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

 

PREGNANCY PICTURES

Even though our pregnancy was full or worries, and what ifs, and fears for our little ones, we did do a pregnancy photo shoot.

We were still excited to welcome our daughter and I wanted to have those memories to show her, a few years down the road. So here they are:

MELODY's BIRTH

YES, I have not written anything in forever, and a lot has happened.

It is May 12th 2018 and I don't even know where to start.

Let's see... On Monday November 20th 2017, I went for my weekly scan and the neonatologist looked at Melody breathing in my belly for a long time. He then decided that it was time for her to come out because she was not breathing well. That was a shocker and I was not ready for that.

He sent me to Labor and Delivery and I had to call my husband to bring my hospital bag because we were about to have a baby.

My OB came (thank goodness), and at 6.24pm Melody was born via C-section.

I did not hear her cry. I inquired about her, and a few seconds? minutes? after, I heard a very faint cry and she was intubated.

The next morning, she was transferred to Children's Hospital of Dallas for her back closure surgery, and everything went well.

On Wednesday morning, I asked to be discharged so I could go see my daughter in the NICU. We got there in the afternoon, and my husband realized that they had extubated her. She was doing great.

A few hours later, the machines started beeping and her 02 levels went down drastically, and she turned blue.

That was the beginning of the problems.