Thursday, July 30, 2009

Where it all started. (To get you up to speed)

Alexandria Paige Duelley was born April 18th 2009 @ 4:44am. She wieghed in @ 7lbs 4oz and was 21 in long. She was gorgeous!!
We were all thrilled to have a third little girl. Everything was perfectly normally with her delivery and with her. She had great apgars and ate,slept,and used the bathroom like a champ. We were released 48 hrs after her birth as normal and home we went! Things were great. She ate every 3 hrs like a normal baby. She slept alot and was happy when she was awake. She went for a 1 week check-up and everything was normal and she had gained wieght.
We were just starting to settle into a routine when @ 12 days old @ 3am she woke for a middle of the night feeding and she was making an odd gasping sound. I tried to feed her the bottle and she started gagging and choking on it. I sat her up a bit and she was floppy and still making a rattley gasping noise. My husband Mike woke up to all the comotion and freaked completely out and told me to take her to the ER. We live about literally 4 mins from the hospital and I got there in about 2! When we got there the triage nurse hears her making this noise and immediately grabs her up and runs to the back with her.I was terrified. When I get to the back where they had taken her they wouldnt let me in the room. There were about 20 people in there and the had oxygen on her and were adminstering a breathing treatment. Once they deemed her stable they allowed me in and told me she had croup and would be admitted for 24 hrs to recieve antibiotics, steroids and breathing treatments.I breathed a sigh of relief and we both took a nap once we got into her room.
When we woke up from our nap she was back to making that awful gasping noise. I called for a nurse and they came in a reassured me everything was fine thats how she would soun duntil the croup was gone. It is then the feeding issues started. She started not wanting to eat at all and when I could get her to eat she would gag and act as if she was choking. This continued the entire time when we were in the hospital and I really didnt want to be released but they reassured me once again that it wwas because of the croup and it would subside in a few days.
We got home and things were the same as the day we were admitted. I took her to her Dr and they said she had bad reflux and started her on Prevacid and switched her to Similac Sensitive RS. Things got a little better with the eating but thee awful raspy gasping sound stayed. I would take her places and people would hear her and ask if she was alright. It was getting so frustrating. Then just when I thought things couldnt get worse.........the screaming started. She would scream and scream until you were afraid she would pass out. She screamed from daylight til dark. The Dr took my concerns and decided maybe the screaming would stop if we switched formula again. They switched her to Alimentum which is a hypoallergenic formula. It didnt work.....she actually refused to eat @ all. We ended up having to switch her back.
Finally Mid-June thay decided to send her to a Pediatric GI doctor @ Pittsburgh Childrens Hospital. The appt. was for July 10th. Well betwenn the time the appt. was made and July 10th the screaming fits were getting worse and worse and she was taking awful speels where she would get choked so bad and she coughed all the time. We ended up in the ER again exactly one week before her GI appt. The ER doc said he did not think the problem was GI he thought it was ENT.
After the ER visit I called ENT docs all day and no one locally would take us because she was an infant.Finally late that afternoon an ENT doc in one of the smallest towns about 30 mins north of here said he would take us.I was skepitical to say the least. We arrive @ Dr.W office and he took us back and said he needed to scope her. I was shocked they could do it there but was happy because I thought maybe we could find an answer. She was awake during the scope so she didn't very still so they couldnt see very well but Dr.W said it looked like Laryngomalacia and a Laryngeal Cleft. He said we would go July 17th to see a Pediatric ENT. I was relieved maybe we were finally getting somewhere!
We arrived bright and early on July 17th excited and nervous with the hopes of answers. The took her back and scoped her again. Dr,R said he didnt see signs of Laryngomalacia or a Laryngeal Cleft and that mean he would have to set up a time for her to go into the OR and be put to sleep have a breathing tube put into her nose and put a clamp tp part her vochal chords and sstick a metal scope down her throat. They know there IS an issue they just need to figure out what. They set up her surgical procedure (Laryngoscope) for Aug 3rd. They went over all the risks...such as infection,permanent vocal chord damage, respitory distress ann as with any procedure death. So now we wait for Mon. This should catch everyone up and now I will update as we follow this journey. Please everyone pray for my baby.

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