Category: Groftzoo Updates

I’m not going to start this post with another apology that it has been so long since I posted and make a bunch of excuses about it.  My whole life is an excuse not to write while at the same time being ripe pickings for juicy blogging goodness.  So here I am, taking a few not-so-spare moments to check in here.

The last post was about Molly’s ailments.  I am happy to report that we have some resolution to a little of those.  About a month ago she tested negative to all her previous positive allergy tests.  She was still having trouble swallowing food at the time and tended to choke and vomit when she tried to eat.  But with the lifting of the threat of an allergic reaction, we were able to offer her a wider variety of foods and came up with some she was willing to practice her eating on.  That was victory number one.  Next she underwent an endoscopy to check for the extent of her GERD, gastrointestinal allergies, eosinophilic esophagitis and celiac.  We just got the results back today that she is clear of all of those, except the GERD.  This was the best possible news we could get from that test. Victory number two.

And while I don’t want to claim it yet as victory number three, I just got her to go to bed without nursing to sleep.  (Silent cheering!)

I would love to say that the rest of my life is boring right now, but it is only boring in the typing of it.  My days are filled with driving the big kids here and there and spending the quiet moments sitting on the floor with Molly and Lily and enjoying their littleness.  It is so tempting to get pulled away from that to go do things that look more important, but given the choice this is still where I want to be.  Getting to the end of the day and finding that my to do list has grown instead of shrunk is not any big problem (although it can be frustrating) and a day will come soon when I have plenty of time to clean my house and no nursing and rocking left to do.

Which reminds me, just tonight, as I rocked and nursed Molly, she stopped nursing, sat up and gave me a kiss.  Then she giggled and went back to nursing.  She did it two more times right after that.  It was very sweet.

Miss Molly has been a puzzle from day one.  First, she broke up the whole girl, boy, girl, boy pattern.  Then there was the medical drama of her first day, and she hasn’t quit trying to keep us on our toes ever since.

She began as one of those run of the mill fussy babies.  Screamy might define her a bit better.  From birth she could be heard across the house even without a baby monitor.  She is a zero-to-sixty crier.  She is either content or screaming.  There is no middle ground.  Her cry is something between a fire alarm and the screeching of a Ringwraith.

Around 2 months old she added coughing to her repertoire.  Her cough was dry, breathy, and most troubling of all – constant.  I have heard that cough before in asthma kids after running or jumping around.  I asked around to see if she could have environmental allergies, but was assured by many people that it takes 2-3 seasons of exposure before those kinds of allergies can develop.  We waited a bit to see if it was just a mild cold , but after a couple months we caved in and took her to see an allergist.

During a grueling two hour appointment, Molly was tested for both environmental and food allergies.  Many of the environmental ones came up strongly positive. (One of the allergists later told me she had the worst environmental allergies of any baby she has seen.)  And the big surprise was that she tested strongly positive for several foods as well.  She was 4 months old at the time.  We left the allergist office with several prescriptions including asthma medications and an Epipen Jr. and one very shocked mommy.  Around the same time we also began (with great success) treating her for GERD, which reduced her fussiness.

Over the last couple of months we have dealt with two major asthma attacks, some asthma misinformation from a well-meaning pediatrician (which caused the second attack) and muddled conclusions with regards to the food allergies. 

So for now we have established an asthma baseline for Molly’s maintenance medications, and her GI doctor and Allergist both agree that she should remain Top 8 Free with regards to foods for at least her first year, if not longer.  (The Top 8 Food Allergens are: milk, soy, eggs, wheat, peanuts, tree nuts, fish, and shellfish, plus apples and chicken, which she has tested positive to, and pears which she seems to have failed on trial.)  It has been hard to get used to having to give daily medications to a child who looks so well, but we have seen the repercussions of taking her off the medications.  The truth is that she is well because of those meds.

Other than that, Molly is doing amazing!  She is nearly 9 months old now, completely uninterested in solid food, crawling fast, and determined to figure out how to walk.  She waves Bye-bye and says Mama, Dada, Buhbuh, and Nana – which may or may not mean anything depending on what she is pointing at and who she is talking to.  She is a serious baby and saves her smiles for those who really earn them, and she LOVES to swim.  When we put her on the top step in the pool she will scooch her butt off the step and into the water and “swim” to us.  It’s very cute!

Sort of a continuation of her birth story:

Once Molly was out and breathing well and we had all settled into bed, the midwife mentioned that she heard a heart arrhythmia.  She had heard it during my labor but had thought it was just Molly moving around.  So she hung around for quite a while – the whole rest of the night and checked up on Molly periodically.  She left sometime between 8 or 9am and told us to get Molly in to see the pediatrician that day to check out her heart sounds.

We took Molly to see one of the pediatricians in our practice (not one we usually see, our first mistake) and had him take a look.  He said she sounded fine, but didn’t specify if he heard the arrhythmia.  And we didn’t ask. (Our second mistake.)  So we went home thinking all was fine and tried to get some rest.  Carol (midwife) came to check up on us at 7pm and wasn’t at all satisfied with the pediatrician’s reaction.  She could still hear the arrhythmia (and so could we, it was pretty obvious) and really wanted Molly to have an EKG.  Apparently as babies switch from womb to outside, there can be a little trouble for some little hearts.  She was really concerned that Molly was headed for such trouble.

Off to Phoenix Children’s Hospital Urgent Care we went.  They did a 3 line EKG, but weren’t satisfied that Molly was out of the woods.  They called ahead to get Molly a spot in the PCH NICU and sent us there so that Molly could have a 12 line EKG and see a cardiologist.  By this point I had been awake for over 42 hours with just a few snoozes and had given birth besides.  To say I was beside myself is such and understatement.  I SOBBED the whole way to the hospital.  I had no tissues and had to use my sling to wipe my face.  I was worried about Molly and I was so tired I couldn’t even think straight anymore.

We arrived at PCH a little after 11pm.  We were ushered through the flu-infested ER straight to the NICU and to a cozy little corner to call our own.  I had a recliner to sit in and a little barrier to provide some privacy.  Molly’s little isolette was right in our area and her nurse had a desk right there as well.  The lovely nurse-practitioner did her best to calm me down and answer all of our questions.  We decided that Jay should go home and get some sleep and come back to the hospital after getting the other kids off to school in the morning.

Molly was hooked up to all sorts of monitors and we settled in for a breastfeeding marathon and the long night began to tick by moment by moment.  I was informed that I could not sleep in the recliner while holding Molly.  But every time I set her down in the isolette she would cry.  So I held her through the night and caught 10 minutes of sleep when the nurse wasn’t looking.

Getting a 12 line EKG on a newborn is no easy task.  Her skin had not been washed yet and so the adhesives didn’t stick to her well and the probes would fall right off.  Then she was moving around and not wanting to be put down, so they couldn’t get a good read on her.  We tried three separate times (about 2 hours apart) before we finally got her still enough, and we still had to hold each and every probe on her.  She also got a rash from the contact with the adhesive.  Great.  But we finally got enough of a read on her and then I just waited for morning and for the cardiologist.  It was a very, very long night.

The cardiologist came through early in the morning, 6am I think, and talked with me and cleared her.  He said the arrhythmia was just a little hiccup in the top part of her heart and that she could have it her whole life and never suffer any ill effects.  But if it had been in the lower part then it would have been a concern and could be serious, so it was good that we brought her in.

Around 8:30 Jay came in.  I don’t think I have ever been so happy to see him in my life.  Finally I changed clothes and told him all about my night.  By 9:30 we were on our way home with our healthy little girl, ready to finally get some sleep.