Finally, I get to hold my baby!!!

Lil Will was extubated successfully today! He is so handsome! What a treat to actually see his cute lips and chubby cheeks! I was present when the respiratory tech and physician extubated him, what anxious moments, what thoughts ran through my mind, I actually felt like I might need them to give me some oxygen before I hyperventilated! It was over before I knew it and my lil angel cried, although raspy and hoarse, a cry I have been waiting to hear for 35 days, 4 hours and 18 minutes. It was the best, I can't really describe the emotions I felt at that very moment. Of course, I cried, and the medical team in our room shed a few tears too. Praise God!

They placed a nasal cpap on Lil Will. It is vasal machine that provides oxygen for him, they are small prongs that are placed in his nostrils. The blowing noise of the oxygen is kind of loud, so it is quite alarming to him. I'm sure he was wondering what is going on? What happened to that tube? What is this noise? He was a bit agitated. He cried and cried. The nurse gave me a pacifier to help try and soothe him. Most Down Syndrome kids have issues nippling and/or sucking. Not, my sweetie pie, he latched on to the pacifier and sucked it! Boy, another flood of emotions came over me!

I finally was able to hold him around 7:30 PM! This was another long anticipated moment I have been waiting for too. It was the best feeling to have that little guy in my arms. He loved it too, as he relaxed and went to sleep! Of course, I never want to put him down because I have had to wait so long to hold my baby. I knew I had to, at least until I go back to the hospital tomorrow! The day is very near where I will be able to sit and hold him for hours...its called DISCHARGE!

His labs continue to be awesome. His BUN is finally in the normal range, it was 15 this morning and his creatinine level is 1.8, getting closer to normal! He is continuing to produce more and more urine. Still are praying for more urine. Overall, lil Will has made tremendous improvements since his admittal to Children's. God has performed some miraculous things in lil Will's short life. He does all things well!!!

Again, many blessing to each of you for your continued prayers and love. We love and appreciate each of you.

Lil Will continues to improve....

Great news, if all goes well Lil Will is going to be extubated (breathing tube removed) mid-morning tomorrow! He has been breathing over the machine previous to them putting it on auto mode so all should go well tomorrow. To prepare for this momentous occasion, his feeds will stop around 4 AM tomorrow morning so his stomach is empty during extubation to prevent any gastric issues. We are very excited and are anxiously awaiting holding our little guy.

His kidney function numbers continue to improve. Today, his BUN is 24, normal is around 18, but if you remember, God has brought him a long way since his BUN was 101. His creatanine level is hanging steady at 2.1, this number is more indicative of his kidneys beginning to function normally. Yesterday, the peritoneal dialysis was able to pull off over 350 cc's of fluid, the most he has pulled off to date. His other labs are looking awesome.

The clinical nutrionist increased his feeds to 17 cc's per hour to increase his caloric intake and he has tolerated that increase well. This increase in feeds is certainly keeping me very busy, I have to keep up with him! =)

He continues to have physical therapy daily and is doing exceptionally well, per the therapist. He has good grasp (attaching a pic of him holding his daddy's finger), good range of motion in hips and we are working on this shoulder movements. I continue to work with him throughout the day so when he can stay on task for his developmental skills.

Things are progressing slow and steady. We again thank you for your continued prayers and love. God Bless each of you.

More updates to come......

Praise.....

Hi all-
Will's physician team just completed their rounds on him. Awesome news, Will is being allowed to breath on his on, they have placed his ventilator on auto mode. What this means is they turned off the ventilator and he is breathing WITHOUT help. If he by chance he misses a breath the machine will automatically kick in and breathe for him. Dr. Thomas also said that if this goes well over the next few days, they will begin to think about removing the breathing tube. Praise God!

We will keep you posted on his progress. We are so excited and full of joy!

Again, thanks for your continued prayers!

God is good!

God is good! We are thanking God for His grace, for His mercy and His steadfast promises! Will is doing so awesome. He continues to have fluid reduction in great amounts, over the last two days he has lost over 550 cc's of fluid! The Peritineal Dialysis (acting as his kidneys) is really working. He is really starting to look like our little baby, again! As the fluid reduction continues, it inches us closer and closer to the physicians removing Will from the ventilator. He does an excellent job of breathing over the vent, but as mentioned before, until the fluid comes off, the vent stays on b/c they do not want to put any unneccesary pressure on Will's lungs until all fluid is gone.

His kidneys are working not like they should but he does urinate, usually about 10 to 20 cc's per day. So, his kidneys are not functioning at 100% but we do know they are working and it is only a matter of time before they are fully functioning again. We are standing and believing by faith that God will show up and show out, in His time.

Will's labs continue to be excellent. Today, they will stop giving him a steroid medicine called hydrocortisone, that is great news as sometimes this drug, which helps alot, can also hinder the kidneys from working as they should, so another milestone reached, another medicine gone!

We are excited about Will's progress but we must admit we do grow impatient because we want to hold our baby and bring him home. However, yesterday the Lord sent an angel to visit with me in the form of Will's kidney doctor. We were talking about the slow but steady pace of the fluid removal and my wanting it off so Will can come off the ventilator. He said to me without hesitation, " I want you to remember that anything that happens quickly in the PICU, is usually not a good thing, so you should want slow and steady." Boy, did that bring it home for me. Later, yesterday, I was able to witness what the angel had said to me earlier in the day, two families lost their babies yesterday, one was a baby and the other was a 14 year old girl. As this was going on around us, Lil Will and I just happened to be singing, CeCe Winans song, "Comforter". We prayed at that moment that God would offer comfort to the families of their loved ones lost. I know how blessed we are even though Will is still in the hospital, at least he is here, God is making him stronger everyday and we are very thankful.

