Nicu Day 132 - DISCHARGE DAY

Will weighs 6lbs 6oz or 2890 grams on DISCHARGE DAY! This is the day we have been waiting for for 132 days or 19 weeks. Today Will is 19 weeks old and we are getting DISCHARGED TODAY! The Lord is good! He knew in his book of life plan for Will that we would spend 132 days in the NICU. He knew that Will would be born at 9:19am on Thursday, January 19, 2012 at just 24 weeks and 5 days premature and be discharged from the NICU just 19 weeks later on Thursday, May 31, 2012.

As we struggled with infertility for 3 years, the Lord has blessed us with the perfect twin boys he specifically formed for us. We can never give HIM enough thanks for what HE has done. Will is a living breathing testimony of God's power and his grace and his brother Drew is the angel that has been looking over him for the last 132 days. Drew made the ultimate sacrifice for Will to survive. Drew, you were loved so much and will NEVER be forgotten. We miss and LOVE you sweet Drew. Thanks for watching over your brother and being the best guarding angel he could ever have.

We have met the most amazing team of nurses and doctors at the NMMC NICU and will truly miss each and everyone of them. They have been with us through the tough times and the happy times. God placed special angels in our lives when we needed them the most. We have made true friends for life and will forever be grateful to each and everyone who had a special part in taking care of our son's life. We can never repay you for all the things you did to perfectly form him and his perfect little head, to love on him each and every day, to call and check on him while you were off work, and just to simply pray over him and talk to him each and every day. There are not enough words to tell you how grateful we are for your loving care you have given to our son for 132 days.

So from the bottom of our hearts THANK YOU!

Please continue to pray for Will as he will have lots of follow-ups with the pediatric cardiologist, the surgeon, the retinologist, and the regular routine pediatrician visits. We are excited about what God has in store for us and for Will. Our prayer is that God will use us and Will in a special way and for a special purpose as we bless and glorify his name FOREVER.

To all our blog readers, thank you for your daily prayers. Please feel free to continue to read about Will's progress. The blog will not stop just because he is out of the NICU. I will continue to update the blog and share with you his wonderful progress.

Psalm 34:1 I will bless the LORD at all times; His praise shall continually be in my mouth.

NICU Day 131 - Part 2

Well we got word this afternoon from Dr Darling that if all goes well tonight then tomorrow is the day we have been waiting for for a LONG time. Tomorrow is discharge day! Will will have blood work and a chest xray in the morning just to check and make sure all is well before we are discharged around 1pm tomorrow. I will post more once I know we are officially walking out of the NICU with Will in hand. I don't know if we will be able to sleep good tonight knowing our life will change forever but for good too with Will home. Please continue to pray for Will as he will have routine blood work and a chest xray and that nothing turns up wrong.

Nicu Day 131

Will weighs 6lbs 5oz or 2880 grams. The eyes have improved DRAMASTICALLY!!!! Dr Brawner was in complete shock at how vast of an improvement his eyes have made!! I cannot thank you all enough for your prayers. We are crying tears of joy!! The LORD IS GOOD!!! PRAYER IS POWERFUL!!!!!!!!!!! From the bottom of our hearts we thank you so much for your prayers. We will still have to do weekly follow up visits with Dr. Calzada in Memphis though. Thank you all!!!!!!!

NICU Day 130

Will weighs 6lbs 3.6oz or 2825 grams. He will have a repeat car seat test and his eyes checked tomorrow. Please join us in prayer as we pray for the healing of his eyes. We ask you to pray continuously with us as we await a very important eye exam tomorrow at around 1pm. We ask you to ask all of your friends to join us in prayer for Will's eyes. We ask that you pray specifically for God to heal Will's eyes and that it will be HIS will and not ours. Prayer warriors we need you right now. The eye exam tomorrow will determine whether or not we can get released on Thursday or if we have to go back to Memphis again for more eye shots. Please, please, please join us in prayer as we pray non-stop from now until tomorrow when his appointment is at 1pm. I don't ask for much, but all we are asking is for this to be the chance we can bring Will home this week.

"Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you." 1 Thessalonians 5:16-18

Nicu Day 129

Will weighs 6lbs 3oz or 2810 grams. All his blood work looked good. His echo has not been done yet. No changes today. Happy Memorial Day!

Nicu Day 128

Will weighs 6lbs 1.7oz or 2770 grams. He will have an ekg and lots of blood work due in the morning. They have increased his bottle feeding to 70-80mls. He is getting fat and big.

