Wednesday, February 12, 2014

Pod Jumping

We spent our day pod jumping.  In other words, we spent our day at Children's Hospital in Pittsburgh, running from one "pod" (clinic) to the other. 

Liam had three big appointments lined up, which made for a very long day.  We love the hospital and all the doctors that have taken care of Liam, but today didn't go as planned.

We arrived early, like we were supposed to.  Parking was rough, but we found a spot, registered, and made our way to the cardiology waiting room quickly.  The minutes ticked by and everyone was called in but us.  A baby was lifeflighted in and we overheard a nurse say that one of the doctors was running 4 patients behind.  We tried to be patient and understanding, assuming it was Liam's doctor running behind. 

After almost an hour of waiting, Grant asked the nurse what was going on.  Apparently, the nurses forgot to add him to the round of patients and he was just overlooked.  We finally made it to an exam room an hour and fifteen minutes after our appointment time.  The nurses apologized and gave us a parking pass to make up for it.

Liam was weighed and measured.  10 lbs 6 oz and 26 inches long.  Then we waited some more, because the doctor was doing a test on another patient.  

By the time the doctor made it into the room, it was 2 hours after our appointment time, and we only had a half hour before our next appointment.  He was extremely nice and we were very happy with what he told us.  Liam's heart sounded great and there was no evidence of a murmur, which usually means all holes are closed.

Liam was supposed to get an EKG to check the tag in his artery, but there wasn't enough time.  We have to get that test done another day, and as long as everything still looks normal, we will only have to see the cardiologist once a year for a routine EKG.

Surprisingly, we made it to the next pod with 5 minutes to spare!  Unfortunately, we didn't have any time between appointments as planned, so we couldn't get anything to eat or drink.

This appointment was with his doctor at the Down Syndrome Clinic.  We absolutely love the staff, and once again, it was a wonderful experience.

Liam's doctor went over all his history since the last visit, and did a thorough exam. Liam slept in Grant's arms for the first half of the appointment,but woke up for the exam.  He showed off his big smile and all his skills. Liam's doctor was very impressed with how well Liam is doing, and commented on how smart, aware, and social he is. His weight is still low, but he was pleased to see a consistent gaining pattern.

He recommended we talk to his ENT about a possible sleep study and checking his adenoids. He also suggested we add PT in addition to the OT and Nutrition services we get through Early Intervention in our home. 

We were told to keep up the great work, and sent on our way to the last appointment of the day, with the feeding team.

We were called in almost immediately, but as soon as we walked into the room, I knew it was going to be a bad experience. 

The feeding team consisted of a pediatrician, an OT, a nutritionist, and a speech therapist.  They introduced themselves and asked a bunch of questions.  Liam is finally gaining weight consistently and eating really well, but they wanted to make sure there wasn't an underlying issue with his smaller size.

Just before Liam turned 5 months old, he began fighting his supplemental bottle.  At 5 months old, we introduced solids.  We worked closely with his OT and pediatrician to figure out a way to get the formula into him, so he began to eat organic cereal mixed with high calorie formula twice a day.  He began to gain weight faster than he ever had before!

Our personal OT used to work at the hospital and warned us ahead of time of everything they would say.  She was right!  She told us that we could decline the appointment and I really wish we had.

From the moment the pediatrician started speaking, I felt attacked.  I was stunned, because our previous experience with a different feeding team in October was very positive.

I explained that he was completely breastfed, but they wanted to observe a bottle feeding first.  His Laryngomalacia is only noticeable when he bottle feeds, and as soon as they heard his breathing and saw him fighting the bottle, they insisted he was aspirating.  I reminded them that he had swallow studies done and the results were normal.

Next, they insisted that he needed surgery for the Laryngomalacia NOW because that was causing the poor coordination of breathing, sucking, and swallowing.  About 90% of patients with Laryngomalacia grow out of it without surgery, usually by the age of 2.  His ENT will determine that one, but it is the absolute last resort!

We moved on to breastfeeding, and Liam immediately latched on, and settled into a quiet, calm, perfect feeding.  They insisted he wasn't getting enough breastmilk and that he was burning too many calories while doing so.  They also informed me that any baby that nurses for more than a half hour is feeding improperly. 

Once again, they insisted on forcing the bottle on him, and he continued to fight them. They tried different flow nipples.  They thickened the formula to the point of it being sludge, and he still wouldn't drink from the bottle.

The pediatrician finally told us that I can only breastfeed for 15 minutes because he is burning too many calories and that I will need to top him off with a bottle of thickened formula after he nurses.  We are also to stop giving him solids until he's 9 months old.

The nutritionist was the only helpful one, and offered her advice on how to make his cereal more caloric,and the pediatrician shot her down. I could tell that she was irritated!

