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!!

CVVH, never again!

This past weekend was a bit rough for Lil Will and us. As you know he was placed on the CVVH machine last week. We were told they may have to keep him paralyzed during this week to keep him from moving around alot. Movement could cause a kink in the CVVH line. At first, they did not keep him paralyzed so, during nursing assessments or respiratory suctioning him, he would become agitated. I think you and I would become agitated if there was a tube down your throat, two catheters in your neck, a tube in your stomach, a central line in your right thigh and two other IV lines. Come on people, keep him sedated and comfortable. There had to be some trial and error of his O2 sats dropping and him not recovering very well for them to realize this. Geez! Since Lil WIll had settled down and his O2 sats were back up, William and I went to a movie, the first time we have really been out since Lil Will was born. It was nice to get out and have a good laugh, you know, forget about things for an hour or two. We arrived back at the hospital and Lil Will was not doing so well, again, the nurse had agitated him without giving him a bolus of pain med. Again, how many times do we have to tell you, you have to give him a bolus of pain med BEFORE you touch him! Again, he was not recovering, I couldn't watch the monitor any longer, I had to leave the room, I felt faint and nauseous. William later told me his sats went as low as the mid 50's. The RT increased his oxygen on the ventilator to 90%, his sats were still not coming up, so the dreaded NITRIC OXIDE machine reared its ugly head. We hated to see that machine again, remember, that was the machine it took so long to wean him from a month or so ago. BUT, he needed it, almost instantly his sats recovered back to 99%. Now, of course, we feel we have taken 3 steps backwards. I am starting to feel helpless and very discouraged. Finally, around midnight we tell our lil angel goodnight and head home.

At 320 AM on Sunday morning my cell phone rang, of course, my heart dropped, it was the fellow calling to update us on Lil Will. He was having some trouble keeping his O2 sats up, and his blood pressure was low and he is beginning to have more secretions in his lungs. He just wanted to keep us up to date on Lil Will. Well, couldn't really go back to sleep after that phone call. I wanted to go to the hospital but the Lord spoke very clearly to me and said to Be still and know that I am God. That same day, William was to begin his first Family Enrichment class, so as usual, if we haven't spent the night at the hospital, we call as soon as we get up. I called and Lil Will was still having some issues with his sats and blood pressure, and maybe had a possible infection. He was started on antibiotics as a precaution until the culture results come back. Immediately, I want to go to the hospital but William has his class at church. He told me he would take me before the class, boy was I tempted but I could still clearly hear the Lord saying to me, Be still and know that I am God! I did but it was very hard. I know it broke WIlliam's heart to leave the house with me crying but the devil could not steal this time that the Lord had ordained for William to begin these Family Enrichment classes. My parents were home with me so he did not leave me alone! =)

During the time while William was at church, I was watching a gospel music video show on BET. The songs were ministering to my spirit as I am feeling again, helpless, somewhat hopeless, discouraged, second guessing decisions we made for Lil WIll to have the surgery. In my mind, all I can think is, all these things he is currently going through are because of the surgery. Logically, I know this isn't true, he needed the surgery, he had to have a means of dialysis while the PD site healed. Its just all of these things run through your mind, because you are human. I am wondering where God is, why hasn't He showed up? Have you forgotten about us God? Then an artist named James Fortune came on to sing, "I'll Trust You". It was answered prayers. It was a reminder that my trust, our trust must remain in God. Even during a storm, we must continue to trust Him. I have attached the song so each of you can hear it, maybe it will minister to one of your soul's. After hearing this song, I felt a calmness, the Holy Spirit surrounded me, comforted me and let me know that all is well. Even though I have pain in my life, God is never far away and I must continue to trust Him.

