Well, friends and family. ... we had her back for a week or so. I guess it was almost 3 weeks this time. We got her home on Thanksgiving night. We held our own for those few weeks for a while. The hard part was ALL Adrienne's for sure. She had to haul Olivia and her apparatus to the various doctors that she had to see. We had put in a request for a small much more portable O2 canister, but it never happened. And since they put her on O2 (that's oxygen to all you non-science folk) we had hoped to get the pulsamoter (sp?) which is the little sensor that is wrapped on her feet and keeps a running record of the O2 level in her blood ... they have these on the little ones in the NICU all the time ... so, we saw some doctors and changed some medication amounts and adjusted the feeding times and tried to keep the little one in the right way.
She started to have a bit more trouble breathing late last week. We tried to suction out any of the mucous and excess junk in her nasal cavity, but did not have much luck. They weekend was much rougher, and Adrienne probably slept around 8 hours all weekend total. She is the one who always be there for Olivia, and she doesn't miss anything.
We wondered what we should do for her ... should we go to the ER again ... (that was not a favorite idea for sure) we called the various doctors, but they were hard to reach. Olivia would have some down time, that seemed to be going well, and then she would wake up and be in a bad way. SO. ... on Monday, Adrienne called our cardiologist and told them that she was bringing Olivia in. They made room in their schedule for her. After a chest X-ray and some other checking, they decided that she needed to be checked into the hospital. Her breathing was so labored and her vitals were bouncing all over the place. I think the first night and last night too, were really rough for her and Adrienne, (Adrienne has stayed up there since Monday night, and will be there until Saturday, when I will not be at work). ... They went through various diagnosis steps and decided up pneumonia. They have been unable to find any bacterial infection or any easy to label viral infection. (no RSV or anything like that) but she had too much fluid in her lungs. Our cardio specialist decided that when she is stable, they will do the PDA procedure. This is a relatively simple surgery, that will clamp off the vein that is still open on the two arteries that leave the heart. This is the main culprit in almost ALL her ailments.
Once this is taken care of, her breathing should improve and she should have a better chance at growing and developing. They also diagnosed her with secondary pulmonary hypertension. This is because of the heart defects that cause her heart to work too hard and the lungs still were not pulling enough blue blood and returning enough oxygenated blood. The two were mixing at the PDA sight ... so, she is stable but not in an alert or active state at all. They have her all hooked up and intubated to have a machine do most of her breathing for her.
Now here we are again just waiting for her to regain some strength and for her chance to have her surgery. In the meantime, we are just hanging in, I am the solo parent at home for this week, and my folks and Adrienne's mom have been doing daytime kid duties with Sara and Andy.
Merry Christmas to you all out there, and stay in touch, I really like to get some emails from you all with your words of encouragement ... I will post again as I have some more news and time to do it ...
— be seeing you, Andrew
Wednesday, December 15, 2004
Sunday, December 05, 2004
Olivia comes back home on Thanksgiving
Hey all,
We finally got her home again on Thanksgiving night ... She came home on 02 (only 1/2 liter rate) which has helped ease her rapid breathing. She is more than a full-time job for Adrienne and I. Adrienne mostly, since I work during the week. Olivia needed to have some suction done for her nasal cavity the first few days she was home, and then she started breathing much better. She has started to respond to her environment like a baby should. She will respond to faces and sounds by looking in the direction of them and she will startle at a loud sound. She will also mimic a face to a degree, i.e., she will stick out her tongue if you get kind of close and do the same ... she has been reaching for the little things that dangle over her in the bouncy seat. and she gave her first true and lengthy smile to Sara!!! Her big sister is one of her favorites. I think it is because she is one person around here who has not poked and prodded and upset her in any way. (Mom and Dad are always changing her and fiddling with her.)
After a couple of appointments ... she saw the surgery team who did the G-tube / fundoplication and they proclaim that she has had a remarkable recovery from that surgery!!! They also thought that she weighed about 6 lb and 14 oz, then Adrienne went to the pulmonary appointment. They pretty much confirmed their thoughts from before ... get the PDA fixed and her lung problems will all but go away ... they also weighed her at 7 lb 4 oz. Mmmmm 6 oz gain in less than 2 hours ... sure. I guess there is know accounting for the human ability to interpret data uniquely. ... So, we are all snug as bugs and hoping to avoid them as well. The appointments also tend to coincide with feedings of Olivia (who can not afford to miss a meal, unlike most of us) which Adrienne somehow managed to give to her ... as well as lug an 02 bottle around too (It is one of those ten gallon tanks on wheels) She is the one who is really doing the hard part ... mine is managing to stay involved at my workplace and make sure the "other" kids (hee hee) get some attention and plenty of time to themselves. ...
(The following is an excerpt from a letter to a family in Michigan who has a new baby who is also a CdLS child) AND it was written by Adrienne!!! woo hoo ...
We finally got her home again on Thanksgiving night ... She came home on 02 (only 1/2 liter rate) which has helped ease her rapid breathing. She is more than a full-time job for Adrienne and I. Adrienne mostly, since I work during the week. Olivia needed to have some suction done for her nasal cavity the first few days she was home, and then she started breathing much better. She has started to respond to her environment like a baby should. She will respond to faces and sounds by looking in the direction of them and she will startle at a loud sound. She will also mimic a face to a degree, i.e., she will stick out her tongue if you get kind of close and do the same ... she has been reaching for the little things that dangle over her in the bouncy seat. and she gave her first true and lengthy smile to Sara!!! Her big sister is one of her favorites. I think it is because she is one person around here who has not poked and prodded and upset her in any way. (Mom and Dad are always changing her and fiddling with her.)
