Hard to believe it's been nearly a whole year since I've blogged. Two children is MUCH more time consuming than one. And that extra little child is the reason for this blog now. I want to share with you all Emalyn's story.
At some point I should share my testimony I shared at church in Ohio last spring. It even fits the Matthew West Tour theme :) That being said.... all about Emalyn... Part 1.
The name Emalyn means "peaceful home" - we named her Emalyn Grace as a play on the words to literally mean "a home of peace and grace". I should have known better than to jinx us!
My pregnancy was a blessing and a disaster. Every time I went for a "routine" check up it would turn into some type of new drama. Something was wrong with me. Something was wrong with the baby. Something was wrong with both babies (wait what?!?!?) - oh nevermind, it's just one baby. Your heart isn't right. Her head isn't right. Your hormone levels aren't high enough. Her bowels aren't normal. I stopped counting after the 13th ultrasound.
In June, Byron and I made it back to Alaska after his year long deployment to Afghanistan. Despite the continuation of a chaos-filled pregnancy we prepared ourselves for the arrival of our little blessing, Emalyn. Emalyn was due September 12, 2012. By the beginning of August I was incredibly uncomfortable. By mid-August I could hardly walk through a store without having to sit down and rest in the middle. By the last week of August I simply stopped going out altogether. On the morning of August 29th I started having some pretty regular contractions and went in to be checked. I was told I was in latent labor... to go home and get rest and I'd likely be back within 24 hours. That night my water broke and we headed right back in. At 6:15pm on August 30th we welcomed a 6lb. 11oz. beautiful baby girl into our world. They put her on my chest and she just stared up at me with those big, round eyes.. not crying, not wiggling all around, just staring at me. Within the hour she was nursing like a champ and zonked out for a nice, long rest. We were in our own little heaven.
A few hours later I realized she seemed very congested. I called a nurse in who told me it was "normal" and just from the amniotic fluid still working itself out. I didn't remember that with Madison, but knowing every baby is different I settled in for the night. By 1am her little ribs were retracting in and out as she was struggling to take breaths. I was terrified and I knew something just wasn't right. I tried nursing but she refused. I called the nurses in, and they immediately rushed her away. After several hours of not hearing anything they finally brought her back to me. I was told they still felt it was the fluid leftover and that after being on blow by oxygen she was keeping her saturation levels up and would be "just fine". As morning came she only got worse. I begged them to do something. She couldn't eat. She couldn't sleep. And she just kept staring at me with those eyes like "Mama HELP me" They finally put her in a "tent" with blow by oxygen and saline humidification. She started to finally eat from a spoon and rested comfortably. For the entire 24 hours I was hospitalized (yes, only 24 hours) she continued to struggle when not in her tent. They released her anyway.
At her 48 hour recheck we had to go up to the L&D unit to see a doctor we hadn't seen yet. I was not a fan. She had lost 10% of her body weight (normal is up to 10% - they don't like to see more than that). He was concerned only about her weight and continued to brush off her breathing issues as "normal" for post delivery.
The next two weeks are pretty much a blur to me. I wish I knew then how much she was really struggling. I wish I knew which retractions to watch for, which breathing patterns, which signs of breathing difficulties to know about. But we didn't. We chalked it up to her being "normal". Despite it all, she was an AMAZING baby. She always seemed so at peace when she was in between her breathing episodes. During that time period she started having bad eye discharge. At one point between week 2 and 3 her eye got so goopy it was completely sealed shut. When I took her in her pediatrician told us it was either pink eye or blocked tear ducts and she was sent home with eye ointment. Once again her breathing issues were brushed off. Only because of my own concerns the doctor sent home her first round of medications.