Sunday was a pretty good day but Monday and today have been great. He is being weaned off the Nitric Oxide machine, his oxygen level on the vent is down to 30% and his O2 sats are 98 to 100%. They turned off the paralytic medicine today, to allow him to move around for a bit. Tomorrow the plan is to stop the CVVH and go back to the Peritoneal Dialysis and begin to wean off the vents and hopefully extubate him. The cultures all continue to be negative, after 72 hours of allowing them to grow. Praise Him!

Prayer Focus for this week is to command miracles and blessings in your lives. Meaning you are decreeing into your lives, there is no question or doubt, when you command. You know God will do it! Everyday this week when we have seen Lil Will, we have spoken commandments in his ears. We command him to listen for the voice of our Father and to allow the Father to speak to him and guide him. We command him to rise up into the destiny our Father has prepared for him. We command healing over his body. We command no infections. We command weaning of ventilators and extubation. God will hear our commands. Let each of us continue to speak things into our lives as though it is and it shall be.

God has been speaking to me regarding a new ministry. It is still in the infancy stage. The ministry will be geared towards parents of hospitalized children. During my time at the hospital, I have been able to witness the trials some of these parents go through. Not having transportation, or enough money for food, or lodging. We are blessed enough to have any of these issues but so many are not as fortunate. I don't know if the Lord wants me to become involved with Childrens through Volunteer services or to seek out the Ronald McDonald House to see what services they offer to these families. I am going to work on my mission statement and see where the Lord will have this ministry go. I am in continued prayer and will share more with you as the Lord reveals exactly what He wants me to do. I am certain, I will be seeking some of you out as this grows.

May each of you have a blessed week. Be a blessing to someone, you don't have to spend money to do this. You can bless someone by offering a kind word, or just by LISTENING to someone who needs to talk. If you let your light shine through, you never know whose dark world you have shined upon. Remember the smile you see could be a cover up of the pain someone hides deep within. Don't be too busy in your day to day life and miss out on a chance to bless someone!

Ups and Downs

Where do I begin?? The last few days have been filled with highs, lows, ups and downs. As you know, Lil Will needed to have another catheter placed to begin hemodialysis, this had to be surgically placed. So, along with surgery comes conversations with the surgeon and the anesethiologist discussing all things that could happen, (infections, bleeding etc) certainly did not want to hear any of this.
But, what choice do you have? Your child needs this surgery, without which, his kidneys could fail BUT you are scared of the surgery complications. What do you do? I will tell you what we did, we prayed, we spoke healing words over Lil Will and left it in God's hands as we walked with him to the OR. The one thing we didn't expect was that Lil Will would cry. It absolutely broke our hearts. I know he wasn't crying because he knew he was going to surgery but rather because his binkie fell out of his mouth when I let go of it so I could kiss him! =) Nonetheless, it was hard to see.

He came out of surgery just fine, so the next step was to get him started on the Hemodialysis machine(CVVH). I knew something was not right when every time the concierge called back to see if I could go and see him, I was told in 30 minutes, in 45 minutes. Finally, after a few phone calls, I said, "I want to see my baby!" The nurse agreed that I could come back for a few minutes as they were trying to get the machine started and needed a sterile environment so they would keep the number of people in his room to a minimum. Still, my mother's intuition said, "Something is not right?!". Instead of insisting, I stood by Lil Will's bed, said a thanksgiving prayer and knew God had it under control. I returned to the waiting room to WAIT. By 9 PM, we still could not go back, so I prepared to go to sleep and just continued to be patient and wait. I fell asleep, awakened at 3 AM, thinking, oh my gosh, I haven't heard anything. Well, William had already gone back to see him and said you can go back there, he's fine. When I went to Lil Will's room, the nurse explained to me that they were unable to get him on the machine. At the time, I was very disappointed b/c here we had agreed for him to undergo this surgery specifically for this type of dialysis and it is NOT working. Are you kidding me? Then, I began to second guess our decision and started to wonder about these docs?! God corrected my thought process and said, " I am in control. I need you to be still and know that I am God." I prayed again and went back to the waiting room to go to sleep. The night nurse did try one more time to get him on the machine around 630AM but to no avail, Lil Will actually dropped his O2 saturations to the 20's, for him and his cardiac condition, his sats should be no lower than 80. The respiratory therapist had to hand bag him, gave him a few 100% oxygen breaths and he finally recovered. We of course, did not find out about this until rounds.

