Bell Curve

In life we're given all kinds of statistics on the likelihood of good and/or bad things happening and with each variable change the percentages change accordingly.  I don't remember much from my stats class or what the percentages each standard deviation from the middle indicated but I know, for whatever, reason we've been on the wrong end.  There's a reason they tell you there is "a one percent chance" or "less than a 1 percent chance" that this or that will happen based on a given situation, but they don't say "there is a "zero" percent chance.  That reason being, for some unfortunate souls, things do happen on that end of the bell curve that balance everything out.

It started with our pregnancy, no doctor seemed to be able to figure out why we couldn't get pregnant.  But after surgeries, fertility drugs and artificial inseminations without success we had to turn to IVF.  We were fortunate, it worked and we were blessed with both transferred embryos taking hold.  Rachel's physician told her she was an "A+ pregnancy" that this was going to be a walk in the park because she was the perfect candidate.  She had already carried a baby to term and was young and healthy so the likelihood of anything going wrong was far away on distant point of some statistical bell curve that we wouldn't have to worry about because odds were so minuscule that it would be relevant to our case.
Then on September 5th Rachel's water broke unexpectedly in the Kroger checkout line like something out of a Lifetime movie.  Two days later at 2:09 and 2:12 AM Rachel gave birth to Adelaide and Wyatt.  Adelaide lived just 3 days and tore my heart in to pieces as I listened to her little heart beat just once in her chest and held my baby girl just one time before she had to be buried.  Wyatt has been a fighter and has lived and is living today, but today was is another day that our family found out we're filling the wrong side of the bell curve once again.
After the first week of life the likelihood of a brain bleed in an infant drops off, after the second week the percentages drop even more as we were told >95% of all head bleeds occur by week two. Here we sit at 21 days of life and we've just found out that Wyatt has a grade III and grade IV bleed.  Now we're left with decisions, the doctors tell us that most likely Wyatt, if he survives, will have some sort of cognitive and/or physical deficits that well significantly affect his quality of life.  The plan, for now, is to observe the bleeds and make sure they don't get any bigger, if they do they're really may not be a choice to make.  At this juncture we're torn, we hear "most likely" just as we've heard so many times already only to find out that we function in the most "unlikely".  Are we to believe that Wyatt will have deficits if he survives because it's "most likely" or are we to believe that he's going to give those statistical projections the finger just like he's given all of them so far? We ask for your prayers for the physicians, the nurses, Wyatt and us as we try to determine what's best for him and our family.

19 days old

I am at the hospital today with Wyatt and he is having a good day. He had an eventful evening last night. He wiggled out his chest tube on the right so they had to replace it and then his pneumothorax came back on the left so they had to reposition that chest tube too in order to get the air out. I talked to the doctor this morning and he seemed pleased with Wyatt's progress since last week and he was more optimistic about Wyatt coming home one day. All of his organs, except his lungs, are doing well. The doctor is hearing bowel sounds and Wyatt is still having bowel movements, which means he is tolerating his feedings. He heard a heart murmur this morning which most likely means his PDA is open again. Justin can explain this much better than I can but basically a place in his heart has opened back up. This is common in premies and right now the goal is to get his lungs healed and then worry about the PDA.
I think our little Wyatt has proved that he is a fighter. I truly believe in the power of prayer and cannot thank you enough for lifting up our son and asking for him to be healed. I am sure that everyone reading this blog has their own prayer requests so I thank you again for adding Wyatt to your list!
Rachel

Progress

Wyatt continues to struggle with his lungs but he has made some progress since he was switched to the NAVA ventilator. Last night the doctor tried him on a nasal cannula again but unfortunately he was not able to blow off enough co2, so he put him back on the NAVA. This morning the doctor had to remove one of his chest tubes and replace it with a new one in order to get rid of another pneumothorax. He has started to get feeds again which is important because that is the only way for him to start growing. He is receiving 1/2 ml per hour and needs to get to 3 ml an hour in order to get enough calories to grow. I do not have a lot of time to post right now but I wanted to give you a brief update and share a new picture.
Rachel

