We are not displeased. We are not upset. Tomorrow we will just make sure there are lead weights in her diapers. Actually if anything she should gave lost more yesterday... Just goes to show what a fighter she is.
Pray for weight gain!
-- Post From My iPhone
Saturday, October 31, 2009
Tired but gaining! (day 13)
We gained 5 grams last night... She is feeding for longer periods every time! She also is staying alert more at each feeding. All good signs!
-- Post From My iPhone
-- Post From My iPhone
Friday, October 30, 2009
Exhaustion sets in
Amanda is feeling better, but says her incision still hurts a bit. This worries me. If she doesnt fell better by this PM I will take her back to the Dr.
Bayta is eating well, but not eating long. She is getting all the nutrients she needs, but we both realize she may lose weight for a few more days. The literature we are seeing as well as some blog comments suggest she will lose more weight when and if the ever get her darn IV out. The surgical team must be really busy because they are over 24 hours late to get it removed. I would probably be pitching a bigger fit, but it was the IV being removed last time tha immediately preceeded the scariest day of my life. It is hard to believe that last Friday about this time things began to go bad very quickly.
The couple with Ellis in the next bed over seem to be getting good news Ellis may be coming home around the same time Bayta does. They are a truly amazing couple and we got to meet their two year old daughter last night. She is precious and dressed up as a lady bug. It was great to see her and talk to her, but I miss my boys so much. This is definitely the longest time we have been apart. We called home and got to talk to Larry who was watching the boys while Judy had gone to the store. He said that he had originally planned to leave judy there by herself but they both quickly decided that two boys equated out to a two adult job. I think that is high praise to the mother of my children.
Another nurse said that she thought we would be able to go home on Tuesday... again... she has not authority in this matter what so ever, but it is nice to hear.
I am going to be making some changes to this site today to kind of clean it up.
Opps its 4:30. Gotta wake the mom for another feeding. Amanda says "Moo"
Darick
-- Post From My iPhone
Bayta is eating well, but not eating long. She is getting all the nutrients she needs, but we both realize she may lose weight for a few more days. The literature we are seeing as well as some blog comments suggest she will lose more weight when and if the ever get her darn IV out. The surgical team must be really busy because they are over 24 hours late to get it removed. I would probably be pitching a bigger fit, but it was the IV being removed last time tha immediately preceeded the scariest day of my life. It is hard to believe that last Friday about this time things began to go bad very quickly.
The couple with Ellis in the next bed over seem to be getting good news Ellis may be coming home around the same time Bayta does. They are a truly amazing couple and we got to meet their two year old daughter last night. She is precious and dressed up as a lady bug. It was great to see her and talk to her, but I miss my boys so much. This is definitely the longest time we have been apart. We called home and got to talk to Larry who was watching the boys while Judy had gone to the store. He said that he had originally planned to leave judy there by herself but they both quickly decided that two boys equated out to a two adult job. I think that is high praise to the mother of my children.
Another nurse said that she thought we would be able to go home on Tuesday... again... she has not authority in this matter what so ever, but it is nice to hear.
I am going to be making some changes to this site today to kind of clean it up.
Opps its 4:30. Gotta wake the mom for another feeding. Amanda says "Moo"
Darick
-- Post From My iPhone
Lost weight :( (day 12)
Her weight dropped 30 grams... No one is concerned. She just started on the breast yesterday so 30 grams is not so bad. She is definitely doing a great job... The mechanics of the transaction are there we just need some more volume.
-- Post From My iPhone
-- Post From My iPhone
Thursday, October 29, 2009
1st feed done (day 11)
We hope she took enough milk. Time will tell... There is a good chance she will lose weight for a few days then gain. She is such a sweet baby. I don't remember the boys being on such an easy schedule. Looks like my job will probably be to keep her up so she doesn't snack and then pass out.
-- Post From My iPhone
-- Post From My iPhone
She fed for a minute and passed out
Mom says no pics. ;) will send some after feeding!
-- Post From My iPhone
-- Post From My iPhone
How I know Bayta is a lady
These two pics were taken after two different feedings.... Notice the pinky standing up in a decidely ladylike manner.
-- Post From My iPhone
-- Post From My iPhone
This is page one of baytas meds
The other page is almost as long... It is amazing that our little Bayta has been exposed to so much so quickly and continues to do so well!
-- Post From My iPhone
-- Post From My iPhone
Can you believe?
Where the black stitches are on the tube on the right... Everything below that tube was actually in her chest.
Hope this isn't gross... But I find it amazing!
The drain itself works like a gas siphon. You open a valve on the top of the bulb... Squeeze the bulb, close the valve and let the vac effect do it's thing. The fluid that pooled in the bulb was closely monitored for volume and color.
-- Post From My iPhone
Hope this isn't gross... But I find it amazing!
The drain itself works like a gas siphon. You open a valve on the top of the bulb... Squeeze the bulb, close the valve and let the vac effect do it's thing. The fluid that pooled in the bulb was closely monitored for volume and color.
-- Post From My iPhone
Drain tube out
In this picture the small scab about two inches below where the sensor line crosses her midline scar is the only proof that she had a drain tube in her belly.