Nicu Day 127

Will weighs 5lbs 15.9oz or 2720 grams. He had a good night. We are not being discharged today. They are keeping us till his next eye check up on Wednesday. We should know more Wednesday if he will need to go back to Memphis on Thursday. As far as the changes today his bottle feeding is now 65-75mls and he is supposed to have an echo follow-up scan on Monday but that may change because it is a holiday.

Nicu Day 126

Will weighs 5lbs 15.2oz or 2700 grams. He had a good night given all he went through with his eyes yesterday. All his blood work and chest xray looked good. There are no changes for today.

Eye Appt Update

Will had to have eye injection shots to prevent a possible retina detachment. We will follow up in a week. He will need prescription eye drops for a couple of days. He did great during the procedure. This should correct the problems he was having with the ROP but it doesn't guarantee he will have good vision. There still is a lot of eye development issues going on which is due to his very early premature age. Thank you to our fabulous Nicu transport team, Jessica and Brad.

Nicu Day 125

Will weighs 5lbs 14.5oz or 2680 grams. He is loaded up and we are headed to Memphis to see Dr Calzada, a retinologist, at the Charles Retina Eye Institute to get his opinion on Will's eye problems. He will determine if shots will be needed or we will just monitor his eye problems.

Nicu Day 124

Will weighs 5lbs 13.3oz or 2645 grams. He failed his carseat test but they will retest again tomorrow. If he fails that one the Nicu has a dreamrider carseat he can use. His eye check up today was not good. Dr Brawner is seeing somethings he is not liking in his eyes so instead of going home tomorrow we are headed to Memphis for a consult with an eye specialist. Please pray for us as Will is transported by the Nicu staff tomorrow and for safe travels.

Nicu Day 123

Will weighs 5lbs 12oz or 2615 grams. So far everything is going good. The orders for today are for the carseat test!!!!! Will has to sit in his carseat for 30 minutes without dropping his oxygen saturation levels. If he passes that and all goes well with his eye exam tomorrow then THURSDAY will be the day we have been praying for for a very looooong time. Thursday will be the day we can bring our sweet boy home. As the day draws closer we are sooooooo nervous, anxious, excited and scared to death all in one. We know the Lord will take care of us since he has brought us this far. Please join us in prayer as we prepare for Thursday and also for his eye check up on Wednesday. We also have a lot more orders for follow up visits with the surgeon, pediatrician and the Nicu follow up clinic.

Nicu Day 122

Will had another good night. He weighs 5lbs 10.7oz or 2570 grams. They are still monitoring him. They assured us we will go home this week. He will have a CBG to check his blood gases and an eye exam on Wednesday and hopefully after those we will be in the clear to go home.

Nicu Day 121

Will is doing good. No change in weight. His feedings by bottle were updated to 60-70mls. All is well with Will today.

Nicu Day 120

Will had another good night. He weighs 5lbs 9.8oz or 2545 grams. He has not had any more spells. I gave him a bath today and he feels so much better. When he is bottle-fed his minimum is now 55mls instead of 50 and can have up to 65mls. He is a growing boy.

Nicu Day 119

Will had a great night. He weighs 5lbs 8.2oz or 2500 grams. The doctor has reviewed all his charts and says he can't figure out what caused his episodes. We have changed a few things and they will continue to monitor him for a while. His blood levels are showing signs of being low so they are going to start his procrit or epgoen shot for a few days to see if his blood levels will rise.

NICU Day 118 & Happy 17 Weeks

Will weighs 5lbs 7.2oz or 2475 grams. We worked with the specialist again at his noon feeding and he did sooooo much better. We might have solved his problem but they are still wanting to monitor him for a while. Which is totally fine with us! I forgot to mention that he is 17 1/4" long.

Also, his eye check up yesterday went ok. His eyes were very much more dialated this time than last so Dr Brawner could see a clearer picture of what was taking place. He actually got a better look and Will's eyes are in stage 3 rather than stage 2. So in other words, his eyes have gotten a little worse but this time Dr Brawner got a better look because his eyes were dialated better than his last eye check up 2 weeks ago. He wants to continue to monitor Will and see him in another week, whether it be in the hospital or in his office.

