Sunday, October 24, 2004
Friday, October 22, 2004
The surgery — fundoplication
Well, today is October 22nd and after this week of waiting and test analysis, the doctors decided that they would recommend the G-tube and the fundoplication. We had input from the neo-natologist team including the surgeon and the OT. So, it appears now that her reflux has been quite severe this past month. She would arch her back and grimace in pain, which we thought was painful gas. Adrienne saw on a few occasions that she would have a Bowel movement and gas without much fuss, but that she would still have pretty steady bouts of obvious pain. This is due to the reflux. It doesn't always bring the bile and stomach contents up as vomit, it quite often just travels up the esophagus and burns.
So, with that information, we also concurred and decided on the G-tube and fundo. She was scheduled as the 2nd neonatal surgery this morning and Adrienne and I went up to the hospital and arrived just a bit too late to see her before surgery. She was already down in the OR. We went to the waiting room and signed in and within 30 minutes a doctor came in to ask us to sign for consent to use a mainline IV since every other IV they have tried to keep in her over the last week had popped out. (She was beginning to be pretty marked up with needle tracks.) So, we listened to the risks involved and signed away. They found a vein in her leg (femoral artery, I think) which we found out later.
We waited for a LONG LONG TIME. I suppose there is nothing much worse than waiting for your kid to get out of surgery. We saw surgeons come and go and talk to other families waiting on their kids ... we still waited. Finally, around 1 PM when we were moving around and stretching the nurses at the desk said they would check up on her. Trying not to listen in on conversations is hard, but I at first had great fear that something had gone wrong, and then we found out that she had been moved upstairs more than 30 minutes ago.Our surgeon did not do us the courtesy of coming out after the surgery to tell us that it all went smoothly ... I was about to burst a vain myself. Luckily for me, Adrienne was there, because I had to hold it together for her if not for Olivia too. The nurses all realized that this was quite a blunder and were very apologetic. Very nice of them, but it was not their fault at all. So, we went back upstairs (the nurses downstairs phoned ahead to tell them that we were on the way up and not too happy at being left waiting) and signed in. The nurses again were very sweet and pleasant to us, while we waited to talk to someone who knew anything. There was a resident there who was very busy dealing with the paper work and did not now anything about the surgery. We waited at least another hour upstairs, but at least this time we were able to see Olivia. The G-tube is quite a rig. It is hard to describe without drawing it out. She was still out from the surgery, and had a tube down her trachea to help her breathe (this thing was forcing about 25 rpms and she was registering about 40ish rpms, so she was breathing pretty well on her own.) which is a fairly standard practice for such a small baby.
In another day (by this Saturday, I hope) that tube will be gone and she will have nothing attached to her face. no tubes in her nose, no IV's in her head ... I will have to make sure to get some pictures of her since they also put a nice pink cap on her head, which hides the shaved hair and the needle marks.
So, we finally talk to the surgeon. He offers no apology for leaving us out of the loop, yet I stay calm and focus on the main issues ... Olivia and the surgery. He says it all went rather well, and she lost only a little bit of blood during the surgery for the fundoplication. We will now just wait and go through the routine of getting her back on a formula feed while they slowly give her fluids and stuff via IV and some through the G-tube to see how much she can handle at a time. By next week, we should be ready for the overnight stay and "care by parent" where we feed her and deal with cleaning the G-tube dressing and relearn her feeding signals and watch that the reflux is beaten back. If all goes well, she will be coming home in less than 2 weeks ... we can only wait and see. that is it for now ... Andrew
So, with that information, we also concurred and decided on the G-tube and fundo. She was scheduled as the 2nd neonatal surgery this morning and Adrienne and I went up to the hospital and arrived just a bit too late to see her before surgery. She was already down in the OR. We went to the waiting room and signed in and within 30 minutes a doctor came in to ask us to sign for consent to use a mainline IV since every other IV they have tried to keep in her over the last week had popped out. (She was beginning to be pretty marked up with needle tracks.) So, we listened to the risks involved and signed away. They found a vein in her leg (femoral artery, I think) which we found out later.
