Rockin

So Jeremiah has been off the vent now for 31 hours and is breathing well!! He is on oxygen but they are trying to wean him down. Here is a picture of us rocking when they finally let me hold him 12 plus hours after extubation. He is runnin feverand feelin yucky.

Noah is doing really well considering. Going home atnoght with daddy and jei jei who are takin turns on sleeper sofa with him and having fun slumber parties!! Heehee he is spending lots of time with his daddy when Celeste is working and he can't be back in picu he cam come 30 minutes at a time and they are way generous with that as long as he is quiet and all. Please keep praying as the surgery healing begins now since the tube has irritated it all this time. Please pray breathing continues to improve and feeds go well as they increase and for healing and all.

Can't believe..

Can't believe I get to say this!!!!
He is OFF vent and breathing with 02!!! They pulled it at 8:30 and he is breathing!! God is awesome!!!!!!!!

To God be the glory, great things HE has done!!!!!!!! Sending this by the blessing of my phone!!!

Only my Jeremiah

Didn't really plan to put pics up on vent but how could I Not share miah smiling  at me even on a ventilator! I would be pulling the tube out and he is smiling!!
He was smiling really big before I got the camera but you cam see s little smile here

For those following the nurse issue I did meet with nursing supervisor and miah was assigned a new night nurse last night. She is wonderful!! We had her back this summer a few times and she was one of our favs.  There was physical evidence that his day nurse yesterday documented and was mad about to back up my story. His face was crusted over from drainage of nose that was not suctioned all night.  Diaper drenched, bed dirty including blanket under head nasty with secretions , etc .  And the monitor records will prove his huge desat at the time I said from he roughly turning him and jostling the tube. Also there is leakage around the tube now from jostling. Just know other than her his care has been impeccable and now she is not allowed to be his nurse. We have a new dr. One who travels all over to teach doctors how to care for very sick babies . He is one of the two top guys in the country!! How cool God brought him to Jeremiah!!'

Praying he can get him off the vent and doing well!!

To God be the glory, great things HE has done!!!!!!!! Sending this by the blessing of my phone!!!

Only my sweet frogie boy

Didn't really plan to put pics up on vent but how could I Not share miah smiling at me even on a ventilator! I would be pulling the tube out and he is smiling!!
He was smiling really big before I got the camera but you cam see s little smile here

Thursday morning vent and update

:( It's been a rough rough night. The nurse (the one I do NOT like from last time) was here last night and she so scares me and i don't trust her. She is different than the other nurses and she turns him with no help to hold the tube so it wiggles and hurts him and gags him and he starts chokin and coughing and desatting . On top of that when he alarms and is coughing and choking on fluid she just looks at him. Everyone else suctions it out if his mouth so he is not chokin and strangling on it. He kept desatting all night cuz she wouldn't help him. This morning his face was filthy from all that had drained on it that should have been suctioned. She acts like she does not even want me in the room much less to touch him. I just don't think she wants what is best for him at all :( and I am literally scared when she is his nurse.

I keep telling myself to be content in all things and have tried so hard and have been extra kind to her and tried to help even, which she doesn't want me to do anything with him, even touch him. I have tried to make friends thinking that will help but not helping. Was so hoping he would be off the vent tonight so it won't be as big a deal.

Different doctor came in. Dr. Scott. He is not getting off vent today. Another test tonight. If he can stay on pressure support 5 and 5 with no apnea episodes then maybe tomorow try to get him off the vent. I am gonna ask for a different nurse but am scared. When you complain alot of times they are mad and the care is worse.

I soo just want my baby breathing on his own and in my arms!!

Tears seem to flow so much lately but I have to hold onto GOD IS ABLE

To God be the glory, great things HE has done!!!!!!!! Sending this by the blessing of my phone!!!

Feb. 23rd 8:38 am update

So they came in and said they are gonna try and wean him down throughout the morning till he is all him and no vent actially breathing and see how it goes. If he does good maybe extubate later today. He is still having frightening episodes of desatting and it is so hard to see. He is coughing alot and has tons of drainage from mouth and nose and appears to be retching or vomiting at times. Hard to tell on the vent. Soo pray they get him off soon.

