Pages

Wednesday, February 29, 2012

Someone's Not Hungry

Lincoln's feedings have been up and down lately. It all started the day his meds changed, Feb 17th, and we've been on the roller coaster ever since. Between the medicine change, teething, weaning Os, and now a cold, Lincoln's feedings have been anywhere from 530ml to 720 ml (which is the goal). Because of this, I have been weighing him in just his diaper every morning and calling SLCH neonatology to report every 2-3 days. From the 20th to this past weekend, Lincoln had lost about half a pound. Good news is that over the weekend he was able to bring his weight up by about 3 oz. So at least that is promising that he was able to gain a little.

Neonatology wants me to offer a 5th feeding at night if Lincoln's volumes are under 600ml for the day, which means I will be waking him to eat. I would rather do this, though, than go up on his formula concentration and risk dehydration or kidney issues.

I'm really having trouble determining what is causing Lincoln to not eat. He has been retching sometimes by just a few drops of formula on his lips, and today he had 2 bites of veggie puree at lunch and puked in the highchair (totally not like him). Other times he just sucks down the bottle, especially when he is sleepy. I just keep coming back to the conclusion that there must be several things happening and that's why I see him fluctuate so much. Hopefully, things turn around and his feedings get easier. Most of all I hope I'm not missing something, but that's why I'm staying in such close contact with the hospital.

On a side note - Lincoln is on 0.2 liters and breathing fine. I can see that he felt this last wean though. His sats are good, but when he is playing he gets tired more easily and his color is not as rosey as before. He's not turning blue, but I can see a difference. So I may need to wait longer than normal before the next wean, to make sure he is comfortable. He will let me know when he is ready.

Tuesday, February 28, 2012

Saturday, February 25, 2012

Look out! 9 Month Baby!

Here he is, folks. Lincoln, at 9 months old.


you can really see Lincoln's eye color in this one


He's got some hair!

It's official. I am completely head-over-heels for my son! I've had so much fun this past month with Lincoln.

Here is my top ten list of favorite things Lincoln started doing this month:
1. Sleeping through the night! (Thank you Lincoln!)
2. Reaching out to be picked up.
3. Holding on to me when I carry him and giving great hugs!
4. Enjoying Tummy Time and playing with toys while on his tummy.
5. Feeding himself with bread and crackers.
6. Mimicking my expression when I stick my tongue out, and, of course, reciprocating smiles with that big gummy grin!
7. Using more sounds when babbling.
8. Shrieking with joy when excited!
9. Pulling up and bouncing when standing.
10. Beginning to understand directions and pointing.

Some of the things below have already been said in previous posts this month, but I wanted to summarize Lincoln at 9 months old:

Measurements (as of 2/24 at the pediatrician) -
weight 15lbs 15oz (<3%), length 26.75" (10%), HC 45.8cm (70%!!)
Even though Lincoln's weight isn't moving up much, his head is growing and growing, which is great!

Lincoln is wearing most of his 9 month clothes now, but can still fit some 6 month clothes.
Home therapies -
Things have been going really well with therapy. Lincoln and I both really like our therapists/nutritionist through MO First Steps Program. Currently, physical therapy comes twice a month and occupational therapy and nutrition come once a month. Lately we have been working on teaching Lincoln to sit up without assistance and to reach out to for toys and to get into the crawling position. We have also been doing a lot of sensory tactile playtime, like sensory bins and textures. Lincoln is making great progress and is enjoying himself, too. Lincoln's nutritionist helps me to meal plan and measures Lincoln to help monitor his growth. (Between doc visits and home visits, Lincoln is measured about 3x per month.)

Oxygen status -
Lincoln is still weaning and has been doing great. He is currently on 0.3 liters. Alright, Linc!

Medicines -
Lincoln is off of all oral meds, except a multi vitamin! He is currently taking two inhaled meds: Pulmicort and Albuterol, to control his asthma wheeze and cough. So far I have not seen a huge improvement in Lincoln's wheeze since starting the Pulmicort, but it can take a few weeks to see full results. Lincoln has gotten quite used to the nebulizer and usually doesn't cry anymore. It has become our time to read special books or sing songs. His favorite songs are "Wheels on the Bus" and "ABCs" by the way.