This is the drain tube that ran to her chest. I wanted to keep it as an ornament for the Christmas tree... Amanda vetoed it. Some people just have no sense of humor!
-- Post From My iPhone
This is the drain tube that ran to her chest. I wanted to keep it as an ornament for the Christmas tree... Amanda vetoed it. Some people just have no sense of humor!
-- Post From My iPhone
Battle of the doctors
There are no right answers in this room. The doctors constantly debate about the best course of action for Bayta. This makes it very hard to tell people what is going on... But we know she gets a better standard of care because of the battles going on around her.
New plan:
Amanda breastfeeds in about an hour. The groin lines will remain in until we see that she is doing well and that her food and meds are staying down. The logic is that if she isn't able to keep them down then we have to put back in an iv... So why take one out just to possibly have to put it right back in tomorrow?
The groin lines make changing diapers a little difficult but that is a minor complaint if I keeps her from getting stuck again.
So now we need 24 hours of weight gain and then the conversation turns discharge. We will probably take 24 to 48 hours of no monitors to see how she and we do in an apartment setting here in the hospital. A lot of people we have talked to have said that when you get home and there are no monitors watching her to make sure she breathes... You get paranoid and can't relax.
Today we hAve a CPR meeting at 1:00 pm
Tonight at 6:30 we have a dinner with other parents of nicu babies. I am looking forward to hearing their stories.
-- Post From My iPhone
Update on surgery
Neo natal just did rounds. They believe the surgeons will sign off today on bayta. Someone will have to decide who will remove her tubes. Then because the tubes are gone she will have to start taking the reflux meds orally. This means she will essentially be taking pepcid and vitamin d.
-- Post From My iPhone
-- Post From My iPhone
Surgery may sign off today! (day 11)
Had about a 10 ml reflux last night. So we are watching bayta like hawks today. If she continues to feed well surgery will pull her lines including the two in her groin so all she
-- Post From My iPhone
-- Post From My iPhone
Wednesday, October 28, 2009
Tired
Sorry for so few posts today. Got to play with James the 5 yr old. Tomorrow he begins his radiation. He told his mother not to be afraid. Please pray for this mazing boy to do ok with the trials ahead of him.
Other parents on the ward
Besides Ellis's folks we don't see a lot of families on a regular basis. There are premie twins to the left of us that are both in isolation. Behind us there is another premie. We have been there 10 days and have seen their parents twice. This is not a slight to them. It is jar to be here everyday. To have a child you can not hold or touch because she is in a box... Must be incredibly difficult. Add to it a young mom and a non existent support group and it makes for a difficult situation. One of the fathers was in the other day bragging about his multiple children from different women. It again reminds me to thank my blessings. Both Amanda and I come from intact supportive families. What battles did we not have to face because of the sacrifices our parents made?
-- Post From My iPhone
-- Post From My iPhone
We got a prediction on departure date
One week. That was from one of the lowest rungs of our medical team... But even if you double it or triple it it is still a date we can live with. The nurse working with bayta thinks she is sooo funny. 10 minutes before she is supposed to be fed she wakes up and starts screaming until her heart rate shoot above 200. That has the effect of setting off monitors until the nurses start her feed just for a little piece and quiet. As soon as she gets what she wants she quiets down and her pulse drops to normal. The nurse says it is behaviors like that that will get Bayta sent home sooner than later.
-- Post From My iPhone
Boring day (day 10)
Amanda is the source of our excitement today. She did have an infectionin her incision and she did have a uti. We got antibiotics and hopefully she will be cured by fri. Because we are in a place with a lot of resistant staph issues we created a plan to get her treated this weekend if the medicine doesn't donthe trick.
Now back at nicu things are going slow. Amanda wants to be here as much as she can to actually feed bayta with a bottle. I want to get out of Here because tomorrow her boob will be required and that means a lot more time at the hospital.
Bayta seems to be taking it all in stride she is sleeping and only waking up to feed. Although I want to pick her up and hold her we Are holding off because experience tells us to never wake a sleeping baby.
Amanda is pumping now she is having great results.
We have decided to try to have the drs pinpoint for us what other organs, if any, are in the wrong place. In case she ever has to have An appendix out we want to know where it is.
I got to talk to the father of Ellis our next bed over neighbor. He has been here for several months and we had a lot to talk about in common. Ellis is a beautiful baby and today I found out for the first time that he might have some brain issues. They don't know how bad... So they have to wait and see... I wanted to give him a hug. He unlike us had no idea he would be here. They had a normal pregnancy. They also blog: www.ellisfaron.Blogspot.com
I will ask for permission to take a pic of Ellis. He has the nursin staff wrapped around his finger.
-- Post From My iPhone
Getting old (day 10)
I woke up the Am with a terrible Charlie horse. Now before you guys start In on me about drinking more water and eating banannas ... I have probably been doing more of both that I have ever done in the last 10 days... Yesterday I held Bayta a lot and drank ice water the whole time.
I think I am just getting old. Sigh.
-- Post From My iPhone
Sad news
I found out Warren stafford passed away. The first law firm I worked at he was a pArtner. I used to love to stay late and listen to stories of his many court room battles. Turk was as blue collar as an attorney could be and I always hope to emulate him in my practice.