We waited for a LONG LONG TIME. I suppose there is nothing much worse than waiting for your kid to get out of surgery. We saw surgeons come and go and talk to other families waiting on their kids ... we still waited. Finally, around 1 PM when we were moving around and stretching the nurses at the desk said they would check up on her. Trying not to listen in on conversations is hard, but I at first had great fear that something had gone wrong, and then we found out that she had been moved upstairs more than 30 minutes ago.Our surgeon did not do us the courtesy of coming out after the surgery to tell us that it all went smoothly ... I was about to burst a vain myself. Luckily for me, Adrienne was there, because I had to hold it together for her if not for Olivia too. The nurses all realized that this was quite a blunder and were very apologetic. Very nice of them, but it was not their fault at all. So, we went back upstairs (the nurses downstairs phoned ahead to tell them that we were on the way up and not too happy at being left waiting) and signed in. The nurses again were very sweet and pleasant to us, while we waited to talk to someone who knew anything. There was a resident there who was very busy dealing with the paper work and did not now anything about the surgery. We waited at least another hour upstairs, but at least this time we were able to see Olivia. The G-tube is quite a rig. It is hard to describe without drawing it out. She was still out from the surgery, and had a tube down her trachea to help her breathe (this thing was forcing about 25 rpms and she was registering about 40ish rpms, so she was breathing pretty well on her own.) which is a fairly standard practice for such a small baby.
In another day (by this Saturday, I hope) that tube will be gone and she will have nothing attached to her face. no tubes in her nose, no IV's in her head ... I will have to make sure to get some pictures of her since they also put a nice pink cap on her head, which hides the shaved hair and the needle marks.
So, we finally talk to the surgeon. He offers no apology for leaving us out of the loop, yet I stay calm and focus on the main issues ... Olivia and the surgery. He says it all went rather well, and she lost only a little bit of blood during the surgery for the fundoplication. We will now just wait and go through the routine of getting her back on a formula feed while they slowly give her fluids and stuff via IV and some through the G-tube to see how much she can handle at a time. By next week, we should be ready for the overnight stay and "care by parent" where we feed her and deal with cleaning the G-tube dressing and relearn her feeding signals and watch that the reflux is beaten back. If all goes well, she will be coming home in less than 2 weeks ... we can only wait and see. that is it for now ... Andrew
Sunday, October 17, 2004
Dealing with reflux
Adrienne has been seeing Olivia and getting to talk with various doctors and folks each day ... different doctors offered different opinions to what they want to see and what they will try to do. Olivia seemed to have a bit of trouble working with bottles for feeding ... and She would spit up fairly often. We were feeling that her reflux was showing itself and needing to be addressed. The only other person who felt this way and was expressing the same concern was Heather, the Occupational Therapist (OT) who really can observe and translate the various patterns and see something in it. She has been one of our dearest advocates.
So, while we were trying to get the doctors and nurses to observe and understand the same issues, we headed into a valley after being on a peak (more like a plateau, but who's really keeping track of the topography around here?) On Friday morning we had a call from the hospital to tell us that Olivia had been aspirating (fluid in the lungs, do to inhaling spit up or saliva or a mouthful of milk) and that she was then being sent to level 3. The day before they had taken quite a bit of blood (well quite a bit is relative, but for a baby who is not quite 5 lbs, any amount is "quite a bit") which is no small task at all with babies...the old heal pricking and squeezing ... Adrienne said it was awful to see, but that she was thankful that she was there to help sooth our little Olivia after the fact ... We later found out that they nurses seemed to be willing to let any of our visitors feed her a bottle if they happened to be there during a feeding time ... This was very upsetting. She doesn't take a bottle easily and it is not a trivial matter to get her to drink and swallow and keep it down. This had happened the night before ... is there a link, who knows,
but we had to move forward and find out what her story was. ...