The physicians rounded and decided that the reason the CVVH machine did not work was the placement of the catheter in Lil Will's neck. First thought for me was, NO!, not another surgery to correct this! Dr. Scwartz, Lil Will's attending physician wanted to try re-positioning him on these wonderful foam things called Z-flows. His nurse for the day, Shelly, re-positioned him and then they drew up some syringes to trouble shoot the ports that are attached to the catheters. The trouble shoot was to see if she could pull back blood when she inserted the saline filled syringe. It worked, so praise God it was NOT a problem with the catheter, it was strictly positional. Okay, so now we can get started on the CVVH machine. Keep in mind, he has not been on dialysis for almost 48 hours, so the toxins the kidneys void are not being voided from his body and he is beginning to retain fluid again. Just as they begin to start the machine and prime it with blood to be transported in and out of Lil Will's body, his nurse pulls his blanket back to check his diaper and there is fresh blood everywhere! He is bleeding from the Peritoneal Dialysis tube site. Oh, my gosh, my heart drops to my stomach, what is going on? The nurse is holding pressure on the spot, changing gauzes that are blood soaked. We are watching this happen, I am crying but my husband continues to be the wonderful man of God, he comforts me, while I am certain, he is aching on the inside but he does not want me to see his pain. Finally, the surgeons come in to see if he is bleeding from the site or if it appears to be internal bleeding. It is from the site, so they pack it with some sort of stuff, can't remember the name of it but it worked and as of today continues to be fine. What the Lord showed the physicians is that Lil Will cannot have alot of Heparin(blood thinner) because the coagulants(blood clotting) are not working well. Labs are sent to check his a variety of levels to determine whether he needs to be given platelets. They were low so they gave him some platelets. He is still being kept sedated and paralyzed. He was intubated for surgery but the decision was made to keep him intubated because they want to keep him sedated during this hemodialysis. Lil Will is strong and likes to move around and this could cause issues with the machine. The previous night, when he was waking up he wrapped his hands around his breathing tube so they had to restrain his hands. I tell you he is a strong, strong little boy! He knew that tube was not supposed to be in his mouth so he apparently wanted it out, thank God, he did not pull it out!

Finally, at 11:15 PM on 2/19, Lil Will was ready to go on the CVVH machine. In his room were his nurse, the Cardiac Nurse practitioner, respiratory therapist, William, myself and we know our Father was present. They primed the new blood and turned it on, the blood was flowing in/out as expected. Lil Will did begin to drop his O2 sats, so they went up on his vent, his blood pressure went down a bit so they gave him some more volume (saline) and all is going well. During this machines use, the blood that is sent to Lil Will is at room temperature so they have to make sure he maintains his temperature so they put a inflatable blanket on him that is connected to a bear hugger. This bear hugger blows warm air and helps him maintain his internal temp. William and I stayed with him until around 1 AM and then went to the family waiting room to sleep. We were both too wired so we talked for another hour or so, just talked about God and how awesome He is. William had a revelation that God has entrusted us with Lil Will to be a blessing to others. He trusted us enough know that we would not sit on this, that we would share it with others. We have been charged to do this, there is a blessing in this and we pray we can help someone find God, or perhaps reconnect and strengthen their relationship with Him. After our talk, I have to tell you it was the most peaceful rest I have had in over 2 months.

I do have to share with you that it is okay to admit your fears to God, He understands. William helped me to realize this, because, my greatest fear has been that our son would die. I was able to admit this fear to the Lord and He comforted me but during that comfort, He reminded me that if I continue to delight myself in Him, He would give me the desires of my heart. He also told me that I needed to cast my cares upon Him, I did it and what a feeling!