After a couple of appointments ... she saw the surgery team who did the G-tube / fundoplication and they proclaim that she has had a remarkable recovery from that surgery!!! They also thought that she weighed about 6 lb and 14 oz, then Adrienne went to the pulmonary appointment. They pretty much confirmed their thoughts from before ... get the PDA fixed and her lung problems will all but go away ... they also weighed her at 7 lb 4 oz. Mmmmm 6 oz gain in less than 2 hours ... sure. I guess there is know accounting for the human ability to interpret data uniquely. ... So, we are all snug as bugs and hoping to avoid them as well. The appointments also tend to coincide with feedings of Olivia (who can not afford to miss a meal, unlike most of us) which Adrienne somehow managed to give to her ... as well as lug an 02 bottle around too (It is one of those ten gallon tanks on wheels) She is the one who is really doing the hard part ... mine is managing to stay involved at my workplace and make sure the "other" kids (hee hee) get some attention and plenty of time to themselves. ...
(The following is an excerpt from a letter to a family in Michigan who has a new baby who is also a CdLS child) AND it was written by Adrienne!!! woo hoo ...
She has PDA, PFO and VSD - 3 holes in her heart that we were told should not pose a problem to her. Now they were posing a problem. She was put on digoxin for her heart (which they told us if we didn't make sure her heart rate was within limits or were not careful with the dosages that we could kill her ... no pressure there!) They monitored her for another week on the meds and let us take her home. We had her for one week and she started having breathing problems again. We were told to take her to the ER at Herman. Here again, I had to be her advocate against tests that were clearly not needed. They took so much blood and she is such a hard stick (they previously shaved off wonderful curly hair to get IV's to no avail). They thought she was septic and must have some sort of bacterial infection. Cardiology didn't want to own up to her heart being involved after an unchanged Echo. Meanwhile, they are taking blood all the time. I finally got fed up and put my foot down and refused any more blood taken. They were wearing her out and she was not herself and could not be consoled. The resident was bound and determined that she was not tolerating her feeds and insisted that she go on continuous feeds.
Olivia is a very gassy baby and we desperately needed time to vent her tube. I refused continuous feeds, got a little mad and they sent in the Chaplain! I didn't say one mean word (out loud) but my husband says that my face says it all. The pulmonary team came on board and after another chest X-ray it is found that the PDA in her heart is pushing too much oxygenated blood into her heart causing pulmonary edema. Thank You!
We came home on Thanksgiving night! Now we go to clinic appointments very often. She needs the PDA surgery, but she is not big enough. At 6lbs. 4oz. (thanks to the G-tube) she may gain enough for surgery, yet with the syndrome's history of small growth, I don't know if she will gain enough fast enough or be strong enough to withstand the procedure. We are told now that our job is to feed her and keep her from any viruses or infections. (Again, no pressure there!) I guess my long windedness (this is the first time I have written about her, so forgive my ranting) comes down to becoming very bold for your child and insisting on what you believe is a serious problem. I am working now with a very good therapist and friend on what will probably be a long road to get her to be able to swallow properly. We have yet to see a GI specialist outside of the surgery and I do believe that is of great importance. With CdLS, even though there are very similar situations, I see parents charting their own course as it seems that EVERY child is so unique with this syndrome. Now that Olivia is a little older, she was given a confirmed diagnosis of CdLS. I am a very different mother now than I was three months ago. You become the advocate for your child. We love her so immensely and know that God has entrusted her care to us. We are not afraid of what is around the bend so much anymore ... probably because we know that there is always going to be something around the bend. A very good friend of mine told me "Peaks and Valleys, Peaks and Valleys". I know that God is walking us through both! God bless you and your family! This is an awesome responsibility. If you would like to correspond, I promise that I will never write so much again! Otherwise, I hope your son improves everyday. We will add you to our prayers and hope the best for you!
Sincerely, Adrienne and Andrew Schultz
Monday, November 22, 2004
Olivia is back at the hospital
Well, after being home for a week and having a visit to the pediatrician, who is our the Dr. for Andy and Sara as well, we started getting somewhat of a routine. This involved Adrienne not really sleeping. Not a great routine. She had to have feeds every 3 hours for a 30 minute interval with 10 - 15 minutes on either side preparing the food and cleaning up afterwards. Also she has 3 meds to take and of course diapers to change. Our home nurse came by too, and didn't really have too much to offer I must say, but it may help to have a professional around once a week to check it all out. Adrienne did most of the feedings and stuff, since I had to actually go back to work. I did the 11 pm feeding and hopefully had Adrienne asleep by 10 pm so she could get up and do the 2 am feed ... so we had a system going ... Adrienne would get some sleep, I would do dinners and keep the kids from killing each other from cabin fever ... THEN ...
Adrienne didn't like the way she was sounding on Wed the 17th of Nov. She called our Pediatrician and she called Olivia's cardiologist and it was decided that she should be brought back to the hospital. So, Adrienne took her up there and dealt with the parking nightmare and the ER nastiness and finally got just snippy enough to get what she needed for Olivia, which was a clean quiet place to feed her. (This G-tube feeding is not real hard, but you pretty much want it to be done in a sterile environment.)