She apparently caught an infection as well due to this and was therefore given antibiotics and even her blood count dropped so she had to have an infusion of blood too. She also had to be pretty much revived by use of chest compressions briefly to get her going again when a nurse caught her aspirating ... (this we just found out today, I need to pick these people's brains and find out what they know and do to our little girl so we can be aware of it ... I trust their decisions and their abilities, but the communication is severely lacking IMHO)
We went into last weekend knowing that she was back to the critical level and that our concerns were being taken more seriously at last. I got to see her last Sunday Oct. 10th. She had the IV in her head since she would kick it out of her foot (or the vein would close up or collapse) and they had shaved a patch of hair off her head. I still got to hold her for a while and she would be alert for short periods of time and pass gas (a true Schultz trait I believe) and I did have to clean up her chin from small spit ups ... she seemed to be on the verge of a bradycardia (sp?) here and there (that is a sudden drop in heart rate usually accompanied by a respiratory anomaly: holding her breathe or just not breathing) ...
Adrienne got tot talking with the doctors and they started leaning towards wanting to put in a G-tube in her stomach so that we could take her home sooner and feed her that way, while working with an OT to help her develop her jaw muscles ... along with the G-tube is the idea of doing fundoplication ... which is a wrapping of part of the stomach around the esophagus to help control reflux. Many people thought that the fundo was not really something we should absolutely do, and even the doctors seemed reluctant to commit to this procedure. Adrienne had been going up all this past week, and Olivia was moved back to level 2 which is good, but still continued to have issues with reflux and spitting up even without taking formula from a bottle.
After she came back to level 2 they ran the Barium test to check for reflux and how well her whole eating process works...and of course we saw what the OT and Adrienne already suspected. ....
We anticipated Friday to be the day for the surgery, but the doctors backed down and wanted Olivia to be completely over her infection and off the antibiotics...that was fine with me for now. So, we talked about it all and talked with other people about it all and they leaned this way and then that way...In the meantime, I went up to the NICU to take the infant CPR class and then was able to see Olivia after that. They had been trying to keep the IV in her during the whole week and it kept coming out. They ended up putting it in her head in about 4 or 5 different places and shaved half of her hair off ... a real butchered up coif now ... and she had such pretty curls too. It is a real shame that she has to look like Frankenstein right now, but I guess that is the way it goes for now ... I did notice a very big change in her ability to open her mouth wide and yawn and make the spontaneous smile or smirk and generally express herself. I talked to the OT and she was a real comfort and very positive and supportive. It was nice to be able to hold her for a while again until Adrienne came up to see her...Of course on my way home I was stuck on the SW
Freeway and parking area because of some overturned truck on 59 near Fondren ... took an hour to get from the med center to work.
Finally on Friday, the surgeons and the doctors and anyone else who seemed to have an opinion on Olivia finally started getting closer to the same page in the book. They wanted to really check out the Barium test results again more thoroughly. Yes, she does have a reflux problem which needs closer attention, and that maybe the G-tube and fundoplication is the best bet ... that was quite a day on Friday and then it took me about 45 minutes to travel the 4 miles from work to my house because of some loser who decided to run from the police in a semi-tractor trailer truck and take out a few cars along the way ... luckily nobody was really hurt and the cops didn't even have to kill the poor SOB. ...
Today, Adrienne was able to get some info from the doctors that they want to try to work with Olivia with meds before trying to surgery ... I was hoping for this sort of route myself ... there are drugs for reflux and acid build up (she has both) and I hope they work without messing up anything else.
Oh, and last week one of the doctors reminded us that we will have to make sure and monitor her heart because the VSD is still prevalent and could pose a risk in the future ... so, the congenital heart defects may come back to haunt us and need surgery to correct in the future ... let us hope that they don't, but it is nice to be aware of the possibilities.
... that is all for now, take care everybody and drop us a line as you are able. ...
Andrew
So, while we were trying to get the doctors and nurses to observe and understand the same issues, we headed into a valley after being on a peak (more like a plateau, but who's really keeping track of the topography around here?) On Friday morning we had a call from the hospital to tell us that Olivia had been aspirating (fluid in the lungs, do to inhaling spit up or saliva or a mouthful of milk) and that she was then being sent to level 3. The day before they had taken quite a bit of blood (well quite a bit is relative, but for a baby who is not quite 5 lbs, any amount is "quite a bit") which is no small task at all with babies...the old heal pricking and squeezing ... Adrienne said it was awful to see, but that she was thankful that she was there to help sooth our little Olivia after the fact ... We later found out that they nurses seemed to be willing to let any of our visitors feed her a bottle if they happened to be there during a feeding time ... This was very upsetting. She doesn't take a bottle easily and it is not a trivial matter to get her to drink and swallow and keep it down. This had happened the night before ... is there a link, who knows,
but we had to move forward and find out what her story was. ...
