Day 8 - 04/30/2010
Today we had another meeting with the occupational therapist and it went really well! He ate 40 cc and they said that he was progressing really well and we could look at maybe this weekend or more likely Monday for him to be coming home! So get ready for some visits people! :) Savannah and I are exhausted between feeding him and pumping and everything- he eats every 3 hours and Savannah has to pump every 3 hours so by the time we're done pumping and feeding him we have to start it all over in another two hours! Which doesn't leave much time for sleep :) but today we asked for a room and they are letting us board in the hospital until monday. So thats good- keep checking the blog and keep us in your prayers, we appreciate all you do!
Love,
The Fordhams
Friday, April 30, 2010
Thursday, April 29, 2010
Wednesday, April 28, 2010
Day 6 - 04/28/2010
Wow, almost a week old already. Not much news to report today; we talked to the another new pediatrician who said that we would like to see him get all of his feeds through his bottle- he is supposed to get 50 cc every 3 hours. Well this morning he got around nine, and then this afternoon he got four! He sucked consistently for forty five minutes straight and was awake the entire time and they are trying to tell me that it's because he is premature and isn't very interested in eating...... Well when I finished feeding him (they don't want him to try for longer then forty five minutes) he still acted hungry and attacked his binky- it's not that he isn't interested in eating, it's because he has a CLEFT PALATE!.... :). Any way he took a hearing test today and passed which is awesome because the ear is closely related to the mouth and nose (your auditory tubes) so kids with cleft palates are prone to ear infections and hearing problems. He took a bilirooben (however you spell it) count test today too and passed that as well, I'm telling you the boys a stud. Well thats about it as far as NEWS for today- the rest of this post will cover exactly what is cleft lip/palate in general, it's effects on children, and treatment.
Overview
Cleft lip and palate are birth defects that affect the upper lip and the roof of the mouth.
Symptoms
A child may have one or more of these conditions at birth.
A cleft lip may be just a small notch in the lip. It may also be a complete split in the lip that goes all the way to the base of the nose. A cleft palate can be on one or both sides of the roof of the mouth. It may go the full length of the palate.
Other symptoms include:
Misaligned teeth
Change in nose shape (amount of distortion varies)
Problems that may be present because of a cleft lip or palate are:
Failure to gain weight
Feeding problems
Flow of milk through nasal passages during feeding
Misaligned teeth
Poor growth
Recurrent ear infections
Speech difficulties
Treatment
Surgery to close the cleft lip is often done at when the child is between 6 weeks and 9 months old. Surgery may be needed later in life the problem severely affects the nose area. See: Cleft lip and palate repair
A cleft palate is usually closed within the first year of life so that the child's speech normally develops. Sometimes a prosthetic device is temporarily used to close the palate so the baby can feed and grow until surgery can be done.
Continued follow-up may be needed with speech therapists and orthodontists.
Causes
Risk factors include a family history of cleft lip or palate and other birth defect. About 1 out of 2,500 people have a cleft palate.
Prognosis
Although treatment may continue for several years and require several surgeries, most children with a cleft lip and palate can achieve normal appearance, speech, and eating. However, some people may have continued speech problems.
Complications
Dental cavities
Displaced teeth
Hearing loss
Lip deformities
Nasal deformities
Recurrent ear infections
Speech difficulties
Ok now that our little Wikipedia health class is over I can tell you a bit more real life stuff and things particular to Rocky. We found out that Rocky had cleft lip/palate at our twenty week ultrasound. Savannah had a rough time at first but we came to accept that our little baby wasn't going to look just like every other one. We had a lot of doctors appointments both at the womens health clinic and at Timpanogos Regional Medical Center. The appointments at Timpanogos were with perinatology through St. Marks hospital- they did a thoughough ultrasound every four weeks at first, then as the pregnancy progressed every two weeks, and eventually every week. They checked his heart and his brain and everything to make sure that he was growing normally. They told us at our first visit that they were pretty sure that he was going to have bi lateral cleft lip and cleft palate. They also noticed that he was not growing very well and that his abdomen was very small- which is why Savannah was induced.
When Rocky was born it was difficult for me at first- every one expects the perfect pregnancy, perfect labor and delivery, and perfect baby. Rocky IS perfect- it just took me a minute to see it at first. Savannah- who had a harder time with the news at first, before he was born- fell in love instantly (as mothers seem to do).