NAVA Vent

Well, Wyatt had a pretty bad day today with ups and downs and some pretty tenuous moments but fortunately, with the help of the physicians nurses and the grace of God we survived another day.    As I know Rachel has told you, one of the added concerns is now Wyatt's heart and the decreased function as a result of the pressure the hyperinflated lungs are continuously exerting on it.  This has been an ongoing problem and because of the recent development of metabolic acidosis its moved to a more immediate concern.  To correct the problem the physicians decided to try Wyatt on a new vent called the NAVA vent.  It functions more like a conventional vent, simulating normal breaths, but the uniqueness of it is in the mechanism.  There is a sensor that measures the neurological impulses that contract the diaphragm to initiate breathing, and the vent initiates breath based on Wyatt's respiratory behavior.  The reason this is superior to the conventional is that often times with a conventional vent it may be trying to push a breath in when Wyatt naturally may be trying to breath out; when that happens in can increase damage to the lungs and puts more stress on Wyatt in general.

The good news is that Wyatt has tolerated the afternoon/evening interventions very well. Dr. Mehta also manipulated the chest tubes a bit to ensure they're in the right position in order to minimize the pneumothoracies that he's acquired.  Along with the new vent and chest tube manipulation, they have placed him on his left side to sleep for now, in an effort to reduce the size of his left lung and push some air into the right to relieve the atelectasis (non functioning lung tissue).  The left lung is much larger than the right and is the primary culprit in the chest cavity pressure battle.  Wyatt has now had three blood gases since the new vent and this last one took place after the other two interventions and resulted in the best levels in 3 days.  He appears to be moving, once again, in the right direction.    Dr. Mehta and the others have been phenomenal and I just want to thank you for all of your prayer support, that the physicians and nurses be given the wisdom and calm to make the best decisions and Wyatt's care and for the Lord to heal what they can't.  We're very happy to be able to bring you news of an upswing and hope that it continues, we just want to bring out baby boy home and we know that won't be possible without the care and compassion of so many of you.

Thank You

Wyatt Goes High Tech

I just got off the phone with the doctor and he and the dayshift doctor have decided to put Wyatt on a new cutting edge ventilator that controls more aspects of his respiratory system. I don't know very much about the ventilator yet but I will be sure to explain it better in my next post. They are also going to start Wyatt on a new steroid that will help address his blood pressure problems. The main goal right now is to reduce the hyperinflation in order to take pressure off Wyatt's heart. Hopefully this new ventilator will do the trick because the doctors are running out of options. They cannot start feeding him again until his heart starts working better so right now they are just maintaining Wyatt's body with machines and medicine. In order for Wyatt to get better he has to gain weight and grow stronger, which can only happen with breastmilk. Justin and I are going to the hospital this evening to see him and learn more about his new ventilator so we will let you know how everything goes.
Thank you for continuing to pray for Wyatt.
Rachel

Heart

Well the good news is that Wyatt does not have an infection in his gut as of today. They have determined the reason for his metabolic acidosis to be the amount of pressure being placed on his heart by his lungs. Unfortunately, the hyperinflation in his lungs is worse and his heart is not pumping blood as well as it had been. They are continuing to decrease the pressures on his ventilator in order to remedy the hyperinflation. The doctor says he is going to accept higher co2 levels to help get his ventilator settings lower. I know ventilator settings probably don't mean much to you all but his amplitude is at 30 and the doctor would like it to be at 22 by tomorrow. To give you some perspective, on a good day the lowest Wyatt has tolerated is 25. I hope that he continues to tolerate the lower vent settings so that his heart will not be under so much stress.
Wyatt is also getting another blood transfusion today because he has had to be pricked so many times for his blood work.
They clamped off one of his chest tubes and are going to take an xray at 12:00 to see if they can remove it. This would bring him down to 2 chest tubes instead of 3. They are also going to do a blood gas at 12 to see if they can tweak his ventilator settings.
Bottom line the doctors are giving Wyatt a 50/50 chance, their main priority right now is to decrease the hyperinflation so that his heart will start working more effectively. Their second priority is to start feeding Wyatt as soon as possible so that he can build up his strength and start gaining weight. Please continue to pray for our little guy!
I am sorry for not updating the blog more frequently but the last couple days have been very stressful, I will try and do a better job because you all have been so committed to reading the blog and praying for Wyatt.
Thanks,
Rachel

Wyatt Needs Prayer

I'm driving to the hospital so this will be a short post because I don't want to wreck! Wyatt's blood is acidodic but his co2 levels are still in the normal range, which leaves the doctor to believe that this is a metabolic issue. They are going to xray his belly to see if he is having any problems with his gut. We knew that his gut could be the next hurdle but we were hoping he would respond well to his feedings. The doctor is not positive that there is something wrong with Wyatt's gut but he suspects it. Please pray for our baby boy.
Rachel

