Monday, December 26, 2005
Worried
Wyatt has slowed his bottle feeding down. He is now only taking 4 bottles and still taking an hr to drink about 70cc. I feel like I'm losing a battle of some kind...its tearing me up.
Thursday, December 22, 2005
Genetics Testing, Occupational Therapist & Nutiritonist
Weight: 9lbs - 5th percentile on the weight chart.
Wyatt got his blood taken today for his genetics testing - the results will take up to 8weeks! We found out that the testing has a 70% accuracy. The tests cost over $3000. We are lucky that the military covers genetics as I have met other families who cannot afford to get the testing done.
The nutritionist said that he was gaining weight at a good rate but that we should add formula to the breastmilk. She said regular Enfamil Lipil would be fine. His length is still very low and not registering on the growth charts at 20 inches. Ideally, Wyatt will be in the 50th perecentile for weight before surgery. It has taken 2 month to get to the 5th percentile so hopefully his rate of growth is about to rapidly increase...
The Occupational Therapist watched us feed Wyatt and agreed that it was o.k. to feed him for an hour (this is for only 2oz!). Normally the rule is no longer than 30 mins. He's a very slow eater because his tongue is so far back and he has no roof to his mouth - this is even compared to other cleft babies. She suggested we get a swallow test done during our next visit to examin exactly what's going on - it requires him to be fed under x-ray (more radiation!?!).
The feeding tube he has now cannot stay in for longer than 2 months or it will cause scaring. He has 5 weeks to increase his weight AND the amount he takes by bottle or the occupational therpaist said it was likely that they will want to place the G-tube. I am now preparing myself for this as it has been mentioned twice this week already.
I was upset when the genetics nurse referred Wyatt's case as "complicated".
Meeting Big Sis
We drove to Birmingham to pick up Taryn for Christmas vacation. This is a photo of Taryn's first time holding Waytt. She did a very good job.
Tuesday, December 20, 2005
Third Time's A Charm
The plug on the end of Wyatt's tube stretched so that the feeding tube that connects to it won't stay in place. The radiologists said there was no way to replace that portion and that we should try taping the two together in order to avoid having to replace the whole thing.
We tried the tape tihing but this morning I woke up and the tape had become wet and the connector came out and soaked Wyatt in milk. The Dr said it would have to be replaced and so it was back to the hospital. The radiologist was concerned that this was the third time in 3 weeks that Wyatt was being exposed to radiation. He suggested that if the next tube doesn't last for more than a couple weeks that we should seriously consider a G-tube. aRGGGH
G-tubes require the patient to be "put under" and then the tube is surgically placed in the stomach wall. Its called a "button" because there is a button on the tummy that you open to do the feedings.
Wyatt hasn't increased the amount he is taking through his bottles. The Pediatricain was hoping that after a few weeks of the tube feeding that his bottles would increase in size and that we would be able stop tube feeding...this SUCKS!
We tried the tape tihing but this morning I woke up and the tape had become wet and the connector came out and soaked Wyatt in milk. The Dr said it would have to be replaced and so it was back to the hospital. The radiologist was concerned that this was the third time in 3 weeks that Wyatt was being exposed to radiation. He suggested that if the next tube doesn't last for more than a couple weeks that we should seriously consider a G-tube. aRGGGH
G-tubes require the patient to be "put under" and then the tube is surgically placed in the stomach wall. Its called a "button" because there is a button on the tummy that you open to do the feedings.
Wyatt hasn't increased the amount he is taking through his bottles. The Pediatricain was hoping that after a few weeks of the tube feeding that his bottles would increase in size and that we would be able stop tube feeding...this SUCKS!
Monday, December 19, 2005
A Place to Call Home
I often visit cleftAdvocate message board and speak with other women whose children have similar diagnoses to Wyatt. The board has saved my sanity. How wonderful to be able to speak with other people who are going through/been through exactly what I am experiencing.
Sunday, December 18, 2005
The Feeding Tube Came Out!
