My Girl

I just realized all the pictures on here are of her while sick. She's normally NOT sick and I don't mind saying, she's actually pretty cute.




Taken September 28, 2007

Hospital Visit #2

October 8th, 2007. SIGH. She caught a cold from one of her older siblings. Temp started mild then shot up to 104.3. Off to hospital we go, this time bypassed the ER and went straight to pediatrics.

The initial blood draw/test came back with her ammonia levels good. YAY! Specialist said we should still stay for "preventative" reasons. OK fine. Then came the hard part.

First attempt at an IV took about 6 minutes. I could tell something was off with it, it was red at the site and when she moved her arm down, it filled with blood. Not a good sign, btw. After having it checking and flushing it several times over the next 8 hours they realized it wasn't working, it had bubbled and they had to remove it. Strike one. I question putting her through the insertion of another one since this was all preventative and stress can cause the same metabolic crisis as the fever. They send in the IV team again, they look her over, say they can't do it, she has no good, visible veins. No pokes, but she screamed through the entire examination. Strike two. They call the Specialist who was incredulous they couldn't get an IV into an 11 month old. They say they can call up one more person.

Then comes the "best" pediatric IV nurse in the hospital. She was very thorough and a sweet lady but TWENTY FOUR MINUTES of attempts in her hand, both feet, arm and ankle she admitted defeat. Strike three. Poor Lainey was screaming bloody murder the ENTIRE 24 minutes. Time that sometime. It was torture on her, on me, but mostly her. (My poor crushed heart!)

The nurses stare at each other then one goes to call the Specialist. He was not happy. (HE wasn't???) He wanted her transferred to the hospital an hour away. UGH! We really didn't want to put her through another round of torture if this was just being preventative. After all, she was eating and nursing fine, not vomiting or anything.

She was sick with a cold but she seemed so much better once they gave her a suppository of Tylenol. (she wont take oral meds, she spits themout, gags then vomits) We tell this to the Specialist. Back and forth with him with end result being that we would take her home and back for daily labs to monitor. So home we went.

Fast forward to today, October 10th. I take her to the lab to get the blood draw to check her ammonia levels. SIX jabs. SIX! Mind you, these aren't little pokes, these are insertion of a needle and when they miss the vein, they "fish" around in her little arm for it. Its just horrid and here has got to be a way to get blood from babies with "uncooperative" veins! OH, did I mention that NONE of the six resulted in any blood? So it was all for naught. (Can you tell I am frustrated?) Waiting to hear back from the pediatrician for the next idea as to what to do.

First Hospital Trip

It was bound to happen at some point we knew but all of us were praying that little Lainey would make it through her first year without a hospitalization. Unfortunately that was not to be and at the young age of four months, Miss Lainey spent a week in the hospital.

Valentine's Day she started getting a cold that each day got progressively worse. She had a mild fever of 100.7 and we gave her infants Tylenol. An hour later, she felt warm and her temp was 100.9. Another hour later, it shot up to 103! Clearly at that point, my husband and I rushed her to the Emergency Room and called the metabolic specialist en route.

He called the ER ahead of us and thankfully, very little time was wasted getting Lainey into a bed and an IV started. None of the ER doctors had heard of her condition but thanks to our pediatrician and her specialist, (and our protocol letter that outlines exactly step by step what they are supposed to do) she was given the treatment she needed and admitted. (IV fluids, IV Carnitor and a whole slew of tests)

She was there FIVE LONG NIGHTS and six days. UGH. They tested her so many times! She had a ton of nasal congestion and the nurses would come in and pour saline up her nose and use a tube to suction it out -- it was HORRID to watch and to have to hold her down for that was awful. She had a flu test which if you haven't had or seen one performed, consists of inserting two wires down the nose to take samples from the back of the throat. LOTS of blood draws (that have to be from a vein, which in a four month old are not even visible)

Topping that experience off, the first night she was there, I got sick myself. I was vomiting for two days and barely able to function. I had to stay there since Lainey was exclusively breastfed so thankfully my husband also was able to stay to help me because I was so sick I could barely function. Did I mention there were no beds for us to sleep in? Two patio like chairs and this one chair that unfolded into a flat bed like surface.

The nurses there were great and didn't even mention the one parent a night per room rule - we are lucky to have such a great hospital nearby. The above picture, that mesh on her head was there to keep the IV in - it had to go into her head it was the only place she had a large visible vein.

It ended up that she tested positive for RSV except that she had no chest issues at all - even the pediatrician said she'd never seen a case where a child had RSV without the chest issues (The R in RSV stands for Respiratory, after all) Her thing was all sinus.

Leading up to, during and after, Lainey ate just fine. Never was she listless persay, but her body kicked up the temperature and that was the one sign that told us to haul her into the ER in a hurry.

Our Story

Lainey is our fourth and final addition to our family. My husband and I are creeping up on our 15th anniversary together this March. (Yes, I got married young and started having kids young but we knew we wanted a lot of kids and I had some fertility issues - anyway, another story for another time)

My 5 year old has viral induced asthma but other than that, they have all been a picture of health their entire lives. How shocked we were to get the phone call six days after Lainey's birth alerting us to this mysterious metabolic disorder that the doctor three times told me was "life threatening" I ended up in tears on that call and had to pass the phone off to my husband.

That first week was filled with reading everything we could get our eyes onto regarding MCAD and lots and lots of tears on my behalf. It was just so overwhelming this fear that at any point she would need to be rushed to the hospital and put on an IV to save her life. Take too long and risk coma or death. I honestly don't think I slept the first two weeks.

At some point I was able to center myself - I think it was when I started hearing about how so many other parents had lost their beautiful children to MCAD but not because they didn't get to the hospital in time, BECAUSE THEY DIDN'T KNOW THEIR CHILD HAD IT.

Our metabolic specialist has told us that he has never lost a patient from MCAD that was diagnosed with it prior to the death. Key in managing the condition is knowing that a child is afflicted with it and watching for the signs of distress.

If you are reading this and you have a newborn diagnosed with MCAD, read the above paragraph again. And again. Once you know about the disorder, you can manage it and your baby will be fine.

Useful Products

These are two items that have proven invaluable to me since my daughter's diagnosis with MCAD.

First is my new Timex watch that not only has three alarms on it (to time her medication) but also has a resettable countdown timer. Right now she has to eat every 3.5 hours so all I have to do is hit one button and it starts to countdown from 3 hours, 30 minutes. At any point she eats before then, I just hit stop then reset and it reverts back to the preset 3 hour 30 minute mark. Its not the most fashionable of watches, but it does everything I need it to, its waterproof and the alarm on it isn't overly loud. The one I have is pink but it comes in about 10 colors, including grey and black so you should be able to find at least one color you like. The official name of it is Timex Women's Ironman Triathlon Sleek 50/100 Watch #T5D601 is the model number for the pink one. I bought mine from Amazon for $33 and it qualifies for the super saver free shipping.



Second is this great medication dispenser. (Note: My baby daughter is on Carnitor, not all babies with MCAD are given this medication) She has to take it every 8 hours - this includes a 1:00am dosage/feeding so it made the most sense to us to purchase three of these.

We keep two filled at all times and the third is kept in rotation during the cleaning and drying. The best feature of it is that it comes with a cap/lid so if I have to bring it with me on the go, its contained and it doesn't spill. My local grocery store carries these in stock but I also found them at Amazon online. The official name is Oral Medication Syringe by Apothecary Products, Inc.