Liam, my youngest and only LM baby, was born at 36 ½ - 37 weeks due to my pregnancy induced hypertension. He was born not breathing well and was diagnosed with respiratory distress syndrome (left lung was under developed). He ended up spending 9 days in the NICU. When we took him home, he had a stridor that we were told he would loose in a few days. Liam’s first pediatrician told me that he had Tracheomalcia and would grow out of it. Each
week we were back in her office, sometimes twice or three times a week
with me complaining and pleading with her that he could not breathe. I tried breastfeeding from the start and always had to supplement with formula. My milk never really did produce enough. They
said the stress of the NICU probably hurt me, but I was on two
different supplements and a prescription trying to get my milk supply
up. Liam had trouble feeding from the start. He would just get so tired and once he went to sleep, there was no rousing him to finish. Sometimes we would take a ½ of an ounce and pass out. The pediatrician did diagnose him with GERD,
so we switch formulas (due to allergy/intolerance) and put him on
Zantac. That is when I quit breastfeeding and he went to formula 100%. I even went as far as to call up a pulmonologists’ office, on my own one day, asking if I needed a referral (was told yes). When I called for the referral from the pediatrician, I was told that he was not “bad enough” to see one. However, after the failed Zantac, my husband called and demanded a referral to a GI doctor, which was given quickly.
At
about 12 weeks old, he met the GI doctor who heard him take a bottle
and see how hard it was for him and promptly asked who our pulmonologist
was. I had to laugh. When I explained the
situation, he told me that he would take care of it for me and made
Liam an appt with one and ordered a swallow study and barium swallow. (BTW: we have NEVER been back to that first pediatrician) The
results of the swallow study and barium swallow showed he had problems
with the suck/swallow motion, but no aspirations and referred us to an
ENT. The pulmonologist said that everything looked good
from their perspective and that his lung that was under developed at
birth was 100% perfect now. Yay! J
Two weeks later, we met the ENT. As long as I live I will NEVER forget that appt. My mother went with me. My husband was always unable to accompany us to the appts due to school, and this was the first time I was not alone. Vanderbilt
Children’s Hospital is a teaching hospital so before actually see and
meeting the ENT, we met a couple of nurses, a PA, and a couple of
medical students. After watching Liam’s barium swallow video, we met. Little did I know that this man would become my best friend and lifesaver (LITERALLY!!) Dr. Wootten did an in the office scope and showed us the extra tissue above my baby’s larynx. He told me that he had Laryngomalacia
(not Tracheomalcia “which can be confusing to the untrained ear,” he
said) and told me that he needed surgery due to his failure to thrive.
When I left that appt, my head was spinning. FINALLY I
knew what was wrong with my child and someone was going to help me make
him better. After 14 weeks of watching my child struggling to eat and
breathe….I knew how to help him. At 16 weeks he had surgery. Went great! However, when placing his breathing tube in during surgery, he was found to have Congenital Subglottic Stenosis. This is narrowing BELOW the larynx. Congenital because he had never had a breathing tube while in the NICU. Most babies get it from prolonged use of the breathing tube and scar tissue is formed. We
were told that he was a grade 2 (about 50% narrowed) and could
possibly have another surgery – this time a MAJOR one requiring a graft
to be put in and months in the hospital. However, he had a great night in the PICU and was allowed to leave the next morning.
A
couple of weeks later, Liam had his first appt with his new
pediatrician who was concerned about our breathing issue questions (he
was having blue spells around the mouth) and sent us to the emergency
room. There his ENT met us and we found out he had his first cause of croup. Very mild. Croup is something we were told to watch out for with Liam. Due to the narrowing of around his larynx, once it is inflamed and swollen, problems can arise very quickly. We were told that if he gets it a lot, surgery (the BIG one) would be inventible. At this point we were seeing the ENT ever two weeks. Liam was better than before, but not better enough to say that he was doing good. Still had the stridor, although not 100% of the time like before, and was still having blue episodes around his mouth.
At
22 weeks, Liam had a bronchoscopy along with some cultures from the GI
and pulmonologist taken and also had a ph probe wire inserted into his
esophagus to measure the ph levels and reflux. Due to the many tests, we had to (unexpectedly) stay over night at the hospital. The
ph probe was very crappy. I had to track every time he ate and was
position he was in, if he got the hiccups or coughed….they finally came
the next afternoon and took it out. The ENT knew we were
about to go out of town, in fact 2 days after leaving the hospital we
were scheduled to go on a plane to Maryland and see my husband’s family
and introduce Liam to everyone. The ENT said that it
would be fine, but when we came back, he would take out Liam’s adenoids
because they were already too large. So, next week when we returned, went back to the hospital for surgery/procedure # 3. This time we ended up staying 2 nights at the hospital. He refused to eat.
Since then things have slowed down and have gotten to be somewhat normal. At 8 months, Liam was placed on an apnea monitor at bedtime to see if he was having any episodes…he is. So a sleep study was scheduled at took place at 11 months. As it turns out Liam has Central Sleep Apnea with oxygen levels dropping as low as 69% while in REM sleep and 89% in NREM. We are currently waiting to see if he will be put on oxygen overnight. An appt with a sleep neurologist is scheduled for next month.
As far as the GERD, that is a HUGE headache! He has been on Zantac, Nexium packets, and compounded Prilosec. He has been on the compounded Prilosec and Zantac daily for a while now with many increases. If we even miss one dose, Liam pays for it for a couple of days. I am very afraid that they might be considering the Nissen surgery.
Liam is 12 months now. He started crawling at 10 ½ months and just recently pulling up. He has switched to milk very well (I think he likes it better than formula!) He is also starting to talk and say a few words.
Even with two surgeries looming over our heads, we are still pretty optimistic. We hardly hear the stridor anymore. Only when he is crying hard or crying while tired. He still has some trouble with chunky foods at times and gets choked easily.
Written by: LM Supermama Karen
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