-- Post From My iPhone
-- Post From My iPhone
The plan (day 10)
At 9:00 am she got 20 ml of breat milk every three hours from then on she will get 5 more ml until she is at two ounces. She got her crib because she is regulating heat on her nose. Central lines will come out when she reaches the two ounce target and is doin ok with it.
-- Post From My iPhone
-- Post From My iPhone
Last night
A baby entered our pod. It brought back a lot of memories for me. This baby interestingly had a gastroschisis the condition we were originally diagnosed with. Dr Keller attended to her in the pod. If I was her parent I would not have been allowed to watch the procedure. Since we has been here all day watching Bayta they let us stay. The procedure required the attention of several nurses so Amanda kept bayta entertained while I played a bit with Ellis our next door neighbor. But truth be told I watched the procedure where they wrap the babies intestines in plastic and suspend them from the warmer above the crib with a very expensive paper clip. It was amazing. I wanted so bad to meet this babies parents and tell them everything Amanda and I have learned over the last 10 days. So far they haven't showed this am.
The baby seems to be doing great and they have already squeeZed over half of her intestines back Into place.
-- Post From My iPhone
The baby seems to be doing great and they have already squeeZed over half of her intestines back Into place.
-- Post From My iPhone
Amanda not feeling well
We have a drs apt back at barnes Jewish for Amanda. Her incision looks to be getting infected. Please add her to your prayers.
-- Post From My iPhone
Tuesday, October 27, 2009
James
Saw James tonight. He had gotten back from mcdonalds where mom says he ate well. Tomorrow is his lastcplay day and then his treatments start. I still couldn't get him to stop smiling. Please pray for James.
-- Post From My iPhone
-- Post From My iPhone
She likes it she likes it!
Took the milk like a champ! Wanted more...
Today was a up and down day... In the end Bayta beat the odds... Actually had Something that only one in 5 million people have... And has beaten it down to a footnote. I am sorry I didn't blog sooner, but my precious iPhone ran out of juice after several hour of studying pentology of cantrell. On the way home we stopped to get some gas. I did something I never do. I bought a lottery ticket.
-- Post From My iPhone
Next step... eating milk (day 9)
At approximately 6:00 PM Bayta will attempt to drink breast milk. This is a huge stage... today she took the thinner pedialyte lite and did great with it. We do have some mommy and daddy concerns. After she finished she screamed for a few minutes and was pretty much not happy. We hope that is the same feeling an adult who has not eaten in a week if they had a big mac in a three minute period.
It happened every time though so we are going to be really careful and try to slow down her intake as much as we can. It is hard to do that because she inhales her bottles thus far.
There is a new addition coming to the ward tonight. We dont know who or waht, but we believe the child will come from Barnes Jewish... it is hard to think that dramas like the one we have gone through and much worse happen every day here. We are also going to try to wash Baytas hair tonight.
As always we will kepp you updated as we find out!
Darick
It happened every time though so we are going to be really careful and try to slow down her intake as much as we can. It is hard to do that because she inhales her bottles thus far.
There is a new addition coming to the ward tonight. We dont know who or waht, but we believe the child will come from Barnes Jewish... it is hard to think that dramas like the one we have gone through and much worse happen every day here. We are also going to try to wash Baytas hair tonight.
As always we will kepp you updated as we find out!
Darick
Met with Genetic Doctor (Day 9)
I just finished an hour long blog to you guys and I lost it. I am sorry for the delay. Trust me when I say that the last blog was very eloquent.
Natasha our nurse (who is single if anyone knows a very nice guy in St. Louis. )
Saw that we were freaked out about her diagnosis. She took it upon herself to have the Dr. come over and sit with us and answer her questions. She is a wonderful person and nurse.
So the Dr. Came over and answered our many questions. My previous blog, the lost one, went into word for word how the meeting went. Here is the nutshell.
The diagnosis does require 5 factors. The Dr is absolutely convinced based upon his examination of bayta that she has the sternal defect. He does not believe it is worth exposing her to radiation to image the minor defect. According to him knowing it is there will not change how we treat her in ANY way.
He believes the prevalence in the general population is slightly less than 1 in 5 million. He stated that he believes that many hospitals would look at Bayta's condition and not figure out what she has. He has seen 2 or 3 in his career.
The test he has ordered is a micro array. Amanda pinned him down artfully into admitting that the test will not do us any good. It will help researchers and might help bayta when it comes time for her to have a little girl of her own.
The Micro Array looks at her chromosomes on a much finer levelthan the normal genetic tests. THe micro array has only been available for a few years so Bayta will be one of the first to be studied by the Micro ARRAY.
The current belief is that this is a x chromosome issue so both families contributed equally to her genetic material. Part of his research involved a detailed study of both the Hemphill and Whitehead lines. While he was generally impressed with the Hemphill lineage he had several questionable unions identified on the whithead side. In fact he asked Amanda to come back and discuss some of her relation with him in 6 to 8 weeks when he had more time to put together a formal team.