SO, she was visited by doctors and poked and prodded and finally admitted. And that's where she is right now. She has a room again but not in the NICU (which is too bad, because now she does not have some one looking after her directly full time). The residents and general doctors seem to think that her heart is giving her trouble and the cardiologists are sure that she is just sick. So, they have just about ruined every possible vein drawing blood and generally trying to find out what she has.
OK she is a CdLS child. go and do a google search on CdLS and find any web sight that is an "org" and read about it. These kids are highly susceptible to illness while they are young. Even more so than preemies in general. She probably caught a cold that one of us here at home has been carrying around. Andy is in preschool and has the sniffles ALL THE TIME (or so it would seem) and Adrienne had a cold start up the day Olivia was released. Even though Andy actually washed his hands before getting to touch his sister and Adrienne wore a surgical mask too, she still got sick. SO, Adrienne has been spending the night up at the hospital and this has become much more emotionally difficult than her just being in the NICU or even being diagnosed as CdLS and having the prospect of those difficulties ahead of us.
To top that all off. ... Andy woke up early (I am real early, dark early) Sat am complaining of an ear ache. So, we made it through the rain (on balding tires too) to the Pediatrician's office for the 8:30 am opening and found that he has a pretty standard ear infection ... he was in real pain off and on all Saturday. I got him meds and sat around watching it rain and watching him sleep and waiting for the auto shop to put new tires on my car. ... oh fun day!! As for Olivia, we hope that she can come home this week. And when she does, there will be no visitors for her. I am sorry, but even if she was just a "normal" premature baby, the doctors highly recommend that visitors stay away ... my folks and Adrienne's folks are probably the only exceptions. After this past week, with her getting sick, and having only close family visit and she still getting sick ... I have to follow that advice if I follow anything. If we are lucky, she won't get more ill being in the hospital and being touched and handled by more people (you can hear some nurses and / or doctors coughing out in the hallway, boy am I really feeling confident now) who may or may not wash their hands properly before handling her. ...
I know she has to get her immune system kicked into gear, but with the heart issues along with it, she has a couple of strikes and multiple foul balls already. ... It would appear that she just caught the RSV perhaps or some other version of the common cold, since her nasal cavity was all full up and they had to suction it out periodically ... ARRRGHHH. and now to top it all off ... this horrid rain!!! I think half of Texas will have some sort of cough, scratchy throat or runny nose now, so that's how it is going. If you see me or call me I will sound upbeat and all that, but it sure is getting to be a drag for us and the kids and especially Olivia. Keep in mind that I am writing this at 11pm at night of the end of a LONG 5 days of rain and sick kids ... so, I am kind of ranting. besides that, things are going just swell.
until such time, Andrew
Adrienne didn't like the way she was sounding on Wed the 17th of Nov. She called our Pediatrician and she called Olivia's cardiologist and it was decided that she should be brought back to the hospital. So, Adrienne took her up there and dealt with the parking nightmare and the ER nastiness and finally got just snippy enough to get what she needed for Olivia, which was a clean quiet place to feed her. (This G-tube feeding is not real hard, but you pretty much want it to be done in a sterile environment.)
SO, she was visited by doctors and poked and prodded and finally admitted. And that's where she is right now. She has a room again but not in the NICU (which is too bad, because now she does not have some one looking after her directly full time). The residents and general doctors seem to think that her heart is giving her trouble and the cardiologists are sure that she is just sick. So, they have just about ruined every possible vein drawing blood and generally trying to find out what she has.
OK she is a CdLS child. go and do a google search on CdLS and find any web sight that is an "org" and read about it. These kids are highly susceptible to illness while they are young. Even more so than preemies in general. She probably caught a cold that one of us here at home has been carrying around. Andy is in preschool and has the sniffles ALL THE TIME (or so it would seem) and Adrienne had a cold start up the day Olivia was released. Even though Andy actually washed his hands before getting to touch his sister and Adrienne wore a surgical mask too, she still got sick. SO, Adrienne has been spending the night up at the hospital and this has become much more emotionally difficult than her just being in the NICU or even being diagnosed as CdLS and having the prospect of those difficulties ahead of us.
To top that all off. ... Andy woke up early (I am real early, dark early) Sat am complaining of an ear ache. So, we made it through the rain (on balding tires too) to the Pediatrician's office for the 8:30 am opening and found that he has a pretty standard ear infection ... he was in real pain off and on all Saturday. I got him meds and sat around watching it rain and watching him sleep and waiting for the auto shop to put new tires on my car. ... oh fun day!! As for Olivia, we hope that she can come home this week. And when she does, there will be no visitors for her. I am sorry, but even if she was just a "normal" premature baby, the doctors highly recommend that visitors stay away ... my folks and Adrienne's folks are probably the only exceptions. After this past week, with her getting sick, and having only close family visit and she still getting sick ... I have to follow that advice if I follow anything. If we are lucky, she won't get more ill being in the hospital and being touched and handled by more people (you can hear some nurses and / or doctors coughing out in the hallway, boy am I really feeling confident now) who may or may not wash their hands properly before handling her. ...