She apparently caught an infection as well due to this and was therefore given antibiotics and even her blood count dropped so she had to have an infusion of blood too. She also had to be pretty much revived by use of chest compressions briefly to get her going again when a nurse caught her aspirating ... (this we just found out today, I need to pick these people's brains and find out what they know and do to our little girl so we can be aware of it ... I trust their decisions and their abilities, but the communication is severely lacking IMHO)
We went into last weekend knowing that she was back to the critical level and that our concerns were being taken more seriously at last. I got to see her last Sunday Oct. 10th. She had the IV in her head since she would kick it out of her foot (or the vein would close up or collapse) and they had shaved a patch of hair off her head. I still got to hold her for a while and she would be alert for short periods of time and pass gas (a true Schultz trait I believe) and I did have to clean up her chin from small spit ups ... she seemed to be on the verge of a bradycardia (sp?) here and there (that is a sudden drop in heart rate usually accompanied by a respiratory anomaly: holding her breathe or just not breathing) ...
Adrienne got tot talking with the doctors and they started leaning towards wanting to put in a G-tube in her stomach so that we could take her home sooner and feed her that way, while working with an OT to help her develop her jaw muscles ... along with the G-tube is the idea of doing fundoplication ... which is a wrapping of part of the stomach around the esophagus to help control reflux. Many people thought that the fundo was not really something we should absolutely do, and even the doctors seemed reluctant to commit to this procedure. Adrienne had been going up all this past week, and Olivia was moved back to level 2 which is good, but still continued to have issues with reflux and spitting up even without taking formula from a bottle.
After she came back to level 2 they ran the Barium test to check for reflux and how well her whole eating process works...and of course we saw what the OT and Adrienne already suspected. ....
We anticipated Friday to be the day for the surgery, but the doctors backed down and wanted Olivia to be completely over her infection and off the antibiotics...that was fine with me for now. So, we talked about it all and talked with other people about it all and they leaned this way and then that way...In the meantime, I went up to the NICU to take the infant CPR class and then was able to see Olivia after that. They had been trying to keep the IV in her during the whole week and it kept coming out. They ended up putting it in her head in about 4 or 5 different places and shaved half of her hair off ... a real butchered up coif now ... and she had such pretty curls too. It is a real shame that she has to look like Frankenstein right now, but I guess that is the way it goes for now ... I did notice a very big change in her ability to open her mouth wide and yawn and make the spontaneous smile or smirk and generally express herself. I talked to the OT and she was a real comfort and very positive and supportive. It was nice to be able to hold her for a while again until Adrienne came up to see her...Of course on my way home I was stuck on the SW
Freeway and parking area because of some overturned truck on 59 near Fondren ... took an hour to get from the med center to work.
Finally on Friday, the surgeons and the doctors and anyone else who seemed to have an opinion on Olivia finally started getting closer to the same page in the book. They wanted to really check out the Barium test results again more thoroughly. Yes, she does have a reflux problem which needs closer attention, and that maybe the G-tube and fundoplication is the best bet ... that was quite a day on Friday and then it took me about 45 minutes to travel the 4 miles from work to my house because of some loser who decided to run from the police in a semi-tractor trailer truck and take out a few cars along the way ... luckily nobody was really hurt and the cops didn't even have to kill the poor SOB. ...
Today, Adrienne was able to get some info from the doctors that they want to try to work with Olivia with meds before trying to surgery ... I was hoping for this sort of route myself ... there are drugs for reflux and acid build up (she has both) and I hope they work without messing up anything else.
Oh, and last week one of the doctors reminded us that we will have to make sure and monitor her heart because the VSD is still prevalent and could pose a risk in the future ... so, the congenital heart defects may come back to haunt us and need surgery to correct in the future ... let us hope that they don't, but it is nice to be aware of the possibilities.