Prayer focus for this week:
1. Kidney functions return to normal.
2. Continued fluid reduction.
3. Removal from ventilator.

Our prayer for each of you is that God continues to strengthen each of you where you may be weak. That He will bless your homes, your finances, your health and that of your loved ones. That He will continue to keep you safe and in His care. We love each of you and thank you for continuing to intercede on behalf of our family. To God be the glory for the great things He has done!


Miracles and many blessings,

Faith....

Well, its been a few days since we last sent an update on our little munchkin William. His daddy went back to work on Monday so he misses seeing him all day, his daddy comes by to see him everyday after work! This brightens lil Will's day!

Overall, Will is doing much, much better. All praises to God! He is continuing to breath at least 35 to 45 beats per minute above the ventilator. They hope to wean him off the ventilator and then just leave the ventilator on auto mode, meaning if he misses a breath the machine will automatically take over. They also are trying to wean him off the Nitric Oxide, he is only receiving .5L but everytime they turn it off, his O2 sats drop from the 95's to 100's to 83 - 88. So, they have to turn it back on. They have weaned his fentanyl drip (pain management) so he is opening his eyes, wiggling his toes and hands and will even grip your finger when you put in in his hand. He definitely recognizes our voices. PT/OT have been by to see him twice. They say he has good range of motion and actually is pushing back at them with his feet. He coughs and today even looked like he wanted to cry. He has the hiccups at least 2 or 3 times a day. He is 22 inches now, and his weight can't really be determined accurately b/c he is quite edematous. (lotta fluid) It is so amazing to watch him get better day by day. God is so amazing.

The nursing staff has been great! Since Will is more stable, we are able to do more with him. I was able to help mix some formula with "my nutrients" and put it in the syringe which feeds to him through a NG tube. He is now on full feeds, yea! They have shown me how to suction him when he blows spit bubbles, pretty neat! I can lotion his body and give him massages. It is really nice to be able to touch and love on him.

I told William that we needed to be more specific in our prayer request for Lil Will. We continue to pray for his total recovery and ultimate release from the hospital as a healthy and happy baby. However, there are some immediate prayer request for his needs now that will help us get to his discharge alot sooner.

So, this week's prayer focus is going to be the following:
1. Kidney & Liver functions to return to normal.
2. Continue to be infection free and normal lab results every time labs are sent!
3. Continued fluid reduction to normal weight.
4. 100% wean off Nitric Oxide
5. Extubation - removal of breathing tube = WE CAN HOLD HIM!!!
6. Care Team members and physicians are given wisdom and knowledge to care for our baby.

We are faith believers and know that God is a healer and in the business of making miracles. If we go to him with specific prayer request, He will answer prayers. We are standing in agreement with all who are apart of this email that where 2 or 3 of us are gathered, our Father is in the midst of us. He will hear our prayers and deliver the prayer needs of His children. We are thankful to have such a wonderful church family and great friends.

Trusting in the Lord.........

Well, its been a few days since we last sent an update on our little munchkin William. His daddy went back to work on Monday so he misses seeing him all day, his daddy comes by to see him everyday after work! This brightens lil Will's day!

Overall, Will is doing much, much better. All praises to God! He is continuing to breath at least 35 to 45 beats per minute above the ventilator. They hope to wean him off the ventilator and then just leave the ventilator on auto mode, meaning if he misses a breath the machine will automatically take over. They also are trying to wean him off the Nitric Oxide, he is only receiving .5L but everytime they turn it off, his O2 sats drop from the 95's to 100's to 83 - 88. So, they have to turn it back on. They have weaned his fentanyl drip (pain management) so he is opening his eyes, wiggling his toes and hands and will even grip your finger when you put in in his hand. He definitely recognizes our voices. PT/OT have been by to see him twice. They say he has good range of motion and actually is pushing back at them with his feet. He coughs and today even looked like he wanted to cry. He has the hiccups at least 2 or 3 times a day. He is 22 inches now, and his weight can't really be determined accurately b/c he is quite edematous. (lotta fluid) It is so amazing to watch him get better day by day. God is so amazing.

The nursing staff has been great! Since Will is more stable, we are able to do more with him. I was able to help mix some formula with "my nutrients" and put it in the syringe which feeds to him through a NG tube. He is now on full feeds, yea! They have shown me how to suction him when he blows spit bubbles, pretty neat! I can lotion his body and give him massages. It is really nice to be able to touch and love on him.

I told William that we needed to be more specific in our prayer request for Lil Will. We continue to pray for his total recovery and ultimate release from the hospital as a healthy and happy baby. However, there are some immediate prayer request for his needs now that will help us get to his discharge alot sooner.

So, this week's prayer focus is going to be the following:
1. Kidney & Liver functions to return to normal.
2. Continue to be infection free and normal lab results every time labs are sent!
3. Continued fluid reduction to normal weight.
4. 100% wean off Nitric Oxide
5. Extubation - removal of breathing tube = WE CAN HOLD HIM!!!
6. Care Team members and physicians are given wisdom and knowledge to care for our baby.

We are faith believers and know that God is a healer and in the business of making miracles. If we go to him with specific prayer request, He will answer prayers. We are standing in agreement with all who are apart of this email that where 2 or 3 of us are gathered, our Father is in the midst of us. He will hear our prayers and deliver the prayer needs of His children. We are thankful to have such a wonderful church family and great friends.