Lincoln's inguinal hernia repair surgery went well today. His surgeon who repaired his diaphragm hernia performed the surgery. She was so pleased to see Lincoln and how big he has gotten. It's been about two months since she has seen him. He was smiling at her and talking a little. She just loved it! After Lincoln was given an albuterol treatment, he was taken back for the surgery. We were told that he was very feisty and did not go to sleep with the gas they gave him so he got his IV while still awake (poor baby!). They couldn't give too much sedation before intubating him though, so there wasn't much choice. I guess he still has quite a tolerance for sedation.
The surgeon did find that Lincoln actually had a hernia on both the left and right, so she repaired both. She said she tried to look at his diaphragm with the camera, but Linc's liver is covering the repair location. But from what she could see, it all looked good. The whole procedure took about two hours. Afterward, Lincoln was upset for some time in recovery and was very sleepy. He was whining and very hoarse with a sore throat from the breathing tube. The nurses were having trouble weaning Lincoln's oxygen back to his baseline and had to keep him on 2L while he was so upset. Over a few hours, and several naps later, Linc was feeling better and his oxygen was able to be turned down to his normal 0.8LPM and he was able to drink a little formula. So we were sent home with instructions to give tylenol every 4 hours for one day, then as needed. We will return in 4 weeks or so for a follow-up appointment with Linc's surgeon. The surgeon used dissolving stitches inside and skin glue on the outside, so we don't need to return for any stitches removal.
Lincoln's Newborn Medicine doc came by to see him in recovery since we haven't been back to see her in over a month. She was so pleased with Lincoln's growth (14lbs 12oz, and 25.75inches long! ) and she was happy to hear how well he is doing developmentally (close to sitting unassisted and talking up a storm!). She said she would call in a few weeks to check on Linc after he has had time to recover from surgery and if all is well, she will have me turn down his Os over the phone! She will also coordinate our next visit with Linc's surgery follow-up appt.
Since we have been home, Lincoln has been pretty much himself and has already taken a full bottle and gone to bed like the good little boy that he is. He has been such a trooper, as always.
Friday, December 23, 2011
Sunday, December 11, 2011
Time Flies
Lincoln's latest measurements are 14lbs 3 oz (<3%), 25" long (25%)and 43cm HC (25%). His head and length are getting up there! Now we just need to work on his waistline. I have started adding some olive oil to his diet to get in some extra fat. Hopefully that helps him gain a few lbs. He is taking anywhere from 3-6 oz per feeding (totaling about 24 oz per 24 hours - goal is about 33 oz) Lincoln still wakes several times per night. I feed him once at night and just rock him the other times he wakes. Lincoln has started eating a few solids over the past month, including rice cereal, oatmeal, carrots, sweet potatoes(the favorite by far!), and avocado. Aside from the sweet potatoes, he usually only takes 2-3 bites before crying, which is when I end the meal. There is no rush right now to introduce solids, so we are just taking it slow and trying to enjoy it, being careful not to create any aversions.
Respiratory status is stable. Still on 0.8 LPM oxygen 24/7. Linc has been getting albuterol treatments as needed for wheezing over the past month, and seems to be feeling much better. He only needs a treatment every few days and whenever I need to take him out in the cold weather he seems to need more treatments, but thankfully that isn't too often. Lincoln absolutely hates the treatments, but they do wonders for him.
We have had a few visits now from Missouri First Steps, but really we are still just beginning. Lincoln will see nutrition and physical therapy once per month, and occupational therapy twice per month.
Lincoln's great Aunt Michelle was able to meet Lincoln for the first time when she visited with her husband the other day. Lincoln has also had a few visits with his Aunt Jen, Uncle Pat, and cousins Layla and Aubrey over the past few weeks. Lincoln is kind of hit or miss when it comes to outtings. He does seem to be very social when he is feeling comfortable. He willingly smiles and coos at even first time visitors. The first time he has reached for a person was for cousin Aubrey at our last visit.
As you can see, I have been having a great time taking pictures with Dan's old camera, given to him by his parents many moons ago. I actually decided to keep Linc home for his 6 month pictures and they turned out pretty good! I just was too nervous to take him to a studio during the most busy time of year for children to have their picture taken (Christmas). Maybe by his 9 month pics I will feel more comfortable taking him out. We currently only take trips to the doctor or the occasional trip to Grandma and Grandpas. No public places through April to keep Lincoln healthy. Lincoln has had a good month and we look forward to our first Christmas as a family!