Update on Will

Yesterday at noon Will decided to throw us for a loop. He got his eyes dilated for his eye exam and then ate. He wasn't very interested in eating yesterday so he desated and dropped his heartrate several times during his feeding. I then put him back in his bed because he was extremely tired. He then tried to act like he was getting strangled, coughed, and sneezed all at the same time and then completely dropped his heartrate and decided not to breathe. They had to put his nasal cannual back on and then oxygen bag him to get him to breathe again. He came too and they removed the cannual and he was fine. He slept the rest of the day. At his 4pm feeding he was fine. At his 8pm feeding, he ate good but when we put him back to bed he had another episode. At his 12am and 4am feeding he did fine for his nurse. At his 8am feeding this morning, we were observed by a feeding specialist to see if she could tell what the problem was. He was swallowing good and taking good breaths while eating. He was very tired and didn't eat as good as he had been. We will work with her again and try some new techniques to see what is causing his problems. It might be reflux or something else. If it is reflux then they will put him through a swallow test to see if that is the problem.

As of right now, the doctors are going to continue to watch and monitor him. We will not be going home on Saturday. He said he will change his discharge date to Monday but that may change as the weekend progresses. We just don't know anything yet. We are not leaving until we figure out the problem and what is causing Will to all of a sudden have theses episodes.

Please pray for us as we are literally scared to death now and that our nerves will calm down. Please pray for everyone involved that they can work to figure out what is causing Will to have all of these episodes all of a sudden. We need your prayers for our sweet, precious Will who we long to have home soon.

Nicu Day 117

Will had a good night. He weighs 5lbs 5.9oz or 2435 grams. He has not had a good day. The doctors and nurses are watching him closely and we might not be able to go home on Saturday. Please pray for Will.

NICU Day 116

Will had a great night. He weighs 5lbs 4.1oz or 2385 grams. He will have a blood gas in the morning and a chest xray. They increased his feedings by bottle and can take between 50-65mls (30mls = 1oz). We are so excited about Saturday that it can't get here fast enough. We are ready for him to come home.

I love this song "Long Way Home" by Steven Curtis Chapman. It is a perfect description of our NICU journey so far. It has definitely been a long way to get Will home but by God's faithfulness and his promises to us we are gonna make it HOME on Saturday.

Long Way Home
by: Steven Curtis Chapman

I set out on a great adventure
The day my father started leeding me home
He said there gonna be some mountains to climb
And some valleys we’re gonna go thorough
But I had no way of knowing
Just how hard this journey could be
Cause the valleys are deeper and the mountains are stiper
Than I ever would of dream

But I know we’re gonna make it
And I know we’re gonna get there soon
And I know some times it seems like we……
Doing the wrong way
But it’s just a long way home

Some rocks in my shoes fears I wish I could lose
They make the mountain so hard to climb
And my heart gets so heavy
With the weight of the world some times
And there’s a bag of regrets
I should have been and not gets
I keep on dragging around
And I can hardly can wait till the day I could lay them all dawn
Well I know that day is coming
And I know it’s gonna be here soon
And I know I won’t turn back even if the whole world
Says I’m doing the wrong way
Cause it’s just a long way home

And when we can’t take another step
The father will pick us up and carry us in his arms
And even on the best days
He says to remember we’re not home yet
So don’t get too comfortable
Cause what you really are is just pilgrims passing through

Well I know that day is coming
And I know it’s gonna be here soon
I’ll keep on singing and believing
What all of my songs say
Cause our God has made a promise
And I know that everything he says it’s true
And he promised he would never ever leave us
He’s gonna lead us, He’ll head us home
Every single step of the long way home
So keep on we’re gonna make it
We’re just taking the long way home
Keep on we’re gonna make it
I know we’re gonna make it
It’s just a long way home

Nicu Day 115

Will weighs 5lbs 3.2oz or 2360 grams. He is doing good. The countdown to Saturday is still on for us to take him home. He will get his eyes checked on Wednesday so please pray that goes well. So far he has not had any apnea or bradys so keep praying he doesn't have any more.

Nicu Day 114 & Happy Mothers Day

Will had a good night. He weighs 5lbs 2oz or 2325 grams. Today is my 1st Mothers Day and I'm honored and blessed to be Drew and Will's mother. I'm spending the day with my precious Will holding and cuddling with him all day. He is still off the oxygen and doing so good with his feedings. Our tentative discharge day is SATURDAY!!!!!!!!!! What a great Mothers Day present.

Happy Mothers Day to Karen and Lou. We are honored to call you mom and Will's Nanas too.

Nicu Day 113

Will had a good night. He weighs 5lbs 1.7oz or 2315 grams. He is still doing good off the oxygen. His new orders are to try his feedings off the oxygen. So far he is doing good.