I know she has to get her immune system kicked into gear, but with the heart issues along with it, she has a couple of strikes and multiple foul balls already. ... It would appear that she just caught the RSV perhaps or some other version of the common cold, since her nasal cavity was all full up and they had to suction it out periodically ... ARRRGHHH. and now to top it all off ... this horrid rain!!! I think half of Texas will have some sort of cough, scratchy throat or runny nose now, so that's how it is going. If you see me or call me I will sound upbeat and all that, but it sure is getting to be a drag for us and the kids and especially Olivia. Keep in mind that I am writing this at 11pm at night of the end of a LONG 5 days of rain and sick kids ... so, I am kind of ranting. besides that, things are going just swell.
until such time, Andrew
Wednesday, November 17, 2004
Olivia is home
This post by Christian ....
Actually, I'm going to start with a note from Andy to us ...
This e-mail stemmed from a visit we paid to the Schultz's Nov. 6. We were able to hang out for just a couple of hours, going to dinner together and then visiting a little after. Adrienne had just come back from the hospital where they were learning more about when Olivia could come home, and that happened a couple of days later.
So, Andy and Adrienne ... we are happy that your girl is finally home and our prayers are with you. Let us know if there is anything we can do ...
-- Christian
Actually, I'm going to start with a note from Andy to us ...
Crit,
hey man, sorry to not let you know how things are going ... She is home ... came home last Tuesday.
Very high maintenance. We are doing well and Olivia is already more of a baby now, with some of the little behaviors that is expected ... like moving her hand to her mouth and just generally reacting to voices and of course crying pooping and sleeping ... Thanks a ton for dinner and for making room in your schedule to hang out for a bit. I know the kids had a blast ... and some day we will actually hang out until those wee hours just sippin' beers and talking ... until then, give our love to all and hope to hear from you and/or see you guys again soon.
This e-mail stemmed from a visit we paid to the Schultz's Nov. 6. We were able to hang out for just a couple of hours, going to dinner together and then visiting a little after. Adrienne had just come back from the hospital where they were learning more about when Olivia could come home, and that happened a couple of days later.
So, Andy and Adrienne ... we are happy that your girl is finally home and our prayers are with you. Let us know if there is anything we can do ...
-- Christian
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
Tuesday, September 14, 2004
Adrenaline beginning to wear off
I was trying to remember what happened last ... the adrenaline of dealing with something unexpected has begun to wear off and I am in a bit of a fog, that and it is getting late tonight.
Olivia is doing better every day now though, so no real worries there, just no easy answers for any of the questions. I guess I left off on last Wednesday. The X-rays did not show any problems, other than she has fairly small bones in her wrists and ankles. (I am not sure how they can judge this, since all her bones are really small) But, it does not look to be anything that signifies any sort of future handicap ... after her ultrasound of the kidneys, they decided that they wanted to run a full check on them to see if they actually function properly. That didn't happen until yesterday, Sept 13th since they ordered it on Friday and don't do those things on the weekends ...
So, last Thursday, Adrienne was worried about being sick and getting Olivia sick, so she didn't go see her ... that was tough. I went up and was able to do the Kangaroo hold with her, ie, open shirt and Olivia on my chest. She was warm and the room was quiet and we both slept a bit.
I also got to change her diaper. Those sorts of things make her much more real and tangible than just looking at her in her heated crib. (she has never been in the full isolation chamber, just a small crib under a heat lamp. After the Wed tests and poking and prodding this was quite nice. Then on Friday we both went up and got the news about the X-rays and the kidney test. we had a good visit that day too. She slept quite a bit and we took turns watching her. Saturday we all went up to visit and Adrienne got some good time with her in.
But first, in the morning, Sara played her 1st game as a 10U player having to use a hard ball and with another girl pitching. She got on base by a hit pitch (just her foot) and then scored on a sacrifice hit by another player. (her and another teammate got on base and stole to 2nd and 3rd , then came in on the sacrifice) We won the game!! (sorry, Cynthia, I know we will have to play you guys again).
At the hospital, Hermann-Memorial, we found out that there is a place on the 10th floor called the sun-room which has a sort of park built in with spongy floors and some play equipment ... the kids and I spent quite a bit of time playing around up there and then watching TV down on the floor of the NICU. She keeps on trying to be bottle fed, but is not quite ready yet. She struggles with it, and has to learn how to take food that way. They had taken her completely off any extra Oxygen as well, and she only has a tube to feed her going through her nose and into her tummy. She better learn to eat soon from a bottle, because she tends to pull at the tubes and wires monitoring her. She is only off oxygen because she was taking such a low level of extra O2 as compared with our air and she pulled the tubes out of her nose. Boy, talk about stubborn and strong willed...
Sunday, Adrienne went for a visit by herself (with Poppi (Kyle Tillman) driving her up there) then, later that afternoon, I drove up to pick her up with the kids. Adrienne has been holding her as much as possible and changing her as well. Weekends are strange up at the hospital. A sort of skeleton crew runs the place and more people are visiting the other little ones ... some of whom are much more fragile than our Olivia.
Monday ... I went back to work and Adrienne and her mom did the visit. Andy has begun to not enjoy his trips up there as much. It is hard on everybody. The drive.
Parking. Walking. signing in. The other people. The dour faces. The total alienness of it all. Very tiring, very much an enigma of what we regularly understand as reality. I really have been feeling the fog and kind of just going through the
motions. Work was work ... questions of course. some answers. quite a few I don't knows. yadda yadda.