The next morning, William went in to see Lil Will, while I went to the lactation room, yep, I am still able to give the best nutrients possible to our son! Praise Him! When I arrived in Lil Will's room, William and the nurse were discussing that Lil Will should have minimal stimulation, meaning he needs quiet so he is not moving around while on this machine. The docs do not want to have to keep him paralyzed and want to minimize the pain meds as well. So, we decided we would limit his visitors to immediate family only. He should be on this machine for the next week while his Peritoneal Dialysis tube heals.

God has given us peace. He has shown us that He is taking care of our baby. He continues to send Lil Will earthly angels (his Christian nurses) to take care of him while He has heavenly angels encamped around his room. We have been so blessed to have wonderful nurses taking care of him.

Prayer focus for this week:
1. Continue to remain infection free.
2. CVVH machine continue to work as intended and heal the Peritoneal Dialysis site.
3. Labs remain at normal levels for lil Will's age. (Electrolytes, blood gases, Hemoglobin, Hematocrit, BUN, Creatanine)
4. Good blood pressures and oxygen levels.
5. Kidney functions return to normal.

We pray each of you has a blessed week. Continue to love each other, smile and live in the moment. Call someone you haven't spoken to in awhile, maybe you had a misunderstanding, do you even remember what it was you were mad at them about? Go for it, swallow your pride, you may be missing out on a blessing. To God be the glory!!!

@!!!@@!!@@@@@!!!!

It has been several days since I last sent out an update on our lil angel. It has been one busy week. Today especially. I had a MAJOR meltdown! It all began when I called to check on lil Will this morning. His Cardiologist answered the phone. She was telling me how great lil Will looks and that he was still on for his heart surgery on Friday. Wait a minute, halt, pump the brakes! Last I was told by the Cardiac Nurse Practitioners was that his surgery was scheduled for tomorrow. Dr. Clapp said let me check, I will call you back. Meanwhile, I called my parents and Will, pretty irate, all of my senses just escaped me, I lost it. Of course, my wonderful parents and husband were able to calm me down and remind me that EVERYTHING happens in God's time. Of course, I know this, BUT for a brief moment, well actually, it was for a nano second, the devil was able to creep into my mind and attempt to play tricks...NOT! The devil is not welcome in our lives, I did tell him this as I crushed his head, his body and his tail as I praised our Father for His faithfulness! Hallelujah to the King!!!!

So, to sum up how we got to this point, yesterday, his Peritoneal Dialysis site began leaking again. His nurse changed the dressing and looked at the site and all looked well. Today, it showed evidence that it leaked again, so his PD was stopped by the kidney docs. It was stopped to minimize the risk of infection. We certainly do NOT need any infections. So, this means there will not be heart surgery tomorrow as originally planned. As mentioned before the PD's primary function is to act as lil Will's kidneys, keeping his sodium and potassium levels regulated. If the PD is not working, the surgery cannot take place as there would be no way to remove the fluid from lil Will. We were told this afternoon that lil Will would need to have a catheter placed in his clavicle area to begin CVVH dialysis, this is basically removing blood and filtering it in a machine and then sending it back to lil Will. (This is very similar to adult or older kid dialysis). This procedure was planned for tonight but the Chief of Cardiology, Dr. Forbus returns tomorrow and has advised the other docs to not do anything until he is able to review Lil Will's case. We are on hold, yet again.

William and I are spending the night here tonight so we can be here when rounds happen tomorrow morning. We will keep you posted on what the next step is once we have spoken with his physician team.

I do want to share with you something that my mom sent me today. As usual God sends the right word when you need it.

The scripture reference is Psalms 37:7 Surrender yourself to the Lord, and wait patiently for him.
Subject: Surrender: Let Go and Let God Work (by Rick Warren)

Surrendering your life means:
Following God's lead without knowing where he's sending you;
Waiting for God's timing without knowing when it will come;
Expecting a miracle without knowing how God will provide;
Trusting God's purpose without understanding the circumstances.

