High drama in the Erickson household

The drama that is our lives...here goes (as told from a father's perspective).

So, Emily has been fussing every time we have gavaged her, the last 24 hours.  We called our Peds Dr. and she said we might have put the tube in a little far and to pull it back out a centimeter.  This made sense.  So, we lay Emily down on the bed and pulled off the old tape, and pulled the tube out a centimeter.  (Mind you, K is sitting on the bed watching everything, because she is really concerned why Emily is crying).  B is holding Emily down and I am keeping a hand on a flailing arm and trying to cut the excess tape that is holding down the gavage tube.  Somehow, as I am snipping the tape, I snag the tube with the scissors and snip it in half.  We only have one tube.  Horror, anger, frustration, and a whole lot of bad words come to my mind as I process what I have just done.  B and I managed to stay pretty calm as we sort out what to do now. 

Remember it took two trips to the ER, 9 hours, and a whole lot of stress and lost sleep, to finangle one of these tubes out of the Doctors, and convince them we knew what we were doing.

B got on the phone and called our Pediatrician who wrote an order for B to pick up another tube at RCH (30 minute drive).  B took off, and I stayed at home to bathe Emily and put both girls to bed.

After bathing Emily (first mistake), I decided to try and get her to bottle feed, since she had eaten  2 1/2 ounces on her own before bathing (second mistake).  Emily ate 1 ounce of formula, then started playing around with the nipple so I figured that was good enough-after all she had just eaten 3 and 1/2 ounces on her own! This made me pretty proud!  (pride commeth before the fall) As I was picking her upright, she started to gag.  Immediately fearing a gag/vomit episode, I tried to position her so she couldn't let loose. 

No such luck.  Emily completely stopped breathing for 2 seconds, then let loose with projectile vomiting, spewing a geyser of all the milk I had managed to get down her (again, remember what the Bible says about pride? God has HIS little ways of reminding us-I am convinced!) 

This vomit went all over me and the couch.  3 and 1/2 ounces may not seem like much, until it is all over the place, then it feels like a gallon.  I promptly strip and start cleaning up.  As I am cleaning myself and Emily, Emily is happy as a clam, sitting in my lap, pulling (did I say pulling? I meant ripping) chest hair out.  As I look up in agony, I make eye contact with droppy-eyed K, sitting atop a pile of blankets and cushions, she has placed in the middle of the living room.  I realize she hasn't said a thing in the last few minutes, completely ignoring the drama going on around her.  I asked her if she was tired and she nodded her head and said, "Daddy, nite nite!"  I put her down without any problem, finish with Emily and put her down. 

I then call B to find out if she had gotten the g-Tube.  She said the tubes at RCH were for preemies, meaning they were too small for Emily-Yeah I just said something was too small for Emily-what a great feeling.  Except this left us in a lurch.  We still needed to feed Em.  B then drove over to Loma Linda ER and managed to convince them to give her a tube, then literally ran out of the hospital, before they could change their minds.

This is the story of our lives.

9 Months and Update

Somewhere in this chaos that is our lives, Emily turned 9 months adjusted! Yipee! We had to put the gavage tube (feeding) back in last night so before we did, we snapped a few photos for her monthly pics.

Would you ever know this kid is sick? This is what I am talking about. Smiles all around. At this point, it is 6pm, she has only eaten 6 ounces all day. She has cold symptoms, a fever and is getting rapidly dehydrated..."oh, but you want me to smile and look cute for the camera? Sure, no problem, Mom." She kills me. Just the cold part of this knocked me out for days. It's a weird feeling to know that my 9 month old daughter is tougher than I am!

For those keeping up, the rule was 8 hours without a wet diaper, bring her back to the ER...which THRILLED us. We know our girl and that was why we asked for a feeding tube that we could place WHEN she refused to eat. We were at 6 hours with no wet diaper when we inserted the tube and gave her four ounces. We did hit the eight hours but since we had just given her food, we waited a little longer and fed her again. Today she seems all right except that she has thrown up most of what I have given her. Her fever has dropped but she is still not eating orally at all. I just want to get her through the weekend with no more trips to the ER so we can get her in to see her own drs...the ones who know and understand that she is not a normal one year old and may need non-standard care.

Developmentally, she has pretty much stalled out. I understand this happens to these babies when they get sick but I think it would have happened anyway because her next skills are all eating related and walking. So no new skills to report, just getting better at the old ones. Everything goes in the mouth except food and her hair is finally growing in, except where they shaved it for IVs when she was in the NICU...

I decided last night that a REAL break for a parent is someone watching your kid while you stay at home. I realize I am an introvert at heart so many may disagree, but this was the first time M and I had a 'date' in our house and it was SO relaxing!! We rented a movie and ate popcorn for a total of about $2 and didn't have to deal with traffic or listen to a complete stranger's stupid conversation while we were out. :)

I miss my little girl (the talking one) though and can't wait to see her today! I asked M if this is how he feels after a long weekend of work and he said yes. That is sad.

Thank you for your prayers and please keep them coming. M and I need to completely kick this cold as well, but with the lack of sleep and sitting in ERs for hours a day, we are having a little trouble finishing it off.

Past Few Days

Well, since we spent most of our thanksgiving holding Em or in the hospital, I suppose an update is in order...

