His Story. My Story. Our Story

My husband and I have 3 little boys. It took a year and a half to conceive our third baby. I had a rough pregnancy with Cruz. I was sick all the time, more than I was with my other two. I was exhausted. My family and I had just moved to Alabama where we knew NO ONE... I had no one to give me a break.. I am a stay at home mom, but everyone needs a break from time to time, ya know? Not for me. My husband and I both come from small broken families, so although its hard not having anyone around, its a lot harder to live down the road from family, and still not have any help, or involvement. My husband works all the time, and had a job offer, So here we are in Alabama. Cruz was born at 39 weeks repeat cesarean. He was 7 pounds 15 ounces. My third beautiful baby boy was born. He was born jaundice and placed under the lights at the hospital. He was born "squeaking".. I was absolutely nursing him. I nursed my firstborn for 22 months and my second for 6 months.. yes I was one of "those" moms. a VERY proud semi-arrogant nursing mother. After all I had donated milk to premature babies in the past. I would NEVER give MY newborn baby formula. On day six of Cruz's life he was admitted for a jaundice level of 18, which is a considerably high number. Again, he was placed under the "lights"... But hey, my other two were jaundice. I had almost expected him to be jaundice, what I didn't expect was him to be gasping for air.. I didn't expect him to be sounding like he had mucus blocking his airway. I didn't expect him to be squeaking. I didn't expect him to be SCREAMING crying all the time. I didn't expect to have a difficult time nursing...why was MY milk drying up? why couldn't he latch on? why was he holding his breath? What was going on? He was my third, shouldn't this be easy? Shouldn't he be the happiest easiest baby of all three of mine? I always thought your third was the easiest.. why was this so hard?? Why am I failing? What am I doing wrong? Is there something wrong with him? How could this happen? All these questions were running through my head CONSTANTLY. At 3 weeks old my milk had dried up completely, he wasn't able to breath, suck, and swallow. I blamed myself, I just figured, I was older, not eating healthy enough, and worn out. I switched to formula. I had NO engorgement. Nothing. It was gone. ALL gone. I felt guilty, I still do. I feel like I had failed him. At this point he was crying so often that I couldn't even think straight. I couldn't even gather my thoughts. EVERY waking moment my baby was SCREAMING. If he was awake, he was crying. At 6 weeks old Cruz was considered "colic"...and recommended to start a "special" formula. He was referred to an ENT specialist for his mucusy sounding stridor.. Little did I know I was about to meet the man that would essentially save my babies life, and ENT specialist in Huntsville, Alabama. The very first appointment Cruz was scoped (a tube the size of a spaghetti strand is was put up his nose and down his throat..not pleasant..something that has now been done to him so many times I have lost count) and Dx with severe Laryngomalacia... Laryngomalacia ,is fairly common, most babies will "outgrow" it and only about 1-5 percent require surgery.. Surely my baby will outgrow it. He also put on Zantac for his severe GERD.. Plan was to see him back in 6 weeks. Cruz was approaching 12 weeks. STILL crying ALL the time, gasping for air, coughing, choking, retracting so badly you could see almost EVERY rib in his chest, the weekend before surgery, he was even retracting in his neck! He wasn't gaining weight, like he should have been, turns out he was burning so many calories, TRYING to simply breath.. Can you imagine someone saying to you "It could be worse" or "other than "that" he's ok?  ... ... I am quite certain you wouldn't feel like "it could be worse" if your baby couldn't breath! How on earth could it possibly be worse, if you can't breath?! Other than "THAT" he's ok?  Other than "what"? not being able to breath??... sure he's fine!?!   A simple exercise to display how Cruz was breathing would be for a person to run until they are completely OUT of breath (you know the feeling) and living like that day and night for 12 weeks! MY baby, MY perfect baby, something was seriously wrong. We went back to the ENT specialist. He scoped him and told me surgery was necessary. I, in a way, blew him off. Not MY baby. NO WAY! He continued to tell me, that if Cruz were to catch something as simple as a common cold, it would probably "close him right up"....shaking my head, holding back tears, lump in my throat,...I questioned.. like "close him right up, blue in the face, calling 911 closed up?, I responded?!? yes..he said..putting him at risk for an emergency tracheotomy...assuming he even makes it to the hospital. Death had never felt so close.    I almost fell apart right there. I was in complete shock. surgery?!? My baby is ONLY 12 weeks. Hes a NEWBORN! surgery?! I left and IMMEDIATELY called his pediatrician and went directly over to her office. There was NO way she would think he needed surgery! No way! To my disbelief this woman whom I respect greatly looked me in my eyes, and said she has been working along side the ENT specialist for 16 years, and he has ONLY recommended 2 of her patients to have this surgery. She continued to tell me he was very conservative about surgery, and very selective. I was shocked. Cold Still. Pale. Speechless. Shocked. I went home and googled everything.. I couldn't really find anything. VERY VERY little. I came across Coping with Laryngomalacia. Turns out there are women who can't get doctors to look twice at their floppy larynx baby, desperate for their babies to get scoped, desperate for a doctor to give them answers, desperate to see an ENT.. My doctors WERE giving me the answers, I just couldn't believe them. The day that changed everything. Surgery it was. Cruz had his surgery Nov. 7, 2011, at the very tender age of 12 weeks. He had a bronoscopy and supraglottoplasty. I gave my baby over into the hands of medical professionals, praying that they would bring him back to me, praying to God, to take care of my newborn baby. He was in surgery for about an hour and a half. I sat in the waiting room ALONE. My husband stayed at home with our other boys. There have been plenty of times in my life where I have stood only to relieze there was no one around, but this time was different, I looked around only to realize  I was standing there alone, in a very desperate time of need. That was the longest hour and a half of my life. I was numb. There were no emotions to be felt. This was serious. I had to be strong. There wasn't a choice. My baby was being put under, and having surgery and I Had to be ok with it. It doesn't take much for me to relive those moments. I will never forget how helpless I felt. I walked into recovery, he was very pale, screaming bloody murder, cold, and clearly in pain. I was clueless. There was nothing I could do to help him. There was nothing I could do to comfort him. I was a terrible mother. How could I have put him thru this? I have never been more on my knees about anything in my life. PLEADING.He was transferred to PICU and stayed there for 35 hours. He was given MORPHINE 3 times for pain, steroids, laratab. zantac, tylenol, and numerous breathing treatments. He had all different kinds of tubes and cords attached to him. He was in a hospital gown. There is NOTHING worse than seeing your newborn baby in PAIN. There is NOTHING more STILL and COLD and SCARY than the pediatric intensive care unit. You will NEVER know FEAR until you hear monitors going off because your babies oxygen level is dropping to a dangerous level.The 2 weeks that followed Cruz's surgery are a blur. The medication he was sent home with was stressful in itself, it was more than my other 2 children had taken in their entire life's COMBINED. He slept VERY little in those 2 weeks, falling asleep for 15-30 minutes at a time and waking up screaming 24 hours a day.. Recovery was long for Cruz. The first two weeks were the worst of course, but it took about a total of a month and a half for him to really start acting like a "normal" baby. I cried, he cried, we cried... A LOT.. I tried to do most of my crying alone while I showered or whatever. I didn't want my boys to see me falling apart. I didn't want my husband family or friends to know how much of an emotional toll this was taking, NOT that there were a lot of people concerned of my babies well being,as matter of fact there is only a SMALL handful of people that even asked how he was doing, and for those few people I will be FOREVER grateful, your continued support means more than I can express in words, and I will never be able to thank you enough. There were many friends and family who showed us no concern at all, it was a defining moment in a lot of my relationships.  

