March 28, 2013

Past Easters

 It's the girls 3rd Easter and once again we will be spending it in the hospital. Hannah had was admitted 5 days ago(the 24th) for an infection in her lungs. Hopfully she will be healthy enough and off oxygen to be able to get out of her hospital room and celebrate Easter at Jeneece's Place.

                                 2011:  6 days old



 2012: 11 Months old


March 16, 2013

No Sew DIY Tutu

Tulle - 4 yards (for a "8/16" inch long tutu)
Yard of ribbon 
measuring tool 

Measure the length of  desired tutu.. I choose to do the length of my child's hips to knee which is "8cm".
Times that by 2... "16cm"
Cut Tulle in "16cm" strips

Then roll the "16cm" strips and cut them into 4cm wide pieces.

Put ribbon around waist of the person the tutu's for.. put a pen mark where the ribbon overlaps to show you how long to make it.
Take 2 pieces of tulle and tie them in a knot as shown in the picture bellow.

When using two or more colors its best to do at least two of the same color to make it stand out. 
Trim the ends as you go to prevent uneven pieces. 

March 11, 2013

A year since the 1st time we talked about Tracheostomy

   A year ago March 13th was the first time I had ever thought about having a child with a Tracheotomy  I remember it like it was yesterday, its hard to believe it already been a year. Hannah had just been intubated for the second or third time in a month and a half, I was sitting in her room in the NICU with my family preservation worker when the doctor came in. Hannah had just been intubated and we were discussing why she needed to be intubated(high co2) and that they couldn't figure out why she was failing the thrive on Bipap.. after all she was just on low flow for 6 months. The doctor told me that they couldn't keep intubating her for high co2, excavating her to bipap and having her co2 go up and need to intubate her a week later. The doctor said that they would do a bronchoscopy and try lung steroids.. I ask what makes a child qualify for a tracheostomy.. and I still regret those words coming out of my mouth. After I asked about a Trach that was the plan. They said they would try everything they could not to trach her but for the month leading up to her trach that's all there was talk about.
   They did a (not very in-depth) bronchoscopy and said they didn't see one of her vocal cords move but that they weren't considered and they didn't see anything reason why she couldn't breath on her own. They tried steroids and she did amazing on them. She was even off oxygen on Bipap and seemed like normal Hannah again, had energy to do things. But once they stopped the steroids her breathing started to get worse. By this point all the doctors had come in and told me she needed a Trach. I managed to only cry a hand full of times during her hospital stay and this was on of those times. It just wasn't fair.. How could she go from breathing so well on low flow to this.. so much would change with a trach and so much she wouldnt be able to do..
   They did another bronchoscopy, this time it said that they found that her left lung had Bronchomalacia and her left vocal cord was paralysis. Not the kind of news you like to hear.. but at least it was only one lung, and one vocal cord.

   Bonchomalacia is the walls of the bronchial tubes, the main stem bronchus collapses while exhaling. 


Vocal cords effect breathing because they open while you inhale, close to keep the air in your lungs and open to exhale. Hannahs stays open so air seeps out around the vocal cords making it extra hard for her to breath with Bonchomalacia. 

March 08, 2013

Example of a custody order

Hailey's heart appointment & Hannah's second hearing test

   After my pediatrican told me they the last scan Hailey got wasn't that great and that they were really concerned about her PDA and wanted to see the pulmonary stenosis, I thought we had better spend the night in Victoria the day before the appointment. Nothings worse then a cranky 2 year old after a 3 hour drive.... So Hailey, blondy, gingy and I stayed at Jeneeces place..
   Hailey woke up more then a new born that night.. I would bring her to my bed so she didn't keep disturbing everyone else . She would calm down go back to sleep and then a little while after that would get mad that she wasn't in her crib and couldn't stretch out freely.. So I would put her back in the crib. Then a short while after that she would wake up again and we would do it all over. She woke up for good at 5:30.. She always sleeps past 7. So I spend the morning very over tired worrying that she will be to cranky to corporate in the appointment..

an hour into waiting someone put on dora for the girls to watch.

Then we spend close to two hours waiting for the doctor.. for a scheduled appointment..... To then be told my daughter is good... well not good, but that she didn't need her PDA closed, it was his opinion that it was shrinking and he couldn't hear it when he listened to her chest. He said that the Pulmonary stenosis most likly wouldnt get worse if it hadn't gotten any worse already and that he would like to see her again in a months time. There was no scan done... just a quick listen to her chest..  and by this point im SO over tired and annoyed that my pediatrician told me the complete opposite of what he was telling me.. This pointless appointment used up 12 hours of my nursing time leaving me with a fair amount of gaps in this months nursing.

 While I was there I figured I might as well ask questions about Hannah since I had never actually met him and  shes her cardiologist . I asked if when she start to get healthier I would see her meds decrease like her sidenifal.. He didn't seem to think it would ever decrease making me think shes going to be on this med for the rest of her life... He also said to me that it was his opinion that she might never get ride of her trach because of her pulmonary hypertension .. and I'm going to choose to ignore his opinion about her trach because he's a cardiologist.
  The only plus side to this appointment in Victoria was that I got to stop by the court house and pick up the court order proving I have custody!!!

After our pointless appointment we went and fed ducks.. 
only seagulls are like  vulchers and it turns out im afraid of them

  Hannah had her second hearing test in the last two months.. She still has fluid in her ears and was failing to hear quit noises. They put this head piece on her head and she couldn't heard the quietest noise.. So I instantly start to freak out.. no one explained to me what this head piece was so I automatically thought it meant she needs hearing aids... false alarm, it was testing her if her ear drums worked under all the fluid.. like how they would work if their wasn't fluid. So that's great!
  We go for another hearing test in 3 months and if nothing changed then we meet with ENT for what to do next.... most likely tubes in her ears.

Her glasses are getting a little to short for her head now so after the hearing appointment we went to try on glasses.