Friday, November 11, 2011
First Steps Meeting
The visit from Missouri First Steps coordinators this morning went well. Based on my main concerned for Lincoln, self-calming and eating, his main therapist will be occupational. He will also receive support from physical therapy and a nutritionist. His first appointments are not set up yet, but we are going to start with OT twice per month and PT and Nutrition once per month. Lincoln will be re-evaluated every six months until age three, when he graduated from the program. Of course, I can change anything from frequency of visits to removing Linc from the program at any time if I feel the need. So far I am very happy with the people and services of MO First Steps and hopefully they will be helpful to Lincoln's development.
Second Report Card
Yesterday I took Lincoln to SLCH for his clinic appointments for Newborn Medicine and Pediatric Surgery, and Lincoln got his second good "report card!" Lincoln also did excellent in the car! He barely cried at all and seemed to enjoy himself at times. He likes to look in the mirror and just give him a blanket to feel and chew and he is alright!
Newborn Medicine was our first appointment and Lincoln was very fussy by that point. (It was time for his morning nap). After he was weighed and measured (12 lbs 11oz, 24.5 inches long) I was able to calm him and he slept for about 15 minutes while I talked to the doc. Lincoln was refreshed enough for a quick exam after that and a breathing treatment of Albuterol to help with his on-going wheezing and coughing. He hates the treatments, but they help him a lot. His wheezing was completely gone after the treatment. I am to continue nebulizer treatments of Albuterol at home ever 6 hours throughout the weekend and then switch for twice per day to help Linc get over his wheeze, hopefully stopping all treatments within about 10 days. The doc said it is very common for kids that were on the vent for a long time to wheeze, especially the first winter. She does not expect Lincoln to be "asthmatic" or to need treatment long-term.
Otherwise, no changes for Linc. His doc was pleased with his weight gain (approx. 20 grams gained per day since our last visit - perfect!) and happy with Lincoln's tone and physical development. He will remain on the concentrated formula to help him catch up. Even though his average weight gain was good, he is still well below the average weight for his age group. Linc will remain on 0.8LPM of oxygen, probably throughout the winter. His doctor doesn't want to push him too hard when he may be catching colds. I am still really hoping Lincoln is free of lines by the time he crawls! That would just be a nightmare!
Linc also had an echocardiogram and chest x-ray in between the two visits. Lincoln did great for both. There was a TV in the room for the echo so Lincoln pretty much watched cartoons the whole time. The last echo Linc had was back in June right after his repair surgery. At that time he was still on the ventilator and Nitric Oxide so the two echos are really not exactly comparable but it was all the doctor had to go on. Although Linc's echo yesterday did show improvement and good function overall for someone who is oxygen dependent, there are still signs of some hypertension. Therefore, Lincoln's surgeon, neonatologist, and cardiologist all agree that he should stay on his small dose of sildenafil. The hypertension does not appear to be severe enough to justify increasing Lincoln's dose, but since he still has some hypertension present, so discontinuing the med is not wanted either. The doctor said that she would like to see another echo in about to months.
Lincoln was not too happy to get his chest x-ray, but it was over quickly. They were able to get good pictures the first time. His x-ray looks good, with no signs of reherniation or pneumonia. After the x-ray we headed up to see Linc's surgeon. She was also happy with Lincoln's growth and health.
Lincoln has had a suspected inguinal hernia since birth that has not caused any issues until recently. (Yes. That makes three birth defects in all.) I actually brought Linc to the ER Monday night after a short episode where he seemed to be in pain, but everything turned out to be OK. His surgeon was notified of our visit and she suggested setting a surgery date to repair the hernia. I was hoping to have Lincoln's inguinal hernia repaired at the same time as his hypospadias but the urologist wants to wait until Lincoln is closer to 1 year for that and the inguinal hernia is more urgent. I scheduled Lincoln's surgery to repair the inguinal hernia for December 9th. It is expected to be an easy, outpatient surgery and Linc can go home that evening. It will be nice to have another thing fixed and off of the "watch list."
Lincoln was exhausted by the time our five hour trip was finished and he fell asleep fast in the car on the way home. Overall, it was a really good trip with lots of good things to report on Lincoln. His doctors and I are just pleased as punch. Lincoln's next clinic will be next month, just before his surgery.