... that is all for now, take care everybody and drop us a line as you are able. ...
Andrew
Wednesday, October 06, 2004
At one month
Olivia is doing pretty good. She is still in the NICU in the med center. (She is a month old as of Oct 3rd) she weighs just under 5 lbs and seems to be resisting any attempt at diagnosis. The experts want to label her as having some syndrome or another, but have been unable to really fit her into any mold. She has been taking some feedings from a bottle, but still has the tube through her nose to her stomach for most feedings. We have yet to find out how much longer she will be there. ... I apologize for not being regular with the updates lately. It seems like all the days are just the same: hurry up and wait. That sums it up. So, we are taking just a day at a time and are trying to keep Andy and Sara on their regular schedule and spend time with them. Someone told us that Olivia won't remember if we are late to a visit with her, but that the other kids definitely will. It has been quite an adventure so far, and I am sure it is really just beginning. ... I will try to be more prolific soon. I started the updates to help me remember what has happened and as sort of a journal ( a friend of mine has set up a "Blog" sight with the 3 main updates posted on it, and I will forward that link too) I hope to write some more soon, if I can remember what has happened
Ok, that is a small version of the recent past ... I am going to try and elaborate with the rest of this one.
I left off with Ivan and Jeanne ... that was at least 2 weeks ago ... I wrote the 3rd part on the 14th. So, for the rest of that week I don't have any real details. Dang!, I should have just forced myself to write something. Time has had a way of really slipping through my fingers and my mind lately.
The rest of that week was pretty routine, I think. Olivia moved from Level 3 to Level 2, which is the "growing" level, no serious monitoring going on in here. She is past the critical phase, ei, she is NOT going to go into cardiac arrest or anything else. She had gained her more normal pale infant hue and was no longer looking jaundiced. She was steadily gaining weight and Adrienne has been holding steadfast in her daily visits. The various doctors are more elusive than WMDs in Iraq it seems. They had hemmed and hawed for a while, and then decided on doing more tests.
So, for the week of the 14th to the 17th (I think it was that week) They did a stool test, and decided that she had too much sugar in her stool ... This led them to think that the bladder might not be functioning properly which in turn led them to think that she might have a tethered spinal cord. OK. we held on for that bit of info and did our trusty Google search on "tethered spinal cord" and found that it can be very serious but very treatable. Alright, we figured that we will just have to do the wait and see ... This led them to decide on running an MRI for her spine and while they were there they thought they would go ahead and check out her brain. The need for the brain MRI came about partly due to her inability to properly take food from a bottle. So, they ran those tests, and meanwhile the weekend approached and I went out and got myself a nasty cold. That weekend, I did not go see Olivia ... bummer. Adrienne saw her again that whole weekend.
So, for the week of the 20th and the 24th, we awaited test results. OK Brain and spinal cord are normal ... spinal cord is tethered within normal range ... no problems there ... there is talk of bringing in the geneticists again to check her out. We are told that she could have Cornelia de Lange Syndrome (CdLS) and we of course run our google check on that. This is something that could be extremely scary and disheartening. What if she is severely affected? Many questions and emotions ran their natural course. (This is probably one reason why I have not updated anything, the other being just general fatigue) Sometime that week I was able to have a lengthy talk with Crit ... (thanks for that one, man, it is good to be able to bounce the world off each other's head every once in a while) So, the doctors are reluctant to label Olivia as having any syndrome, but quite a few of the signifiers fit her. She may not be as affected as others and maybe more than some ... Adrienne and I talked about things as often as our bodies allowed us to stay awake long enough in the evening to talk. I feel calm about it all. It is a bit unsettling and difficult to talk about any possibility that is beyond the "normal" range, but I personally don't have any real problem with raising a special needs child if that is what Olivia turns out to be ... There are plenty of web sights detailing families coping with CdLS children and quite a few of them are only slightly "delayed" in their development. Most of the children are quite a bit smaller than their peers, and have gastrointestinal disorders like reflux. Olivia's major issue right now is the underdeveloped lower jaw. This is what seems to be restricting her ability to take a bottle easily. If she can figure out how to do it, then she will have really taken a big bite out of the whole Pi (sic). Then she will only have another percentage of the "pie are squared" equation to work out ... man, that is some sorry math joke ...
