I have not written on here for a while. I feel like things have been happening in a whirlwind!
Last week on Monday, December 9, Hazel Grace was still at 2 liters, 30-40% O2 on her nasal cannula. They were still trying to get her to take all of her feedings by mouth, and she was just having a hard time of it and had been on the same settings for a while. She had just plateaued. She wasn't getting worse, but she just wasn't getting better, either.
The problem was that while she was feeding from the bottle, she was having to work so hard at it that towards the end of the feeding, she needed more breathing help. If she had not had to feed by bottle every 3 hours, and if she was not being pushed to take all 60cc's every time by mouth, then she would not need so much breathing help.
I knew that the policy at the hospital was that Hazel could not come home on a nasal cannula at 2 liters. She had to get down to .5 or.25 liters of air a minute at 100% O2 in order to be let home. However, she could come home with feeding help in the form of a G-Tube.
But a G-tube is invasive. IT requires surgery to insert and so Hazel would have to be put completely under in order for the procedure to take place.
Plus, because she would be so sedated, she would have to be intubated again.
And that's scary. We all worked so hard to get her extubated, it was a very scary thing to think of putting tubes back down her tiny throat and into her lungs. What would happen after surgery? What if she back-tracked and couldn't extubate again? The doctors said that a lot of times with the tiny ones with chornic lung disease, like Hazel has, it is hard to extubate them and it takes a few days after surgery to get them back to where they were before.
Could we take that chance? Could we bear to see Hazels face and mouth covered again?
To not hear her cry?
But then, Hazel looked up at me and smiled and made her little 'coo' noise, and I knew she had to come home. Whatever it took, it was in the best interest of Hazel to get her home as quickly as we could. Come what may, however hard it would be for us, Hazel Grace had to get home.
This idea was brought home to us with a bang when the nurse that was 'caring' for Hazel was too busy with her other 2 babies, and so another nurse in the hall had to come and do her cares, and that nurse told me that the hospital policy was to not pick the babies up much because they didn't want to spoil them and make them want to be held all the time.
That meant that our baby, sweet baby Hazel Grace, just lay there all day by herself waiting for Jimmy and me to come to her in the evening and pick her up and hold her, and that was all she got apart from the holding that was necessary to feed her.
So, Jimmy and I, on that Monday, December 9, 2013, started a conversation with the doctors at the NICU in Children's Hospital, to have Hazel Grace get a G-Tube and come home.
As soon as that process was started, as soon as we said to back off the feedings and just concentrate on breathing, Hazel Grace weaned to 1 liter, then .5 liters and then to .25 liters in a matter of 3 days.
Then the call came to set up a time to talk with the surgeon to set a date for the surgery. We asked a lot of questions and said that we were comfortable with the procedure and that we were ready to speak with the doctor at any time.
While we were waiting for the call to set up the appointment, we received a call instead that said that we could have the surgery as soon as the following Monday or Tuesday, if we were ok with that. We agreed that we were and so we waited for the call to let us know when. On Thursday, December 12, Jimmy and I went to see Hazel in the evening at about 9PM and we saw that Hazel had an IV in her foot. I figured that it was just preliminary testing that they were doing to get her ready for surgery the following week.
We stayed with Hazel for about 15 minutes or so, and there was no sign of her nurse, so finally, when someone did come in, I offhandedly asked what the IV in Hazel's foot was for.
'It's for her surgery tomorrow'
Jimmy turned white as a sheet, and I was shocked. Really? Our baby was prepped for surgery in the morning of the following day and we didn't know it?
After the initial shock wore off, Jimmy and I concluded that even though this was faster than we had planned on, since Hazel was already prepped, why make her wait? So we called Jimmy's work to be sure he could take off the next day, and we signed the consent.
We were told that the surgery would take place between 10AM and 1PM. So, we told them that we would be there at 10AM to see her off and wait for her to come back.
At 9:30AM, we got a call to say that they were ready for her early, and was that OK. Once again, we figured that Hazel's comfort was more important than our desire to see her, so we said that we were on our way, but that if she was ready, to take her on in. We told the nurse that we would wait for her in her room in the NICU, but the nurse told us to wait in the surgery waiting room instead. She said that the procedure would take about 30-45 minutes, and that the surgeon would come out and see us when it was over.
We agreed and made a beeline to the surgery waiting room as soon as we got parked.
1 hour, 15 minutes...
1 hour 30 minutes...
The time ticked on and we didn't see anyone come out. Needless to say, I was starting to get a bit panicked. What could have happened to make something that should be so routine take so long????
Finally, a nurse came to us and said,
"Hazel's up in her room. She's been there a while. We didn't know where you were!"
Um....we were told specifically to wait in the surgery waiting room!
Anyway, we ran up to her room and saw our sweet baby, not hooked up to tubes down her throat, but back on the nasal cannula instead! I was so relieved!
I looked around for the surgeon to see how everything went, but he was not there. In fact, we are still waiting for him to contact us....
I'm beginning to think that it's not going to happen.
Anyway, the great thing is that Hazel Grace is doing very well.
They tried her on room air yesterday, but she didn't tolerate it well and had too hard of a time breathing, so they put her back on the cannula, but...
HAZEL'S COMING HOME!!!!!
Now that she has the G-Tube so that we can feed her through the tube what she can't take by mouth, and now that she is on .25 liters, she is ready to come home!
She is healing well and her sutures are out, and now we are just waiting for the equipment and oxygen tanks that we need to be delivered so that we can be trained on how to use them at home.
She is due to be released on this Friday, but as we have learned, communication in this hospital is very poor, so I have been calling non-stop to be sure that I am on top of what is going on, and now they are saying that she may be released even earlier!
As excited as I am to get her home, I am nervous about the increased level of responsibility and the fact that she will be tethered to a large tank by an 8 foot tube! How does one move about the house chasing the rest of the kids when the baby, who has spent enough time lying alone in a crib has an 8 foot long leash?
Anyway, since this is coming on much faster than expected, we are by no means ready. All of you who have been offering to help, and who I have told to wait until Hazel gets home to pitch in a hand, now is your chance!
Starting next week, we would love dinners brought by and we also have a Hazel Registry on Amazon.com.
Your prayers have been our blessings, your kindness has been our support.
And as we embark on the next leg of our journey, please continue to keep us in your prayers. It means so much to us and helps us all take that next