The really cool thing he said to explain why Bayta has done so well has to do with her being a girl. Girls are simply not affected by P O C like boys. This is becasue 2 X chromosomes are passed thus allowing one to be bad and a redundant one to cover for it. In thinking back to the cases we have seen we have to agree with what he is saying. Amanda and I can think of no girls we have met on the internet. Tammy sent us an example of a "friend" of ours Aiden. He is the son of a mother who blogs about his adventures with P O C. While he has done well he is still about a year delayed and has a trach tube and still is unable to eat through the mouth. It is a scary. Aiden's story is one of the first we came across after our "O" diagnosis. And one of the reasons I decided to start this blog. Small world.
Allison Nugent got back to us with her research and it pretty much squares with the Dr.s meeting. She informed us of a study for 2 year olds and we will try to get Bayta into... but that is for another blog.
Gotta go... bayta is ready for her next feeding!
PS I might have exaggerated what the the genetisist said about the Whiteheads.
Natasha our nurse (who is single if anyone knows a very nice guy in St. Louis. )
Saw that we were freaked out about her diagnosis. She took it upon herself to have the Dr. come over and sit with us and answer her questions. She is a wonderful person and nurse.
So the Dr. Came over and answered our many questions. My previous blog, the lost one, went into word for word how the meeting went. Here is the nutshell.
The diagnosis does require 5 factors. The Dr is absolutely convinced based upon his examination of bayta that she has the sternal defect. He does not believe it is worth exposing her to radiation to image the minor defect. According to him knowing it is there will not change how we treat her in ANY way.
He believes the prevalence in the general population is slightly less than 1 in 5 million. He stated that he believes that many hospitals would look at Bayta's condition and not figure out what she has. He has seen 2 or 3 in his career.
The test he has ordered is a micro array. Amanda pinned him down artfully into admitting that the test will not do us any good. It will help researchers and might help bayta when it comes time for her to have a little girl of her own.
The Micro Array looks at her chromosomes on a much finer levelthan the normal genetic tests. THe micro array has only been available for a few years so Bayta will be one of the first to be studied by the Micro ARRAY.
The current belief is that this is a x chromosome issue so both families contributed equally to her genetic material. Part of his research involved a detailed study of both the Hemphill and Whitehead lines. While he was generally impressed with the Hemphill lineage he had several questionable unions identified on the whithead side. In fact he asked Amanda to come back and discuss some of her relation with him in 6 to 8 weeks when he had more time to put together a formal team.
The really cool thing he said to explain why Bayta has done so well has to do with her being a girl. Girls are simply not affected by P O C like boys. This is becasue 2 X chromosomes are passed thus allowing one to be bad and a redundant one to cover for it. In thinking back to the cases we have seen we have to agree with what he is saying. Amanda and I can think of no girls we have met on the internet. Tammy sent us an example of a "friend" of ours Aiden. He is the son of a mother who blogs about his adventures with P O C. While he has done well he is still about a year delayed and has a trach tube and still is unable to eat through the mouth. It is a scary. Aiden's story is one of the first we came across after our "O" diagnosis. And one of the reasons I decided to start this blog. Small world.
Allison Nugent got back to us with her research and it pretty much squares with the Dr.s meeting. She informed us of a study for 2 year olds and we will try to get Bayta into... but that is for another blog.
Gotta go... bayta is ready for her next feeding!
PS I might have exaggerated what the the genetisist said about the Whiteheads.
Surgery bows to Bayta
After her stomach tube has run clear and swelling has gone down, blood gasses remained stable... And xrays showed clear... Bayta got the go ahead for 15 ml of pedialite lite . It looks to be a sweet liquid thinner than
water. She guzzled it we are oN the lookout for spitup and will do this 3 more times today. If that goes well then breast milk tomorrow.
-- Post From My iPhone
water. She guzzled it we are oN the lookout for spitup and will do this 3 more times today. If that goes well then breast milk tomorrow.
-- Post From My iPhone
Are you sitting down?
We were just diagnosed with pentalogy of cantrell.
My head is spinning. The surgeons disagree because they say four does not a pentology make. Dr Anna says it will be five if we took the time tonimage her chest. Apparently the genetisist diagnosed it. As a result a genetic screen is being performed. It will take three weeks to get the results ( I am still waiting on the results of the first genetic tests from last week that were only going to take a day or two!!!)
One in five million diagnosis. If memory serves.
She seems so healthy. If you happen to be a genetics expert please let me know about this latest screen. The board wants this to be the top priority of our research division. ;)
-- Post From My iPhone
My head is spinning. The surgeons disagree because they say four does not a pentology make. Dr Anna says it will be five if we took the time tonimage her chest. Apparently the genetisist diagnosed it. As a result a genetic screen is being performed. It will take three weeks to get the results ( I am still waiting on the results of the first genetic tests from last week that were only going to take a day or two!!!)
One in five million diagnosis. If memory serves.
She seems so healthy. If you happen to be a genetics expert please let me know about this latest screen. The board wants this to be the top priority of our research division. ;)
-- Post From My iPhone
Surgeons vs. Neonatal
Both want what is best for bayta just can't agree on what it is. The surgeons having missed a big hole in her diaphram want to make sure this recovery goes smoothly. The doctors on the nicu see her exhibiting classic "food seeking" behaviors and want her to start eating asap.