Monday we took the feeding tube out of Emily's nose, hoping she was past her issues with not eating and it looked like we were right. She ate like a champion on Tuesday. So on Wednesday, we headed out to Grandma and Grandpa's place for tday. By the end of Wednesday, her oral aversion was back and she had only eaten about half her normal formula and no solids. We chalked it up as bad day and went to bed.

At 4am Thursday, she woke up crying and coughing, so I grabbed her, and when I turned her upright, she started to choke, so I turned her sideways...at which point she promptly threw up some nice green throw up. She did this three times in a very short time and her head felt like it was on fire...we decided it was time to take her in to the hospital. So off we went.

Her rectal temp was 103.9 and she was satting well but not great. They tested her for a UTI (urinary tract infection) and took x-rays for pneumonia and an intestinal blockage (explains green throw up). They all came back negative. Her fever broke at 7am, so they sent us home around 10am with instructions to watch for dehydration and to bring her back if she got worse.

So, my child who doesn't really like to be held and NEVER has a moment where she is still (even while she eats, her legs kick back and forth), spent the day sleeping on warm bodies and making sad, soft cries and eating one to two ounces at a time.

We had a wonderful meal with Grandma and Grandpa...this pic is only here cause her feet were cracking us up. She ate the whole meal with her legs like this.

We also went for a walk so we would feel better after over-eating and K could have some fun playing at the park.

K LOVES her Grandparents...but this might take the cake...we were in the other room trying to decide if we should take Em back to the hospital and being all serious and I walk out to see this. I started to smile and laugh as she completely ignored me so she could sit on her pillows and read her book with Poppy.

By 10pm, Emily had only eaten 10 ounces of formula and still had a fever, so we were very concerned about dehydration. After calling the nurses line and getting advice from several sources, we decided to take Em back to the hospital. They drew her blood and checked for infections. While we waited, they put her on an IV to get her fluids back up. Everything came back negative (again). We were released at 2am with a new nasal gavage tube that we are to insert if she doesn't eat today.

Right now she is crawling around and doesn't seem to notice she has only eaten one ounce the whole day.

It is ironic...a week ago, she had one symptom - not eating - and they wanted to admit her to the hospital 'to watch her'. I fought and said no. This week, she has a fever, cold symptoms, won't eat and is throwing up. I took her to the hospital last night, hoping they would take her and watch her and just please help her!! But this time around, they don't even ask, they just send us home with instructions that WE are to watch her.

Anyway, after being up for 24 hours straight, M and I came home with Em and crashed while she slept. K is with Grandma and Grandpa and they have agreed to keep her for one more day and M will take today off so we can sleep some more.

So, on this Thanksgiving Day I am thankful...

Thankful that we were at Grandma and Grandpa's place so K has people who love her dearly to watch her while we deal with Em again. Thankful that we live so close to great medical care.

Thankful that we have a little girl at home who, despite all her issues, hasn't been hospitalized since the day she left.

Thankful that we are now the experts on her and her care.

Thankful that she has her first big something of the season and she is still with us.

Thankful for M's job that allows him to take time off when we need it.

Thankful that we have a GREAT pediatrician and we can rest knowing she will see Em soon.

Thankful for a little girl who smiles and smiles no matter what is going on. We spent half an hour trying to get Em's blood and she still flashed a smile at the nurse when she was all done.

Thankful for K. I can't say that one enough...she is a quiet little spitfire in her own right but her smiles and 'talking' and energy for life keep us rolling and remind us that this too shall pass. Some day.

Thankful that two days ago, I was sitting on a swing, freezing cold, with my oldest daughter on my lap and watching the sun set while she told me the color of every 'dee-dah' (airplane) that flew over our heads.  Thankful that I live so much deeper than I ever have in my life.  That joy is so much more joyous and that frozen ears make me happy because they are spent with my girls.  

Thankful that there are people who care and hold us up in prayer. Thankful for family.

Thankful for God's mercy and grace. That there is always 'more and more' for us to ask for and tap into. Thankful that He will never leave us or forsake us. Thankful that He has a plan for all this and I can rest knowing it is His responsibility to make all this work out for good. And thankful that He died to forgive me of my sins and give me everything so I don't have to try to find it on my own.

I hope your tday was great and you feel blessed for all God has given you. God bless!!

Yeah

Emily has her first tooth!! Yipee...it popped through on Thursday. Sorry it has taken so long to update, but I am still sick and the week has been long. Em pulled her tube out Thursday night but we had a spare from when she first came home and rather than make another trip to the hospital, we consulted her pediatrician and put it in ourselves. She does not like having it in but we have no choice right now.

Anyway, I took the girls down to Grandma and Grandpa's place to get some help during our workweek (the weekend) and it turned out to be a good decision as M now has the cold. As always it was nice to be there and watch the girls interact with their grandparents...AND to get some help, particularly with feeding Emily.

I know many of you know what a slippery slope we are on having reinserted the nasal gavage (feeding) tube. We are just praying that she will not get lazy but will decide that she likes to eat once again. Right now I am worried because her tooth is through but she is still in complete oral aversion (doesn't want anything near her mouth). Your prayers are coveted as the next step would be a g-tube (a permanent feeding tube inserted into her abdomen). I really don't want this but if it means she can get all the nutrition she needs and I don't have to fight with her all day long, it might be best. Right now I am praying she will start to eat again but preparing my heart for whatever is next.

I love these deep conversations with Poppy.

This cracks me up every time I look at it. 

And this is how most pics with the girls come out...Em looks for K and laughs at her and K looks back very unamused.