You know you’re surrendered to God when you rely on God to work things out instead of trying to manipulate others, force your agenda, and control the situation. You let go and let God work.You don’t have to always be in charge. Instead of trying harder, you trust more. You also know you're surrendered when you don't react to criticism and rush to defend yourself. The supreme example of self-surrender is Jesus. The night before his crucifixion Jesus surrendered himself to God's plan. He prayed, "Father, everything is possible for you. Please take this cup of suffering away from me. Yet I want your will, not mine" (Mark 14:36 NLT). Jesus didn't pray, God, if you're able to take away this pain, please do so." He began by affirming that God can do anything! He prayed, "God, if it is in your best interest to remove this suffering, please do so. But if it fulfills your purpose, that's what I want, too." Genuine surrender says, "Father, if this problem, pain, sickness, or circumstance is needed to fulfill your purpose and glory in my life or in another's life, please don't take it away!"


This level of maturity doesn't come easy. In Jesus’ case, he agonized so much over God’s plan that he sweat drops of blood. Surrender is hard work. In our case, it requires intense warfare against our self-centered nature.


Isn't this awesome?!?! What a word. Let go and Let God work. Surrender.

Prayer focus for this week is WARFARE prayer. Warfare praying is casting down strongholds. Strongholds such as fear, addictions, depression, sickness etc.
1. Smash all strongholds formed against Lil Will's body (kidney functions, infections, VSD, everything!) His body is the Lord's temple and He will reign supreme in his life and heal him.
2. Smash all plans made by Satan for lil Will's life and our lives.

Heavenly Father, I pray that You would strengthen us. Show us the ways Satan is hindering and tempting and lying and distorting the truth in our lives. Enable each of us to be the kind of person that would please You. Enable each of us to be aggressive in prayer and faith. Enable each of us to give You Your rightful place in our lives. Amen.

We love you all! God Bless!

Surgery?

Well, as you all know, surgery did not happen yesterday but has been scheduled for 2/18/09 and he will be the first case of the day. So, this will be somewhere between 730 AM and 900 AM. No firm time yet. The reason he did not have surgery yesterday was due to a slight elevation of his white blood cells, which could indicate an infection. So far, after 72 hours of the culture growing, it remains negative. But to be on the safe side, lil WIll was started on a round of antibiotics. Of course, we were disappointed but we sure did not want them to perform surgery if he had some sort of infection. Again, God reminds us that He is in control, man can make plans but He is the ultimate decision maker. Everything happens at His appointed time. The nurse did another culture of his PD fluid to check for WBC and so far it continues to be negative!

So, yesterday, lil Will remained in the PICU but late that afternoon, the PICU needed his bed space for a more critical patient, so he was transferred down to the Cardiac ICU floor. He will remain on this floor until he has surgery. It was a mad rush to pack up his room, move monitors and lil Will. Lil Will does NOT like to have alot of people crowding his space, needless to say, he was a very unhappy camper. Matter of fact, he was down right pissed off! He cried and cried and cried. Finally, we made it to the 2nd floor to his new room, very small and dark. This is much different than the 12th floor, lots of light and windows. I was wondering, oh, is he going to like this room? Are we going to have a repeat of what happened on the 5th floor last week? After they got him situated, he fell asleep. His heart & respiratory rates were lower than they have ever been and his O2 saturations were great! It was clear to William and I that lil Will liked his new room and nurses. Lil Will, at such a young age, is a very good judge of character, he has this innate sense to know if nurses are good. This may appear weird to non-believers because how could someone so young know this but to believers, we know, the holy spirit resides in all of us. No matter the age. He has been calm and all of his numbers continue to be awesome on his new floor. He also can sense if his momma is feeling alittle uneasy too! ( I am working on this!)