Newborn Medicine was our first appointment and Lincoln was very fussy by that point. (It was time for his morning nap). After he was weighed and measured (12 lbs 11oz, 24.5 inches long) I was able to calm him and he slept for about 15 minutes while I talked to the doc. Lincoln was refreshed enough for a quick exam after that and a breathing treatment of Albuterol to help with his on-going wheezing and coughing. He hates the treatments, but they help him a lot. His wheezing was completely gone after the treatment. I am to continue nebulizer treatments of Albuterol at home ever 6 hours throughout the weekend and then switch for twice per day to help Linc get over his wheeze, hopefully stopping all treatments within about 10 days. The doc said it is very common for kids that were on the vent for a long time to wheeze, especially the first winter. She does not expect Lincoln to be "asthmatic" or to need treatment long-term.
Otherwise, no changes for Linc. His doc was pleased with his weight gain (approx. 20 grams gained per day since our last visit - perfect!) and happy with Lincoln's tone and physical development. He will remain on the concentrated formula to help him catch up. Even though his average weight gain was good, he is still well below the average weight for his age group. Linc will remain on 0.8LPM of oxygen, probably throughout the winter. His doctor doesn't want to push him too hard when he may be catching colds. I am still really hoping Lincoln is free of lines by the time he crawls! That would just be a nightmare!
Linc also had an echocardiogram and chest x-ray in between the two visits. Lincoln did great for both. There was a TV in the room for the echo so Lincoln pretty much watched cartoons the whole time. The last echo Linc had was back in June right after his repair surgery. At that time he was still on the ventilator and Nitric Oxide so the two echos are really not exactly comparable but it was all the doctor had to go on. Although Linc's echo yesterday did show improvement and good function overall for someone who is oxygen dependent, there are still signs of some hypertension. Therefore, Lincoln's surgeon, neonatologist, and cardiologist all agree that he should stay on his small dose of sildenafil. The hypertension does not appear to be severe enough to justify increasing Lincoln's dose, but since he still has some hypertension present, so discontinuing the med is not wanted either. The doctor said that she would like to see another echo in about to months.
Lincoln was not too happy to get his chest x-ray, but it was over quickly. They were able to get good pictures the first time. His x-ray looks good, with no signs of reherniation or pneumonia. After the x-ray we headed up to see Linc's surgeon. She was also happy with Lincoln's growth and health.
Lincoln has had a suspected inguinal hernia since birth that has not caused any issues until recently. (Yes. That makes three birth defects in all.) I actually brought Linc to the ER Monday night after a short episode where he seemed to be in pain, but everything turned out to be OK. His surgeon was notified of our visit and she suggested setting a surgery date to repair the hernia. I was hoping to have Lincoln's inguinal hernia repaired at the same time as his hypospadias but the urologist wants to wait until Lincoln is closer to 1 year for that and the inguinal hernia is more urgent. I scheduled Lincoln's surgery to repair the inguinal hernia for December 9th. It is expected to be an easy, outpatient surgery and Linc can go home that evening. It will be nice to have another thing fixed and off of the "watch list."
Lincoln was exhausted by the time our five hour trip was finished and he fell asleep fast in the car on the way home. Overall, it was a really good trip with lots of good things to report on Lincoln. His doctors and I are just pleased as punch. Lincoln's next clinic will be next month, just before his surgery.
Monday, November 7, 2011
Synagis Shot, and Side Notes
Linc had an appointment at the pediatrician this morning for his first Synagis shot (RSV antibodies). He did ok in the car on the way there. He likes it best when the car is moving, as most kids do. Lincoln was in a pretty good mood after being taken out of his car seat. We got his weight (12 lbs 5 oz = less than 1% for his age, but at least he's growing!) to verify the Synagis dose. No other measurements were taken though since his 6 month well visit isn't until next month.
Lincoln was smiling and talking to Dr. Fitz-James when she came in. She was very pleased with his progress, especially head control and awareness of his surroundings. She told me that Lincoln's cough and sneezing probably meant he had another cold. She said he most likely has had a string of different infections, rather than one cold lasting for the past 6 weeks since Lincoln has had some days when his symptoms are better. She said as long as his SO2 stays up that his wheezing and coughing are nothing to be too concerned about. His airways are not completely healthy yet and some respiratory "stress" is to be expected. If his mild upper respiratory symptoms turn into lower respiratory symptoms, that is when we get worried. She did find a mild ear infection in Lincoln's right ear, probably due to him having nasal drainage for so many weeks. Lincoln has been more irritable the past 4 days or so, but he never ran a fever or pulled at his ears. She prescribed a round of antibiotics to make sure he gets over the infection.