Rocky has a very difficult time getting any suction in his mouth to feed from a bottle or to breast feed. Babies with cleft palate generally spit up more, and need to be burped often. So feeding him takes a very long time. We've been told that they choke and sputter a lot but Rocky hasn't seemed to have much of a problem with that; also they can be very fussy and needy- Rocky on the other hand is the most easy going little guy in the world. On nurse who has worked in the NICU for thirty years said that he was the most easy going happy baby with cleft palate that she has ever seen, and he hasn't had any of the problems that they tend to have- like I said, a stud right?
That should about cover it, if you have any questions just ask in the comments section... I think I know how to use that. Thanks for reading and thank you again for your prayers and support!
Love,
The Fordhams
Wow, almost a week old already. Not much news to report today; we talked to the another new pediatrician who said that we would like to see him get all of his feeds through his bottle- he is supposed to get 50 cc every 3 hours. Well this morning he got around nine, and then this afternoon he got four! He sucked consistently for forty five minutes straight and was awake the entire time and they are trying to tell me that it's because he is premature and isn't very interested in eating...... Well when I finished feeding him (they don't want him to try for longer then forty five minutes) he still acted hungry and attacked his binky- it's not that he isn't interested in eating, it's because he has a CLEFT PALATE!.... :). Any way he took a hearing test today and passed which is awesome because the ear is closely related to the mouth and nose (your auditory tubes) so kids with cleft palates are prone to ear infections and hearing problems. He took a bilirooben (however you spell it) count test today too and passed that as well, I'm telling you the boys a stud. Well thats about it as far as NEWS for today- the rest of this post will cover exactly what is cleft lip/palate in general, it's effects on children, and treatment.
Overview
Cleft lip and palate are birth defects that affect the upper lip and the roof of the mouth.
Symptoms
A child may have one or more of these conditions at birth.
A cleft lip may be just a small notch in the lip. It may also be a complete split in the lip that goes all the way to the base of the nose. A cleft palate can be on one or both sides of the roof of the mouth. It may go the full length of the palate.
Other symptoms include:
Misaligned teeth
Change in nose shape (amount of distortion varies)
Problems that may be present because of a cleft lip or palate are:
Failure to gain weight
Feeding problems
Flow of milk through nasal passages during feeding
Misaligned teeth
Poor growth
Recurrent ear infections
Speech difficulties
Treatment
Surgery to close the cleft lip is often done at when the child is between 6 weeks and 9 months old. Surgery may be needed later in life the problem severely affects the nose area. See: Cleft lip and palate repair
A cleft palate is usually closed within the first year of life so that the child's speech normally develops. Sometimes a prosthetic device is temporarily used to close the palate so the baby can feed and grow until surgery can be done.
Continued follow-up may be needed with speech therapists and orthodontists.
Causes
Risk factors include a family history of cleft lip or palate and other birth defect. About 1 out of 2,500 people have a cleft palate.
Prognosis
Although treatment may continue for several years and require several surgeries, most children with a cleft lip and palate can achieve normal appearance, speech, and eating. However, some people may have continued speech problems.
Complications
Dental cavities
Displaced teeth
Hearing loss
Lip deformities
Nasal deformities
Recurrent ear infections
Speech difficulties
Ok now that our little Wikipedia health class is over I can tell you a bit more real life stuff and things particular to Rocky. We found out that Rocky had cleft lip/palate at our twenty week ultrasound. Savannah had a rough time at first but we came to accept that our little baby wasn't going to look just like every other one. We had a lot of doctors appointments both at the womens health clinic and at Timpanogos Regional Medical Center. The appointments at Timpanogos were with perinatology through St. Marks hospital- they did a thoughough ultrasound every four weeks at first, then as the pregnancy progressed every two weeks, and eventually every week. They checked his heart and his brain and everything to make sure that he was growing normally. They told us at our first visit that they were pretty sure that he was going to have bi lateral cleft lip and cleft palate. They also noticed that he was not growing very well and that his abdomen was very small- which is why Savannah was induced.
When Rocky was born it was difficult for me at first- every one expects the perfect pregnancy, perfect labor and delivery, and perfect baby. Rocky IS perfect- it just took me a minute to see it at first. Savannah- who had a harder time with the news at first, before he was born- fell in love instantly (as mothers seem to do).
Rocky has a very difficult time getting any suction in his mouth to feed from a bottle or to breast feed. Babies with cleft palate generally spit up more, and need to be burped often. So feeding him takes a very long time. We've been told that they choke and sputter a lot but Rocky hasn't seemed to have much of a problem with that; also they can be very fussy and needy- Rocky on the other hand is the most easy going little guy in the world. On nurse who has worked in the NICU for thirty years said that he was the most easy going happy baby with cleft palate that she has ever seen, and he hasn't had any of the problems that they tend to have- like I said, a stud right?
