Saturday, June 4, 2011

UPDATE: Praying for Baby Henry!

Please Pray for Baby Henry!

To all my prayer warrior friends out there. Please pray for baby Henry. He is a sweet angel of God born on May 17th to the wonderful Johnson Family. He was placed on an ECMO that bypasses his heart and lungs, allowing his body to rest. Please keep this sweet baby and family in your prayers! 

14 Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. 15 And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. James 5:14-15

If you are a believer in our Lord and Savior Jesus Christ.... then you are the church!

 16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus. 1 Thessalonians 5:16-18

UPDATES: All updates are per Amber and Steven via Facebook.

April 3, 2011:
"Henry is dropping weight as he should.  He's getting back to his birth weight where they want him to be.  We're pretty sure that he still has a pleural effusion on the right.  The surgeon keeps bringing up placing a chest tube in to drain the fluid collection but his clotting factors are off not to mention that his chest x ray is still "whited out" and they're unable to get a lot of information from it at this point.  The other option is waiting through the weekend to see if the dialysis will help drain off the fluid without intervention.  We hope we can go without the chest tube but if that is what Henry needs to improve then we're all for it.

His sweet little ear looks better today. Still really red and inflamed but better.  The nurse has gone through great lengths to keep any pressure off of it today.  She actually made a hole for it in the foam support under his head to keep anything from rubbing against it.  She also made a sign that says "Don't Forget... Ear on bedrest."  to remind the evening and night nurses to try and keep him off of it.  She also told me that she heard noises in his chest which is a huge improvement from last week.  :)" -Amber
April 2, 2011:
"Thank you for taking the time to check in on Henry and us. We covet your prayers and ask that you continue to pray for Henry's healing and for our strength during such a difficult time.  We will update his site as much as possible so please continue to check in on our sweet boy."-Amber & Steven
  To learn more about Henry click Link below.
"Henry has had an o.k. day.  He is back on dialysis which will help reduce his swelling that has started from the ECMO change out.  He's already getting pretty swollen so hopefully the dialysis will help him shed the fluid pretty quickly.  We're praying that this is not going to be as big of a set back as last week's equipment change out.  They were unable to get a good look at his lungs on the x ray today because of the swelling so we're unable to really see if his pleural effusion has resolved or if he has any more air in his lungs. He's possibly getting a pressure sore on his left ear because he's had to lay on it so much.  So we're praying for more signs of progress tomorrow!

On a lighter note, we've been told that Henry has quite a temper.  Apparently he got so mad that he tensed up until he turned blue and made his ECMO cut off.  Fortunately, we were not there to witness his temper tantrum but had arrived shortly after.  His nurse was still slightly frazzled but laughing at how mad he had gotten and said that she had never had a baby turn their on pump off.  She actually had to chart "the fit".
Lilah got to visit Henry today.  She brought him a beautiful  card that her and her classmates made for him. I'll try to remember to take a picture of it and post it tomorrow.  It really is a sweet card and all of her friends drew smiley faces in it.  If you know Lilah, you know she loves smiley faces so I'm pretty sure that was her idea..  She also told me that her friends prayed for Henry before making the card.  God really has blessed us with such sweet and caring people in our lives."- Amber

April 1, 2011:
"Today Henry is down another half pound. He's a little dehydrated but that may help off set some of the fluid accumulation from equipment change scheduled later today. He will have his ECMO machine changed again, apparently this is something that needs to be done every 7 to 10 days. Of course, this will require more blood products which in turn causes more fluid retention. He is still on dialysis so this will hopefully help keep him from getting super puffy. He still has fluid around his right lung. They were talking about putting a chest tube in for that but they are going to hold off until we get through the circuit change and give him time to adjust to that. On a POSITIVE note, his chest xray showed a little air in both of his lungs.:) Praise God for the good news and pray for a smooth transition with his new equipment.

WOOHOO!!!! The ECMO swap is over. Henry was off of bypass for approximately 2 minutes but his oxygen levels stayed good. His BP dropped a bit but was fine as soon as he got back on the ECMO. Steven and I are waiting to go back and love on him some more."-Amber

May 31, 2011
"Henry weighed 8 pounds and 5 ounces this morning. He's still got a little bit of fluid around his lungs that is being a little stubborn. Pray that it goes away soon. They are hearing more breathe sounds today. His ventilator is picking up on them now. The x-rays from this morning even showed some air in his smaller lung. Praise God. They are going to have to change out the ECMO and dialysis machines soon. No set date or time as of yet, they're just keeping a close watch on them."-Steven

May 30, 2011: 
"PROGRESS!!!!! Henry is down to 8lb15oz. Just a couple of more pounds to go then on to the next step. Thanking God for another easy day for Henry, progress and the hope that it brings. Keep praying! Happy Memorial Day!!!!!! Henry got some flags to fly in honor of all who fight for our freedom. Check out the wings he's borrowing. My Pawpaw got these on his 21st birthday while serving our country in WWII. They were with him through each of the 51 missions that he flew. My uncle is letting Henry borrow them to bring him luck through a pretty tough battle. ♥ "-Amber

May 29, 2011: 
Seeing a little progress today. Henry has dropped some fluid weight. Praise God! Pray for him to continue to tolerate the fluid loss. We've also been informed that they may have to change out the ECMO device again. They are prepared to do so but this could cause Henry to need more blood products which can set him back again. Thanking God for another good day!