The night finally came when she turned blue from being able to breathe. I rushed her up to the ER on base. They gave her an atrivent treatment and told me it was just a cold virus she would have to get over. They did an RSV test (of course negative) and sent her home. Two nights later she turned blue again. I rushed her up to the emergency room on base again. She was rushed into triage where a nurse came in and assured me she was a neonatal nurse and knew exactly what she was doing. She proceeded to shove an n/g tube into her nose. (I know now her reasoning for that was to check for atresia, a condition where an entire nasal passage or both are blocked off completely - if you can pass a tube it's not atresia) Upon taking it out her oxygenation level went from the already dangerous 80's to the mid 70's. She was gasping for breath and turning blue again. We had somewhere between 4-5 nurses and physician assistants surrounding her at any given moment for the next few hours. They tried shoving adult nasal trumpets into her nose. Yes, adult. That caused further damage. After oxygen for several hours and another atrivent treatment she was stablized and sent back home. Are you sensing a theme yet? They told us to just have a followup with her ped in the morning. Her pediatrician at the time was not available so we got to see Dr. Hurlston. Every single day I THANK GOD for Dr. Hurlston. She took one look at baby Em, one look at me and said "Why in the world has this baby not been admitted yet?!?" She wrote direct orders to have us admitted into the pediatric ward of Fairbanks Memorial. She was hospitalized for two days where they ran an insane amount of tests and labwork, to include a CT scan. An adult ENT came in to talk to me after reviewing the CT scan. He told me that she just had swollen nasal passages probably due to trauma (the nasal trumpets) that was probably exacerbated by a cold virus. You would think I would have questioned him at this point. A baby does not have a cold virus from birth for 5 weeks straight. We had plans to surprise family and fly to Ohio and had bought tickets before we knew Em was going to be so sick. The doctor thought the change in climate and better access to care would be better for her. They released her and sent us home with new meds and a nebulizer. In Ohio it was the same story... struggling to breathe, admission into Akron Children's, x-rays, testing, hospitalizations. She saw a pediatric ENT who did a scope on her. He was the first one to throw the word "stenosis" at us. He said she was still suffering from swelling but she also had very narrowed passageways to both her nose and eyes (this explained the eye discharge, too) I had to stop nursing to keep her sats up. He said that as babies get older they outgrow the condition. Most babies outgrow it by 2 months old. We figured out a way to get her to eat and had her on regular nebulizer treatments. She seemed to improve some and dare I say was "stable" We flew back to Alaska. Two days later it was the same story all over again. I called up on base in tears. Carol, the nuse who has come to know and love Emmy, heard her breathing in the background. After her initial "oh my goodness is that her breathing?!?!?" she sent me right up to Fairbanks Memorial again. They admitted her... again. The doctors and nurses there came to know her very well. She saw another regular ENT who reviewed everything, including the CT scan again. He told us she had stenosis, but there was a surgery we could have done to fix it. Dr. Hurlston was very proactive about everything and got stuff going for us to go to Seattle for the surgery. She was released and then again admitted before we ever left Fairbanks, and spent the last 4 days before we left hospitalized and monitored. In Seattle she started to struggle again. The pediatric otolaryngologist saw her and scoped her again. I pleaded with him not to give her Afrin as she had so much she was having rebound issues from it. He did it anyway so he could scope her. His official diagnosis was "rhinitis neonatorum" with nasal and nasolacrimal stenosis. Rhinitis neonatorum is really just a generalized, scientific way of saying she has a blocked nose and we don't know what's causing it. The surgery was canceled because the stenosis was in her middle nose affecting tissue. He started her on steroid drops and sent us on our way. One of the best friends ever possible, Ashley, lives close to Seattle and came to visit us that night. Instead of a leisurely evening catching up with a friend we spent it in the ER of Seattle Children's. That entire night was a disaster. It makes me angry just to think about it so I'm not going to relive all of the details. They sent us back to the hotel in the morning and on a plane back to Fairbanks that night.
The steroid drops seemed to be her little miracle drug. For six wonderful weeks she was a normal baby. She could nurse again. She could sleep again. She could function as a normal baby. That's all the first half of her story. I've spent a lot of time researching the condition as it seems to have such little known about it. Part 2 is to come later as I am still a mommy first and foremost and my little ones need me!
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