The doc gave the go-ahead for Lincoln to start experimenting with solids in a few weeks since he is holding his head up in-line now when sitting. She also said that giving Linc some water and juice are ok too to make sure his bowels stay soft since he is on a concentrated formula, and may need some extra fluids. After the doctor was finished, the nurse gave Linc his Synagis shot, which was quite big, almost one ml. He also got a few of his 6 month vaccines so that he doesn't have so many shots at once next time we visit. He will get his flu shot next month too, as he will be 6 months the required minimum age! In all Lincoln got 3 shots in his thighs and one oral vaccine. He wasn't too happy after that (poor baby), but he soon fell asleep in the car and has been since. The doctor did say that Linc could run a fever from the shots and of course he may be irritable.
It was a good visit and nice to have a professional look Lincoln over, especially with his lingering cold symptoms. Needless to say, I worry about Lincoln constantly as a first time mom in addition to Linc's CDH. It's a little comforting to know he now has the RSV antibodies to help him out this season, and next month he will even have the flu vaccine to help more! Lincoln will go back to the pediatrician every 28 days through RSV season (Nov - March) to get a Synagis shot to help him fight any RSV he may come in contact with. Linc has two doctor appointments (Newborn Med and Surgery) and an echocardiogram scheduled for this Thursday at St. Louis Children's Hospital Clinics. Hopefully he will get two "good report cards" this week.
Side Note #1
Lincoln was accepted to the Missouri First Steps program for his home developmental therapies! He was accepted based on the DAYC evaluation that was taken a few weeks ago. He scored below his age group (5 months) in all five categories, but had to score at half of his age to qualify.
Cognition - 4 months
Communication - 3 months
Social/Emotional - 1 month
Physical Development - 3 months
Adaptive Behavior (self calming/dressing/bathing)- Birth
We have an appointment this Friday to discuss frequency of visits and what therapies Lincoln will benefit from. The Missouri program is more family based than the private agency we were using before, meaning the goal is to teach me, the parent, to help Lincoln, and not depend on only therapist working with Lincoln. He will have one main therapist, probably a PT, but she will have access to OT and Speech as consults if we run into a road block. I'll know more after our visit Friday. I'm so happy that Linc was accepted. This way I know I will get he help I need to help Lincoln catch up properly.
Side Note #2
Since I didn't post for Halloween, I thought I would sneak these pictures in of Lincoln's first Halloween. He didn't dress up, but still looked festive in a Jack-O-Lantern shirt and sleeper. We just stayed in and handed out candy to the many trick-or-treaters we get.
Lincoln was smiling and talking to Dr. Fitz-James when she came in. She was very pleased with his progress, especially head control and awareness of his surroundings. She told me that Lincoln's cough and sneezing probably meant he had another cold. She said he most likely has had a string of different infections, rather than one cold lasting for the past 6 weeks since Lincoln has had some days when his symptoms are better. She said as long as his SO2 stays up that his wheezing and coughing are nothing to be too concerned about. His airways are not completely healthy yet and some respiratory "stress" is to be expected. If his mild upper respiratory symptoms turn into lower respiratory symptoms, that is when we get worried. She did find a mild ear infection in Lincoln's right ear, probably due to him having nasal drainage for so many weeks. Lincoln has been more irritable the past 4 days or so, but he never ran a fever or pulled at his ears. She prescribed a round of antibiotics to make sure he gets over the infection.
The doc gave the go-ahead for Lincoln to start experimenting with solids in a few weeks since he is holding his head up in-line now when sitting. She also said that giving Linc some water and juice are ok too to make sure his bowels stay soft since he is on a concentrated formula, and may need some extra fluids. After the doctor was finished, the nurse gave Linc his Synagis shot, which was quite big, almost one ml. He also got a few of his 6 month vaccines so that he doesn't have so many shots at once next time we visit. He will get his flu shot next month too, as he will be 6 months the required minimum age! In all Lincoln got 3 shots in his thighs and one oral vaccine. He wasn't too happy after that (poor baby), but he soon fell asleep in the car and has been since. The doctor did say that Linc could run a fever from the shots and of course he may be irritable.
It was a good visit and nice to have a professional look Lincoln over, especially with his lingering cold symptoms. Needless to say, I worry about Lincoln constantly as a first time mom in addition to Linc's CDH. It's a little comforting to know he now has the RSV antibodies to help him out this season, and next month he will even have the flu vaccine to help more! Lincoln will go back to the pediatrician every 28 days through RSV season (Nov - March) to get a Synagis shot to help him fight any RSV he may come in contact with. Linc has two doctor appointments (Newborn Med and Surgery) and an echocardiogram scheduled for this Thursday at St. Louis Children's Hospital Clinics. Hopefully he will get two "good report cards" this week.