Feedings -
Lincoln is eating three solids meals per day (breakfast, lunch, and dinner - only totaling about 4 oz of food). He has started enjoying toast and crackers. He likes puffs too, but he can't pick them up yet on his own so I hand feed him those sometimes. He really does enjoy feeding himself. I still add olive oil to his solids for a boost of fat. I did back up a bit this month with making his purees thinner again and he has started eating more. Recent new foods: whole milk yogurt(likes), cauliflower(dislikes), beef(ok), chicken(likes with fruit), turkey(likes), prunes(loves), plums(likes), cherries(likes), egg yolk (loves). Lincoln has been drinking his bottles much better the past few days, too. I think he just needed time to adjust to his new meds.

Every thing else -

Lincoln has been teething quite a bit this month. His drool is out of control! His two bottom teeth have gotten even bigger and his two top teeth on the sides (lateral incisors) have broken through his gums already. Lincoln also doesn't mind having his teeth brushed. He also enjoys drinking water from a regular cup after Pulmicort treatments. (Rinsing your mouth is required.)

Linc has been sleeping through the night! (when his teeth are not bothering him.) He sleeps about 11 hours at night and takes two naps per day for about 3 hours total. I worked with Lincoln a lot over this past month and am now able to get Lincoln to go to sleep with just patting his bottom while he is in his crib with a binky! He usually wakes two or three times before 10 pm for his bink and a pat or a blanket, but then he usually sleeps until 5:30 or 6am! It's so wonderful, for every one in the house. It's just amazing to not have to rock/bounce him to get him to calm! I'm so glad those days are gone.

Lincoln is sitting really well on his own. He has become SO active the past week. He has begun to roll all over when we play on the bed, but he doesn't roll much on the floor. He will do plenty of tummy time on the floor though. He also does great standing and holding on. Linc is pulling up on everything! He also rocks when you put him on all fours. It won't be long until he is mobile!

Lincoln's neonatologist honored Lincoln by featuring him this month in her presentation for a conference to educate new nurses and providers about CDH. He is definitely a miracle and I am happy she was able to use his story to help spread awareness and knowledge about treatments for Congenital Diaphragmatic Hernia. The more people that know, the more donations and support we can get for research to improve outcomes for future babies! Breath of Hope is a great place to visit if you are interested in donating or just learning more about CDH.





Almost there!
 


Tuesday, February 21, 2012

Os 0.4

Lincoln's oxygen is at 0.4 liters this morning! He's doing great with breathing so I went ahead and weaned this morning, although Linc has not been drinking his bottles well. I think it is totally due to his medicine changes last week (stopping Prevacid and starting Pulmicort). Linc has been very active and not been acting too tired to drink. He just seems not very interested/hungry. His doctor is aware of the drop in his volume intake and I am going to speak to Lincoln's nutritionist about his minimum caloric needs. We are giving him a few days to adjust before making any changes. If he drinks even less with this oxygen wean, I can always turn him back up. Hopefully he gets hungry soon.

Monday, February 20, 2012

Next Surgery Date

I was able to schedule Lincoln's next surgery with Urology today and it will be on May 2ndMay 16th. Lincoln's urologist wants assistance from another surgeon since it is a complicated procedure and that was the first date that they would both be in the OR. Works for us. As with the last outpatient surgery, we won't be told the time until the day before surgery, as well as fasting instructions. The office did tell me that Lincoln would be first for the day though, since he required two surgeons.

Saturday, February 18, 2012

Come On Spring!



There have been a couple of nice days of weather these past few weeks and I know I have been hearing the birds sing outside my windows in the mornings again. Spring is coming and Linc and I cannot wait! It has been nice to be able to get out and take walks when the weather permits. 6 more weeks left of RSV season. After that, I don't have to be overly cautious anymore and Linc can go out more. Don't get me wrong. I will still be very cautious, as Lincoln's lungs are still fragile, but the most feared bug won't be a real threat anymore. Lincoln likes going places, too, and I know I have cabin fever by now! Come on Spring!

Friday it was about 65 degrees out and sunny, so I took Lincoln out in the yard to feel the grass for the first time. It is still all dead and crunchy, so it doesn't feel all that great. It was fun to watch his reaction though. He would reach down for a handful and then quickly wipe his hand on his thigh and give a little squirm! Then I decided to take his socks off and that got him squirming, too. He didn't cry, but he wasn't excited either.

