Our New Norm

Hopefully this post will make sense... I am a little sleepy!

We made it home around 2 in the afternoon and hit the ground running. We were greeted by three home nurses and one of the company's coordinators. We explained Ella's story and condition to them and Matt unpacked the car. We had so many things to unpack, I am STILL unpacking!!! It's pretty crazy how much we accumulated down there and how many things we were bringing home for Ella. It was kind of a blur.

Shortly after, Eli joined us at home and it was so sweet seeing him get so excited that his baby sister was at home! He has said to Matt and I multiple times, "Mommy, Daddy, I am so glad Sister is at home with us." He has been such a big helper. He has gotten used to all of the machine noises and even her little noises that she makes. He tells us when he thinks that she needs a "shuction", or suction. Because Ella has a trach, we are constantly having to be on alert and listening to her to see if she needs help clearing the trach with a suction machine. Eli will turn on the machine while Matt or I suction out the secretions (sounds a bit nasty, I know, we had to get used to it). He is often found kissing Ella's head or trying to give her books or toys. He really is a special kid and a great big brother.

Around 5:30pm on Tuesday, three of the four ladies left and our day shift nurse was here with us. It felt really awkward at first to have someone in our home that we didn't know. We are still getting used to it all. We have a daytime home nurse for 4 or 5 days a week and a nighttime home nurse 6 days a week. Neither of our nurses have had a heart baby before, so we had to explain a lot. They are really educated with the trachs so that's really helpful.

Just before dinner, Matt had been unpacking our things and looking for my engagement ring diamond while he carefully pulled things out. I had this weird feeling that we would find it in Ella's carseat under the cushions. I told Matt to look under there and YAY! We found it. God is good. But really, if we hadn't found it, Matt and I would have had a total peace about it. But I am so glad we did find it. Now we just need to get it fixed.

We have had 8 hours each day where it's just our family at home other than that first day. I really enjoy when Matt and I both are here. We just help each other out and the flow is so much more natural. It's hard to trust someone else with her medications, so I think we will continue to just keep measuring/administering them ourselves for a while.

Speaking of meds... We went to the cardiologist follow up appointment and our doctor, Dr. Hill, is out for three weeks so we are seeing his coworker. We were told to go down on the diuretics on Friday, so I did, but Ella has not responded well to this... We have had a few nights of super low sats (oxygen saturation #s) and the only thing we can think that is contributing to this was taking out her 3rd dose of the diuretics... We kind of had a weird feeling about going down on the diuretics and we think we see why now. Today she went the lowest we've ever seen at 59 (she's supposed to be 75-85, normal people should be close to 100). She went really blue and we didn't know what to do. We have also been on edge a little more today because last night we were without a night nurse and slept 4 hours or so each because we had to take shifts watching her. I contacted the cardiologist 24 hour on-call doctor and he wasn't sure why she was satting so low, but if it continued we would have to jet down to the PICU. Thankfully, it got a little better, but she's still struggling tonight. I am guessing that her lungs are getting excess fluid in them because of going down on the diuretics, but I am not totally sure. She's still satting low at 71ish So please please pray that these numbers come back up.

We had our follow up appointments for her Lovenox levels and wound care at the Pediatric Day Unit (PDU) in the hospital on Friday as well as the cardiologist appointment. It was crazy how I got all anxious once we got back into the hospital. All of the feelings that we felt when we were there rushed back to me. But I quickly got over it 😊Her Lovenox levels are right where they want them to (hopefully) help clear up the clots. (Poor baby had to get pricked a lot to get enough blood for the tests) We still absolutely HATE giving the shots to her. I feel like she's always sleeping when we have to give them to her. Talk about a rude awakening... Another wrench was thrown our way that morning when I was giving Ella some of her meds. She is on Prevacid for her acid reflux and we have to dissolve a pill in water then soak up a third of it. We did it this way because the PICU pharmacist said it would be expensive otherwise. Well, I clogged her NG tube with it. So thankfully I was already on my way to the Pediatric Day Unit. Once I told the nurse that it was clogged she told me we would probably be there for another 2-3 hours because they'd have to get an X Ray to verify that the new one was placed correctly. I texted Ashley and she came up and worked her magic and poof! It cleared up! Once again, I was so thankful for her. And since then, we have ordered the liquid form and don't care how much it costs.

Matt went back to work full time starting last Friday. I miss him so much when he's gone. He is so good at caring for Ella. I wish we could always be home together, but I am just SO thankful for all of the time that EPC has given him off. It was invaluable to me. Having him gone just makes me extra thankful for the time that he is home.

I have found that even though we are home, the constant care doesn't stop. If anything, it's more. We've had some really stressful days/times and some really great times. It is hard accepting that this is our new "norm". I have found myself not eating or washing my hair (sorry if that's TMI) because I've been so busy. I can't help but hold out hope for those clots to go away so that she can get her 2nd surgery so that Ella is a little more stable. I keep pleading with God that Ella will be off the trach ASAP as well. I was told by the day nurse today that having a trach apparently feels like you have a dry, sore throat with thick spit constantly making you cough. Poor baby has to deal with a constant cough and irritated throat. It breaks my heart thinking of all of the (for lack of a better word) CRAP Ella has had to go through. I have found myself asking God, "Hasn't she had enough? Please give her a break!" It's so hard watching your child have a chronic illness. I am still grieving the fact that she is not a normal baby. I am so glad that God wants us to come to Him and seek Him even when we are unsure or frustrated with His plan. I keep thinking of how He allowed Jacob to wrestle with Him. I am thankful that He hears our cries.

Here are the updates on Ella's medical stuff:
Head Wound: Looking "beautiful" and "so good". The deep opening has gotten so much smaller and is probably a little bigger than a sesame seed. We've continued to follow the wound doctor's orders and have used Medihoney on it. That stuff is no joke! Great job bees! 😜
Sats: Low. Need to come up. There is probably excess fluid making it harder for her to breathe.
Chest Incision: stitches will be taken out this Thursday by Dr. Watanabe. It's looking really good.
Clots/Brain Bleed: no idea. We will eventually get an ultrasound sometime in July to see if the Lovenox is helping.
Trach: we are getting pretty good at caring for it. It's definitely not our favorite thing to do though. I am just glad we can't hear her cry when we do all of it because it would be so much worse. We see the pulmonologist on July 5th to see when she thinks Ella will be able to not have it anymore. Please please pray it will be soon.

Anyway, I just wanted to say thank you once again for all of your prayers. And thank you to the people that have brought food or are going to be bringing us food. It has seriously been a HUGE weight lifted off of our shoulders. The generosity of the community around us has seriously stunned Matt and I. We cannot believe how amazing you all are. Thank you.

Love,
Jillian