A busy boy!

Hi!
Tonight I am weary...
I just want to be able to pick up my son and hold him whenever I want to. I want him to be free of all his medical equipment so that he can move and play like a normal little baby. I want to have him at home with us. Tonight he was so upset and I couldn't comfort him quite like I'd like to...I just wish that I could make him happy and cozy in our little home. This journey has be hard and Jude's hospital stay has been so long.

But I know that the Lord is with us. Everyday. Every step. And I'm trying super hard to remember that God will give each of us exactly what we need each day. Please pray for us.

Despite my weariness, Jude has been working and playing hard. We are quite proud of Jude and excited about the progress that he continues to make. The Lord is good and we are thankful.

So what is new with Jude?

• Currently he is really enjoying and working hard with his physical therapists! Jude sat in a little chair today (a supportive chair) and he LOVED it. He also sat up in my lap the last two times that held him. He loves looking around the room and "holding court" with all the nurses, doctors and therapists. 
• He is also working hard with the occupational therapists too. Jude's been much more accepting of positive oral stimulation that is helping him get more and more ready for feeding in the future. This evening he allowed his paci to go even further into his mouth today (this is something we've been working really hard on). We are so excited about his progress. 
• Jude is nearly off of his fentanyl. Today they weaned him again and I think that we will see him completely weaned from his fentanyl in just a few days. After he is weaned from this medication he will go to scheduled morphine. We are thrilled that this is going SO well.
• They are continuing to increase Jude's volume of feeds and we continue to hope that his digestion and absorption will improve. It is too early to tell if my dairy free diet is improving his digestive health. We hope to see an improvement after I've been banning dairy for three weeks. (Many of you have asked how it is going...it's been tough but do-able. I complained quite a bit during my first few days of "milk detox" but I'm starting to settle into avoiding dairy. It has been really interesting to learn about the many items that contain milk products! Many thanks to those of you who have offered advice and recipes about dairy-free foods)
• Jude is still on CPAP but the doctors and respiratory therapists have been letting Jude "trial" on vapotherm (another form of respiratory support that is a little "stronger" than an oxygen nasal cannula) for a few hours each day. Jude really enjoys being on vapotherm because he does not have the long prongs from CPAP that agitate him so much. 

How you can pray for Jude:

• Please continue to pray for Jude's digestion and his absorption of his food. 
• Please continue to pray for Jude's lungs to get stronger so that he can move from CPAP to vapotherm or oxygen nasal cannula.
• Please pray for Jude's therapies (PT and OT) as his activity with them continues to increase. Please pray for his development too. He is nearly three months old now and he is interesting in getting more active and enjoying his environment but it is tough to do this when he has so many medication lines going into his PICC line in his head. I honestly think that he is starting to get bored with being in bed and seeing the same things. I wish I could just walk him around and let him check out his surroundings. 

A friend sent me the words to a song today (one that I've actually not heard before) and some of the lyrics really stood out to me:

In the quiet, in the stillness
I know that You are God
In the secret of Your presence
I know there I am restored

None but Jesus - Hillsong