  

No socks..what???   

Lincoln was squinting from the sunlight even though we weren't facing the sun. He's just not used to being outside much. This picture is just TOO CUTE!




Friday, February 17, 2012

Feb trip to SLCH - Urology and Newborn Med

Linc actually had two trips to SLCH this month, due to his docs not being able to coordinate appointments on the same day, which they always try to do. It really was no big deal since I'm home with Lincoln and he is doing so great in the car these days. (Yay.) It was fine to make two trips. Dan came with us for the first trip and the second was just Lincoln and me.

Feb 10th - Urology
This was our initial visit with the urologist about Linc's hypospadias. I met her briefly in the NICU when she was called in to take a look at Linc. We never really talked much about what Lincoln would require later on, though. I just knew it was something we didn't need to worry about at the time. This appointment was a consult where the urologist looked Lincoln over, now that he is bigger. Then she explained what she thinks he will need as far as surgeries.

I will spare all of you the details, since this bog is about CDH and not hypospadias. I will just say that the doctor said that, conservatively, Lincoln will need three surgeries to correct every thing, each 6 months apart. So that puts everything at over a year from now being complete, hopefully. (If anyone would like more details about the three surgeries, other parents of boys with hypospadias or family/friends, you can email me.) I knew that Linc's condition was pretty severe, but I was still hoping for only one more surgery. Oh, well. Lincoln needs what he needs and I know they will do a great job at Children's. I just want every thing done by the time we should start potty training!

When we returned on the 16th for Newborn Medicine Clinic, Lincoln had an xray done to make sure there will be no surprises internally when he first surgery happens. This was not your normal 30 second xray and Lincoln got tired of being held down after a few minutes. The whole test took about 15 minutes and Linc screamed the whole time, despite all of the cool stickers on the xray machine and the light show the technician put on for him! Poor baby. Happily, though, every thing looked normal on the xray.

I haven't scheduled Lincoln's first surgery yet, (I'm waiting on the doc's office to call me back) but it will be after March 21st. That is when Dan's vacation get replenished for the year and obviously it's important that he be there for his son. The plan for the surgeries will be similar to Lincoln's inguinal hernia repairs - hopefully outpatient, coming home the same day. Of course the doctors will monitor Lincoln's respiratory status post surgery and will keep him overnight if he is having trouble getting back to his baseline after being under anesthesia. Since these will be Lincoln's fifth, sixth, and seventh surgeries, no one suspects he will have any problems.

Feb 16th - Newborn Medicine
After Lincoln's xray for the urologist, we headed over to the Newborn Medicine clinic for a check up. The doctor and nurse were so happy to see Lincoln doing so well, and on 0.5 liters! This is a big accomplishment for Lincoln to be on half a liter. It has been so difficult for him to wean. Hooray, Lincoln! I am to continue turning Lincoln's oxygen down my one tenth every week as long as he does well. See this post. If Lincoln is not weaned off before his next surgery, I should wait two weeks or so afterward to start weaning again.

As you all have read, Lincoln has been having increased wheezing for about two months. Lincoln has been needing three abuterol nebulizer treatments per day lately. (It is very common for CDH patients to have asthma for the first year or two.) Since Linc has become more active, he has had more asthma flare ups. He has what is called exercise asthma which is induced by physical activity or stress. Lincoln is only going to get more active as he gets older. So, to help cut back on some albuterol treatments, the doctor prescribed an inhaled steroid for Lincoln to take twice per day. Hopefully this will stop his wheezing cycles throughout the day and make him feel more comfortable and he will not be held back when he is active. It will probably take a few weeks for the steroid to start working, and I should see that Lincoln needs less albuterol.

Sildenafil has not been proven to benefit CDH patients, but it is thought to help with pulmonary hypertension. Usually it is a replacement for nitric oxide, which is inhaled. Lincoln was on nitric in the NICU while he was on the vent and started sildenafil when his nitric was stopped. Since Lincoln's pulmonary hypertension seemed to be resolved on his last echocardiogram, I weaned him over the last month. Lincoln is now completely off of sildenafil! His last dose was a week ago and he is breathing just fine without it.