Today was even more surreal. I was at work trying to figure out the 2 projects I have been working on. One is a hideous amalgam of other projects that just won't ever go away and the other is a composition of 4 surveys thrown together ... luckily, I am not in charge of this one. Thanks to Yvonne and Tony for keeping my part alive and kicking. So, as I was going to try to investigate something, the fire alarm goes off, and we think it must be a test. nope. Apparently, someone on the 3rd floor had a paper jam in the copier and it caught on fire (or got hot and started smoking) instead of unplugging the machine, they left it and pulled the fire alarm. This was in an office that is not affiliated with our company, just another company who leases space ... probably one of the Law Firms ... This does wonders for a building. the sprinkler system goes off in the area of the alarm and the water comes out and then down to the 2nd floor and then to the 1st floor (Fairfield building Sw freeway and Commerce Green, Sugar Land) so we just hung around outside and then I came home and then went back (thanks for the ride Scott) and was allowed to go in and get my keys and stuff and leave again ... I didn't go back since I am on Andy and Sara duty for Tuesdays and Thursdays. My area was not damaged, the water came down across the hall, which smells like burnt up plastics and junk.
So, Adrienne was able to get good long visit with Olivia courtesy of her dad driving her this time. The Kidney test results came back clean, so she has good kidneys. She seems to be able to regulate her own body temperature pretty good and she has gained weight. Birth was 3 lb 14 oz then it went down to below 3 lbs and has been going up ever since she started getting fed. She was up to 3 lb 12 oz today. That is a good sign again. She remains an unsolvable riddle to the doctors for now.
Why did she stop growing in utero? I am not sure there will ever be a single answer for that. and I am not sure that we need one. as long as she keeps growing and "passing" the tests I don't care about the"why" at all. So, her job is to learn how to take food from a bottle and she has a specialist in that coming to see her tomorrow. This girl has more doctors than I ever had. she has her own cardiologist!!
I didn't even want to have to say that until I needed one in the distant future, right? so, things are rather routine as far as daily activities go. We do what we do and then rest. I can be a bit numb at times, but Andy and Sara keep me grounded. Adrienne is doing the very best that anyone can under the circumstances. I am glad that she is Olivia's mother, she is getting plenty of attention and love from her
and I know that will never cease. Now, I am pretty tired. it's 11:00 pm
and Ivan is churning up the gulf.
Jeanne is out there now too ... and the rest of the world is but a bleary hazy vision ...
until such time,
Andrew
Olivia is doing better every day now though, so no real worries there, just no easy answers for any of the questions. I guess I left off on last Wednesday. The X-rays did not show any problems, other than she has fairly small bones in her wrists and ankles. (I am not sure how they can judge this, since all her bones are really small) But, it does not look to be anything that signifies any sort of future handicap ... after her ultrasound of the kidneys, they decided that they wanted to run a full check on them to see if they actually function properly. That didn't happen until yesterday, Sept 13th since they ordered it on Friday and don't do those things on the weekends ...
So, last Thursday, Adrienne was worried about being sick and getting Olivia sick, so she didn't go see her ... that was tough. I went up and was able to do the Kangaroo hold with her, ie, open shirt and Olivia on my chest. She was warm and the room was quiet and we both slept a bit.
I also got to change her diaper. Those sorts of things make her much more real and tangible than just looking at her in her heated crib. (she has never been in the full isolation chamber, just a small crib under a heat lamp. After the Wed tests and poking and prodding this was quite nice. Then on Friday we both went up and got the news about the X-rays and the kidney test. we had a good visit that day too. She slept quite a bit and we took turns watching her. Saturday we all went up to visit and Adrienne got some good time with her in.
But first, in the morning, Sara played her 1st game as a 10U player having to use a hard ball and with another girl pitching. She got on base by a hit pitch (just her foot) and then scored on a sacrifice hit by another player. (her and another teammate got on base and stole to 2nd and 3rd , then came in on the sacrifice) We won the game!! (sorry, Cynthia, I know we will have to play you guys again).
At the hospital, Hermann-Memorial, we found out that there is a place on the 10th floor called the sun-room which has a sort of park built in with spongy floors and some play equipment ... the kids and I spent quite a bit of time playing around up there and then watching TV down on the floor of the NICU. She keeps on trying to be bottle fed, but is not quite ready yet. She struggles with it, and has to learn how to take food that way. They had taken her completely off any extra Oxygen as well, and she only has a tube to feed her going through her nose and into her tummy. She better learn to eat soon from a bottle, because she tends to pull at the tubes and wires monitoring her. She is only off oxygen because she was taking such a low level of extra O2 as compared with our air and she pulled the tubes out of her nose. Boy, talk about stubborn and strong willed...
Sunday, Adrienne went for a visit by herself (with Poppi (Kyle Tillman) driving her up there) then, later that afternoon, I drove up to pick her up with the kids. Adrienne has been holding her as much as possible and changing her as well. Weekends are strange up at the hospital. A sort of skeleton crew runs the place and more people are visiting the other little ones ... some of whom are much more fragile than our Olivia.
Monday ... I went back to work and Adrienne and her mom did the visit. Andy has begun to not enjoy his trips up there as much. It is hard on everybody. The drive.
Parking. Walking. signing in. The other people. The dour faces. The total alienness of it all. Very tiring, very much an enigma of what we regularly understand as reality. I really have been feeling the fog and kind of just going through the
motions. Work was work ... questions of course. some answers. quite a few I don't knows. yadda yadda.