Side Note #1
Lincoln was accepted to the Missouri First Steps program for his home developmental therapies! He was accepted based on the DAYC evaluation that was taken a few weeks ago. He scored below his age group (5 months) in all five categories, but had to score at half of his age to qualify.
Cognition - 4 months
Communication - 3 months
Social/Emotional - 1 month
Physical Development - 3 months
Adaptive Behavior (self calming/dressing/bathing)- Birth
We have an appointment this Friday to discuss frequency of visits and what therapies Lincoln will benefit from. The Missouri program is more family based than the private agency we were using before, meaning the goal is to teach me, the parent, to help Lincoln, and not depend on only therapist working with Lincoln. He will have one main therapist, probably a PT, but she will have access to OT and Speech as consults if we run into a road block. I'll know more after our visit Friday. I'm so happy that Linc was accepted. This way I know I will get he help I need to help Lincoln catch up properly.
Side Note #2
Since I didn't post for Halloween, I thought I would sneak these pictures in of Lincoln's first Halloween. He didn't dress up, but still looked festive in a Jack-O-Lantern shirt and sleeper. We just stayed in and handed out candy to the many trick-or-treaters we get.
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| I LOVE this picture! |
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| Mommy and Linc. (My first attempt at using the timer on our camera.) |
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| My bright eyed boy. |
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| It was a long night. Those Trick-or-Treaters kept comin! |
Thursday, October 27, 2011
Everybody's Favorite
Pictures from the last weeks...
Meeting cousin Layla...
...and Aubrey for the first time.
(Aubrey and Linc are only 3 months apart!)
Lincoln and Aubrey hold hands!
Go Cards!
(It's hard to see, but this is Linc's "Rookie Player" Cardinals shirt)
Another pic of Lincoln's scar from his diaphragm repair surgery.
Yum Yum
Watching his mobile in bed.
Lincoln is just adorable in "big boy" clothes!
Working on head control.
His activity mat has many interesting colors and shapes to look at!
Handsome boy!
He's so big!
Look at that concentration!
Birthday Bath Time
Lincoln is 5 months old! I can hardly believe it! He has now been home for half of his life! Since Lincoln no longer hates bath time, we "celebrated" with a bath before bed. I have never posted about bath time before since Lincoln always cried through the whole thing and it doesn't make for great pictures. It's great Lincoln is beginning to enjoy things more. He still doesn't get what I would call excited for a bath, but he does seem to like it and kicks his legs a little in the water. He only cries when I wash his hair. He has even begun to enjoy lotion application / massage afterwards!
Relaxing...
(Linc's scar looks great. You can just barely see it where his bottom rib would be on the right. It almost looks like a wrinkle.)
Kickin those legs
I love that smile!
Since it has been a few weeks since Lincoln has been to the doctor, I measured him at home for a quick check. He is over 12 lbs and more than 24 inches long. His eyes are still a strange color that Grandma has come to call "mystic." It's kind of a dark grey with brown and blue mixed in. Very unique. I'm hoping they stay that way. Lincoln is now in 3 month tops (but they are getting snug) and 3 month bottoms could probably fit, but he is still wearing 0-3 most days on the bottom. (He has the tiniest waist!) But he is on 6 month socks! He has also graduated to size 2 diapers. Lincoln has started to suck his thumb but still likes to chew on his pacifier and needs it to get to sleep. He seems to be off and on teething too, with so much drooling! He is sitting pretty well with assistance, and has begun to tolerate some tummy time (Finally, yay!) but still has a long way to go with head control. He has strong legs and loves to stand with help!
Lincoln is still waking twice most nights to eat. He actually has not been eating too well ever since I posted last. (I think I jinx us.) I called Children's last Friday to let them know that his feedings had increased for a few days but that they were back down again. At Linc's last Newborn Med visit, his doc asked me to call if his feedings did not improve within 2 weeks. They said they would be happy to see him in clinic if his respiratory status worsens (like increased wheezing which Linc does from time to time or desaturating) or just if I become concerned for any reason. At the time, Lincoln was not extra fussy or showing many other signs of distress besides his feeding volumes decreasing. They did change Linc's reflux med at my request to see if that could help his feedings. They said that the volumes he is taking (about 580 ml per day) should be enough to keep him hydrated, but if things get worse to give them a call.
Since his med change, Lincoln seems to be a little worse, which I expected since it takes a few days for the med to work, but man, has he been fussy! He doesn't seem to have symptoms of a cold or anything, besides some residual coughing and sneezing, which could be reflux and allergies. I'm going to try to give it a few more days before calling the doc again. Plus Linc will be going to see the pediatrician next week for his first Synagis shot, so I was hoping to hold out til then to express my concerns. Since I don't feel this is an emergent situation, I didn't want to make two trips to the doc, for probably nothing. I know it's better to be safe than sorry, and everyone one says to trust your instincts with CDH kinds, but I hate to make a trip for nothing. If things worsen before the ped appointment of course I will be calling / taking him in. I think we have only had one week home without some small complications, especially with feedings.