Hopefully today she will get her chance. We have had a few dirty diapers now, so all we are waiting on is the go go go signs and she will be off to the races again!
-- Post From My iPhone
Monday, October 26, 2009
She did it again! (Day 8)
I am really thinking that this girl was aptly named. So far the more hardship foisted upon her the the better she does. We finally got a surgeon to remove the drain at 6:30 PM. She cried once and that was it. The Dr. put a yellow bandage over the opening and taped it down. At he same time he opened up the midline incision because 48 hours had passed since her surgery. She was fussy for a little bit and then Amanda began to sing to her and she calmed down and started making lovey dovey eyes at mommy. At the end of our visit she was gnawing on her hands. A sure sign she is looking for a meal. Unfortunately the Dr.'s now want to play the conservative game so she will not be given any milk until tomorrow AM. It is hard to leave your child hungry. Luckily Amandas singing calmed her down enough that she was actually drifting off as we left her pod. She may have started screaming bloody murder right after we left, but for that small moment in time she was quiet and I could pry her mother away from her side.
I met a five year old boy at the house I thought his name was Josh, but it is really James. Can't remember if I have talked about him on here or not. His mother took him to the Dr. for a routine test and discovered he has several brain tumors. They operated in September and got a lot of them out, but there were some that were too close to the brain stem. He will have to have Chemo soon. He is such a perfect little boy. I asked him the other day if he could stop smiling and for several minutes he tried to... but just couldnt do it. The Ronald Mc Donald House has been getting the family tickets to the zoo and even hockey games... (He liked the fighting but was pretty ambivalent about the sport.) They also make sure that while he goes to the game he gets to meet some of the players. This is a first rate organization. It has been hard to deal with an illness with Bayta. It is hard for me to believe that less than a week ago I did not even know her. Already I love her in a way that only parents can understand and I would do anything to make her happy. What would you do for your five year old child? What if there was nothing you could do?
This week we got word that another Omphalocele mother lost her baby pre term. How difficult would that have to be? She was brave enough to write to the other mothers sho are dealing with their own omphalocele children... and told them what the procedure was like so in the event it happened to them they might not be so scared.
I have literally squandered the many gifts I have been given. I do not think I have the courage of a shattered mother or even for that matter a five year old boy... and yet I call myself a man. We all live these highly sheltered lives believing that it wont happen to me or to my boy or my wife... when the reality is that it will. Maybe not today, but it will. One of the followers of this page told me they went and hugged thier child as a result of reading this blog. That was an unintended consequence of this site. I hoped to have a vehicle to talk about what we were going through and to maybe act as a guidepost for other "O" families on their journey through this diagnosis. However if it makes us even take one second to appreciate how special and fragile the loves in our lives are and how meaningless everything else is maybe Baytas Battles will have been worth it. I never want to be in a position like I was on Friday again. In a split second I would have given up my home my cars my stuff and my life and not even thought twice about it just to have my precious daughter safely in her mothers hands again. I have never been that helpless and scared in my life.
I have had a few people tell me that this happens for a reason. That God has chosen Amanda and I for a reason. Because we are strong. To accept that is to accept the premise that the children that are taken are done so because their parents are weak. I know it is meant well from the people who say such things, but this is something I can not accept.
In the group that is reading this blog I know that there are people who believe in God because of the overwhelming proof of his existence and those that reject him looking at the exact same facts. I have through my life been on both sides. I thought when I was younger I would have the questions of Gods purposes completely worked out by the time I reached the ripe old age of 30 much less 35. I admit categorically I have yet to figure it out. All I know is that a five year old with a smile on his face is the closest I have come to seeing the face of God... and I think the trick to getting through this crazy mixed up world is figuring a way to focus on being more James Like and less like ourselves. Like it or not we all have a date coming up that will be here before you know it. You can spend those days watching tv or living. I believe my God will prefer the Darick that has lived like he had an inoperable tumor than the one who has made himself so comfortable that he can not feel the pain in his life much less the lives of the James in his neighborhood.
As bad as this experience has been for my family... I am now in anenvironemnt where I am the lucky one. I hope you know how lucky you are. Life is so precious lets all go out there tomorrow and make it better for the James of the world.
Sorry... to go so far off topic... it has been eating at me for a while.
Goodnight.
I met a five year old boy at the house I thought his name was Josh, but it is really James. Can't remember if I have talked about him on here or not. His mother took him to the Dr. for a routine test and discovered he has several brain tumors. They operated in September and got a lot of them out, but there were some that were too close to the brain stem. He will have to have Chemo soon. He is such a perfect little boy. I asked him the other day if he could stop smiling and for several minutes he tried to... but just couldnt do it. The Ronald Mc Donald House has been getting the family tickets to the zoo and even hockey games... (He liked the fighting but was pretty ambivalent about the sport.) They also make sure that while he goes to the game he gets to meet some of the players. This is a first rate organization. It has been hard to deal with an illness with Bayta. It is hard for me to believe that less than a week ago I did not even know her. Already I love her in a way that only parents can understand and I would do anything to make her happy. What would you do for your five year old child? What if there was nothing you could do?