Day 13

Today is Wyatt's 13th day in the NICU and hopefully he will have many more uneventful days in NICU like the last three! He is having a good day today. The doctor increased his feedings by 1/2 a cc again and he had a bowel movement this morning. I'm getting more and more nervous about his gut because the doctor mentions NEC (necrotizing enterocolitis) every morning when he comes to tell me the plan for the day. We are praying that the Lord will protect Wyatt's belly from this devastating disease. There are a few things that have been proven to help prevent NEC. Breastmilk is one and a closed PDA is the other. Wyatt is getting breastmilk through a tube that runs from his nose directly to his stomach and according to his last heart scan his PDA is still closed. Hopefully he will not have any problems with his gut so that his body can focus on healing his lungs.
Thank you again for your prayers and support. Wyatt is still fighting and I hope that with continued prayer he will grow stronger each day!
Rachel

Wyatt: the strength of a warrior

One of the reasons we chose the name Wyatt is because of its meaning. I hope that our little Wyatt has the strength of a warrior because he is going to need it to make it through his stay at the NICU. So far I think its safe to say that we have a fighter on our hands. Wyatt has made it through another day and the doctor has been able to turn the pressure on his ventilator down even more since the last time I posted. His last chest xray came back pretty good, he still has some small air accumulation on left side but the right is completely cleared up. His hyperinflation is still a concern because of the pressure on his heart and because his lungs are down to his 10th rib and they want his lungs to be closer to his 8th rib. His blood gas was good as well and his oxygen levels are staying between 25 and 35. His next chest xray and blood gas are at 4am, so I will update everyone tomorrow when I get to the hospital. We are praying for another uneventful night so that Wyatt's lungs can continue to heal. We cannot thank everyone enough for praying for our family. The Lord is taking care of Wyatt and we know that his progress is a result of all the prayers lifted up on his behalf!
I wanted to let everyone know that my doctors appointment went okay. I have an infection that should clear up with a round of antibiotics. I go back in a week to make sure the infection is gone.
Thanks again,
Rachel

Still Stable

I'm at the hospital with Wyatt today and he is still doing good. The doctors remain cautiously optimistic. The doctor is concerned about the hyperinflation in Wyatt's lungs because his lungs are pressing on his heart. Also, the cysts or blebs are still a major concern because they could rupture at any time and then we would be looking at more chest tubes. One of his chest tubes worked it's way out today so the doctor removed it. He was very agitated yesterday so I think that might be from the tube coming out. They did a head ultrasound and that came back normal. He tolerated his feedings yesterday so they increased the amount they are giving him from 1/2 a cc to 1 cc. We are still very nervous about the feeding because as we have said before they are our next big hurdle.
Bottom line is Wyatt's lungs are in very bad shape but as long as he can tolerate the vent settings and not rupture a cyst the better chance he will have of healing. His lungs need several weeks to heal and grow new tissue. The doctors believe that feedings will help him grow stronger so he can fight his lung disease. He has another chest xray and blood gas at 2:00 so I will let you all know how that goes. I have to go to the doctor today as well because I'm having problems with my incision area. Hopefully it is nothing major because I need my body to heal so I can focus my energy on my family. Thank you for continuing to pray for our family. Love you all!
Rachel

Another Good Day

Justin and I are at the hospital hanging out with Wyatt for the afternoon. He is having a good day today. His oxygen levels have stayed in the 20's, they have been able to wean him a little from the nitric oxide, his chest xray was pneumothorax free, he had a bowel movement this morning and his blood gases have stayed in the normal ranges. So far he seems to be tolerating his feedings but Justin and I are still very nervous that something could go terribly wrong so we pretty much feel sick to our stomachs all day long.
Since Wyatt was doing so well, we decided it would be okay for us to go to church this morning with our moms and Ethan. It was very nice to get in the car and drive somewhere other than the hospital! Kyle's sermon really hit home with Justin and I so we know that it was in His plan for us to be there this morning. We are defiantly in a "rebuilding phase". Please continue to pray our family.
Rachel

Stability Continues

Well I just got off the phone with the NICU, and his blood gas was acceptable and moving in the right direction.  His supplemental O2 requirements are down and his saturations are good, which is encouraging.  The comforting news for the physicians and nursing staff is the fact that he is tolerating lower vent settings and O2 and he's been maintaining the saturations and blood gases, which means that if his lungs do misbehave they have room to adjust and compensate for him.