Overall though, Lincoln is just a different baby compared to when we brought him home 2.5 months ago. He has begun to play more with toys and is just so social. He love to smile and coo at anyone! Even strangers! He does seem to enjoy life when he is feeling well and does seem to be growing quite well overall despite his feeding hiccups. His OT has helped him tremendously with tactile desensitization. Like I said above, he actually enjoys bath time and lotion now. He also doesn't mind a diaper change, and can be put down for up to an hour to play by himself! We are working on sleep habits now and self calming to get back to sleep on his own. He does sleep in his crib in his room at night, but wakes at least twice (sometimes more) and has difficulty getting back to sleep. When Lincoln gets his feedings back up, I will work on getting him through the night without feeding every time he wakes. As of now, though, I gladly take the opportunity to give him some extra calories.
Lincoln was evaluated this week for the Missouri therapy program. I have not heard back about if he qualifies or not. The evaluation was basically a therapist sent to our house by the Missouri program who filled out five questionnaires in different developmental areas. Lincoln slept through most of the visit, so the questionnaires where completed by parent report, which the therapist said was fine. The coordinator is supposed to call me soon to let me know if Linc got in. I started this process just in time. His OT through the private agency was denied by our insurance, so as of now he is only getting physical therapy once per week. It is not too hopeful that Lincoln will be accepted since he is not that far behind developmentally. Which is great. It will be nice though if the MO program could work out though just to help Lincoln along and be sure that he catches up completely.
Friday, October 14, 2011
P.A.T.
Today was our first Parents As Teachers home visit from Mrs. Castello. I have known about the program since before Linc was born and thought that it couldn't hurt to have another person helping Lincoln develop to his full potential. I wasn't sure if starting P.A.T. now was the best idea since Lincoln already gets therapy from the private agency the hospital set us up with, but Mrs. Castello said she would come give me some info and talk and see how things went. I had spoken to her over the phone a little about Lincoln's condition, but I'm still not sure she was prepared for our visit today. She didn't understand at first my requirement of using hand sanitizer and never did end up using it, so I did not allow her to touch Lincoln. I don't think she was prepared to really work with him anyway.
She just watched me handle Lincoln as he fussed for a bit and then calmed down to play with a toy on the floor. She asked a few questions about his care, "Is he on oxygen all the time, like 24 hours a day?" "How long will he be on it?" "He seems fussy. Do you think he will go to sleep if you feed him? I know it's easy to get stuck in a routine." I explained that he is on oxygen until he is able to keep his blood saturated on room air, and that could be until after his first birthday. I also told her that gaining weight is a challenge for him (she had commented on his small size) and that his docs don't want him to eat too frequently because he will burn too many calories. Plus, he has just eaten 30 minutes before. I told her how he is very particular about what he likes as far as touch and motion and that he is just sensitive. It's always difficult getting someone up to speed on Lincoln's life who has never met him before.
Mrs. Castello asked about some of the things he is able to do since I was not able to show her everything and she was also impressed with his progress considering his 2.5 month stay in the hospital. She said that he is doing a lot of things he is supposed to like putting toys in his mouth and holding his feet up while on his back, but that his head control is a bit lagging and that his tone when he is upset seems rigid (which is often seen in preemies). She didn't really have any new recommendations for tummy time and kept saying that she didn't want to tell me something that would go against his doctors wishes, like letting him cry too long during tummy time etc. I reassured her that I totally understood that she is just giving suggestions and I am fully aware that Lincoln's situation is not completely "normal" so his doctors are very involved in his development. She did stress that I need to take time for myself more and try to not worry about getting everything done all the time. She knows it's hard being a full time mom for anyone and Lincoln is requires a little more attention on top of that. She told me not to feel guilty about anything, which is really hard.
Over the phone, Mrs. Castello had recommended I contact the Missouri First Steps program to try to get Lincoln's therapy through them. I told her that they plan to come evaluate Lincoln on Monday next week, so she was giving me some pointers on what to emphasize and said I should let the evaluator know that Linc is enrolled in PAT and to drop her name. Apparently if Lincoln is accepted to the Missouri program, he would need to be enrolled in PAT anyway. That way as he ages and doesn't need therapy anymore, they can transition into just PAT visits. She said she would call to check on us to see if Lincoln is accepted into the Missouri program, and we made an appointment for her to come back in December. She also left some literature for me to read on child development. Overall it was good to get an intro into the program, but I think P.A.T. will definitely be on the back burner for a while.