This week we got word that another Omphalocele mother lost her baby pre term. How difficult would that have to be? She was brave enough to write to the other mothers sho are dealing with their own omphalocele children... and told them what the procedure was like so in the event it happened to them they might not be so scared.
I have literally squandered the many gifts I have been given. I do not think I have the courage of a shattered mother or even for that matter a five year old boy... and yet I call myself a man. We all live these highly sheltered lives believing that it wont happen to me or to my boy or my wife... when the reality is that it will. Maybe not today, but it will. One of the followers of this page told me they went and hugged thier child as a result of reading this blog. That was an unintended consequence of this site. I hoped to have a vehicle to talk about what we were going through and to maybe act as a guidepost for other "O" families on their journey through this diagnosis. However if it makes us even take one second to appreciate how special and fragile the loves in our lives are and how meaningless everything else is maybe Baytas Battles will have been worth it. I never want to be in a position like I was on Friday again. In a split second I would have given up my home my cars my stuff and my life and not even thought twice about it just to have my precious daughter safely in her mothers hands again. I have never been that helpless and scared in my life.
I have had a few people tell me that this happens for a reason. That God has chosen Amanda and I for a reason. Because we are strong. To accept that is to accept the premise that the children that are taken are done so because their parents are weak. I know it is meant well from the people who say such things, but this is something I can not accept.
In the group that is reading this blog I know that there are people who believe in God because of the overwhelming proof of his existence and those that reject him looking at the exact same facts. I have through my life been on both sides. I thought when I was younger I would have the questions of Gods purposes completely worked out by the time I reached the ripe old age of 30 much less 35. I admit categorically I have yet to figure it out. All I know is that a five year old with a smile on his face is the closest I have come to seeing the face of God... and I think the trick to getting through this crazy mixed up world is figuring a way to focus on being more James Like and less like ourselves. Like it or not we all have a date coming up that will be here before you know it. You can spend those days watching tv or living. I believe my God will prefer the Darick that has lived like he had an inoperable tumor than the one who has made himself so comfortable that he can not feel the pain in his life much less the lives of the James in his neighborhood.
As bad as this experience has been for my family... I am now in anenvironemnt where I am the lucky one. I hope you know how lucky you are. Life is so precious lets all go out there tomorrow and make it better for the James of the world.
Sorry... to go so far off topic... it has been eating at me for a while.
Goodnight.
Bayta battles another tube and wins! (DAY 8)
Today after we got back from a meeting to learn that we should never shake a baby (even if they deserve it or ask for it... sorry Jackson) We also learned smoking is bad and and babies should sleep on their backs. I wish I would have known all this when I was a prosecutor it would have made things easier for me. I have half a mind to write a letter to my old boss and set her straight. ;)
Well, we got back from that meeting and Bayta got her IV out. Still no word on the chest drain tube. We are waiting on a surgeon to perform the removal which is a pretty simple one. She has been completely dropped from pain meds, but she will have to get a dose of something when they remove that tube... to me it would have been nice to remove it before she got off the meds... but surgeons are busy people and sometimes things happen to keep them from doing simple procedures like this.
So for now there are no tubes in her mouth or wrists or feet. She still has her multiple lines coming out of her groin. She also will have to get the smaller feeding tube put back in her mouth if she does not take to breastfeeding right away. Her feeds will start with 5 ml and then be upped by 5 ml each day or so until she is taking 2 + ounces without significant reflux. She seems to still have the suck relex going... but she was not really getting too involved with the breast before the second surgery... so we will have to see how it goes.
Amanda continues to do very well, despite the soreness at her incision. It really isnt funny but when she laughs it hurts her so she laughs winces... and then realizes how silly it looks and does it again... sometimes for minutes at a time. One thing is for sure she is as beautiful as ever.
We are hoping to get the boys up here this weekend. We miss them so much it hurts.
We also want to continue thanking you for your thoughts and prayers it is nice to hear from all of you... even if we are unable to respond to all emails we read everyone and get a lot of comfort from them. In particular I wanted to think my GREAT AUNT ELIZABETH for taking the time to read and write to our blog. Very impressive.
Also a question was sent to us to define what a VSD is. I believe it was defined earlier in the blog, but it is a Ventricular Septal Defect. It means that a small hole existed in the heart. Many "normal" babies have these holes and they are never detected. Because of Bayta's condition we have so many ultrasounds of her little heart that we found a very very small one. It appears to already be healed (the last ultrasound does not show it.)
A VSD is one of the 5 prerequisites for a diagnosis of pentology of Cantrell.
Special thanks to Allison Nugent for opening up the National Institute of Health's databases to us for awesome medical research. The Board of Directors for this blog have voted and she is now our Offical Researcher at Baytasbattles.blogspot.com
Rumor has it she is not going to quit her day job. It is also interesting to note that Allison went with Amanda and I on one of our first "non dates" during college... and the fact that she still talks to me is greatly appreciated.