We were so blessed yesterday with visitors! All who laid hands on this baby and prayed. My friend Erin and her son who is Noshs buddy,my mom, friend sandy and her children that we got close to last time when both our sons were on vents. Our pastor and his wife, our home health nurse, our childrens pastor, our worship leaders/ youth pastors/ nursery director and their son, and my sweet sweet friend Ronie from cell group at Church that brought the prayer blanket. Such an amazing sweet time of being loved on by God through HIS people. So neat to learn more and more about friends through sharing and realizing we are alike in some fun ways. :)

I had a very upsetting time yesterday while my mom was visiting. She had her feet propped in the rocker recliner waiting for me to rock miah when he is off the vent. A nurse comes in and says , you are gonna be mad at me but I am gonna take your recliner because you can't rock your baby right now anyway. I totally lost it. Not because I was angry or selfish , obviously another mom needed it more but because I don't need it now and got overwhelmingly scared about what if I never need it. I know that won't happen but for a brief time I was just soo sad and bawling about that chair being taken. I know it want a sign other than to the fact I can't hold my baby right now but it still Sent me off:( I told them when this baby us off the vent they will find me a rocker recliner and I do not care if there are enough for all rooms. There should be!

It's now 9:38 and they have Been bringing the rate down on vent and so far he is doing good. Please bathe this baby in prayer. I love him soo much and soo want him doing better so he can focus on living and continuing
To learn to sit up and roll and step in gait trainer!!

Thanks for caring guys

To God be the glory, great things HE has done!!!!!!!! Sending this by the blessing of my phone!!!

The gift of life

Well, Jeremiah is a bit better after a really hard day yesterday. He crashed several times while on the vent yestetday and had everyone Jumpin. The night was his best yet. He had a few episodes of desat on oxygen and a few coughing spells and need to suction but no crashes! Still on vent support. The big doc just came in and said during the night his breathing would slow waaaaay down and the vent had to do way more. They want him to breathe over the vent and he is some but not during night. Please keep praying he will get safe enough to get off the vent soon

Before I got that above posted he started up with some episodes today. They are not as severe but still has everyone jumping. I now know there is a pink button on the wall that makes All docs nurses RT etc run into the room. He seems a bit stronger to me and one coughing spell really looked like the gagging he does on formula. I am praying so hard they can get him off the vent and that he will be better an better!

Had a wonderful visit with sweet ladies from my cell group! 2 yesterday and one this morning and the childrens pastor has been by several times as have his home health nurse and his therapists. Just had an encouragement and message from God by way of a sweet friend. Yesterday during worship God gave her hubby a vision of Jeremiah and He drew it out. It is of Jeremiah in his hospital crib and angels all around him! I sioo needed to hear that reminder!! It brought tears to my eyes and as I think about it now I am bawling! I can't wait to see the drawing!! So made me feel God saying to me eyes of Faith girl not of flesh! The docs may not understand what is all going on but God does! And He is here!! God ia the giver of life and breath! He is the one who created the air! Life is such a gift and more precious than I think any of us realize! U am thanking God for every second of life for this baby and everyone in my life! I am praying that i can keep my eyes in HIM and Remember GOD IS ABLE!!!

To God be the glory, great things HE has done!!!!!!!! Sending this by the blessing of my phone!!!

7:47 am Monday February 21st

Please pray. Temp 104 axillary(underarm) Tough night breathing wise. Still on ventilator with pressure support with many many apnea episodes last night. Tryin to wean some sedation today to help breathing. But need it not to allow him to get too agitated either. Pray they can find cause of high temp and get under control quickly! Thanks everyone

To God be the glory, great things HE has done!!!!!!!! Sending this by the blessing of my phone!!!

Jeremiah urgent

Jeremiah is having a hard time. They tried to take him off the vent this morning and he crashed :( heart rate oxygen sat breathing everything was nothing . He was totally blue. The moat frightening sight I have ever seen. They had to work on him and made me leave eventually while they did. I was crying and praying alone In the hall. They finally got him going again and he is on the ventilator again. We are keeping his ICU room very quiet and prayerful. Allowing him to rest and heal and helping him to do that! I can't tell you the fear in my heart and how the sight of him like that is etched into my mind. Please keep him in prayer. GOD IS ABLE. That is what I keep holding on to!

To God be the glory, great things HE has done!!!!!!!! Sending this by the blessing of my phone!!!