This post became so long that I have highlighted the main points for those of you who would like to just skim through.
Lincoln had three appointments at St. Louis Children's Hospital on this 11 month birthday this past Thursday - chest x-ray, hearing test, and CDH Clinic follow-up. We have gone for several follow-up visits to SLCH since Lincoln was discharged last August, but I have never taken any pictures during our trips. So, this trip, in honor of Linc's 11 months with us, I decided to take a few pictures to document what a trip to clinic is like for Lincoln. It may look like the hospital was empty except for Lincoln, but that was far from the case. I made sure to only take a shot if there wasn't anyone else in the frame, since I don't have their permission to post them on Lincoln's blog and medical privacy is important. I actually couldn't get a shot of the waiting room for Newborn Medicine (CDH Clinic) due to it being so crowded.
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| 11 Months Old! What a big boy! |
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| The image is flipped since I took it in my rearview mirror. It's hard to take good pictures of the outside of a building while you are driving! |
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| I LOVE these metal zoo animal sculptures outside of the hospital. Can you make out the elephant and giraffe? |
Lincoln got in a quick nap on the car ride to the hospital and woke up just in time for his x-ray. The Joe Buck Imaging Center is one of my favorite places at SLCH. It is all sports themed, with a lot of Cardinals baseball items. I didn't get a picture of my favorite artwork there, though. In the hallway, there are pictures of various sports scenes, like a hockey players foot with an ice skate, and the image changes to the x-ray form as you walk by! It is so cool! ( I know I sound like a 12 year old boy but it's neat!)
Lincoln did a great job for his chest x-ray. He always gets two, one straight on, and one with him laying on his left side. I am able to stand on the opposite side from the technician and "help" hold Lincoln in place. Lincoln was okay with the first, straight on x-ray, but he got a bit upset when he had to be held down on his side for the second. It's a good thing the technicians are so wonderful so both images only took about 10 seconds!
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| This picture was taken as I was getting on my lead apron. Lincoln also gets a tiny lead shield just before the x-ray is taken. Strangely Linc's legs look long here, which is not the case! |
We had some time in between Lincoln's xray and his hearing test, so we went upstairs to the NICU to visit some of our favorite nurses! It's always nice to see them and they love to see how big Lincoln has gotten. This trip was really special since Lincoln was off of oxygen!
Next, we headed up to Audiology for Lincoln's hearing test. Lincoln passed his newborn hearing screening just before discharge in August and this was just a routine follow-up to check on Linc's ears. Kids that are on ECMO, as well as a lot of antibiotics, can sometimes experience hearing loss, both of which pertain to Lincoln. Kids that were on ECMO sometimes see the hearing loss progress at later ages, so serial screenings are recommended. I had no concerns about Lincoln's hearing going into the test, though, as Lincoln doesn't show any signs at home of difficulty hearing.
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| Lincoln, enjoying his snack of banana and cheddar cheese with water. His favorite! |
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| The waiting room for Audiology was really pretty. The entire ceiling was a skylight, so the room was just flooded with sunlight! |
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| Fun toys on the walls, too! |
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| Lincoln especially enjoyed watching a little boy a few feet away. |
The hearing test was pretty bizarre. The audiologist first took a general look into Lincoln's ears and then she inserted a small measuring device in each ear to measure Lincoln's eardrum movement. The test of his ear drum movement showed restricted movement and was declared below average as well. The audiologist recommended having Lincoln's doctor look in his ears to see is he has fluid retention (which he did, probably a result of seasonal allergies) and this would explain the result of the test and are nothing to worry about.
Then we were directed into a vault-like padded room where I sat in a chair in the middle of the room with Lincoln on my lap. The test consisted of the audiologist speaking to and making noises at Lincoln through speakers as she sat behind a tinted glass window outside. There were also tinted glass boxes to the side of Lincoln and I that would light up to display moving toys inside once a sound was made through the speaker. In between the noises, a second audiologist, who was in the room with us, would distract Lincoln away from the speaker with simple toys.
Sounds a little crazy, huh? I think that Lincoln agreed. While he scored average for hearing speech, he scored as "minimal response level' for the sounds (which sounded mostly like a vacuum cleaner). Basically, Lincoln was not "conditioning" or "training" to the test and didn't give responses consistently to the sounds. So he scored below average for the sounds part of the test. It is recommended that he repeat the test in 2-3 months to see if he improves. So we will return in June or July to try again.
Lastly, we headed over to Newborn Medicine for the new CDH Clinic. The CDH Clinic is the same as our previous Newborn Medicine visits, only now Lincoln's surgeon attends as well. This way Lincoln can be evaluated from all perspectives and the doctors can talk. It gives a more well rounded treatment and opens communication. It was really convenient to see both doctors at once!