NICU Day 112

Will had a great night. He weighs 5lbs 0.1oz or 2270 grams. They are trying him off oxygen today and will only be at a flow of .1mls or 100 liters during his feedings. Dr Nading said WE COULD BE HOME NEXT WEEKEND!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Did you hear me? We could possibly be home NEXT WEEKEND!!!!!!!!!!!!!!!!! Oh my gosh, we are in complete shock and THRILLED! We still have to get our eyes checked next Wednesday so please pray for a VERY good eye exam. Also, we are officially on the 7 day countdown with no apnea or bradys and we go home next weekend! So PLEASE PLEASE PLEASE pray for no bradys or apnea for the next 7 days. Unfortunately Will will get his 2 months shots today or tomorrow which causes apnea in premature babies. We are hoping this will not happen to him. He will also get circumcised today. Poor thing, more torture. He does have a slight hole in between his heart chambers so we will just have to see a cardiologist in 3-4 months.

I'm so ready to have this sweet boy home!

Yes, I know his pants are too big. We tried a newborn outfit and they still don't fit.

NICU Day 111 & Happy 16 Weeks Old

Will had a good night. He still weighs 5lbs or 2280 grams. He is 17" long as well. His flow was turned back up to 500 mls or .5 liters yesterday to give him an extra boost. He stayed at 21% on room air all day and all night so his flow was turned back down to 200mls or .2 liters today. He will get an eco gram of the heart today, head ultrasound on Monday, more blood work in the morning, move back into his crib, and will qualify again for intermediate care and move when a room becomes available. We love intermediate care!!!!!!

Will is 16 weeks old today. So happy 16 weeks old today sweet Will.

Nicu Day 110

Will had a good night. He weighs 5lbs or 2280 grams. He started opening his eyes and waking up around 1am. He began to get tube fed at 8pm and then was taken off the ventilator at about 8am this morning and the nurses bottle fed him at about 8:30am and he gulped down 50mls. He is now wide awake and I really think scared to go back to sleep. Poor thing!

The only change is tylenol as needed every 4 hours. Blood count and gases were good from this morning. They will leave him on warmer today. 

Change of Plans

They took Will off the ventilator but decided to put him back on. He decided not to breathe on his own. He is still heavily sedated and we will try to come off the ventilator tomorrow. He will get some food by tube until he is ready to feed again.

Post Surgery Update

Will is still doing great. Instead of keeping him on the ventilator for tonight he will come off the ventilator tonight before 7pm and will try to just bottle feed him at 8pm. We are in complete shock. He doesn't want this ventilator at all. The Lord has been good to us!!!!!!

Surgery is done

Surgery is done. He did great! Only had to fix one side. That's great!!! Look what his MSU nurse did to Will! Ugh!!!!!! Candace,  Missy and Renee you are all in trouble!!!

Surgery Update

Will has gone back to surgery. They know the hernia is on the left side but there might be one on the right side. Surgery should take between 20-45 minutes depending on if it is one side or two sides. Keep praying.

Surgery Update

Will is being put back on the ventilator now and will be getting some good pain meds and sleepy drugs. Please keep praying for him. Surgery is still scheduled for around noon.

Nicu Day 109 and Surgery Day

Today is surgery day. Will weighs 4lbs 14.5oz or 2225 grams. Will has already been moved back over to the Nicu side, had a bath, and will soon get his IV.  I'll update more when I know more. Keep the prayers coming for little Will today and his parents too.

Pictures of Will

NICU Day 108

Will weighs 4lbs 14.1oz or 2215 grams. He was running a high temperature of 99.3 this morning whihc is very unusual for him but the nurse checked it later and it was down to 97.8. He didn't eat good for us at 4am or at 8am but his 12noon feeding was much better. I have a feeling he knows something is going on tomorrow. So tomorrow is the big day for his hernia repair surgery. I know he will be in great hands but we are very nervous about tomorrow, me especially. This is something that needs to be done and Will will feel so much better after the surgery with that big hernia gone.

Here are the procedures for tomorrow's surgery. Will will not be able to get any food after his midnight feeding. The nurses will start an IV for fluids and he will be put back on the ventilator sometime in the early morning. Dr. Pigott will be performing Will's surgery and it is usually around 12noon but it could be before or after. He will remain sedated for pain because if he moves too much then he might cause himself to rip the incision and that would be really bad. Will will remain on the ventilator until the doctors feel he is ready to come back off. Once he is off the ventilator he can resume eating small amounts by bottle.