I've heard so many stories of people that were praying all night last night for Wyatt and my family and and just have to use the words thank you only because I don't have any others.  Your support has been unbelievable and I truly believe the care he received and his response to it is a direct result to the amount of prayer offered on his behalf.

We'll be headed to the Ronald McDonald House as soon as Rachel wakes up from her late but much needed nap.  We'll keep you posted on any developments but please continue to pray through your waking hours for my son and I can only promise that I will raise him to know how much was done on his behalf and the reason he was blessed with life.

Cautiously Optimistic

Just want to let everyone know that Wyatt has made significant progress today. They were able to tweak his ventilator settings enough to try and help prevent another pneumothorax. His blood gases are much better. In fact his co2 is currently too low so the doctor was able to tweak the ventilator again and each time he tweaks it, it decreases Wyatt's chance of having another pneumothorax. Not only has the doctor been able to decrease the possibility of another pneumothorax but he was able to tweak the chest tubes enough to resolve the ones he already had! God is watching over our son today and i truly believe that the doctor he has today is here for a reason! I will forever be thankful to the doctor who took a chance today and quite possibly could have saved my child's life. I know that I probably sound much more optimistic now than I did earlier today but I feel it is important for you to know that even though Wyatt is having a good day today the doctor remains "cautiously optimistic". There are still a million things that could go wrong but we are going to take this opportunity to celebrate a small victory! Wyatt is a fighter and with your continued prayers maybe he can keep fighting until he gets to come home. He has a very long road ahead of him and only time will tell if his lungs can heal from all the damage they have sustained so far, but everyday he stays in the NICU is another day closer to holding him in my arms and I pray that that day will come soon! I can't begin to describe how difficult it is to watch your baby suffer knowing that you are not able to console him. I am so thankful for his progress today and I pray that it is in God's will for my little Wyatt to live a long and happy life! Thank you again for continuing to pray for my family. I love you all very much!
Rachel

New Plan

There is a new doctor here today and he is going to treat Wyatt's condition aggressively. He is increasing the pressure on his ventilator, giving him a blood transfusion, changing his antibiotics and starting to feed him. So far the pressure change on the ventilator has worked! He is down to 60% oxygen and is continuing to drop. They just started giving him blood and the feeding will start within the next hour. The new doctor seems to be more optimistic than the last and is doing everything he can to get Wyatt back on track! Thank you for all of your prayers, maybe it is in Gods plan for Wyatt to come home. I will keep you posted as his condition changes. Please continue to pray for Wyatt and those taking care of him today.

We Need A Miracle

Back at the hospital. Wyatt is stable but his oxygen is up to 100% which means if he starts losing oxygen then they can't give him anymore. The only positive news is that his blood gas has improved significantly and is staying in the normal ranges. There is a new doctor coming on right now and he says that he has a strategy to try and help Wyatt's lungs get better. I hope that he can make a difference but to be honest it is very hard for me to stay positive after all we have been through. I know that God has a reason for everything he does but my heart is already broken over the loss of Addie and now I fear that I may lose Wyatt as well. I pray that God will intervene and make it possible for us to bring Wyatt home one day. Thank you all for your prayers and support. We could not make it through this difficult time without you.
Rachel

Buying Time

I just left the hospital for the night...I hope. Wyatt gave us quite a scare. The doctor did not think he would make it through the night. Luckily she gave it her best shot to save him and was successful for the moment. She did warn us that he still might not survive all of the lung problems he is facing but was pleased with his response to her interventions tonight. Her goal was to buy him some time to heal and that seems to be what she accomplished. She had to use a needle to draw air out of a collapse in his right lung and reposition one of his chest tubes. He currently is receiving Nitric Oxide to help get oxygen to his lungs. These seem to be working because his last blood gas had improved.
At this point we need nothing short of a miracle in order to one day bring little Wyatt home, so continue to pray that his lungs will heal.
Rachel

Wyatt Needs More Prayer

Just spoke with the doctor and she had to put a second chest tube on Wyatt's left side. She is very worried about the reoccurrence of his pneumothorax and the amount of chest tubes he has had to have. I know we keep asking for prayer but please continue to pray for his lungs to heal.