;)
Well, we got back from that meeting and Bayta got her IV out. Still no word on the chest drain tube. We are waiting on a surgeon to perform the removal which is a pretty simple one. She has been completely dropped from pain meds, but she will have to get a dose of something when they remove that tube... to me it would have been nice to remove it before she got off the meds... but surgeons are busy people and sometimes things happen to keep them from doing simple procedures like this.
So for now there are no tubes in her mouth or wrists or feet. She still has her multiple lines coming out of her groin. She also will have to get the smaller feeding tube put back in her mouth if she does not take to breastfeeding right away. Her feeds will start with 5 ml and then be upped by 5 ml each day or so until she is taking 2 + ounces without significant reflux. She seems to still have the suck relex going... but she was not really getting too involved with the breast before the second surgery... so we will have to see how it goes.
Amanda continues to do very well, despite the soreness at her incision. It really isnt funny but when she laughs it hurts her so she laughs winces... and then realizes how silly it looks and does it again... sometimes for minutes at a time. One thing is for sure she is as beautiful as ever.
We are hoping to get the boys up here this weekend. We miss them so much it hurts.
We also want to continue thanking you for your thoughts and prayers it is nice to hear from all of you... even if we are unable to respond to all emails we read everyone and get a lot of comfort from them. In particular I wanted to think my GREAT AUNT ELIZABETH for taking the time to read and write to our blog. Very impressive.
Also a question was sent to us to define what a VSD is. I believe it was defined earlier in the blog, but it is a Ventricular Septal Defect. It means that a small hole existed in the heart. Many "normal" babies have these holes and they are never detected. Because of Bayta's condition we have so many ultrasounds of her little heart that we found a very very small one. It appears to already be healed (the last ultrasound does not show it.)
A VSD is one of the 5 prerequisites for a diagnosis of pentology of Cantrell.
Special thanks to Allison Nugent for opening up the National Institute of Health's databases to us for awesome medical research. The Board of Directors for this blog have voted and she is now our Offical Researcher at Baytasbattles.blogspot.com
Rumor has it she is not going to quit her day job. It is also interesting to note that Allison went with Amanda and I on one of our first "non dates" during college... and the fact that she still talks to me is greatly appreciated.
;)
Pray for poop x2
Ok, got the vac tube out of her belly. Still waiting on the surgeon to remove the chest tube drain then I will try to take some family friendly pictures...
They will also try to get rid of the wrist iv and consolidate the it with the main lines ... But that is the step we got to right before black Friday.
This is her wrist iv
-- Post From My iPhone
They will also try to get rid of the wrist iv and consolidate the it with the main lines ... But that is the step we got to right before black Friday.
This is her wrist iv
-- Post From My iPhone
Bayta says
Happy Halloween!!! A very nice nurse named natasha brought some socks and a hat in for Bayta... It's a bit big but soooo cute
-- Post From My iPhone
-- Post From My iPhone
Surgeons report (day 8)
Drain tube comes out this am!
Waiting for poop.
Dr Keller is conservative so he will wait until bayta poops on her own.
Blood work came in from 6:00 am and she looks great!
She was wide awake this am so we just talked and tAlked.
-- Post From My iPhone
Waiting for poop.
Dr Keller is conservative so he will wait until bayta poops on her own.
Blood work came in from 6:00 am and she looks great!
She was wide awake this am so we just talked and tAlked.
-- Post From My iPhone
Sunday, October 25, 2009
Marcy and mike wells came to visit today
I felt like Tom hanks in castaway after talking to a volleyball for a few months it's hard to to tAlk to real people. It was VERY nice to see them, but even though I had my iPhone in my hand I did not think to get a picture until after they were gone. Sorry for that! Thank you so much for stopping by it was a nice break fro both Amanda and I.
-- Post From My iPhone
-- Post From My iPhone
Do we have pentology of cantrell?
Five requirements
1 omphalocele: check
2 no pericardium: check
3 heart defect: technically yes for two technical reasons vsd very small and her heart is inverse and on the wrong side of her chest
4 diaphramic hernia: this is a given... I have xrays of her stomach in her chest
5 cleft sternum: not present so we avoid the diagnosis
I thought taking a moment to break that down would help... Now the problem is I still don't know what the heck we have !?!
-- Post From My iPhone
1 omphalocele: check
2 no pericardium: check
3 heart defect: technically yes for two technical reasons vsd very small and her heart is inverse and on the wrong side of her chest
4 diaphramic hernia: this is a given... I have xrays of her stomach in her chest
5 cleft sternum: not present so we avoid the diagnosis
I thought taking a moment to break that down would help... Now the problem is I still don't know what the heck we have !?!
-- Post From My iPhone
Dr wArner stopped by
Said he was sorry he was unable to be there for Baytas secon surgery. He was very pleased with the result. ( as was I) the incision looks like it has been healing since her Tuesday surgery. Her abdomen is still really swollen. Despite Fridays setback we still believe that we have made the right decision to have her in st. Louis.
Now if we can keep Bayta from loosing her suck reflex and the boys from forgetting who we are am not sending a lot of omphalocele pics to the public, but I thought you might find it interesting... will be ok.
