Going Home Soon!

Guys... We are actually going to get to go home!!! Our tentative date is this THURSDAY!!!

Ella has been rocking it this last week. We've had lots of appointments for physical therapy and speech therapy that have trained us how to help her development progress since she's been in a bed for so long. Physical therapy has been fun and has allowed us to get on the floor and snuggle and hold her in a bunch of different ways that will help her muscles develop. Eli has been able to "help" us with that as well. I can tell he enjoys being on the ground with her and playing with her.

Speech has been working with us to get her to eat by mouth. This part has been a much slower process than I anticipated... Ella has a sucking reflex that is good, but has a hard time swallowing. There are little things that we do with her are supposed to help her learn to eat by mouth. We are pretty much just giving her "tastes" of milk (which, by the way, she's been tolerating well!) by putting the milk on our finger and placing it near her mouth in hopes of her sucking our finger and swallowing the bit of milk she's receiving. She's done that a couple of times, but not all of the time. The speech therapist has been talking to us about the possibility of needing a G-tube (tube in her tummy) rather than an NG-tube (tube in her nose). There are a lot of positives and negatives to both so I asked if we could table that discussion for a couple of weeks. I know that Ella takes a while to do things that we would think she should be able to do, so I want to give her time to adjust and work on the feeding strategies each day.  We will meet with speech every week or every other week after we go home.

Ella has officially been off of the ventilator for over 72 hours now!!! The PICU doctor says he thinks that she will not have to be on it when we go home!!! We aren't completely sure yet, we are trialing it for 5 days, and if she does well, we will just go home with her HME (the little box thing covering her trach) and trach mist for night time. Dr. Swanson is also calling a pulmonologist (lung doctor) to get Ella a schedule for weaning off of her trach. He thinks she will be able to be without a trach at 6-8 months (so in 4-6 months). So that would be AWESOME! But of course, I am focusing on today and not banking on it haha!!!😊 The other information that is a little tricky with the trach that I hadn't realized before is that while driving we have to have two adults in the car so that, if needed, we would be able to suction her secretions that get caught in her trach. So I am really going to be confined to my house! The home nurse will be able to take care of her while I'm gone but we are supposed to get comfortable with him/her first.

The thing that may hold us up on discharge is the Lovinox (blood thinner) shots. Right now they are working on getting them for home, but the pharmacies that anyone can go to don't dilute it to the point that she needs. Ours would be much more concentrated, so it'd be a smaller volume of medication, and I guess having a different concentration would affect the release/absorption time. We have to figure this out before we leave. I asked if we can get the medication through the hospital but we can't as an outpatient. So that may delay our discharge date a bit.

The nurses have been working really hard to help prepare us to get home. They have been such a gift to us. I have told Matt how I will be sooo thankful to get home, but will miss seeing everyone that has loved on and taken care of Ella. Matt and I feel totally confident that we will be able to take care of all that Ella needs. The nurses and doctors feel the same, but we have to go through a 48 hour "room in" where we do all of the care, round the clock to prove we can do it. Matt and I have both felt confident in giving her the medications she needs (including shots), doing the trach care, and keeping track of the different things for her heart condition.

We got approved for home nursing and will get one shortly after we get home! We would love one for the night time so that we can sleep through the night, but it's hard to find a nurse for the night shifts. This means that Matt and I will be taking shifts on being awake at night to watch her. We have to do this because of the trach and making sure it doesn't get clogged. So if you see me, I may be a zombie for a while 😀.

The clots have not seemed to get better or worse. We are trying to figure out the meds as I've said, but the doctor is starting to wonder if they will even make any difference at this point... This complicates things a lot because now she will not be able to get the Glenn (second surgery), which would extend our risky time in the "interstage" until she is stable and large enough for the Fontan (third surgery) which I know I've explained before. I am praying that God does a miracle in her veins and gets rid of those clots. I pray that He will amaze the doctors and get rid of them in an inexplicable way that only He can do. The Glenn would normally take place when Ella is 3-6 months old. So please pray for that miracle along with us.

The reality of losing her has also set in a bit. If you look at her, you'd think she was a relatively normal baby (minus the trach/feeding tube), but she's not. She's special and needs a lot of special care.I started talking to our nurse about her reality and I saw tears welling up in her eyes, knowing that we are in for a difficult ride. Our lives of going to places daily and being around people are all going to change. She is so fragile in this "interstage" before the second surgery that if she gets even just a cold, she could die. I have talked to other parents of HLHS babies and the ones who had their baby pass away were the ones who had other complications, just like Ella does. So wrapping my mind around the fact that we may lose her has been a little difficult. The more we get to be with her and interact with her and do her care, the more and more my heart is attached to her and wants her to be with us forever, but I realize this may not be the case. Matt and I have discussed how we feel honored that God has asked us to be her parents because He knew we could do it with His help. So all I can say is that we are going to love her and take care of her as long as the Lord allows us to. I pray that technology gets better and better to help keep her heart strong. It's amazing the peace that the Lord has given us through this whole process. Would I ever wish it upon anyone else? NO. DEFINITELY NOT. It has been the hardest thing that I have ever experienced, but the beauty and blessings that have come from it have been incredible. I have seen my own and other people's faith strengthened because of what God is doing in Ella's life. I hope one day, when she is older, we will be able to tell her of all of the good things that came from her difficulties.

Love,
Jillian