Another day at the NICU

I am leaving the hospital for the afternoon. Wyatt is having a better day today but still not great like he was a few days ago. The doctors warned us that we would take two steps forward and then one step back. Honestly I feel like we have taken 2 steps forward and 3 steps back! The good news is his heart and brain are cooperating now we need his lungs to do the same! The doctor was going to start feeding him today but then scratched those orders. I think we have mentioned before that he is very cautious to start feeds because a preemies gut can turn on you in an instant and his little body would not be able to fight off any type of gut infection. As much as I want the feeds to start in order to help him build up his strength, I also want Wyatt to be healthy enough to tolerate them. They are drawing another blood gas at 4 and we are praying that his co2 has gone down some and that his ph remains good like it was earlier.

Lungs

On my way to the hospital, but I talked to the doctor this morning and Wyatt's co2 is still elevated and they had to replace one of his chest tubes because they found more air on the xray. According to the doctor because he has these cysts in his lungs he is going to be battling multiple pneumothorax during his stay in the NICU. The doctor also told me that the cysts will eventually heal but it could take 1 to 2 years, so continue to pray for little Wyatt's lungs. Thank you
Rachel

Stable

Had quite a scare, his pneumothorax came back so they had to add a chest tube. His CO2 has gotten better and is moving in the right direction. Thank you for all that you continue to do.

Pray

They've had to put a chest tube back in, pneumothorax came back. Today is definitely and fight. Please pray for God's guidance and healing.

Stressful morning

It seems that little Wyatt is going to struggle with his lungs for quite some time. According to the doctor Wyatt has developed some cysts in his lungs that are concerning and will probably give him difficulty down the road. The good news is that his other pneumothorax seems to be gone so they are going to cap his chest tube at 2am and then do an xray at 4am, so hopefully he will get his other chest tube out tomorrow.
While at the hospital this morning his co2 levels went all the way up to 98 which is really bad so the doctor decided to switch him back to the oscillating ventilator. Right before they were about to make the switch his nurse decided to clean out his tube and found a glob which was big enough to hold off the switch and allow Wyatt some extra time to get rid of his co2 on his own. They also decided to put him on his belly for a little while and when they were moving him they realized he had had a bowel movement which is a great sign that his digestive system seems to be working. Currently he is peacefully laying on his belly and awaiting another heal prick to check his co2 levels. I pray that they have come back down and that he can continue to stay on the conventional ventilator. I pray that his lungs will heal and continue to mature so that he will not have too many problems in the future.
I am so thankful that I got to see his sweet face for the first time yesterday even though it was only for short while. I now have his picture on my phone to remind me to be strong for my little Wyatt.
Thank you for all your prayers, love and support.
Rachel

Awesome!

It was nice to hear that word come from Wyatt's nurse when describing the most recent blood gas results.  When we left Adelaide's Memorial we headed straight to the hospital, because just prior to walking in the church we heard from the nurse that his blood gases were not good.  As you can imagine the next hour was full of mixed emotions, we were hoping to get a report of continued stability for Wyatt in order to ease our minds as we went to remember sweet Addie, and instead received news that things weren't quite as peachy as they had been just a few hours ago.  When I called the NICU after leaving the service they the nurse told me that his CO2 was way to high and his pH was low, and the physician made the decision to try to extubate him and try him on a nasal canula to see if that would allow him to breath on his own and perhaps clear more CO2.

He looked great at first, but the blood gases came back showing that the pH was "okay" but that the CO2 had continued to climb.  Being a NICU parent emotionally is akin to being kicked in the manly parts one minute and then winning the lottery for an hour, and then doing it all over again.  Hearing Wyatt had a set back was the kick.  Fortunately the intubation went off without a hitch and he was showing good sats and appeared restful.  The nurse assured us that his vent settings were relatively very low and there wouldn't be a problem getting his pH and CO2 back where they wanted them, so we decided to head for home.  Our last phone call for the nurse we got the news that his pH was 7.35 and his CO2 was 39.6.  They were ecstatic with those results; those were the best results that he had had in his short little life.  That was the lottery ticket!