A note to other "o" families dr Keller performed the second surgery. It was an agonizing decision... Do you let a stranger who happens to be on call perform a surgery. I would have preferred dr Warner he knew baytas unique anatomy. However she was In danger and a decision had to be made. It was one of those decisions that if the result had been diferent I would have suffered with it the rest of my life... As it seems now it was a good decision and dr Keller did an excellent job. If he had been our primary surgeon we would have had no regrets.
-- Post From My iPhone
Now if we can keep Bayta from loosing her suck reflex and the boys from forgetting who we are am not sending a lot of omphalocele pics to the public, but I thought you might find it interesting... will be ok.
A note to other "o" families dr Keller performed the second surgery. It was an agonizing decision... Do you let a stranger who happens to be on call perform a surgery. I would have preferred dr Warner he knew baytas unique anatomy. However she was In danger and a decision had to be made. It was one of those decisions that if the result had been diferent I would have suffered with it the rest of my life... As it seems now it was a good decision and dr Keller did an excellent job. If he had been our primary surgeon we would have had no regrets.
-- Post From My iPhone
5th floor nicu
This is our floor. I have left a lot of emotions on this floor. This is the front desk where you call on and ask to see your baby. To me this is a very dangerous place. We wAsh our hands a giIllion times a day. We wear masks until they are soggy fro
Tears our our breathing. But here everyone touches the same dirty phone? Why? Why not a speaker phone? Normally there is a receptionist here that I really like. When I get here early on the morning she is not here so I have to touch the phone with my index finger and thumb... I am not generAlly a germ o phob but this place makes you crazy.
The is the door of denial. If I said I hate the elevator I take it all back when I see this door. If a procedure is being done the pad by the door glares at me with an angry red eye. If it is clear then I get a pleasing green light. I have discovered ways around the door. But Amanda point out that there are signs all around saying I shouldn't bypass the door, but rather respect it's wisdom. I hate that door.
-- Post From My iPhone
Tears our our breathing. But here everyone touches the same dirty phone? Why? Why not a speaker phone? Normally there is a receptionist here that I really like. When I get here early on the morning she is not here so I have to touch the phone with my index finger and thumb... I am not generAlly a germ o phob but this place makes you crazy.
The is the door of denial. If I said I hate the elevator I take it all back when I see this door. If a procedure is being done the pad by the door glares at me with an angry red eye. If it is clear then I get a pleasing green light. I have discovered ways around the door. But Amanda point out that there are signs all around saying I shouldn't bypass the door, but rather respect it's wisdom. I hate that door.
-- Post From My iPhone
From the garage I walk to security
A new person each and every day can't find or spell my name... But eventually we find my name and get a sticker with a picture of me that is so blurry you can't see it. Today I turned the tables and asked the poor security guy if I could take his picture. Apparently he had never seen an iPhone because he accused me of only pretending to take his picture. I ha to show him his picture... He thought I did a good job... (sometimes you have to find ways to amuse yourself!)
This is the elevator that takes me from the security level to bayta each day. I hate this elevator, but it is a means to an end.
-- Post From My iPhone
Wait it gets better
After getting a card from the parking garage machine
I find a place to park
-- Post From My iPhone
I find a place to park
-- Post From My iPhone
A day in the life (day 7)
First I shake hands with the ronald mcdonald hose gate
Then I say hello to the childrens hospital parking garage machine
-- Post From My iPhone
Then I say hello to the childrens hospital parking garage machine
-- Post From My iPhone
Sorry Bout yesterday
I have caught heck from several folks about not getting regular updates yesterday. Sorry. We had very little news and Amanda and I needed to get away from beeping monitors long enough to take a few calming breaths. I am afraid going forward that things are gonna be going slow. We were lucky last week. This time the opinion seems to be take it slow and make sure nothing is getting missed this time around.
I think I am losing my mind! :) what will I be like in a week?
-- Post From My iPhone
More good news
Tomorrow she will get the drain pulled out of her chest. It is currently held in with a single stitch. Results of the echocardiogram were negative... No vsd!!!!!
-- Post From My iPhone
-- Post From My iPhone
Look ma no vent (day 7)
Changed bandage on belly scar... I was amaZed at how clean it looked.!!! Amanda is pumping. Will be a couple of days until we get food in her besides the iv nutrition.
-- Post From My iPhone
This girl is amazing!
Came in this am and found her without vent. They pulled it over night (didn't call)
Here is the story about 3 am she started dropping o2 they couldn't get it back up so they removed the vent so they could bag her . Shortly after the vent is out she breathes on her own. They don't like her blood gas yet and they have a nasal o2 at 25%
They say she has been awake since 300. When I got here she was looking around so I picked up her paci and she started sucking on it.
What a wonderful Sunday treat!
-- Post From My iPhone
Here is the story about 3 am she started dropping o2 they couldn't get it back up so they removed the vent so they could bag her . Shortly after the vent is out she breathes on her own. They don't like her blood gas yet and they have a nasal o2 at 25%
They say she has been awake since 300. When I got here she was looking around so I picked up her paci and she started sucking on it.
What a wonderful Sunday treat!
-- Post From My iPhone
Saturday, October 24, 2009
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