So, there it is. I have thrown down the gauntlet. I am not sure if Olivia is absolutely a CdLS child, but if she is, we know there is a wide reaching group of people from which to draw support, as well as from all our friends and family. I did finally get to see her again on the 26th of September. I tried my hand at feeding her, and did not do very well. She needs to be kept awake and alert while she drinks. Our other kids would practically fall asleep while nursing, but Olivia will have difficulty if she gets too relaxed. So, she spit up most of what I fed her and then fell asleep. But, she was up to 4.25 lbs, which is awesome, and she looks pretty good. I finished up a role of film with her being the main focus of it, but I have yet to make it to Walgreen's or Eckerd's or someplace ... need to do that ... I am curious as to how the pictures have come out.
As for the week of the Sept 27th through Oct 1st, it was similar. Adrienne has been able to get information a bit at a time, and get the nurses in the NICU to check out Olivia's chart on the computer and find out when the various "experts" came by to see her ... We are beginning to feel that if she does have CdLS, and that she will have delayed development (especially in the feeding from a bottle category) then, she may as well come home and let us take care of her full time. We may have to push for our point of view to be taken seriously. I know it will be a challenge to bring her home while feeding is an issue, but we will have to deal with it sometime, I mean we can't put it off forever, and besides, the HMO is bound to want her shipped out sooner rather than later. We shall see.
In the meantime, Sara has finished her 1st 6 weeks of 4th grade (A's and B's) and Andy is enjoying preschool quite a bit (if only for Tues and Thurs) He has had the pleasure of being entertained by his Grandparents for a few hours on the Mon Wed and Fri days this past month. The Schultz side and the Evans/Tillman side. Sara has been shifted back to 1st base in softball, and has made a number of nice catches for outs there too. I will try to get the film developed soon and then send some pics up to Crit to put onto this Blog sight ... please feel free to send comments or thoughts to us at anytime.
Last week I again felt horrid sinus pain on Sunday (Oct 3rd) and was unable to visit Olivia and had to send Adrienne up for the afternoon feeding. We thought that we might get some word on when they would want to release Olivia and maybe send her home with a GI tube in her stomach. This may end up being our best bet. It would save a bit on our personal wear and tear of traveling to see her, and also give us the opportunity to try and boost the number of bottle feedings each day. Plus I would get to see her every day as well. So, here we are October 5th. Olivia is a month old and she probably is up to 5 lbs by now. (I will ask Adrienne to check that out tomorrow if she has the time).
Okay now, take care everybody.
be seeing you, Andrew and famil
Ok, that is a small version of the recent past ... I am going to try and elaborate with the rest of this one.
I left off with Ivan and Jeanne ... that was at least 2 weeks ago ... I wrote the 3rd part on the 14th. So, for the rest of that week I don't have any real details. Dang!, I should have just forced myself to write something. Time has had a way of really slipping through my fingers and my mind lately.
The rest of that week was pretty routine, I think. Olivia moved from Level 3 to Level 2, which is the "growing" level, no serious monitoring going on in here. She is past the critical phase, ei, she is NOT going to go into cardiac arrest or anything else. She had gained her more normal pale infant hue and was no longer looking jaundiced. She was steadily gaining weight and Adrienne has been holding steadfast in her daily visits. The various doctors are more elusive than WMDs in Iraq it seems. They had hemmed and hawed for a while, and then decided on doing more tests.
So, for the week of the 14th to the 17th (I think it was that week) They did a stool test, and decided that she had too much sugar in her stool ... This led them to think that the bladder might not be functioning properly which in turn led them to think that she might have a tethered spinal cord. OK. we held on for that bit of info and did our trusty Google search on "tethered spinal cord" and found that it can be very serious but very treatable. Alright, we figured that we will just have to do the wait and see ... This led them to decide on running an MRI for her spine and while they were there they thought they would go ahead and check out her brain. The need for the brain MRI came about partly due to her inability to properly take food from a bottle. So, they ran those tests, and meanwhile the weekend approached and I went out and got myself a nasty cold. That weekend, I did not go see Olivia ... bummer. Adrienne saw her again that whole weekend.