At that point, I was ready to walk out and Grant was getting very frustrated.  I'm not a doctor, obviously, but I don't understand how he's going to burn more calories calmly breastfeeding than he is by battling a bottle feeding. He always had trouble with bottle feedings, and I think it's odd that he finally gained more weight AFTER he stopped drinking from the bottle!  He literally will not suck from the bottle so how am I supposed to feed him that way?!?

After all this, they informed us that we didn't need to meet with them again, and to just do everything they said.  I started gathering our stuff before the session even ended, and happily left that room.  It was a complete waste of time, and I felt like they were struggling to find something wrong with him.  He simply can't be skinny, even though he's healthy and growing!

Grant and I walked out those doors and decided to keep following the feeding plan created for him by our pediatrician and OT.  Because it's WORKING. Starting Monday, he will have a nutritionist on his side, too. He has so many doctors making sure he's healthy and thriving, and I put my trust in them. I refuse to put my trust in a team that didn't even treat my child like a person.

Our little man is happy, healthy, and continues to defy all odds! Contrary to what the feeding team said, he IS thriving!

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12 comments:

  1. Oh, I say just keep doing what you're doing! It definitely sounds like they were just looking for something to "fix". He is developing so well, always smiling and happy! Go with your Mama instincts!

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  2. So glad he's doing well! He's such a cutie!

    What does the DS clinic do? We don't have anything like that here in OKC.

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  3. Those doctor's should be ashamed of themselves! You're little guy is obviously thriving by doing what you know is best for him! Liam is so lucky to have a mom like you who is willing to put his needs first!!!

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  4. That last appointment must have been so frustrating! I'm sorry they treated you guys like that :/ I can't get enough pictures of your sweet Liam - he has the most beautiful eyes!

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  5. Good for you to follow your instincts! When Eli was first being tested on the autism spectrum we were advised to NOT take him for an official diagnosis because we would be referred to a doctor who would run him through all kinds of tests and then want to medicate him. We were advised that we should just identify his issues and deal with them. Our pediatrician wouldn't even put in his medical record anything about autism because she didn't want that following him around his whole life. Her official diagnosis was "neurological impairments".

    We had a similar experience with his initial IEP team at school, when he was in Pre-K. They had me crammed in a room where he was sitting quietly on the floor eating his lunch and playing with his toys telling me how he was the most uncooperative child they had dealt with in a while and, basically, told me he was dumb because of his IQ test score. Of course they had forced the full test on a child on the autism spectrum instead of spacing it out over a few days. He is SO stinking smart and SO stinking cooperative and well-behaved. I was FURIOUS! That was the only time in all of Eli's life and with his issues that I actually cried. They made me feel like he was horrible.

    And that's when I took control of his education, etc. Nobody is going to tell me that my child is or is not something.

    Grrrr ….

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  6. So sorry you had such a bad experience at the last pod. It sounds exactly like when we met our first ENT for Alex's deafness. We walked away physically ANGRY at him. We switched ENTs immediately and haven't looked back since.

    Liam is happy, healthy and growing slow but steady. Keep it up, mama!

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  7. Oh I am so sorry you had such a bad appointment with the feeding team. It seems as though if they would listen to you and look at his history, they would realize you are doing fantastic! I think you are completely right to keep on with what you know is working. You are doing great and that's obvious by looking at his happy little face! He is so sweet!

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  8. What a frustrating experience. You are clearly very aware of what is going on, and trying your best! I think staying on the right track that you are on was the best choice!

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  9. Hi Stephanie,
    Sorry to hear about that one appointment. I think your decision to go with what you feel is working is 100% the right decision. Sometimes these doctors see a child for a brief moment in time, & truly don't see the whole child as we do day in & out.

    A few years ago, I was told I had a particular auto immune problem (without going into too much detail). I was given very limited options (meds with very strong side effects, possible surgery etc) all of which I did not feel comfortable with at all. I decided to go with my gut & try an alternative approach. The doctors were less than trilled with my decision & told me time & time again this could not be fixed using "natural medicine". I felt berated at every doctors appointment. Well low & behold after working with the naturopath for several months things resumed back to normal. The doctors ran blood work & could not believe the results. In the end, I had one doctor tell me that they must have made a mistake & it must have been a weird virus instead of the auto immune (after multiple tests confirmed it). She refused to believe the issue was resolved with a naturopath.

    It may be something to consider with Liam if the need arises. Just thought I would share.

    Love your blog! Take Care

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  10. Feeding issues and feeding opinions are so stressful! Feedings kept us in the NICU for 6 weeks. Finally when a doctor (who had children of his own) let us go to demand feeding and more natural approach we were out if the hospital in 3 days. Do what works for Liam!

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  11. That little smile kills me! He is going to touch the hearts of anyone that meets him and has a special aura about him. I agree, keep doing what you're doing and he'll be fine. Go Liam, go!

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  12. I'm so sorry they attacked you and Liam like that. =( I love his sweet smile!

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