Rayne is the most beautiful, sweet, lovable, precious, adorable little girl that there ever was. But we have discovered that she is just shy of perfect, but someday soon she will be. Oh I guess I should go back and explain.
Since birth Rayne has had this cute little squeak when she breathes, hence why we call her Squeaker. And she was never really fond of sleeping on her back. Then around two weeks Rayne starting sounding really labored in her breathing. So we went to the doctor about it and the doctor said to prop Rayne up when she slept or played on the floor. But it just looked like a cold. Later that night after our baby had been vomiting for 12 hours and still labored in her breathing we took her to the ER. After 8 hours of tests they decided that Rayne had a virus and sent us on our marry way.
Over the next few weeks as we traveled to and from Utah Rayne stopped vomiting but her breathing still sounded just awful. We tried cold night walks, humidifiers, vicks vapor rub, sleeping in the cold, sleeping in the bou
ncy chair, and sinus rinses. Nothing made it better, and slowly Rayne got worse. She wasn't sleeping well and the poor thing was just tired and uncomfortable all the time. Nursing had become extremely difficult with her not able to breathe and we switched to exclusively pumping and doing breast milk in bottles.
Finally when we got home Rayne was overdue for a well baby check and we took her in. At 6 weeks old Rayne had only managed to put on one pound and one inch. Although any growth is good the doctor wished there was a little more. The sent us off to get blood work done to make sure that there wasn't any infection still looming in her system. The next two wee
ks were filled with x-rays, blood work and more doctors visits. Every test coming back completely normal, but Rayne's breathing was still labored and noisy. Then the doctor wanted to try an antacid. After two days of diarrhea and no improvement of symptoms we followed up with the doctor, once again.
During that visit we decided not to continue the medicine and to go see a Pediatric Pulmonologist and to do an Echocardiography. The Echo was set up for the following week but our doctor didn't think it was her heart we just would rather be safe than sorry. The Pulmonologist would be the important one, which of course was the one we couldn't get an appointment for until late December. So I took the ap
pointment and decided I'd figure it out when my poor girl wasn't so upset.
I took the weekend to pray about when needed to be done, and to just try to relax. My stress wouldn't do anyone any good. Monday morning I called the Pulmonolgist to see if there had been any cancellations and of course there hadn't been and the nurse said it was very rare that there would be. But if my regular doctor would call in and talk with the nurses they could asses the situation and if an urgent appointment was needed they could get us in. Well my primary care doctor is just the best. Even though he wasn't available to see Rayne during her appointments during this whole trial and error he watched her chart and stayed up to date on her condition. So when I called and told him how we could get an earlier appointment he was happy to do it. I was expecting to get an appointment in a couple of weeks but when our doctor called on Wednesday he got us an appointment for this Friday!!! What a relief to not have to wait weeks to be seen. And it was the same day as the Echo so we could just get all the poking and prodding done in one day.
Alright now we come down to today. Early this morning Rayne and I went to
have her Echo done. And I was never happier that a test came back normal, and honestly it wasn't because heart stuff is never fun. It was because the doctor was an absolute jerk. In the 10 minutes we were there he managed to questioned my mothering instincts, my doctors conclusions and the fact that my baby was crying too loud for him. I was thankful I had done my research about the procedure or I would not have gotten anything out of him. Oh it was awful, but thankfully it was done and over with and I never have to go back.
After breakfast and a nap for both me and Rayne we headed down to the Pulmonolgist. When the nurses where doing all of her vitals they could hear the breathing problems. It was obvious to them why she was there. And then when they weighed Rayne she came in at 9lbs 5oz!!! That's just shy of a pound in a week, which put her right back on the curve for growth. Soon the doctor and the nurse came in and we had our little chat about symptoms and what had been going on. The doctor told me that Rayne has Laryngomalacia. Which is a 'soft larynx' and because the tissue is underdeveloped when Rayne eats, gets, fussy or excited the larynx closes. Causing her to not breathe and the harder she tries the har
der is closes. The example she used is if you try drinking a thick shake through a straw the harder you suck the flatter the straw gets. The upside of down is that 99% of children grown out of this all on their own. That's a good thing because we don't have to do surgery or any other interventions in the foreseeable future. If she doesn't get better in the next few months that could change. But the downside is that means there is nothing more that Fred and I can do for her, but is was very nice to hear that our instincts about what we should do where perfect for her. The doctor also told me she does need to be under their observation and if she gets a cold, or flu or anything like that to call them directly. She will have to be seen by them and will most likely have to be put on oral steroids so she doesn't go into serious respiratory distress. Which I was really glad to know because I could image that I would be freaking out if her breathing all of a sudden got 10 times worse and no one would do anything about it because it was just a cold. The other thing is that we will have to 
continue bottle feeding for quite a while. There was a good chance that the reason she didn't put on weight early on was because she could breathe and nurse because of the angle. Once she started bottle feeding she was able to actually ingest the volume of food she needed she could grow properly.
Armed with a diagnosis, instructions, and validation I scheduled our two month follow up and headed for home. By the way this is a doctor I won't mind going back to see. Apparently he understands that when you have Pediatric in your degree you should have excellent bedside manners
So for right now Rayne is just shy of perfect, but soon she will be. And in the mean time we will keep enjoying every smile, cuddle, and moment with our baby girl.