Our prayer focus for this week is:
1. Will to remain infection free.
2. Kidney Functions return to normal and for Will to continue to urinate.
3. Successful VSD surgery.
4. Praise God for his sovereignty over everything and thank Him for your families and your health!

Ask Him...

Lil Will is doing great back on the PICU floor. William and I are very happy about this. Yesterday, the team increased his feeds to 60 cc's every 3 hours. That is approximately 16 ounces per day. This is a good sign! He now weighs 8 lbs 9 oz!

I want to share with you how the Lord works everything out. Everyday, lil Will has several physicians who come by to see him and discuss any changes that will be made to his care for the day. Most of the time, the physicians round at different times and then discuss his care amongst themselves without us being present and then the info is relayed back to us. Over the past few days, I have been really talking to the Lord about this. I shared with Him that I really want to see these docs round at the same time so they can discuss lil Will's care in one of our presence. I had not mentioned my desire for this to William. I just wanted to seek Him alone on this request. Well, yesterday, He answered my prayer!!
The PICU team, Renal docs and Cardiology docs were together, in MY presence. As we have mentioned before, lil Will has a VSD, that will need to be repaired when he is 3 to 5 months old. The main issue of late has been his kidney functions. This was the reason the Peritoneal Dialysis was started 3 weeks ago, this functions as lil Will's kidneys. Dr. Clapp (lil Will's cardiologist), wanted to wait for this surgery until lil Will's kidneys were back to 100%. Dr. Quigley (Kidney doc) says it could be a few months until Will's kidneys return to normal so we shouldn't wait. He actually feels that his kidneys will recover alot faster if the surgery happened sooner. It was so awesome to see the Lord at work!!! Well, to make a long story short, lil Will is scheduled for VSD repair surgery on February 10. No time yet. Dr. Forbus, Chief of Cardiology for Children's will be performing the surgery. He comes highly recommended by Dr. Clapp (Lil Will's cardiologist). The surgery will take 45 minutes to 1 hour. Dr. Forbus will open up lil Will's chest through his breastbone to gain access to repair the VSD. Lil Will will be intubated again and also be placed a heart/lung bypass machine during the surgery. This surgery will repair the improper shunting that is happening between the lower right and left heart chambers. The VSD is causing lil Will's heart to work harder thus affecting the profusion(blood flow) to his kidneys. The repair of this will help him tremendously as well as make his kidneys work properly.

Meanwhile, lil Will continues to amaze the staff by doing things they don't expect someone who has been lying on his back for the past six weeks to be able to do. Now when he placed on his stomach for "tummy time", he can lift his head up, of course, it falls back down, BUT, his neck muscles are strong enough to hold his head up for a few seconds, YEA! While laying on his back, if you hold his hands, he tries to lift himself up, SMART kiddo. He is cooing and smiling alot when he is asleep. I know he is talking to the angels and God. It just melts my heart to hold him and watch him sleep, and smile and coo! God is so wonderful!

Our major prayer request for the remainder of this week and next:
1. No fever or infections for Will as to not delay the surgery.
2. Successful surgery (anointed instruments, surgeon and assistant's hands remain steady, clear and focused minds and angels coming in contact with Will as nurses, techs, whomever comes into contact with our sweet angel)
3. Extubation shortly after surgery.
4. Repair of the VSD and resolved Pulmonary Arterial Hypertension (PAH).
5. Kidney functions return to normal as a result of his surgery.
6. Continue to keep William and I focused on the divine purpose God has for our family and to remain focused on Him so we can nurture this beautiful child He has blessed us with called William Thomas Carlisle.

Thank you so much for sharing in this journey with us. It has been a tremendous faith walk for me and has really shown me that we are all stronger than we think. With God all things are possible.

Not time yet...