So, for the week of the 20th and the 24th, we awaited test results. OK Brain and spinal cord are normal ... spinal cord is tethered within normal range ... no problems there ... there is talk of bringing in the geneticists again to check her out. We are told that she could have Cornelia de Lange Syndrome (CdLS) and we of course run our google check on that. This is something that could be extremely scary and disheartening. What if she is severely affected? Many questions and emotions ran their natural course. (This is probably one reason why I have not updated anything, the other being just general fatigue) Sometime that week I was able to have a lengthy talk with Crit ... (thanks for that one, man, it is good to be able to bounce the world off each other's head every once in a while) So, the doctors are reluctant to label Olivia as having any syndrome, but quite a few of the signifiers fit her. She may not be as affected as others and maybe more than some ... Adrienne and I talked about things as often as our bodies allowed us to stay awake long enough in the evening to talk. I feel calm about it all. It is a bit unsettling and difficult to talk about any possibility that is beyond the "normal" range, but I personally don't have any real problem with raising a special needs child if that is what Olivia turns out to be ... There are plenty of web sights detailing families coping with CdLS children and quite a few of them are only slightly "delayed" in their development. Most of the children are quite a bit smaller than their peers, and have gastrointestinal disorders like reflux. Olivia's major issue right now is the underdeveloped lower jaw. This is what seems to be restricting her ability to take a bottle easily. If she can figure out how to do it, then she will have really taken a big bite out of the whole Pi (sic). Then she will only have another percentage of the "pie are squared" equation to work out ... man, that is some sorry math joke ...
So, there it is. I have thrown down the gauntlet. I am not sure if Olivia is absolutely a CdLS child, but if she is, we know there is a wide reaching group of people from which to draw support, as well as from all our friends and family. I did finally get to see her again on the 26th of September. I tried my hand at feeding her, and did not do very well. She needs to be kept awake and alert while she drinks. Our other kids would practically fall asleep while nursing, but Olivia will have difficulty if she gets too relaxed. So, she spit up most of what I fed her and then fell asleep. But, she was up to 4.25 lbs, which is awesome, and she looks pretty good. I finished up a role of film with her being the main focus of it, but I have yet to make it to Walgreen's or Eckerd's or someplace ... need to do that ... I am curious as to how the pictures have come out.
As for the week of the Sept 27th through Oct 1st, it was similar. Adrienne has been able to get information a bit at a time, and get the nurses in the NICU to check out Olivia's chart on the computer and find out when the various "experts" came by to see her ... We are beginning to feel that if she does have CdLS, and that she will have delayed development (especially in the feeding from a bottle category) then, she may as well come home and let us take care of her full time. We may have to push for our point of view to be taken seriously. I know it will be a challenge to bring her home while feeding is an issue, but we will have to deal with it sometime, I mean we can't put it off forever, and besides, the HMO is bound to want her shipped out sooner rather than later. We shall see.
In the meantime, Sara has finished her 1st 6 weeks of 4th grade (A's and B's) and Andy is enjoying preschool quite a bit (if only for Tues and Thurs) He has had the pleasure of being entertained by his Grandparents for a few hours on the Mon Wed and Fri days this past month. The Schultz side and the Evans/Tillman side. Sara has been shifted back to 1st base in softball, and has made a number of nice catches for outs there too. I will try to get the film developed soon and then send some pics up to Crit to put onto this Blog sight ... please feel free to send comments or thoughts to us at anytime.
Last week I again felt horrid sinus pain on Sunday (Oct 3rd) and was unable to visit Olivia and had to send Adrienne up for the afternoon feeding. We thought that we might get some word on when they would want to release Olivia and maybe send her home with a GI tube in her stomach. This may end up being our best bet. It would save a bit on our personal wear and tear of traveling to see her, and also give us the opportunity to try and boost the number of bottle feedings each day. Plus I would get to see her every day as well. So, here we are October 5th. Olivia is a month old and she probably is up to 5 lbs by now. (I will ask Adrienne to check that out tomorrow if she has the time).
Okay now, take care everybody.
be seeing you, Andrew and famil
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