2 months old.....

Well, our little munchkin is 2 months old today! WOW! Every day he is getting stronger and stronger. There is not a day that goes by where a nurse or physician does not comment on how strong he is or how much of a fighter he is. We are thankful that he is a fighter.

We must praise God for several days of good urine only diapers. He has had 26, 20, and 24 cc urine diapers on a couple of days this week. Yea! No one can still say for certain why his kidneys are not functioning at full capacity. He does urinate so the anatomy of his kidneys are good. His early sonogram showed normal anatomy and no cysts or other anomalies. One nurse mentioned it could be a filtering issue or it could be all the medicine he had given to him when he was born. Only God knows and we pray daily that He will return Lil WIll's kidney functions to normal.

In the last update (2/24) I mentioned that the cultures remained negative, no infections. Well, we received some news on Wed, he has some sort of resistant bacteria strand on his ET tube(breathing tube). They started him on antibiotics and all will be okay. But, the Infectious Disease docs/dept have put him on contact isolation. What this means is anyone who enters his room must wear a gown and if you are going to touch him you have to wear gloves. He will most likely remain on contact isolation for another 10 to 14 days. The good news is as soon as he is extubated, the infection goes with the tube at least that is they way it was explained to me.

Lil WIll continued to be on the CVVH machine until mid day Wednesday. They begin the Peritoneal Dialysis and it has been working well. They were able to finally remove the CVVH catheter in his neck after they are certain there are no issues with his PD on Thursday. One less IV on Lil WIll!

He was finally weaned off the Nitric Oxide at 3AM on 2/27! I was up at 4 AM, as I am most days (a mothers work is never done, I have to get up every 3 hours to lactate! VERY exhausting BUT completely worth the sacrifice! ) and usually call to check on Lil Will. When I called the nurse told me he had dropped his sats to the mid 60's when they turned off the NO but was now back in the 80's. I was a bit anxious when she told me this but she said they were not going to do anything, they were going to ride it out and see what he would do. Well, he did it, a few hours later, his sats were 100! William had been asking the Lord, when will they let Lil Will show them what he can do, well, the Lord answered him. During this storm, we have found that alot of how much they allow Lil Will to do really depends on the nurse. If he./she has the patience and confidence in their skill level AND, let's face it, is NOT lazy, they usually will let him do it until it becomes dangerous or they need to medically intervene. Thank God for sending us a patient nurse on 2/27!

He has been having issues with his blood pressure being a bit low. The doctors tell us it is related to the pain meds he is still on. They want to turn off the Fentanyl since they started him on Methadone yesterday. They use methadone to help with any withdrawals he may have from the fentanyl. Crazy huh? He did have a bout Thursday night where it went to high so they had to give him some med to bring it down. Friday, he had an EEG to make sure he did not have a seizure. The doc doesn't believe he did because when his BP spiked, he was resting well, He believes it is because they stopped giving him another pain med. And like adults, if a medicine that you are used to having is suddenly stopped it could cause your BP to go up. We know he did not have a seizure but the docs have to do their jobs. God is in control!

He is back on full feeds at 20 cc's per hour or 16 ounces per day. They are increasing his caloric intake so they can put some weight on him before he has his heart surgery. His doc mentioned again yesterday that his heart is fine and that is not the concern right now. Currently, the concern is weaning his O2 on the vent, getting him extubated and maintaining his PD. He is breathing over the vent so it shouldn't be too many more days until he is extubated. I can't wait, haven't been able to hold him in over a week!

Most healthcare professionals are nurturing and caring by nature, probably why they went into the field. During Lil Will's hospital stay we have encountered angel after angel. Each angel has had their specific task from God when taking care of our son. I am sure they did not know what their task was related to Lil Will but God always shows us during their shift what their task was. It may have been a nagging question we had, they answered it, without us even asking. My, how the Holy Sprit works! Or they make have spoken a word, like today is going to be a blessed day or God is in control. Those words made us feel at ease when we left Lil Will for the night. It is nice to know your child is being taken care of by a child of God! This has brought me comfort during this time. I am very thankful to God for giving me this peace.

We just arrived home from the hospital and Lil Will is starting to open his eyes. They are a bit puffy and you can see him try to open them. He opens one of them, we call him Popeye when he does that. He will become more alert as they continue to wean the pain meds. His eyes just look sleepy but beautiful. It is such a wonderful feeling to say something to him and see him open his eyes or move in response to your voice. One of the best feelings I have ever had. They weaned his oxygen level to 35%, room air is 21% so we are getter closer and closer every day. In God's time, in God's time.

Our scripture focus for this week is James 1:2-4, My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing. For me this week has tested my patience. Lil Will retained a bit of fluid this week and since he was on CVVH they were not taking fluid off, they were just leaving him balanced. This frustrated me and I found myself questioning God. Why did he have to go on CVVH? Why are you letting him get on fluid overload again? Why is he still intubated and now has an infection? Why? Why? Why? I know we are taught not to question God. But, we are all human! The answer the Lord gave me was patience, my child and He sent me to James. Be patient. While the physicians are changing orders and doing things to Lil Will, I AM in control and am making things perfect and complete. Lil Will is in my care. After I asked those questions of the Lord earlier this week, Lil Will started to improve. If we can all remember that we are not in control and to have patience, our God will work everything out for our good!

Prayer focus:
1. Extubation
2. Kidney functions normal.
3. Infection free, normal labs and gases.
4. Patience for all of us who need to work on it! =)

May each of you have a blessed week. Do not stress over the economy, keep your hands in the Master's hands and He will direct your paths. You woke up this morning, clothed in your right mind and spirit, so you should be thankful. Someone laid down last night and did not make it to this morning. So, before you start to complain about anything...remember it could be much worse. Glory to God!!