the respirator tube out of her throat and put the one back in her nose. Which i think will make her alot happier and more comfortable. Her kindey echo came back and everything there looks good there, and she is still peeing like normal. They are talking about giving her a supository because she hasn't had a bowel movement in a while, and they are still talking about trying some formula on her to see how she will handle it. Other then that she is still doing the same, she is stable and progressing slowly....

Read more »

Thursday, April 2, 2009 You Take The Good With The Bad

We went to see Shailee today. She seemed very uncomfortable today but i think it is because they intubated her again (put the oxygen tube down her throat) which they had to do because her blood gases were still too low. But she had her tounge hanging out and was messing with the tube most of the time, and when i said something about her tounge the nurse that was on duty (one i have never met until today) was very short and rude and tried to tell me that it was part of her syndrome but i have never seen or heard anything about the tounge hanging out of their mouths like that, and i have done much research. And maybe it will be a thing for her, but i just find it odd that in all the pics i have she only has her tounge out in the ones that she...

Read more »

Wednesday, April 1,2009 A Few New Changes

We didn't get to visit today since hubby is sick, and i had a c section and can't drive, not to mention it is an hour and a half drive from home, and we have three other small children at home to tend to as well.....wow things are truly all over the map right now. But i have called and checked in on Shailee several times today (which i do everyday, no matter what). They told me that she is still stable and doing good. She did have another heart echo today as well as a kidney echo but we wont know about them for a day or two. they heart doctor changed her heart medication to something that he feels will be better for her. Her blood gases were a little low today but could just be because of the medication change. they are talking about possibly giving her some formula tomorrow via a feeding...

Read more »

Monday, March 30, 2009 Finally A Little Hope

We went to see Shailee today. She is still stable and doing well. She was a little jaundice today, but nothing out of the normal. Her belly is healing very well, they had her foot casted today when we got there, they are starting to correct the club foot. She will get a new cast every week until it is better, and they feel it is only going to take 2 to 3 castings to correct her foot. She did have a heart flutter today which put her heart rate in the 280's but she corrected it herself and went right back to normal within seconds. The chaplin at the hospital came and did a blessing on Shailee as well. The best news of the day was when her doctor came in to talk to us about the chromosome tests that they did. they still don't have the final report...

Read more »

Friday March 27th, 2009 Grim Outlook

The doctors feel Shailee does have Trisomy 13 or 18 due to all her defects. It seems these are all basic signs of this Chromosome disorder. They sent a grief counselor in to speak with me. She asked a lot of hard questions, but the hardest was, do you want to take her home to die or leave her in the hospital to die there. I didn't know what to say, my stomach twisted in knots and I wanted to vomit. Everyone had given up hope on my angel and they wanted me to decide where to let her die. I told them I would need to talk to my wife before I decided anything. And I held on to my hope that they were wrong. I prayed like I have never prayed before and I asked everyone I knew to pray as well. I asked God to let me go in her place, I begged him to let her live and I would do whatever he wanted me...

Read more »

Thursday March 26th, 2009 It Gets Worse

When I got there the next day I found things to be even worse, they told me that they felt she had Trisomy 13 or 18. These are both very fatal and nobody should ever have to hear those words when it comes to their kids. They weren't going to do much more than keep her stable until her mom got released and could come see her. The chromosome results would be in on Saturday to let us know for sure if it was Trisomy. Everyones outlook was very grim, they didn't give her a chance. She had a heart problems as well. The left side of her heart wasn't pumping like it should but I whispered into my baby girls ear before leaving to come home that night, and I told her, your a Webster, your strong, and you can prove them wro...

Read more »

Wednesday March 25th 2009 Our Angel Comes

On Wednesday March 25th I took my wife to the Hospital for dehydration. Once there they found the babys heart was beating above 200 and didn't go down after giving my wife a IV. At that time the doctor decided to do a emergency C-section. The baby was born at 1:50 PM and her first problem was noticable right away. The baby had a omphalocele.This is a where the abdomen wall doesn't finish forming and some of the internal organs are outside the body. The next thing we noticed was a small gap on the left side of her lips. It is basically a cleft but not in the middle like normal. Next it was her left foot that we noticed. It was curved in our clubbed. Then we saw a skin tag near her left ear. To top it all off her heart rate was still racing.At that time the hospital called in for Life Flight...

Read more »