She just watched me handle Lincoln as he fussed for a bit and then calmed down to play with a toy on the floor. She asked a few questions about his care, "Is he on oxygen all the time, like 24 hours a day?" "How long will he be on it?" "He seems fussy. Do you think he will go to sleep if you feed him? I know it's easy to get stuck in a routine." I explained that he is on oxygen until he is able to keep his blood saturated on room air, and that could be until after his first birthday. I also told her that gaining weight is a challenge for him (she had commented on his small size) and that his docs don't want him to eat too frequently because he will burn too many calories. Plus, he has just eaten 30 minutes before. I told her how he is very particular about what he likes as far as touch and motion and that he is just sensitive. It's always difficult getting someone up to speed on Lincoln's life who has never met him before.
Mrs. Castello asked about some of the things he is able to do since I was not able to show her everything and she was also impressed with his progress considering his 2.5 month stay in the hospital. She said that he is doing a lot of things he is supposed to like putting toys in his mouth and holding his feet up while on his back, but that his head control is a bit lagging and that his tone when he is upset seems rigid (which is often seen in preemies). She didn't really have any new recommendations for tummy time and kept saying that she didn't want to tell me something that would go against his doctors wishes, like letting him cry too long during tummy time etc. I reassured her that I totally understood that she is just giving suggestions and I am fully aware that Lincoln's situation is not completely "normal" so his doctors are very involved in his development. She did stress that I need to take time for myself more and try to not worry about getting everything done all the time. She knows it's hard being a full time mom for anyone and Lincoln is requires a little more attention on top of that. She told me not to feel guilty about anything, which is really hard.
Over the phone, Mrs. Castello had recommended I contact the Missouri First Steps program to try to get Lincoln's therapy through them. I told her that they plan to come evaluate Lincoln on Monday next week, so she was giving me some pointers on what to emphasize and said I should let the evaluator know that Linc is enrolled in PAT and to drop her name. Apparently if Lincoln is accepted to the Missouri program, he would need to be enrolled in PAT anyway. That way as he ages and doesn't need therapy anymore, they can transition into just PAT visits. She said she would call to check on us to see if Lincoln is accepted into the Missouri program, and we made an appointment for her to come back in December. She also left some literature for me to read on child development. Overall it was good to get an intro into the program, but I think P.A.T. will definitely be on the back burner for a while.
RSV Season
I know I already posted about flu season, but I wanted to give a bit more info on RSV and why we're being so cautious this season with Lincoln. I want every one to understand that I am not trying to be overprotective or rude to guests in our home this season. Here is a post that almost all CDH parent have provided to their readers...
The doctor's office is working on getting approval (insurance) for the synagis antibody shots to prevent Lincoln from contracting RSV this season. He will get one shot per month through the season. Linc is too young to get the flu shot this year (6 months and up only.)
Some information on RSV and why we're being vigilant to protect Lincoln:
Nearly every child has had the RSV virus at least once by age two. For babies born full-term and without complications, it is typically a bad cold. But, the highest risk factors for contracting RSV and developing complications like pneumonia, bronchiolitis, and other sometimes fatal complications are: being born premature, being born with a lung condition, or being born with a heart condition. Lincoln is definetly at a high risk. Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping Lincoln home and safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands, and up to twelve hours on objects. If Lincoln contracts RSV he will likely be hospitalized. Last year alone, over 125,000 infants in the US were hospitalized due to complications from contracting RSV.
At our house, please be prepared to take off your shoes and wash your hands upon entering our home through the RSV season. Use the antibacterial hand gel frequently also. Please refrain from coming over if you are currently experiencing any illness symptoms, or have been in close contact with anyone showing symptoms. Also, please refrain from bringing small children into our home, as they are most likely to spread RSV.
Please do not let these precautions frighten you or stop you from making contact with our family. They are simple precautions that every loving parent with a fighter like ours must take during this season.
THANKS!
The doctor's office is working on getting approval (insurance) for the synagis antibody shots to prevent Lincoln from contracting RSV this season. He will get one shot per month through the season. Linc is too young to get the flu shot this year (6 months and up only.)