Today was even more surreal. I was at work trying to figure out the 2 projects I have been working on. One is a hideous amalgam of other projects that just won't ever go away and the other is a composition of 4 surveys thrown together ... luckily, I am not in charge of this one. Thanks to Yvonne and Tony for keeping my part alive and kicking. So, as I was going to try to investigate something, the fire alarm goes off, and we think it must be a test. nope. Apparently, someone on the 3rd floor had a paper jam in the copier and it caught on fire (or got hot and started smoking) instead of unplugging the machine, they left it and pulled the fire alarm. This was in an office that is not affiliated with our company, just another company who leases space ... probably one of the Law Firms ... This does wonders for a building. the sprinkler system goes off in the area of the alarm and the water comes out and then down to the 2nd floor and then to the 1st floor (Fairfield building Sw freeway and Commerce Green, Sugar Land) so we just hung around outside and then I came home and then went back (thanks for the ride Scott) and was allowed to go in and get my keys and stuff and leave again ... I didn't go back since I am on Andy and Sara duty for Tuesdays and Thursdays. My area was not damaged, the water came down across the hall, which smells like burnt up plastics and junk.
So, Adrienne was able to get good long visit with Olivia courtesy of her dad driving her this time. The Kidney test results came back clean, so she has good kidneys. She seems to be able to regulate her own body temperature pretty good and she has gained weight. Birth was 3 lb 14 oz then it went down to below 3 lbs and has been going up ever since she started getting fed. She was up to 3 lb 12 oz today. That is a good sign again. She remains an unsolvable riddle to the doctors for now.
Why did she stop growing in utero? I am not sure there will ever be a single answer for that. and I am not sure that we need one. as long as she keeps growing and "passing" the tests I don't care about the"why" at all. So, her job is to learn how to take food from a bottle and she has a specialist in that coming to see her tomorrow. This girl has more doctors than I ever had. she has her own cardiologist!!
I didn't even want to have to say that until I needed one in the distant future, right? so, things are rather routine as far as daily activities go. We do what we do and then rest. I can be a bit numb at times, but Andy and Sara keep me grounded. Adrienne is doing the very best that anyone can under the circumstances. I am glad that she is Olivia's mother, she is getting plenty of attention and love from her
and I know that will never cease. Now, I am pretty tired. it's 11:00 pm
and Ivan is churning up the gulf.
Jeanne is out there now too ... and the rest of the world is but a bleary hazy vision ...
until such time,
Andrew
Wednesday, September 08, 2004
Soon after
On Tuesday Sept 7
Adrienne and her mom went to visit Olivia. Adrienne was feeling better and was able to hold her while she was being fed (still through a tube not by bottle, which is pretty standard for many preemies) and that made her feel great!! Both mother and child enjoyed that immensely. She was able to talk to the geneticists for a while and although there are no absolute conclusions about anything along those lines (it may take some time for the dna/chromosome tests to be completed and evaluated) the overall mood is positive. She may have just not been getting enough nourishment from the placenta in the last few weeks, so she stopped growing. She is now playing catchup. She is a fighter though, and definitely lets the nurses know when she is hungry (she is taking much more milk now) and otherwise uncomfortable.
Today, (Wednesday) Adrienne and I both went up to visit for a while. ... (I think we would just camp out there and hold her as long as they would allow, if the Andy and Sara didn't need us to keep their lives somewhat normal). It was another stepping stone day. We finally met the neonatal doctor in charge of her. All the others were just filling in and/or residents reciting the lines given to them by the doctor. It is nice to get in touch with the person making most of the decisions. while we were there, we saw that she is off any IV supplement and does not have the CPAP anymore ... just a little bit a oxygen to supplement her and try help her mend her heart.
Some techs came in to do some of the tests ordered ... yesterday they did a brain scan of sorts ... it may have just been an ultrasound ... that looks fine.
Today they scanned her kidneys to make sure all is flowing normally and also did a full set of X-ray to get a feel for her skeletal structure ... things appear to be positive though ... they want to rule everything out as being a problem or not.
We should have results on all that stuff on Friday.
So, today when most of the action was taking place and they woke up my darling girl I kept talking to her as I have since I met her ... just telling her about the family and letting her get to know my voice. She opened her eyes and seemed to move her head in the direction of my voice!! it may be just her going through the motions, but it was pretty sweet none the less. Now I have much more video tape of her and with her eyes open too.
Thank you for the thoughts and prayers, I really feel that it will all work out eventually.
Thank you for the flower arrangement too, it is really nice.
Mom is doing well, sore again now that the staples are out ...
Sara had a softball practice the other night and is on a good little team with a very mellow coach and assistant ... I am playing bleacher creature this season as planned before all this which is good. Andy is in preschool Tuesdays and Thursdays now and he likes it a lot.
My brother made it through Frances fine ... they were cave dwellers in their house because they boarded it all up. lost power of course (may still be out at this writing) and had some more minor roof damage and another tree down across a fence. They have been eating everything that would otherwise go bad, and sharing well water with the neighbor who has a generator. (to power the well) That is two hurricanes in 1 month.
Now they and the rest of Florida have to watch out for Ivan without the benefit of daily news reports on the TV ... hope it heads another direction ... well, that is all for now. until such time,
Andrew
Adrienne and her mom went to visit Olivia. Adrienne was feeling better and was able to hold her while she was being fed (still through a tube not by bottle, which is pretty standard for many preemies) and that made her feel great!! Both mother and child enjoyed that immensely. She was able to talk to the geneticists for a while and although there are no absolute conclusions about anything along those lines (it may take some time for the dna/chromosome tests to be completed and evaluated) the overall mood is positive. She may have just not been getting enough nourishment from the placenta in the last few weeks, so she stopped growing. She is now playing catchup. She is a fighter though, and definitely lets the nurses know when she is hungry (she is taking much more milk now) and otherwise uncomfortable.