May 27, 2011:
"They are going to put Henry on dialysis this afternoon. This is to help him shed that fluid weight that he put on earlier this week. His kidneys are fine!!! He's peeing a lot but the volume of blood products that he received earlier in the week has proven to be a bit of a task for him. We are very hopeful and grateful that we have this option. There are some risks with the dialysis as with anything else but we really feel like the benefits out wiegh them. Please pray for the dialysis to work, for Henry and the ECMO equipment to tolerate the change, and for Henry's kidneys to continue to work properly once they take him off the dialysis. This verse made me think.: "I consider my life worth nothing to me, if only I may finish the race and complete the task the Lord Jesus has given to me -- the task of testifying to the gospel of God's grace.- Acts 20:24"- Amber

May 26, 2011:

"Hanging out with Steven during the 2-4 break. Henry is having a good day. He's up on his weight because of all of the extra blood products but he's not had to have as many transfusions today. Praise God! They have changed his diuretic in hopes to get more fluid off. Lots of pee! Still a long way to go to get him back to his slim and trim self."-Amber
"I just called to check in on Henry. His nurse said that he had a great night. He's still having to receive more blood products because of the equipment swap the other day which is normal. He's more swollen today because of the extra platelets. At this point he's just receiving faster than he can remove the extra from his body." -Amber

May 25, 2011  
"Enjoying a noneventful day with my sweet boy. He's a puffy baby from our set back yesterday and the increase in blood products he's had to receive but he's holding strong. He's handsome as usual and I just wiped him down and brushed his hair.
Henry had a good day today. They are starting to up his lasix to help get off his fluid weight. They are trying to reduce his sedatives so that he will be more alert. This will allow for more movement and activity which could help his body eliminate the fluid. Lilah had a very good visit with him." -Amber

"Henry had a better night last night. No events. He is puffy again as expected, but having a good day. Just needs to get busy making lots of wet diapers." -Steven
May 24, 2011:

"Had a setback with the ECMO machine last night. Part of it ruptured due to a clot and had to be replaced. Henry is okay but had to get more blood products because of it. Pray that it doesn't cause his weight to drastically go up. So there's another small problem with the ECMO pump. They're going to replace the entire unit around 3 PM. They'll have the new pump primed and by his bed, so swapping it out should only take a few minutes. The downside is that they'll have to give him more blood products. He's already starting to puff back up a bit" -Steven 
"Waiting to check on Henry. His ECMO equipment is being replaced because it wasn't working properly. This puts him several steps back in recovery. Praying that he tolerates the swap and that the nurses and doctors can get his clotting factors and blood pressure back to the desired levels so that we can start back on the lasix and reduce his fluid weight. Poor puffy baby.
Thanks for the immediate prayers!!!! Henry tolerated the swap well! He's going to have to get a lot more blood products to help with his blood pressure because it dropped with the change. That was expected. Receiving the blood products causes fluid retention. Now it is time to play catch up with the lasix. God love him. Waiting with Steven Johnson to go back and check on him." -Amber
May 22, 2011:  
"We had a good long visit with Henry today. He's starting to lose some of his fluid weight that he has gained from being on ECMO. That is a sign of progress!!!! Lilah got to come and visit for a while and she is an awesome big sister. She even remembered to bring him some clean booties. I love my sweet babies and I thank God for watching over us." -Amber

"Hanging out during the 2-4 break. Waiting for Lilah. Henry is having a good day today. He was 6 pounds and 14 ounces when he was born. His body weight nearly doubled after they put him on ECMO due to all the blood products and fluids they had to give him. Now he's down to 10 pounds. Finally some progress. It might be really small in the large scope of things, but it's progress none the less and I thank God for it." -Steven

May 19, 2011: 
" would like to thank everyone for all the prayers for Henry and for all of the inquiries. I am sorry that I have been unable to respond. It has been hectic and we're exhausted. Keep praying for Henry. He has a long road ahead but he's holding his own. Prayer works and God still heals!!!!! Thanks for the love peeps!"- Amber
May 18, 2011:  
"I wanted to let you guys know that Henry had to be placed on ECMO last night. ECMO bypasses his heart and lungs, allowing his body to rest. He showed signs of improvement after being placed on ECMO. They'll start trying to reduce his dependence on it after a few weeks. Amber is recovering as expected. She'll feel better after she gets to see him, which should be sometime this morning." - Steven
"Henry is here! He weighs 6 pounds and 14 ounces and is 19.25 inches long. Amber is good. Henry is getting for his first road trip from UAB to Children's Hospital. Praise the Lord"-Steven