Some information on RSV and why we're being vigilant to protect Lincoln:
Nearly every child has had the RSV virus at least once by age two. For babies born full-term and without complications, it is typically a bad cold. But, the highest risk factors for contracting RSV and developing complications like pneumonia, bronchiolitis, and other sometimes fatal complications are: being born premature, being born with a lung condition, or being born with a heart condition. Lincoln is definetly at a high risk. Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping Lincoln home and safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands, and up to twelve hours on objects. If Lincoln contracts RSV he will likely be hospitalized. Last year alone, over 125,000 infants in the US were hospitalized due to complications from contracting RSV.
At our house, please be prepared to take off your shoes and wash your hands upon entering our home through the RSV season. Use the antibacterial hand gel frequently also. Please refrain from coming over if you are currently experiencing any illness symptoms, or have been in close contact with anyone showing symptoms. Also, please refrain from bringing small children into our home, as they are most likely to spread RSV.
Please do not let these precautions frighten you or stop you from making contact with our family. They are simple precautions that every loving parent with a fighter like ours must take during this season.
THANKS!
A Week of Accomplishments!
This past week Lincoln has been doing great! Three major accomplishments I want to make note of are...
1. Lincoln is finally off of all narcotics!! This past Monday was Lincoln's last dose of morphine. He had been on a very small amount (0.1 ml every 4 hours) since about 2 months of age. He was initially put on morphine to prevent withdrawal of his discontinued Fentanyl drip while still in the hospital. The plan was to wean Lincoln of the morphine within 10 days, but he became dependent on it very quickly and had trouble weaning while he was still admitted. After three failed attempts, his doctor decided to send Lincoln home on the morphine and let him out-grow the dose. Over the past month I weaned his dose to every 12 hours, then once per day, then once every other day, then once every three days. This week Lincoln has been a bit more irritable, but he hasn't shown any major signs of withdrawal so I pushed ahead with the wean. I'm so proud of him! He kicked his habit! I will still be watching him closely for about a week before I get rid of the morphine, just in case!
2. Lincoln has been doing much better with his feedings. ( A good sign that he is feeling better.) Yesterday he ate 830 mls! (His goal is about 840.) Aside from his short growth spurt just before his oxygen wean, Lincoln has never eaten so much! I am hopeful that Linc will continue to feel well and eat well. If he keeps it up, another oxygen wean will be in the near future!
3. Lincoln is now able to roll from tummy to back! The other day I was doing tummy time with Lincoln (which he still absolutely hates!) and he was so angry that he pushed himself all the way up and he was so stiff that he just rolled over onto his back! I thought it may have been a one time thing, but he has continued to do this at several tummy time sessions. He only does it one way so far, to the right, but I am ecstatic none the less. Lincoln is struggling with tummy time and is beginning to fall behind on his achievements in therapy. Tummy time is the major hurdle to conquer in therapy since it leads to all other milestones, so it is just wonderful to see Lincoln accomplish rolling! It was not even on his list yet of goals for physical therapy, but his therapist quickly made note of his new ability! He was not able to show her yesterday, but she was able to see him roll to his side to reach a toy. Another big step for my little guy just this week!
1. Lincoln is finally off of all narcotics!! This past Monday was Lincoln's last dose of morphine. He had been on a very small amount (0.1 ml every 4 hours) since about 2 months of age. He was initially put on morphine to prevent withdrawal of his discontinued Fentanyl drip while still in the hospital. The plan was to wean Lincoln of the morphine within 10 days, but he became dependent on it very quickly and had trouble weaning while he was still admitted. After three failed attempts, his doctor decided to send Lincoln home on the morphine and let him out-grow the dose. Over the past month I weaned his dose to every 12 hours, then once per day, then once every other day, then once every three days. This week Lincoln has been a bit more irritable, but he hasn't shown any major signs of withdrawal so I pushed ahead with the wean. I'm so proud of him! He kicked his habit! I will still be watching him closely for about a week before I get rid of the morphine, just in case!
3. Lincoln is now able to roll from tummy to back! The other day I was doing tummy time with Lincoln (which he still absolutely hates!) and he was so angry that he pushed himself all the way up and he was so stiff that he just rolled over onto his back! I thought it may have been a one time thing, but he has continued to do this at several tummy time sessions. He only does it one way so far, to the right, but I am ecstatic none the less. Lincoln is struggling with tummy time and is beginning to fall behind on his achievements in therapy. Tummy time is the major hurdle to conquer in therapy since it leads to all other milestones, so it is just wonderful to see Lincoln accomplish rolling! It was not even on his list yet of goals for physical therapy, but his therapist quickly made note of his new ability! He was not able to show her yesterday, but she was able to see him roll to his side to reach a toy. Another big step for my little guy just this week!
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