Today, (Wednesday) Adrienne and I both went up to visit for a while. ... (I think we would just camp out there and hold her as long as they would allow, if the Andy and Sara didn't need us to keep their lives somewhat normal). It was another stepping stone day. We finally met the neonatal doctor in charge of her. All the others were just filling in and/or residents reciting the lines given to them by the doctor. It is nice to get in touch with the person making most of the decisions. while we were there, we saw that she is off any IV supplement and does not have the CPAP anymore ... just a little bit a oxygen to supplement her and try help her mend her heart.
Some techs came in to do some of the tests ordered ... yesterday they did a brain scan of sorts ... it may have just been an ultrasound ... that looks fine.
Today they scanned her kidneys to make sure all is flowing normally and also did a full set of X-ray to get a feel for her skeletal structure ... things appear to be positive though ... they want to rule everything out as being a problem or not.
We should have results on all that stuff on Friday.
So, today when most of the action was taking place and they woke up my darling girl I kept talking to her as I have since I met her ... just telling her about the family and letting her get to know my voice. She opened her eyes and seemed to move her head in the direction of my voice!! it may be just her going through the motions, but it was pretty sweet none the less. Now I have much more video tape of her and with her eyes open too.
Thank you for the thoughts and prayers, I really feel that it will all work out eventually.
Thank you for the flower arrangement too, it is really nice.
Mom is doing well, sore again now that the staples are out ...
Sara had a softball practice the other night and is on a good little team with a very mellow coach and assistant ... I am playing bleacher creature this season as planned before all this which is good. Andy is in preschool Tuesdays and Thursdays now and he likes it a lot.
My brother made it through Frances fine ... they were cave dwellers in their house because they boarded it all up. lost power of course (may still be out at this writing) and had some more minor roof damage and another tree down across a fence. They have been eating everything that would otherwise go bad, and sharing well water with the neighbor who has a generator. (to power the well) That is two hurricanes in 1 month.
Now they and the rest of Florida have to watch out for Ivan without the benefit of daily news reports on the TV ... hope it heads another direction ... well, that is all for now. until such time,
Andrew
Monday, September 06, 2004
She is born
Olivia Grace Schultz
She is here now ... a bit earlier than expected and quite a bit smaller
too.
Friday, September 3, 2004 around 3pm 3 lb 14 oz 16 inches. I (Andrew) had gone to work early so I could join a group of us from Fairfield to observe some data acquisition up in Palestine, Tx. Adrienne called me when we were almost there to tell me that her Ob/Gyn had decided that Olivia needed to come out right then ... I continued my field trip and wondered what was going on down in Houston. I seem to not know my voice mail password, so I couldn't get the message from Susan (Adrienne's mom) with the details until the drive home, when she called me back (which was around 5:30 in the evening) Luckily, Susan had always been watching the children when Adrienne had her checkups with her doctor, so she was able to keep them occupied and fed and generally spoiled during the long day that it grew into ... (Kyle and Susan did quite a bit of work for us Friday.)
Dr. Sinacari (Adrienne's Ob/Gyn) apparently saw that Adrienne had high blood pressure as well as some swelling in the hands and that Adrienne felt tingling sensations ... she was concerned with possible hypertension so they went to measure the amniotic fluid via ultrasound and found that Olivia was rather small and that there was lots of fluid ... She made the decision to do the C-section then...
Olivia was born with high APGAR scores and seemed over all very healthy...
I made it to Houston and the hospital around 7 pm on Friday (thanks for the ride Scott) and I went to visit Adrienne and we talked a bit and then I went to visit Olivia ...
I was getting the whole story of how the NICU works at the hospital when one of the Neonatal doctors came in to check her out ... She detected a heart murmur while listening to her that evening ... She then made the decision to have her sent to Hermann/Memorial in the Med Center downtown.
That was quite a bit of information to absorb after being away all day long...
Adrienne was not real happy about it either ... We had to wonder what it meant and how serious and feel completely helpless ... So, I took the children home around 10pm when Susan brought them back and we went home and had to leave Adrienne to face the doctors and see Olivia taken away in the travelling incubator ... very tough on us all... Saturday morning I was able to talk to Adrienne again and keep the kids fed and under control here at the house.
(Susan had taken the Ollie the dog and Tinker bell the cat to stay at the vet - Thank you for that!!!)
I was able to get a friend of Sara's to take Sara to a birthday party over by the Spring Branch (which ended up lasting about 5 hours or so) and Andy and I played until Tim and Sharon came over to watch Andy while I went to visit Adrienne and then to see Olivia at her new deluxe facility overlooking the Houston Zoo ... She had been stable over night and continued to be that way while hooked up to a CPAP (to help her breathe better) and an IV for nourishment and a bunch of sensors for heart rate, Oxygen level in the blood, Respiratory rate, and otherthings ... she looks like an angel despite all the tubes and wires and machines that go BING!!