We are nervous about tomorrow. Please pray for peace, patience, the doctor who will perform Will's surgery, the nurses that will tend to him, and everyone else involved in his surgery. He will be in great hands tomorrow but we are still nervous about the whole thing. I will update everyone once I know more tomorrow.

Nicu Day 107

Today Will weighs 4lbs 13.3oz or 2190 grams. He has been having a good day. Today is bittersweet because it is my due date. So that makes Will full term. I am happy and sad at the same time about today. Happy because I got to meet my sweet Will 16 weeks early but sad because I did not get to carry out a full term pregnancy. Oh well I guess the Lord knew what he was doing when he decided to let me see Will 16 weeks early.

As far as today there are no changes.

Nicu Day 106

Will had a good night. We weighs 4lbs 12.4oz or 2165 grams. As far as changes today when he takes a bottle he can get 50-60mls instead of 45-55mls. Let me tell ya this boy is a piglet. He is eating so good.

We have been busy today getting his room ready and all of his things put away. He has a ton of clothes and toys. He is set for when he comes home. We have been so blessed!

NICU Day 105

Will had a great night. He weighs 4lbs 11.3oz or 2135 grams. He is doing fabulous! His parents are doing much better. Please pray for us as we go through surgery on Tuesday and that Will can be free of any pain and not stay on the ventilator for a long time. His chest xray that he had on Monday was so good that the Doctors feel comfortable that he will be on the ventilator for a day or day and half. We are praying for a smooth recovery. So please begin praying with us as we approach Tuesday.

As far as today's orders the only thing is to turn Will's flow down again to 2mls or .2 liters of flow. He is really not requiring much pressure to help him keep his lungs inflated because he is basically doing it on his own. Yeah for flow changes because that is just one step closer to completely getting him off the oxygen all together.

"For with God nothing will be impossible.” Luke 1:37

NICU Day 104 & Happy 15 Weeks Old

Will had a good night. He gained weight and now weighs 4lbs 10.3oz or 2105 grams. Yeah for the weight gain! We finally got the answers we were wanting today after sitting down with Will's doctor. His plan is to have Will's eyes checked again in 2 weeks, have hernia surgery on Tuesday, and he lowered his oxygen flow to 3mls today. We were assured that we should be gone by June 1st. Let' hope! Thanks for allowing me to vent on the blog yesterday, but as parents we were just really flustered given the eye check up and then not knowing what was going on with Will. We appreciate your prayers and we know that God has a special plan for us and Will. Only HE knows when Will will come home and we will continue to be patient with HIM and follow his guidance for our lives.

Nicu Day 103

Will had a good night. He weighs 4lbs 9.4oz or 2025 grams. He got his eyes checked today and they are improving but are not fully developed. The ROP was in stage 2 zone 2 now it is stage 2 zone 3 which is an improvement. It is all of the vessels on the inside corner of the eyes that are not fully developed. Dr Brawner said another 4 weeks and they should be completely developed. What does this means for our going home time, I have no clue. If it is my guess, probably another 4 weeks then we might be going home. Who knows? I'm frustrated can you tell? I want my baby boy home sooooooooooooooooo bad that I can't stand it anymore. I have to keep reminding myself God is in control but when you are literally at your breaking point you just don't know what to do anymore. I'm anxious to get him home and I want it done now and I can't stand it! I wanna be one of those moms who is walking out of the hospital with their newborn baby and it kills me everytime I see that happen when I'm at the hospital. I've waited 4 years to be a mom and to have my baby at home, why am I having to wait again? Ok, now I'm finished complaining. So as of right now, I guess I'll keep trucking on and visiting my little ray of sunshine who greets me every morning with a huge smile and bright eyes. Patience, patience, patience is what I need.

NICU Day 102

Will had a bad day yesterday but a good night last night. He had 3 bradys yesterday within a 12 hour window which is very unusual for him. So the doctor decided to get blood work and switch him over to every other feeding and to put the feeding tube back in. So he was able to rest last night. All the blood work came back good but we are still waiting on the blood cultures to come back. Those will take a few days. Dr Omara decided to go back today with full feedings and see how he does and then get another CRP blood test in the morning to check for any infections again. We were so worried about Will last night that we didn't sleep good but we are right back at it again today. They are trying to make sure he is clear of any infection since he might possibly be having surgery in the coming days. Its good to err on the side of caution when Will has a bad day. Good thing is he gained weight! He weighs 4lbs 8oz or 2025 grams. So hopefully Will can be on the mend today and feel much better. Thanks for your continued prayers.