Tonight Will and I left to go have dinner, when we returned, the night attending told us that lil Will had dropped his oxygen sats 3 times to low 80's, high 70's, while we were gone. Normal sats for lil WIll are between 90-100. Due to this, the decision was made to send him back to PICU because the renal doctors do not feel comfortable caring for patients with respiratory issues. They do kidneys, that is the extent of it. Ironically, or shall I say, more accurately, the Holy Spirit shared with Will and myself at dinner that maybe they moved lil Will too soon from the PICU to the floor. We both agreed it was too soon since Saturday was the first time he had breathed on his on since birth. That would have to be a big adjustment for anyone, especially a baby. Well, the Holy Spirit was preparing us for what we would encounter when we returned to Lil Will's room from dinner. God is awesome in that He always prepares you for what's to come, but you must be ready to receive what He has for you, good or bad, stormy or peaceful. You have to be ready in and out of season.

While we were waiting to transport him from the 5th floor back to PICU, he was breathing rapidly, his oxygen sats were dropping and he just looked uncomfortable. When he arrived back to the PICU, all those things subsided and he got better pretty quickly. .Of course, it so happened his favorite nurse, Dawn was working so she came by and helped get him settled.

We are fine, we know that all things work together. He is in grest hands, first and foremost, those of the master and that of the nurses and docs on PICU.

God Bless each of you!

Out of PICU!!!

Great news...lil Will has been moved from the PICU to the floor on yesterday, another awesome anniversary present. Our son has given us two great gifts in two days. Can you imagine what he will give us one day when he actually has a job?!?! He is now on the renal floor, the nurses and docs on this floor specialize in kidneys and dialysis. So, since lil Will still has the Peritoneal Dialysis, that is why he was moved to this floor.

The PICU docs and staff hated to see him go, they really love our lil guy. At the same time, they were extremely happy that he has made so much progress that he does not require intensive care. Praise Him!!

Now, although I am so excited about him leaving PICU, there are certain comforts I became accustomed to. For instance, if a chest xray is ordered, in less than 5 minutes, the xray is done, on the floor it may take a hour. The nurses move a bit slower than the PICU nurses, different requirements,logically I know this, but as a mom, I want it done NOW! Pray for me. =)

Since he is now in the floor, he is in a crib, not a warmer! Yea! I can hold him all day now, well, not all day, but certainly as much as I want to hold him. He loves it! He usually goes right to sleep almost instantaneously! On the floor, they encourage us to stay with him at night. So, we will be staying here the majority of the nights. I don't think we will be getting much sleep since lil Will is still a bit confused on his days and nights. We are certainly going to work on this before he gets discharged!

He does continue to urinate. His BUN is at 12 and his creatanine is at 1.8 . Normal levels for creatanine are 0.1-0.8 so we have a bit to go but it is certainly much better than it was two weeks ago. Progress. Progress. Progress.

He is now having speech, physical, occupational and massage therapy. The speech therapist is working with him on his sucking, swallowing and nippling functions. He is enjoying the pacifier, he likes to suck it. She tried a bottle but he didn't like it too much. We will continue to work with him, it will take some time. His physical therapist works with him on his range of motion and also focusing his eyes on objects both in front of him and moving side to side. He is doing good with this therapy. He enjoys the leg excercises alot. His occupational therapist works with him on feel and touch. She places rattles and other objects on his stomach and moves his hands to touch them. She also helps him with his grasp, as you have seen on previous pictures, he's got that down! And finally, his massage therapist, YES, he gets a massage! It is just to make him comfortable.

Prayer focus for this week:
1. Lower Creatanine level to normal and increased urination to normal levels.
2. PAH (Pulmonary Arterial Hypertension) resolution.
3. Reduce Oxgyen on Nasal Cannula to 0 liters, currently at 1.5 liters. He was on 10 liters as of 1/31/09.
4 No infections and excellent lab results.
5. VSD surgery ( this will repair the hole, lil Will has between his lower heart chambers) No date yet for surgery but it will be in the near future.

Thank you for your continued prayers, love and support. We know God will see us through but it helps so much knowing we have each of you standing beside us during this journey. God bless each of you!