That should about cover it, if you have any questions just ask in the comments section... I think I know how to use that. Thanks for reading and thank you again for your prayers and support!
Love,
The Fordhams
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Tuesday, April 27, 2010
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Day 6 - 4/27/2010
Ok so I decided that I didn't want to go through every day and catch up with different posts- so I'm just going to be doing a real quick summary- and I plan on making my next post a brief overview of cleft lip/cleft palate and more about his status and prognosis.
Ok, so first I want to advise anyone who may work or know someone who works at Timpanogos Regional Medical Center or anyone who has delivered or been treated here to not get offended- this has just been our experience here, and we have had some really great nurses- but this hospital is TERRIBLE! The NICU nurses have been nightmares for the most part, their on call pediatrician was awful, and we have just felt really ..... overlooked. They don't seem to really care about our concerns as parents or about the family unit and bonding. Granted- this is their job, they get to leave after twelve hours and not think about it again, but this is our LIFE.
OK........ (sigh.....)
When Rocky was born he had some breathing problems. He was breathing really rapidly- normal rate for a baby is around 30 - 60 respiration's a minute and he was over 100 a minute. The good news is that his SPO2 (Saturation of Peripheral Oxygen) was great and he was trading oxygen and carbon dioxide really well; he was just breathing really fast. So they had him under a little bubble dome thing that gave him higher oxygen and humidified the air. He was also under a heat lamp and had and I.V. He was gradually weened off of the oxygen and by the end of the next day he was just breathing normal air. He still had to have the bubble over his head to humidify the air. They gave him his nutrients through the I.V. and we tried to feed from a bottle, poor little guy just couldn't get much because of his cleft.
After two days they inserted an OG (Orogastric) tube into his stomach and fed him through that while we still would try to feed him through a bottle. The hospital gave us a couple of special bottles that are made for babies with cleft lip/palate to try and feed him- but they just didn't work. Savannah and I had actually already bought some special bottles at the advice of a family that we met that has had four children with cleft palate (The Gurlachs- they are the absolute best family that we have ever met!! WE LOVE YOU GUYS! THANK YOU!) and they actually worked really well! It was such a relief to find something that actually worked- but when we were using them a nurse came in and said that we couldn't use those bottles because they were against "hospital policy." Some of the other nurses in the NICU even objected saying he was finally getting food through a bottle- but they still refused to let us use the bottles (Even though since then I have still snuck one in several times :))
By the next day they had started to increase his feeds because he was successfully digesting what was in his stomach without and residuals (leftovers). He is now up to his full feeds (50 ml) and is getting better every day! We have had three pediatricians and everyone has said something different. Yesterday we were told he could come home today or tomorrow, and now the pediatrician that we had today said that he wouldn't be able to leave for two more weeks! Needless to say we are at the end of our ropes and have been very stressed.
After our whopping $1200 hospital bill for the delivery we are still going to have to pay for a month in the NICU! Heaven help us!- but we have had so many people visit and such great support! Thank you all!
Rocky has been doing really well and is such a sweet little baby! He is usually fairly calm and just looks up at you with his big eyes like he's trying to talk to you. Savannah and I are totally in love. I admit that it was even hard for me; at first I didn't make that "immediate connection" that people often talk about- but now he has me wrapped around his finger. Hopefully soon we will be able to bring our angel home and start looking toward the future. Please keep our little guy in your prayers! Thank you again for all your love and support!
Love,
The Fordhams
Ok so I decided that I didn't want to go through every day and catch up with different posts- so I'm just going to be doing a real quick summary- and I plan on making my next post a brief overview of cleft lip/cleft palate and more about his status and prognosis.
Ok, so first I want to advise anyone who may work or know someone who works at Timpanogos Regional Medical Center or anyone who has delivered or been treated here to not get offended- this has just been our experience here, and we have had some really great nurses- but this hospital is TERRIBLE! The NICU nurses have been nightmares for the most part, their on call pediatrician was awful, and we have just felt really ..... overlooked. They don't seem to really care about our concerns as parents or about the family unit and bonding. Granted- this is their job, they get to leave after twelve hours and not think about it again, but this is our LIFE.
OK........ (sigh.....)