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| waiting for Dr. N and Dr. B! |
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| the table and paper have nice textures to feel |
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| Lincoln is happy that the nurse with the blood pressure cuff has left the room! |
First, Dr. B (surgeon) told me that Lincoln's x-ray looks good and shows no signs of reherniation. She reminded me that reherniation could happen as late as 2 years old or older, but that since Linc is right-sided, his liver will most likely keep his bowel down in the event of reherniation. If Lincoln ever did reherniate, she said she would only repair it if it was causing him issues, but so far, he looks good from that stand point. She did say that Lincoln's right lung (bad lung) is fully inflated. Actually that it is over inflated, meaning it is retaining air and not functioning properly. Dr. B said that over inflated lungs are often seen in patients with asthma and wheeze, which Lincoln has both. It is nothing to worry about though, as Lincoln is very young and his lungs will repair themselves as Lincoln grows. Also, as his wheeze improves with better maintenance, his lungs will become more healthy. Right now he is able to oxygenate his body on room air and has no restrictions with activity, so he's doing very well! Dr. B also looked at Lincoln's several scars and commented that they all look good. She will still follow-up with Lincoln through the CDH clinic and she will review his xrays for reherniation in the future.
Next, Dr. N (neonatologist) talked about Lincoln's growth, or lack there of. Lincoln's measurements at 11 months are:
weight = 15lbs 14oz (<3% and no change from 9 months old)
length = 27.25 inches (3%)
HC = I actually didn't catch the number but Lincoln's head is still a good size at 70%!
I told the docs about Lincoln' reluctance to drink milk (Pediasure, Enfacare, or whole milk) and how I have to dreamfeed him to get any type of volume each day, which is still only about 13oz. Lincoln is happy to eat table foods, and is eating appropriate portions of those. He just is a little short on his fat intake because of his lack of interest in milk. He will occasionally drink a little milk from his cup, but usually he will only drink water. Not even juice! It's good that he is drinking water, since his liquid volume is so low, but water has no calories!
So, Dr. N called in the dietician, who brought in samples of supplements for me to try with Lincoln. One is called DUOCAL and is a powder form of carbs and fat that I can add to Lincoln's moist table food, like applesauce that he loves. It adds 42 calories per scoop (tbsp)! The other is another total nutrition drink for me to switch Lincoln to, yet again, called Kids Essentials. He's actually not even all the way switched off of formula onto Pediasure, and we are switching again. The new stuff has 1.5 calories per ml (Pediasure has 1 per ml). Lincoln tried a little of the vanilla in the office and didn't totally hate it. The dietician recommended starting one or the other first to make sure Lincoln tolerates them. Otherwise we wouldn't know which was causing him trouble. Lincoln has been doing great so far on 2 tbsp of DUOCAL per day. I will give hi some time and them start the other formula. Hopefully he will start to pack on the pounds! Dr. N also said that a feeding evaluation may shine some light on Lincoln's behavior, but she suspects it is just due to Lincoln becoming more independent and wanting to eat real food. We may do an evaluation in a few weeks.
Then we talked about Lincoln's breathing. Both doctors were so happy to see Lincoln off of oxygen and looking so good. Lincoln has been completely off since Easter (Apr 8th) and he has shown no signs of restricted activity. Although he is off now, I understand that he may need to go back on if he catches a repiratory infection. This could be the case for some time as Lincoln's lungs get stronger and bigger. I have seen Lincoln's wheeze increase to needing 5 albuterol treatments per day sometimes, and when I check the pollen and mold counts, they correlate with Lincoln's need for albuterol. Although Lincoln is on an inhaled steroid, this does not help with allergies, which affect the upper airway. Dr. N agreed and I agreed that Lincoln's been experiencing seasonal allergies the past few weeks. This week Lincoln had been breathing easier, and only needing one albuterol treatment in the morning. So Dr. N said that she will call in an allergy medicine, like Zyrtec, if and when I feel like Lincoln's allergies are getting the best of him. Since he looks good this week, we decided not to start a new med right now. Lincoln will continue to get his inhaled steroid, Pulmicort, once per day, and albuterol as needed every 4-6 hours.
I told the docs how therapies are going well and Lincoln is on target for physical skills. He is now crawling full speed all around the house and cruising on the couch and chairs. He has even begun to stand on his own, working on his balance, and he likes to "walk" around the house holding your hands.
Lincoln is a talker these days. He is babbling mamama, and dadada, but they are not yet labels for mommy or daddy. Linc actually has said his first associative phrases - "Nah nah" (Neela, our cat) and softly "Keh keh" (kitty cat). These are sounds he makes when babbling, too, but he definitely says them in reference to Neela when he sees her!
After a long day, we finally headed home, and Lincoln was asleep within 5 minute of our drive. Lincoln's next appointment is scheduled for surgery with Urology on May 16th. We hope for the surgery to be outpatient, but it depends on Lincoln's respiratory status after being under anesthesia. We don't have our next appointment set up for CDH Clinic just yet, but Dr. N said she would like to see Lincoln in about a month or so mostly to monitor his weight. We will touch base during his speech (feeding) evaluation, or surgery.
