Way Too Long....

Well, it's been WAY TOO LONG since I did a post...life at the Clinton house has been anything but normal over the past 2 months.

In late August/early September, Avery started having some issues with her formula...her tummy seemed to hurt constantly as she would scream and cry after every single bottle. So, we worked with our pediatrician in trying to figure out which formula was going to work for her....we went from regular Enfamil to Gentlease to Alimentum (which is an expensive hypoallergenic formual) to Nutramigen (another hypoallergenic formula). During this time, the pediatrician also put her on Zantac because she felt that with Avery's symptoms, there was some reflux issues involved. Things progressively got worse for Avery and she was screaming not only after each bottle but also during the bottles...she was also gagging and choking on the liquid. The pediatrician decided to refer us to a pediatric gastroenterologist to make sure there were no other major issues going on with Avery. So, in mid to late September, we went to see the gastro. She spent a lot of time with us and with Avery and decided to switch her off the Zantac and onto Prevacid, which is a more powerful reflux mediciation. She also heard a swallowing issue while observing Avery and decided that we needed to thicken her formula in order for her to be able to swallow it correctly. So, that week we began using rice cereal to thicken the formula. Turns out she is allergic to the rice cereal so we had major tummy issues and the screaming/crying continued for the poor baby.

On September 29th about 10pm, she was having a particularly bad night and was screaming in pain when she suddenly couldn't breathe....she was trying to take breaths, but was just gasping and couldn't get any air in or out. It was the most terrifying moment of my life. John was holding her and we tried blowing in her face to try to get her to catch her breath, we tried putting cold water on her...we tried it all...I got on the phone and called 911 while John put her over his shoulder and started patting her back forcefully...FINALLY she took a breath. This was only a matter of less than a minute, but it felt like about 10 minutes. She was very lethargic at this point....the EMTs got to our house very quickly and they looked her over and gave her some oxygen...they then wanted to take her into Childrens Hospital to be checked out. So off we went....I rode in the ambulance with Avery while John followed us in the car. We ended up being in the ER at Childrens until sometime between 2-2:30am. The ER doctor did some bloodwork on her and after checking her out, he decided that her episode was caused by the reflux. Basically, all the screaming she was doing caused the reflux to flair up and she tried to force it back down and when she did, her throat basically shut down. The next morning, I called the gastro doctor's office and left a message telling them what had transpired the night before...once the gastro doctor heard this, she called us and was very concerned about what was going on with Avery. This lead to her wanting to admit us to Childrens Hospital in order to have some testing done. She also wanted us to see a pediatric ENT at the same time. So, on Friday, Oct. 2nd, we went to see the ENT and then went inpatient until Monday afternoon. The ENT did a scope of nasal passage and whole throat area. He diagnosed her as having laryngomalasia, which basically means the little "flap" at the top of her voice box is "floppy" or not completely matured...meaning that it was allowing small amounts of liquid to go down the wrong direction. Also, when she cries hard, it wanted to "collapse" on her...which is what happened on the 29th. He ordered a swallow study to be done while we were in patient and also wanted us to meet with the speech path team to see about using a thickener with her formula. After this appointment, we went inpatient...the gastro doctor switched her to a prescription only amino acids based formula called EleCare...basically it is impossible for babies to be allergic to this type of formula. We also have quite a bit of testing done...EEG, EKG, Apnea monitoring, etc. There was no evidence of seizure activity (a slight worry after the episode on the 29th) and no signs of apnea. We were so grateful! We met with speech path and did the swallow study...the ENT's observations were right on...she was having limited penetration by the liquid, but no full aspiration...but it could possibly happen. So, she was put on SimplyThick, Nectar consistency, which is a no calorie, no taste gel thickener that we have to add to each bottle.

Now, here we are several weeks later and she is doing well...she is doing great on the EleCare formula and with the SimplyThick. She also is still on the Prevacid for the reflux, which is helping tremendously. We had a follow up appointment last week with the ENT and he said that she is looking great. He REALLY feels that she will outgrow all her issues by the time she's 1, if not sooner. He could already see some improvement in her just since the first visit. HOPEFULLY, we are finally on the right track with our sweet baby...she has had a rough time of it over the last 2 months and so have mom & dad! :)