Isaac is three months old! These last three months could not have been more different than what I imagined. For the first few weeks, I was amazed at how easily he transitioned into life. He was a great nurser and was gaining incredible weight! I felt relief that perhaps my third time really was a charm. I can’t pinpoint the moment where he started to struggle; it came on so gradually. I do know that by his two month check-up on December 16th, my mommy antenna were tickling – I was becoming concerned with how he was nursing and with the way his breathing and lungs sounded. He had a very uncoordinated suck-swallow-breathe pattern when he breastfed and had developed a mild chronic wheeze. The nurse practitioner ordered a chest X-ray and swallow study. Both came back normal.
Two days before Christmas, his wheeze became noticeably worse. Christmas Eve, I brought him to his pediatrician and he was having retractions, deep wheezing, and breathing too fast. His pediatrician called the pediatric pulmonary specialist at Maine Medical Center and we were awfully close to being admitted to the children’s hospital. Despite his labored breathing, he was maintaining a good oxygen saturation level, so we were sent home to keep an eye on him and follow up in a couple days. The day after Christmas, his lungs sounded slightly better.
On December 29th, we saw a pediatric pulminologist who suspected an airway defect could be causing his symptoms. He listed the three most common ones he was concerned about: laryngomalacia/tracheomalacia, a tracheal cleft, or a tracheoesophageal fistula. He wanted to refer us to the pediatric ENT and schedule an outpatient bronchoscopy to look at his airway and into his lungs. I went home to wait for the calls.
Meanwhile, I was researching about tongue and lip ties. The lactation consultant I saw after his swallow study diagnosed him with a posterior tongue tie and I suspected he also had a significant upper lip tie. It was looking like our only option for laser revision was to travel out of state and pay over $700 (the same situation we encountered when we sought to have our first two children revised in 2012). With the help of an amazing IBCLC at Maine Medical Center via Facebook, I finally found a pediatric dentist in Maine who could perform laser revisions and he was able to squeeze us in on New Year’s Eve. This time, I was able to stay with Isaac for the whole procedure. I knew I would be required to stretch the revised areas to preven reattachment for the next two weeks so I tried to prepare my heart again. I’ve become very practiced at detachment over the last few years and despite my ability to do what I have to do, it’s still another sword in my heart each and every time. I wrote about my experience with stretching my older two children here.
Within a day, I did notice some improvement in Isaac’s latch. He was able to hold onto my nipple better and wasn’t slipping off and swallowing air as much as he was before revision. Unfortunately he continued to choke and aspirate. I began trying to capture it on video to better show the doctors what was happening. Here is once instance: https://www.youtube.com/watch?v=v5D7yEP0rYA
I would say this was happening about 90% of the time he nursed. I had become so scared to feed him and I dreaded every time he became hungry. I tried a bottle in the hopes that he wouldn’t struggle as much but it made no difference. It’s hard to explain the psychological impact the fear of feeding your own child has on you. I felt like my body was hurting him every time I watched him struggle to clear his lungs.
The first week of January, his breathing worsened again. I brought him to his pediatrician again on January 7th and he sent us home to try an oral steroid in the hopes of opening his airway. The following day, this is what his breathing sounded and looked like: https://www.youtube.com/watch?v=lmm4ppCxAzg
I brought him back to his pediatrician on January 9th and his breathing had only worsened. His doctor sent us home again, this time with an inhaled steroid in addition to his oral one. He only continued to get worse. The following morning, this is how hard he was working to breathe: https://www.youtube.com/watch?v=QhT_6IT7HcU
Sunday morning during church, he was really struggling to breathe, switching from grunting to hyperventilating. It was all I could do not to rush out of the service and bring him straight to the ER. One way or another, he was being seen in the hospital today, even if it meant driving him myself all the way to Maine Medical Center. I made the decision to see about getting him admitted with the help of his pediatrician, who could pull more strings than I could. I paged his doctor (who had told us he was on-call all weekend) and he wasn’t surprised to hear from us in the least. He told us to bring him to the local ER and he’d meet us there. Thank God my midwife apprentice Becca (from Isaac’s birth) was staying with me that weekend to help with the boys. She was able to come with me to the ER and help with the older two.
Isaac was assessed, given a breathing treatment, and a portable chest X-ray. While he was awake, his oxygen level was staying in the upper 90s. He wanted to eat and I tried nursing him but he choked repeatedly and we gave up. He finally fell asleep and his oxygen level dropped dramatically. The doctors rushed in and put him in oxygen.
Even with the oxygen, he was dropping into the 80s every time he fell asleep.
We were also told that his chest X-ray showed infiltrate and these together seemed to seal the decision to admit him to the children’s hospital at Maine Med. His pediatrician arranged for an ambulance transfer and direct admission so we could bypass the ER at MMC. I was able to accompany him in the ambulance and Becca followed in my van with the older boys.
Matters of the Heart and Home 