Loving LuLu

It wasn’t that long ago that my husband and I were struggling with infertility and wondering when (or if) we would be blessed with another little baby.  The stress of doctor’s appointments, medications, charting, and shots had definitely taken it’s toll on us.  At our last IUI appointment, the doctor said that our chances of conceiving were very low due to some other issues that month.  We went ahead with the procedure and imagine my surprise when I tested 11 days later only to see the word “positive” come across the screen. An answer to many hours of praying.

My pregnancy was anything but uneventful.  I am a BAD pregnant person.  I am so sick, I swell, I get fat.  I am starving but I can’t eat. It is such a difficult conundrum because I work so hard at getting pregnant only to suffer for the better part of 40 weeks. At 28 weeks and 2 days, I suffered a mild placenta tear.  By the time we got to the hospital the bleeding at stopped but they went ahead and kept me for a few days to make sure nothing else happened.  I laid in the hospital bed just praying for my sweet baby girl. 

After 12 weeks of a combination of bed rest and restrictions, I checked into the hospital on November 13, 2008 and Luella Jane was born just a short time later via c-section. She was a beauty. Of course we had our normal difficulties, latch wasn’t good, she wasn’t sleeping well and she was losing weight.  The nurses called her “dramatic” because of all the noises she made. Little did we know that all her cute gurgle noises would become such a big deal in the not to distant future.

At our first pediatric appointment, our doctor asked if she could take LuLu out of the room for a minute.  I am not a first time mom, so the concern I should have had was fleeting but when Dr. Carine returned with Lu’s around the office “listen” they had determined she had a common but little know condition called Laryngiamalacia.  This is a an obstruction of the soft tissue in her airway.  Her throat was not fully developed and when placed on her back it would collapse and inhibit breathing.  It also made breathing an effort which in turn burned calories impacting her weight. And so it began, our journey into raising Lu.

For the next several weeks we had a fussy colic prone baby.  She cried constantly and never seemed content. We went to lactation appointments and doctor appointments.  I started a dairy/soy free diet and soon she became a much happier baby. Still very noisy but happier. Through various elimination diets we determined that Lu has a allergy to milk, soy and eggs.  After a rocky start, we successfully breastfed for 14 months. 

Most children with Laryngiamalicia will begin to show signs of improvement at around age one.  Lu was not showing any progress so the ENT decided to run so further tests to determine if there were other structural abnormalities.  In January, we checked into Nationwide Children’s Hospital and Lu underwent anesthesia and Dr. Gupta placed a small camera down her throat.  What he found was that along with her Laryngiamalicia, she also has a subglottic stenosis.  This is a narrowing of the airway.  Her airway should be around a the size of a quarter but her’s is about the size of a nickle.  While this information was not good news it did give us a clear answer to why she did not seem to be getting any better. However, coupled with the her life threatening allergy to egg, this news brought a whole new level of concern for us. We had to embark on a new level of Epi pens, medical ID bracelets, car seat labels and other medical protective devices.

Now, LuLu has always been a tiny creature.  She was wearing 6 to 12 months clothes at one year, she still struggles to gain weight. If you couldn’t see her you would think that the noises from her crib were being made from your Grandfather’s recliner on Thanksgiving day. I constantly feel as if I have to explain her raspy sounds to other parents so they don’t think I brought my sick child to the playgroup, church or child care.  She has difficulty speaking and when she does, she sounds like a combination of Minnie Mouse and someone who has smoked for the past 20 years.  It is endearing and I am sure as she grows and her voice becomes more normal, I will miss the perky breathy intonation to all her words. 

This Friday, Lu will undergo another round of anesthesia and a scope.  Having your sweet baby rolled away in the cold steel medical crib while she cries and yells Mama is not a pleasant experience. This time she will be much more aware of her sudden removal by strangers.  It terrifies me to think of her laying there, asleep under medication. I wish I could just hold her hand but instead I will be waiting impatiently in the lobby.  I know God will protect her and that she will be surrounded a mighty force of angels.  I will pray ceaselessly until I see her blue eyes and hear her sweet raspy voice call for me. Until then, I will love Lu Lu a little more than normal and hope that somehow her little heart and mind will feel at peace during this time.