Friday, November 2, 2018

LIFE AS A MOM OF A BABY WITH SPINA BIFIDA ON A TRACH VENT AND G TUBE

Do you know that feeling you had when you just became a mother? The happiness of course, but the exhaustion? The constant exhaustion.
Thank goodness it only lasted a few months right?
Well for a medical mama, the newborn phase doesn't fade.

When I became a mom, I graduated in so many other fields in a matter of days, some with crash courses, some without.

On top of a mother, I became a respiratory therapist: Having a baby on a trach with a ventilator, I administer breathing treatments, several times a day, Sometimes, if she is sick, her breathing treatment session can last 1hour and a half. Sometimes I have to give her 30 minutes treatments every 2 hours if necessary. I have to pat her back and chest for some time, in a specific way in order to help her secretions out of her lungs.
I  have learned and do her trach care every single day, which consists in removing her trach ties, while her dad or nurse still holds the cannula in place, so I can clean around the stoma and her neck, dry it, apply ointment if necessary and replace the trach ties and make sure it is secure. I have to suction her trach, and once a week, her dad removes her cannula out of her throat and I insert a new one. I clean the one I removed and place it back in her emergency bag.

 A nurse: I administer medication and food using serynges, through a g-tube, check her temperature several times a day, clean and care for her g-tube, replace it when necessary, check any symptoms she has. Clean her extensions, serynges, nubulizers... I cath her several times a day, check her fontanelle, her stomach. I have learned medical terms I had never heard of before, I know about way too many types of surgeries and conditions.

 An occupational and physical therapist: She has an OT that comes every Friday and she teaches me what to work on during the week to help Melody hold her head better, gain core strength, use her hands, bear weight...

  A hearing therapist: Melody's hearing therapist comes once a week also, work on sounds, what can she hear and not. We sing her songs, teach her basic things like lifting her hands up when we ask her too, we learn sign language, how to clean her ears and hearing aids.

 A feeding therapist: I have learned some massages of her lips, cheeks, tricks to have her tongue move in a specific way.

 A technician: With the quantity of equipment I have at the house, I have learned how to change the tubings that connects her to the ventilator, replace parts, recognize different alarms and do what's necessary to have them stop, and even  repair broken equipment with medical tape until the company can deliver something new.

 An assistant: I spend countless hours on the phone, waiting, writing down, screaming, explaining, repeating, about broken equipment, insurance, new orders, scheduling appointments, follow ups, medication deliveries, new equipment deliveries, supplies deliveries,... I am sure I am forgetting a lot here. Oh and then, the hospital's automatic stuff calls me to answer surveys after each appointment... No thank you.

I used to be a wife and Customer Service Representative. I quit the latter but am still currently hired as a wife, (I joke by saying hired of course, though sometimes at that rythm I wonder if my contract will be terminated), so I still cook, clean, do the laundry, ironing, get the groceries, some gardening and decorating our new home (when finances allows), feed the pets, clean their cage, pick up the dog's poop in the yard, mow the lawn, weed...

I work all those jobs every day. I don't get paid. I don't get vacation, or time off. My breaks consist of a quick shower that has been scheduled with my husband or the nurse if I have one. This is the most tiring job I have ever had, and still, I do it everyday to the best I can because SHE is WORTH IT.

In all that chaos,though, I have met and gotten in contact with fantastic other medical mamas, who support, help, and advise me. They are always here when I need them, because like me, they care for their kids the best they can. And they get it. They know the feelings, the hardships, and the rewards.



Tuesday, July 17, 2018

DIAGNOSIS DAY ANNIVERSARY

Today marks 1 year since the diagnosis.

We have come a long way, from not knowing if we were gonna continue the pregnancy, deciding whether to do fetal surgery or not, giving birth and being in the NICU through 5 surgeries, and then dealing with Trach/vent, g-tube, every day care and life, nurses, hospital appointments, therapies.

Despite all the fear, the worry, the hard work, we have NO REGRET.

Melody is getting better every day.

We started weaning her off the ventilator and this has been huge for us.
She needs the ventilator when she sleeps, but otherwise, if she is awake, she can breathe on her own. It allows us to do a lot more with her and helped her make more progress with her head control for instance.

 This is my favorite thing to do. Mommy time, without all the tubings everywhere.

This was on July 4th. Progress in sitting up. She still needs support but this was impossible a couple of weeks before this picture was taken.

We also moved to a new house on Memorial Day weekend and it has been great.
 Her new bedroom is a little bigger and it has allowed us to put her crib with all her equipment and even a daybed for cuddle time.




 This is the organization for her supplies.
We have a big cabinet right by her bedroom door and it is perfect.

And the traditional shoe hanger behind her door for all small stuff that we need on hand.

Here is her bathroom, that I am still working on.

We chose a house that is 1 story because we don't want to deal with stairs and all her equipment. It is too dangerous and too tedious. The house has a large entryway, large doors also, so if she needs a walker, or a wheelchair, it will be easily accessible for her.
We had all the floors redone with beautiful tiles and it is easy to roll her vent or a stroller for instance.