When Rocky was born he had some breathing problems. He was breathing really rapidly- normal rate for a baby is around 30 - 60 respiration's a minute and he was over 100 a minute. The good news is that his SPO2 (Saturation of Peripheral Oxygen) was great and he was trading oxygen and carbon dioxide really well; he was just breathing really fast. So they had him under a little bubble dome thing that gave him higher oxygen and humidified the air. He was also under a heat lamp and had and I.V. He was gradually weened off of the oxygen and by the end of the next day he was just breathing normal air. He still had to have the bubble over his head to humidify the air. They gave him his nutrients through the I.V. and we tried to feed from a bottle, poor little guy just couldn't get much because of his cleft.
After two days they inserted an OG (Orogastric) tube into his stomach and fed him through that while we still would try to feed him through a bottle. The hospital gave us a couple of special bottles that are made for babies with cleft lip/palate to try and feed him- but they just didn't work. Savannah and I had actually already bought some special bottles at the advice of a family that we met that has had four children with cleft palate (The Gurlachs- they are the absolute best family that we have ever met!! WE LOVE YOU GUYS! THANK YOU!) and they actually worked really well! It was such a relief to find something that actually worked- but when we were using them a nurse came in and said that we couldn't use those bottles because they were against "hospital policy." Some of the other nurses in the NICU even objected saying he was finally getting food through a bottle- but they still refused to let us use the bottles (Even though since then I have still snuck one in several times :))
By the next day they had started to increase his feeds because he was successfully digesting what was in his stomach without and residuals (leftovers). He is now up to his full feeds (50 ml) and is getting better every day! We have had three pediatricians and everyone has said something different. Yesterday we were told he could come home today or tomorrow, and now the pediatrician that we had today said that he wouldn't be able to leave for two more weeks! Needless to say we are at the end of our ropes and have been very stressed.
After our whopping $1200 hospital bill for the delivery we are still going to have to pay for a month in the NICU! Heaven help us!- but we have had so many people visit and such great support! Thank you all!
Rocky has been doing really well and is such a sweet little baby! He is usually fairly calm and just looks up at you with his big eyes like he's trying to talk to you. Savannah and I are totally in love. I admit that it was even hard for me; at first I didn't make that "immediate connection" that people often talk about- but now he has me wrapped around his finger. Hopefully soon we will be able to bring our angel home and start looking toward the future. Please keep our little guy in your prayers! Thank you again for all your love and support!
Love,
The Fordhams
The Delivery
Day 1 - 04/22/2010
Savannah and I (Yes, Kyle is the maker of this blog! Believe it) found out just the night before that we would be delivering today! Savannah went in to crazy maternal mode and we got everything ready at home for our new addition. We were schedueled for a version (trying to turn the baby because he was breech) at 0530 so needless to say we didnt get any sleep. We were up at 0400 getting everything finalized and started off for the hospital at about 0500. When we got there they put us in a prep room and set up Savannah on an I.V. line and started her on fluid to keep her blood pressure from dropping if we ended up having to do a c section. Savannah headed in to the O.R. at 0730 and I was instructed to put on my "daddy clothes" and wait until they come and got me. At 0740 they said I should hurry and come in. They started the C section at 0743 and Rocky Kyle Fordham was officially born at 0748. It all went so fast! When asked how I liked watching the C section I said.... "well, I didn't feel sick or anything but if I was given the chance to re-live any moment in my life it would NOT be THAT one!" They stitched Savannah up and I got to go with the baby. I probably won't be this specific about everything else but this was the delivery so I think it's important to be detailed. Thanks and love you all!
Savannah and I (Yes, Kyle is the maker of this blog! Believe it) found out just the night before that we would be delivering today! Savannah went in to crazy maternal mode and we got everything ready at home for our new addition. We were schedueled for a version (trying to turn the baby because he was breech) at 0530 so needless to say we didnt get any sleep. We were up at 0400 getting everything finalized and started off for the hospital at about 0500. When we got there they put us in a prep room and set up Savannah on an I.V. line and started her on fluid to keep her blood pressure from dropping if we ended up having to do a c section. Savannah headed in to the O.R. at 0730 and I was instructed to put on my "daddy clothes" and wait until they come and got me. At 0740 they said I should hurry and come in. They started the C section at 0743 and Rocky Kyle Fordham was officially born at 0748. It all went so fast! When asked how I liked watching the C section I said.... "well, I didn't feel sick or anything but if I was given the chance to re-live any moment in my life it would NOT be THAT one!" They stitched Savannah up and I got to go with the baby. I probably won't be this specific about everything else but this was the delivery so I think it's important to be detailed. Thanks and love you all!
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