I have not blogged in AGES.... sorry..... so....
A VERY brief recap...
Early September - Liam and I flew to Seattle for Caroline's RN pinning and flew back expecting to move as soon as we got home... that turned into more hurry up and wait... I should have known..
Middle of September... Nolan achieved the qualification of Aircraft Commander! GO NOLAN!
This means he can "sign" out for an aircraft and he is the PILOT (in charge) and he takes a co-pilot with him... :-) We are so proud!!!
September 27 - 1st visit to the Peds Gastro doctor in Raleigh
The day I learned that I was NOT just a crazy, new mom and that this team of specialists were going to help me, help Liam... And that it was not normal for Liam to load up on food at night before bedtime and not really eat much all day the following day...
The not so good news... Liam was diagnosed with failure to thrive (FTT) since he was born at the 25th %tile for weight and was now less than the 3rd %tile... His weight was the first to go... then his length.. We began Prevacid, increased his formula to 22, then 24, then 26 calories per ounce (over 2 weeks time) and began adding Duocal (powered "hidden" calories) to all baby foods.
End of September, Liam began pulling up!!!
Beginning of October, Liam clapped while music was being played at the rehearsal for Youth Sunday!
Someone began terrorizing our neighborhood... trying to open windows during the night (Thank God for Sandi - one night she barked - not the usual "Oh look a squirrel" - at 450am... ) A lot of sleepless nights after that and the fact that my neighbor's house had her window opened the following night...
October 20 - Liam's Gastric Emptying Scan
He drank 3 oz and it took between hour 3 and hour 4 for it all to empty out of his stomach... :-/ No wonder he seems to stay full all day long...
Nolan stopped in Dubai for a port call!!! :-)
October 21 - Movers came, packed and moved our stuff to the new house...
October 22 - Liam would only take 10 oz of formula.... all day long...
October 23 - Liam woke up with a dry diaper... :-/ This was to be his "make up" day of taking like 20 oz... he again only took 10 oz... so I called his pediatrician... he didn't seem to care, so I called the on call gastro doctor in Chapel Hill.. he said to take Liam to the ER for IV fluids...
After 5-6 hrs on IV fluids we were sent home... His white blood cell count was elevated, indicating he was fighting a virus...
October 24 - Happy 28th Birthday Nolan!
Another day of only taking 10 oz of formula... gastro doc said to take Liam back to the ER to get fluids, then to come to Chapel Hill on the 25th...
When we left the ER, Liam's discharge papers said to come to Chapel Hill in the morning for G tube placement.... :-/ (The ER docs had been calling the gastro doc to keep them updated)
Oct 25 - drove 2.5 hrs to Chapel Hill, got a speeding ticket along the way... had an 11am appt with the division chief of Peds Gastro.... learned that Liam had lost 2 months worth of weight gain and not grown any in length in 1 month... His head circumference was the only "age appropriate" measurement...
Liam was admitted to the 6th floor - Children's Hospital at UNC for FTT and food refusal... He was 15lbs 14oz at just over 10 months old...
My mom flew in from Texas... one day early from her planned arrival to visit for a week...
October 26 - trying to get Liam to eat... pedialite and APPLE juice - a first for Liam! :-)
October 27 - Endoscopy - started new formula, Elecare and medicine to increase Liam's appetite, Periactin
October 28 - Upper GI - Liam diagnosed with gastro-esophogial reflux - GER - started medicine to help Liam's stomach empty, Erythromycin, discharged that afternoon
I have to admit, I was more scared to take Liam home than I was when we brought him home from the hospital at 3 days old... I knew that if these medicines did not get Liam to start eating like he should, we would be back for an nG tube... :-/
We say that God's timing is perfect and it is. Nolan's port call to Dubai, came at the perfect time. Although I know it was extremely difficult for Nolan to see Liam in the hospital and not looking well, what a gift to not have to be flying, and to get to Skype with us each day that we were in the hospital! :-)
The first week home wasn't ideal, but each day got a bit better.... By the end of the first week, Liam had really taken to eating ALL day long... not just loading up at night and being good for the majority of the next day...
Liam became a different child in about 10 days... He had more energy, more of a personality and feeding him was not the battle it had become... He started drinking out of a straw sippy cup at Occupational Therapy - a thought to encourage him to drink the formula that he was only taking while he was "dream feeding" - eating while sleeping.. He was taking about 20 oz of formula and 12 - 20 oz of baby food! (Previously he would take about 14 oz of formula and maybe 8 oz of baby food per day) What a HUGE difference!
November 8 - Our 6 week (from our 1st appt) follow up and 10 day follow up from being in the hospital. It was the first GOOD doctors appt we have EVER had... Liam had grown in ALL areas... weight, length and head circumference...
His doctor and dietician were VERY pleased, as were Nolan and I! :-)
In the past month, since we have been home, Liam has gained TWO POUNDS! and is averaging about 32 ounces per day of food or formula.
He weighs 18lbs 3.5 oz!
He is weighed on Wednesdays by a visiting nurse who comes to our house... it is exciting to see him gain about 5 - 7 oz / week! (He was gaining that much in a MONTH!)
We have a long road ahead, as even with a gain of 2 lbs in a month.... Liam is still not up to the 3rd %tile... but I am more hopeful than I have ever been... I am eternally grateful for the team of gastro doctors who have changed Liam and I's life, for the better... no one will ever truly understand what our days and nights were like before, but they seem to have the best idea that anybody could have...
Liam was so uncomfortable every time that he ate, that he is described as having simply eaten just enough to keep his brain happy... "satiate"... nothing more, nothing less... so nothing for his body to use to grow in weight or length... :-/ And his pediatrician (who is no longer his pediatrician) said he didn't have reflux... and was "fine."
You can only imagine the many choice words I (and Nolan) have for him.
I started this post about 2 weeks ago and wow... things can change in just 2 weeks... we are now to 80% done with this deployment - so I updated that above and Liam's intake has dropped off gradually and then took a nose dive over the weekend, thanks to a nasty 103.1 fever... I am wondering if we are needing to up his dose of Periactin (due to weight gain) and/or begin cycling the medication, as that is common. I will be in touch with his gastro team tomorrow.
The good news is 2 steps forward and 1 step back is still progress. :-)
I always tell myself - One day at a time. and - Tomorrow will be better.
And the fact that Nolan will be home in roughly 70 days is encouraging as well!
Hoping the time between now and homecoming flies by.. Liam's birthday party is next weekend, the following week we fly to Texas to visit my family for 10 days, then back home to prepare for Nolan's return... oh and I have to do 8hrs of defensive driving in January since speeding to get a sick child to the children's hospital 2.5 hrs away is not a good excuse... whatever!
Keep in touch! I should post pictures... maybe in another 3 months? ha joking..
well maybe not - who knows!