It was a VICIOUS CRUEL cycle.. Cruz would scream because he was considered colic, in turn with all the crying his larynx would swell, the swelling would cause breathing problems, therefore causing him more frustration because he wouldn't be able to breath and the cycle would start again. OVER AND OVER AGAIN. Do you know how HARD it is to try to soothe a baby with colic that also has an obstructed airway?! I was mostly angry. Angry that, not only did God NOT give me a family or friends to help me, he also gave me a baby that required special attention, and a husband that was in denial. I still cry when I think about everything that has happened in these short six months. I'm not angry anymore, and Cruz is doing a lot better. He can breath now. He's not in need for oxygen anymore. Can you imagine something so simply as breathing, struggling for 12 weeks? What a fighter, what a strong little man he is. I now realize that God chose me to be his mother because he knew I could. God knew I was strong enough. God knew I was patient enough. I am humbled that God thought I was his perfect fit. Gave gave me a special baby, because I am a special mother. Cruz will be ok. I am determined that he will be a happy child. He is changed forever. I am changed forever.  This is our journey with laryngomalacia.
Ellen Garner--

I am so happy Cruz is doing so well and that I am almost to a place of reflection on everything that has happened. Please continue to pray for his continued healing, and give praise and glory to his name for Cruz's defeat!!  Cruz most recently had his adenoids removed and tubes placed in his his ears, and we are very hopeful that we are at a turning point. 

Written by: Ellen Garner, LM Supermama