The entryway and view on the dining room

 Being Patriotic on the World Cup. After all this baby is 50% American and 50% French.
 With her hearing aids, and off the vent.
 Chilling on the floor, off the vent
This was during Hearing Therapy.






Thursday, June 7, 2018

LIFE AT HOME

We took our baby home on February 8th 2018, exactly 80 days after she was born or 11 and half weeks.

The ambulance crew made sure we were all set in her bedroom with her equipment, and the nursing company was also there, helping setting up everything, and we had a nurse ready to start with us.


She woke up the next day with a smile.

Resting on the couch

Her First Valentine's Day, with a visit at the Pediatrician.

Our first outing was quite hectic and required 3 people to put Melody in the car with her equipment.
I eventually became more proficient with going out. I got really organized, and also planned for a lot of what ifs.
On top of taking everything with us, I also have a box in the car with everything in it, just in case.

March 1st 2018

March 16th 2018

March 31st 2018

RECOVERY and GOING HOME


Now that Melody has had her surgeries, we are going to classes to learn for her care.

They taught us the vent settings, how to change some settings, how to change the circuits, and how to care for her trach.
Everyday we will have to remove the trach ties, clean her neck, clean around her stoma, put new trach ties and a new guard. And once a week we will have to remove the cannula and replace it. This was a little harder, but eventually, this too became our new normal.

As for the G-tube, we only have to clean around it daily and turn it. The g-button is easy. And we are supposed to change it every 6 months. Not bad at all.

We started the classes at Children's hospital, and then we got transferred to a step down unit down the road for 3 weeks, to finish learning for her care.

I have hated every minute of her being at that rehab hospital. She did not get as much care, they were not coming when her alarms would go off. It was a nightmare for me and I could not wait to go home.

We completed each class we had to do as soon as possible and we got to go home on February 8th 2018.

 Ready to go home.




Getting out of the ambulance.



And finally in her own bed.
































Monday, May 14, 2018

TRACHEOSTOMY and other surgeries





 No need to mention that we spent Christmas in the NICU right?
Santa Claus came and Melody was so spoiled. The NICU really organizes a lot for the children.




The breathing tube has been such a pain. She hates it. She can't move and we hate seeing her like this.

The time has come for the tracheostomy.
We have been informed  of the process and all that goes with it. And it is a lot. But at this point we are ready for it... kind of. We want to see her face, we want her to be able to move, and most of all, we want to take her home.

So on December 27th 2017, the trach was scheduled, along with a g-tube for feeding, and a Nissen fundoplasty to avoid reflux.

3 surgeries in one day, on a 5 weeks old baby.

But we could finally see her face... and then we bombarded her with pictures because she is so darn pretty.




























NICU LIFE and SHUNT SURGERY

After her episode of turning blue suddenly by dropping her O2, she was put on a Cpap to help her breathe.
 As you can see on the picture above, the breathing mask is not the most comfortable thing. She hated it.

Even with the breathing mask on, she kept having some desaturations, meaning her 02 levels kept dropping.

This is when they started bringing up the Tracheostomy.
Basically, they told us her brain stem was immature and this is the part that controls the breathing and swallowing,and that was what causing the breathing issues. They also told us her vocal cords are paralysed. However, we still have doubts about this because she was scoped right after being extubated. So we know they could have been swollen and not necessarily paralysed. Her lungs were healthy.

Well that was not an idea we were ready to accept. We decided we wanted to wait a little because the trach idea is scary and second, we wanted to give her a chance to get stronger. She was born at 37 weeks and 4 days, and even though they did not consider her premature, in our mind, she was still born earlier than she should have. 

After 4 days, I finally got to "hold" my baby. As you can see, it was not ideal, but better than nothing.

And 10 days after birth, she was finally allowed to be on her back.

 DECEMBER 2nd 2017

 As you can see above, her poor feet were pricked so many times everyday, to check her blood gas, she had the iv in her hand, sensors everywhere and the mask.
We did not know yet but it was going to be a while until we get to see our baby's face.

Here I finally was able to bring some of our own stuff and she was in her own sleepsack and hat instead of NICU stuff. And she was also re intubated.

DECMBER 7th 2017


 Melody's night nurse dressed her up and that made me so happy to see her like this, all pink.
I have to say we have loved our NICU nurses. They were phenomenal with her. This specific nurse became her permanent nurse, meaning that every shift she worked, she worked with Melody. I loved that because she obviously knew her well.

DECMBER 9th 2017


 Daddy was on binky duty.
That baby loved her binky but with intubation, it was hard for her to keep it in her mouth so daddy became an expert binky holder.

DECEMBER 12th 2017



 Melody got a shunt placed to drain the fluid accumulating in her brain (hydrocephalus), a condition that accompanies Spina Bifida often times.
That baby is 2 weeks old and this is surgery number 2.

DECEMBER 14th 2017







 DECEMBER 20th 2017

1 month old


DECEMBER 21st 2017