Settling In

Hey everyone,

Things have been going pretty good since my last post about a week and a half ago. Liz and I are still adjusting to being home. Training the nurses has been going well. Most of them are pretty well versed in Judah’s nuances. About half of the nights we’re able to get a good amount of sleep. Sometimes he just has a lot mucus to be suctioned out or is inconsolable because of more teething. Hopefully, this will improve as the night nurses grow more familiar with how to deal with Judah. We’re very grateful for how they care for him and we feel like we have a pretty good team.

On Sunday it seemed like Judah was getting a cold and by Monday we were sure of it. We took him to see his pediatrician. There isn’t a whole lot you can do for a baby with a cold but run tests. (Which we have yet to hear back about.) They talked about doing a nebulizer treatment with albuterol but we didn’t have the right equipment yet to attach to his ventilator. Thankfully, his cold was just about gone yesterday (Tuesday) and he’s still doing well today. Praise God for a quick recovery!

Liz and I are doing well and we’re pretty settled in. Most of the boxes are empty and the house is getting more organized by the day. It’s beginning to feel more and more like home which is a really great feeling! As the weather is changing we’re excited to enjoy our new yard and get Judah outside more. We feel incredibly blessed to have him and to be in this house. God is good.

Please continue to pray for Judah’s health. It’s very important that he doesn’t get seriously sick. We’re expecting the second (of three) heart surgery to be sometime in the early summer. He will need to be in perfect health for that. Also, please pray that our nurses continue to learn how to care for Judah’s needs. And, as always, let’s believe for a miracle in Judah’s body. Let’s believe for open, strong airways and a new heart. God is able!

Thank you all again for your incredible support! Your gifts, messages, actions, thoughts, and prayers have been such a strength for us over the past 5 months. You have carried us and we are so grateful for all of you. We pray God would return the blessing to you ten fold!

Much love,
Nick & Liz

Transitioning

Judah after his first bath at home

Hey everyone,

It’s good to be home! It will definitely take us some time to get used to being here Judah, and to settle into both a new house and a new routine. These first few weeks we will be doing a lot of training with our nurses. While they all have trach/vent experience, there are still many things about Judah they aren’t familiar with. Liz and I have been taking turns staying up with them during the night shifts to make sure things go smoothly.

We’ve had a lot of people in and out since we got home on Wednesday. People from the home care nursing agency, new nurses, people from the home care supply company, etc. It’s a little strange for us but after a few weeks things will settle down. We are really enjoying being in our own space. Even though we moved last month there is still a lot of unpacking and putting away to do. Thankfully, we’re making good progress.

Judah has been doing well on his new soy based formula. We’re not ready to say that he is definitely allergic to milk but we’re going to keep him on this for a while just to be safe.

Prayer requests:
– Judah has had a yeast infection under his chin for about a week and it’s not getting much better. We’re treating it topically and by oral (via g-tube) meds. Please pray that it goes away soon!
– Please pray that the nurses learn what they need to quickly.
– Grace for Liz and I as we will not be getting a lot of sleep over the next few weeks.
– Healing over Judah’s whole body – a new heart and strong lungs!

We continue to believe that God is able to heal Judah. We won’t back down from that prayer. He is our hope. Thank you for standing with us!

Much love,
Nick & Liz

Delayed

Hi friends,

We are staying at least one more day.

Reason #1:
Judah has had some blood in his stool the last few days. We’ve tried a few things and run some tests and everything seems to point to an allergic reaction most likely to milk. This seems somewhat unlikely but it does happen to kids and adults. We are trying a different formula today to see how that affects him.

Reason #2: (and the main reason)
It seems like Judah is starting to get a cold. He hasn’t been himself in a few days and is developing a cough. Also, his white blood cell count is up and that is a sign that he’s fighting something.

Please pray for healing in Judah’s body and for a resolution to any allergic reactions.

Thanks! We’ll keep you updated.

Much love,
Nick & Liz