Lincoln has been doing great with feedings and hasn't shown any signs of reflux for a while now (arching his back, refusing food, and painful spitting). He also absolutely hates taking his Prevacid, even with flavoring added. Because of this, the doc said it was alright if I want to try stopping the Prevacid and see how Lincoln does! This means Lincoln is no longer on any oral meds relating to CDH! Of course he now has two inhaled meds, but that's ok. Lincoln now only takes a multivitamin drop, which he will continue through age two, when he can take chewables. He has come so far!

Lincoln measured 26.25" long, 15 lbs 14 oz, and HC of 45.5cm. I'm not sure if you noticed, but if you look at Linc's measurements for 7 and 8th month, he only gained 4 oz. Then from month 8 until now (almost 9 months) he gained 6 oz. That's less than one pound in two months. Not great. Granted, these measurements were on different scales, and I usually try to focus on just one scale for comparison. Never the less, Lincoln's dietitian through MO First Steps had noticed this small growth at the beginning of this month using her scale and suggested increasing Lincolns formula concentration to 27kcal to give him a boost. I did not want to make any changes without consulting SLCH so Lincoln is still on 24 kcal Enfacare. I have been pushing the olive oil, yogurt and avocado, though, for some extra fats.

Lincoln's neonatologist was happy with his growth this visit (his regular pediatrician was also happy at our last visit), stating a 12 gm/day gain this past month. I guess it just depends on the scale and when you weigh Lincoln. The doc also pointed out that Lincoln only has three more months on formula. She thinks changing things isn't necessary since Lincoln is still gaining weight and he is happy and active. He's getting what he needs.

Lincoln's growing up and doing well, so we are actually going to skip a month at clinic! We don't return for Newborn Medicine or Surgery clinics until April. At that time, Lincoln will also have a hearing test and a chest xray to check for reherniation of his diaphragm.

Tummy Time Update

Over the past few weeks, Lincoln has really made progress with Tummy Time. He is now enjoying at least three sessions a day for several minutes at a time. The major difference being that he is happy while on his tummy now! At least until he gets tired and rolls over. Sometimes he doesn't even roll because he is too tired and just cries to be flipped over. He has started to do full on "push-ups" when on his tummy and is rocking when I put him into the crawling position. I really think concentrating on the crawling position, like his therapist recommended, instead of just always putting him down directly onto his tummy is what brought Linc around to the idea. Just today he was able to reach for a toy and play with it during tummy time! We just might see a mobile Lincoln really soon! Here are some shots to capture his success! (And his major drool!)

An actual SMILE while prone!

Look at that head extension!

Tuesday, February 14, 2012

Os Wean

Well, we made the goal of 0.6 LPM by Lincoln's Feb clinic appt. His appt is Thursday, and this morning I was able to turn down Lincoln's oxygen to 0.5 liters! He is breathing comfortably so far, and I don't suspect that he will have any trouble. (Although I do have a bit of a sore throat and am doing my best to keep Linc from getting it! I swear every time we go out for an appt, one of us catches something! That's the season though.) As long as Linc continues to keep his saturation above 97 (the occasional dip to 94 is ok), has the energy to drink his bottles, and he is breathing comfortably (not retracting or having rapid breathing, nostril flaring, etc.), I will turn down his Os by 1/10th every week. Hopefully he goes all the way! But it is hard this time of year. I'm excited by the thought of having Lincoln free from his tether! He is pulling his tape/line off of his face several times a day now, so I know he is excited, too! I'll keep you all updated!

Monday, February 13, 2012

Macaroni Means FUN

Lincoln's OT made a suggestion last week that I thought was great. She said to put various things in tubs for Lincoln to feel and get exposure to textures with his hands and feet. I always thought of doing this sort of thing for toddlers, but Lincoln had a blast. I put dry beans, elbow macaroni, rice, and broken spaghetti into separate containers. Elbow macaroni was Lincoln's favorite.




 Linc likes to bang the bowl, and the noddles fly!


 Beans are just ok.

Bye-Bye Baby Bath

Linc has been sitting pretty well and was getting too big for the baby bath. So, this week we said, "Bye-bye" and upgraded to the full-size tub. Lincoln really enjoyed his bath. He especially liked fishing for the blue octopus toy. My little boy is growing up!