December 4, 2005
Shit! Shit! Shit! Today we were discharged from hospital and within half hour of getting home Wyatt took out his feeding tube. Back to the hospital tomorrow to get another one inserted! The tube makes him sneeze up to 6 times in a row! He often coughs trying to get it out. Hopefully he will get used to it soon as his personality has changed since the tube was inserted. Wyatt needs to be held much more than before and he cries when he's put down to sleep.
Shit! Shit! Shit! Today we were discharged from hospital and within half hour of getting home Wyatt took out his feeding tube. Back to the hospital tomorrow to get another one inserted! The tube makes him sneeze up to 6 times in a row! He often coughs trying to get it out. Hopefully he will get used to it soon as his personality has changed since the tube was inserted. Wyatt needs to be held much more than before and he cries when he's put down to sleep.
Time To Try Tube Feeding
I love this picture!
November 29, 2005 (7 weeks old)
Weight: 7lbs 10oz (9oz below goal)
Wyatt's weight just wasn't increasing the way it should and he still hadn't made it onto the pediatrician's growth chart. It was time to consider tube feeding Wyatt the extra calories he needed.
There weren't any home care companies willing to teach us to place an NJ tube into Wyatt's stomach so we had to opt for an NJ tube to be semi-permenantly placed into his small intestines - this required hospitalization. The Drs orders read "Failure to Thrive" when I checked in - made me teary.
When an NJ tube is inserted trans paloricly the procedure is preformed by a radiologist using X-ray. We were in hospital for 3 nights and discharged using an 8hr nightime feeding schedule of 40cc per hr in addition to his daytime bottles. Goal: 22-24oz per day.
4th Weight Check
November 21, 2005 (5 weeks old)Weight 7lb5.5oz (2.5oz shy of goal)
Try to feed an extra 60cc per day to get weight gain back on track.
Exceptional Family Member Program
November 8, 2005
Met with EFMP people - a Department of Defence program that helps special needs military families deal with duty station assignments to ensure that the exceptional family member has access to adequate care.
I submitted paperwork and a letter from Wyatt's surgeon and geneticist regarding the care he would require. To see everything written on paper was overwhelming - there were 10 specialists listed.
I was told to research our top three preferences for bases and to write a letter to the officer in charge of duty station assignment. We are not guaranteed to get our first choice, but having enrolled in the EFMP should help our chances.
I found an amazing website called cleftAdvocate which listed each state's Cleft Palate Team and contact information. I sent an email to all of the teams we might be stationed near requesting further information.
Met with EFMP people - a Department of Defence program that helps special needs military families deal with duty station assignments to ensure that the exceptional family member has access to adequate care.
I submitted paperwork and a letter from Wyatt's surgeon and geneticist regarding the care he would require. To see everything written on paper was overwhelming - there were 10 specialists listed.
I was told to research our top three preferences for bases and to write a letter to the officer in charge of duty station assignment. We are not guaranteed to get our first choice, but having enrolled in the EFMP should help our chances.
I found an amazing website called cleftAdvocate which listed each state's Cleft Palate Team and contact information. I sent an email to all of the teams we might be stationed near requesting further information.
3rd Weight Check
November 7, 2005 (3 weeks old)
Weight 6lbs10oz
Great News! 1oz per day gained since last appointment. Wyatt was still not on the growth chart yet though.
Weight 6lbs10oz
Great News! 1oz per day gained since last appointment. Wyatt was still not on the growth chart yet though.
2nd Weight Check & Circumcision
November 3, 2005Weight 6lbs6oz
Wyatt put on the 1oz per day that is expected of newborns and so we did not have to worry about the HMF or tube feeding.
His BiliRubin was still high and so more blood was taken to see if the count had come down. I felt so bad as this was the 3rd Drs appointment in a week where they had taken blood or done something horrible to him.
November 4, 2005
BiliRubin was down - no need for photo therapy. Yay! He is still quite yellow and with his dark hair he looks like a Chinese baby!