Sunday we were able to get our Adrienne back at home ... still weak but happy to be free ... we took Susan and Kyle and the kids over to the Hermann/Memorial and Adrienne got to finally take a longer look at her little girl. ... we also brought her some liquid gold ... moms milk. She has been really taking the milk like a fighter ... although she is not taking by bottle yet. She is fed through a tube down to her stomach.
Monday; Adrienne and I made it back to the hospital with more milk and just the two of us after taking the kids to Tim and Sharon's place (they played video games most of the time.) I had a pleasant surprise today with our visit ... they had taken the catheter out of her belly and the nurse asked me if I would like to hold her!!! very good thing. Adrienne unfortunately has come down with the cold that the kids have been sharing around the schools, so she could not go in and see her today. I held her for about 1/2 and hour. I could have stayed all day, but we had to get the kids and come home and eat the dinner (tomorrow is a school day) that some church friends made for us ... (thanks Nancy)
The heart murmur has two issues right now ... One is the failure of an
opening that exists in all children in the womb to close itself after birth, which is when it usually closes. The other is a hole between ventricles that may or may not close by itself...
We don't have any more details at this point, other than that she is in stable condition and isn't in any serious immediate danger ... we hope to keep you all updated and informed as we know more information.
Please forward this to anyone within our family and friend loop as you see fit, that way I won't have to tell the story over and over again ...
be seeing you,
Andrew Schultz and family
She is here now ... a bit earlier than expected and quite a bit smaller
too.
Friday, September 3, 2004 around 3pm 3 lb 14 oz 16 inches. I (Andrew) had gone to work early so I could join a group of us from Fairfield to observe some data acquisition up in Palestine, Tx. Adrienne called me when we were almost there to tell me that her Ob/Gyn had decided that Olivia needed to come out right then ... I continued my field trip and wondered what was going on down in Houston. I seem to not know my voice mail password, so I couldn't get the message from Susan (Adrienne's mom) with the details until the drive home, when she called me back (which was around 5:30 in the evening) Luckily, Susan had always been watching the children when Adrienne had her checkups with her doctor, so she was able to keep them occupied and fed and generally spoiled during the long day that it grew into ... (Kyle and Susan did quite a bit of work for us Friday.)
Dr. Sinacari (Adrienne's Ob/Gyn) apparently saw that Adrienne had high blood pressure as well as some swelling in the hands and that Adrienne felt tingling sensations ... she was concerned with possible hypertension so they went to measure the amniotic fluid via ultrasound and found that Olivia was rather small and that there was lots of fluid ... She made the decision to do the C-section then...
Olivia was born with high APGAR scores and seemed over all very healthy...
I made it to Houston and the hospital around 7 pm on Friday (thanks for the ride Scott) and I went to visit Adrienne and we talked a bit and then I went to visit Olivia ...
I was getting the whole story of how the NICU works at the hospital when one of the Neonatal doctors came in to check her out ... She detected a heart murmur while listening to her that evening ... She then made the decision to have her sent to Hermann/Memorial in the Med Center downtown.
That was quite a bit of information to absorb after being away all day long...
Adrienne was not real happy about it either ... We had to wonder what it meant and how serious and feel completely helpless ... So, I took the children home around 10pm when Susan brought them back and we went home and had to leave Adrienne to face the doctors and see Olivia taken away in the travelling incubator ... very tough on us all... Saturday morning I was able to talk to Adrienne again and keep the kids fed and under control here at the house.
(Susan had taken the Ollie the dog and Tinker bell the cat to stay at the vet - Thank you for that!!!)
I was able to get a friend of Sara's to take Sara to a birthday party over by the Spring Branch (which ended up lasting about 5 hours or so) and Andy and I played until Tim and Sharon came over to watch Andy while I went to visit Adrienne and then to see Olivia at her new deluxe facility overlooking the Houston Zoo ... She had been stable over night and continued to be that way while hooked up to a CPAP (to help her breathe better) and an IV for nourishment and a bunch of sensors for heart rate, Oxygen level in the blood, Respiratory rate, and otherthings ... she looks like an angel despite all the tubes and wires and machines that go BING!!
Sunday we were able to get our Adrienne back at home ... still weak but happy to be free ... we took Susan and Kyle and the kids over to the Hermann/Memorial and Adrienne got to finally take a longer look at her little girl. ... we also brought her some liquid gold ... moms milk. She has been really taking the milk like a fighter ... although she is not taking by bottle yet. She is fed through a tube down to her stomach.
Monday; Adrienne and I made it back to the hospital with more milk and just the two of us after taking the kids to Tim and Sharon's place (they played video games most of the time.) I had a pleasant surprise today with our visit ... they had taken the catheter out of her belly and the nurse asked me if I would like to hold her!!! very good thing. Adrienne unfortunately has come down with the cold that the kids have been sharing around the schools, so she could not go in and see her today. I held her for about 1/2 and hour. I could have stayed all day, but we had to get the kids and come home and eat the dinner (tomorrow is a school day) that some church friends made for us ... (thanks Nancy)
The heart murmur has two issues right now ... One is the failure of an
opening that exists in all children in the womb to close itself after birth, which is when it usually closes. The other is a hole between ventricles that may or may not close by itself...
We don't have any more details at this point, other than that she is in stable condition and isn't in any serious immediate danger ... we hope to keep you all updated and informed as we know more information.
Please forward this to anyone within our family and friend loop as you see fit, that way I won't have to tell the story over and over again ...
be seeing you,
Andrew Schultz and family
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