1st Weight Check
October 31, 2005 (2 weeks old)
Weight 6lbs 3.5oz
Wyatt lost 8oz rather than gaining back his birth weight. Dr. Germanson suggested adding Human Milk Fortefier to my milk. I couldn't find the HMF anywhere and eventually found out it was something a pharmacy would have to order at $150 per box. Insurance denied my claim sighting that his condition did not warrant the use of the HMF. We also increased Wyatt's intake to 45-60cc/ml every 2.5 - 3 hrs.
If Wyatt doesn't gain 1oz per day by his next appointment we would have to consider inserting a feeding tube.
Wyatt was still jaundiced so more blood had to be taken to test his BiliRubin levels. He may need to be admitted to hospital for photo therapy.
Weight 6lbs 3.5oz
Wyatt lost 8oz rather than gaining back his birth weight. Dr. Germanson suggested adding Human Milk Fortefier to my milk. I couldn't find the HMF anywhere and eventually found out it was something a pharmacy would have to order at $150 per box. Insurance denied my claim sighting that his condition did not warrant the use of the HMF. We also increased Wyatt's intake to 45-60cc/ml every 2.5 - 3 hrs.
If Wyatt doesn't gain 1oz per day by his next appointment we would have to consider inserting a feeding tube.
Wyatt was still jaundiced so more blood had to be taken to test his BiliRubin levels. He may need to be admitted to hospital for photo therapy.
A Visit To The Opthalmologist
October 27, 2005 (12 days old)
This appointment was hard as the Dr had to numb Wyatt's eyes and use special tweezers to hold his eyes open to conduct his exam. Wyatt was diagnosed with Myopia (near sightedness). The Dr said he would be writing a letter to the geneticist to advise that he highly suspected the presence of Stickler Syndrome. This was a devastating blow.
This appointment was hard as the Dr had to numb Wyatt's eyes and use special tweezers to hold his eyes open to conduct his exam. Wyatt was diagnosed with Myopia (near sightedness). The Dr said he would be writing a letter to the geneticist to advise that he highly suspected the presence of Stickler Syndrome. This was a devastating blow.
On The Way To Birmingham
October 20, 2005 (5 days old)We were released from the hospital in Dothan and sent directly to University of Alabama Birmingham Children's Hospital for a consultation with the Cleft Palate Team. In order to check in at 8am we got up at 3am and were on the road by 4am. This was the first day that Wyatt had been off his oxygen alarm and IV. It was strange to not have anything hooked up to him.
We were so nervous about Wyatt's breathing that we took turns sitting in the back seat with him on the 3 hr drive to Birmingham. He slept the entire way.
The Cleft Palate Team was amazing. We were so impressed with how efficiently the consultation was set up. We sat in a room and 4 Drs (Occupational Therapist, Surgeon, Geneticist, and Audiologist) came in and out of the room to see us, rather than having us run all over the hospital.
The surgeon said Wyatt should only need 1 surgery at 10-12 months. The geneticist said he wanted to test Wyatt for Sticklers Syndrome and referred us to an Opthalmologist. I was devastated and broke into tears when I heard that Wyatt may have something else to contend with other than his PRS and cleft.
We left Birmingham feeling very tired, but well equipped to deal with our precious baby.
Fiesty Just Like His Mummy
October 16, 2005
The nurses in the ICU said that Wyatt was a very fiesty little boy. After having his 1st bottle the pediatrician dedcided it was o.k. for him to move into Mummy's room. He was kept on an IV and also had an alarm hooked up to his foot to monitor his oxygen levels.
Double click on picture to see Wyatt's cleft (absence of the roof of his mouth) better.
Wyatt's First Bottle
October 16, 2005 (1 Day Old)Due to Wyatt's Pierre Robin Sequence, his lower jaw was too small to allow him to breastfeed. We used a special soft sided bottle to squeeze the colostrum into his mouth, along with a long cleft palate nipple. He ate the whole ounce!
After experimenting with different bottles and nipples, we found the best fit for Wyatt was a mini Haberman Feeder.
I pump breastmilk for the bottles using an electric pump. I highly reccomend Medela products and found a great deal for a total pump/bottle/cooler package at OneStepAhead. Madela makes the Haberman and their regular bottles fit the nipple.
Subscribe to:
Posts (Atom)