I have no words to express my gratitude for all of your support.  The words of encouragement have come from all directions, in all forms and from so many people most I know and some I've never met.  You're offerings of prayer have been our saving grace and the cry that has encouraged Wyatt's continued strength and it's often overwhelming.  This evening we celebrated the short life of my daughter who I love dearly and I was amazed at the people who came.  From people who've known me since before I have memories to people who I've literally known less than two months, and all of you have been so supportive.  There were family members, friends, classmates, coworkers from multiple jobs and family friends; people who live here in Louisville and people who drove hours to be here.  There is no way I can thank you, there is no way to tell you just how I feel, no way to truly impart on you just how thankful I am to everyone who has been apart of this journey. There are so many that couldn't make it tonight who've been faithfully praying and offering their support and to them I am also eternally grateful and forever indebted.  Please just know that when Rachel and I say thank you it doesn't scratch the surface how deeply we love each and every one of you.

Thank you.

It Was Worth a Shot

Well they extubated Wyatt (took him off the vent)... And are currently intubating him. It was worth a shot, and actually he tolerated it quite well in most respects but he's just having a hard time getting rid of the CO2 in his blood stream.

We're hanging out at the hospital for a little while so we'll keep you posted.

P.S. I want to thank everyone who came tonight and everyone else who couldn't make it but continues to pray. Your support means everything!

A Friends Gift

Adelaide Taylor Roberts There is a beauty that I've seen, it comes from Heaven, from God, and the spaces in-between. There is anguish and affliction I've seen and come across, it breaks our spirits down, it burdens and exhausts. There is no difference between destiny and pain, both a journey across beautiful yet hostile terrain. The mystery of why you came so early and early you had to go, won't be answered on this earth or this life time I know. Though my heart aches of never knowing who you'd grow to be, the pearly gates, the streets of gold, is the gift you now see. I can not promise no more grief, no more pain, no more tears, but one day we shall meet again, and embrace in pure happiness and cheer. And when they ask, did I ever know love, pure love, even for just awhile, I shall say yes, yes I did, her name was Adelaide and I'll say it with a smile. By Creth Boyd

Another Day Gone By...

Well, it's been another good day.  I hope that this blog gets painful to read because of the boredom that ensues and not because of the tragic losses it recounts.  Both little Wyatt and the neighboring twins are doing well, a response to outstanding medical care and an overwhelming outpouring of prayer and love.
I'm going to try to do a better job of updating during the day, I've downloaded an App that will allow me to post on the go at work.  I spend a lot of my time hovering over my phone between patients in order to get updates myself, when I get them I'll pass them along as quickly as possible.

Wyatt's supplemental O2 is down to a range 25-30% which is excellent considering room air is 21%.  His main obstacle in lung function in relation to vent weaning is not O2 but the pressures and respiratory rate. The pressures are also doing very well, but in order to consider weaning a few weeks from now the rate has to come way down.  He's doing well so its not a concern yet, just where we are in the moment.  It appears the two big hurdles coming up are chest tube removal (which can only happen when the pneumothorax on each side are resolved) and beginning of feedings.  When they remove the chest tubes we can begin kangaroo care, which I think I described in one of the recent posts.  I can't wait!

Feeding is a whole new issue, we've been told it can be very difficult.  The young immature bowel and stomach make it hard to adjust to input, and they can develop a necrotizing disorder related to reduced blood flow to their bowel. This is where my prayers are focused tonight and will for the next few days.

Thank you for all you've done and will do for my Wyatt and my family. Your continued prayers are more than we could have hoped for and we are forever in your debts.

Cruise Control

Wyatt is currently right where we need him to be, on cruise control!  He had an assessment at 10:00 PM and everything was status quo, his blood work was good, his Sats have been good and he's currently maintaining at his weaned O2 level.  His brain US was also negative for brain bleeds, which is another hurdle down in his young life.  He's putting in a good fight and that's all I can ask.

He's going to continue to need your prayers, as are Rachel, Ethan and I, but we thank you so much for all that you've already done.

Feedings are next on the horizon and will hopefully be beginning in the next couple of days, once they've allowed him to acclimate to the new vent.  Another thing that Rachel and I are anxiously awaiting is kangaroo care.  In the next couple weeks as he gets stronger an more stable we'll get to start holding him skin to skin.  It brings me to my knees to think about Adelaide, I only got to hold her one time.  She fought long enough for us to listen to her little heart beat in a chest with a stethoscope so we could hear just how hard she fought for us.  After we had disconnected everything, she stuck around for a full hour, she was beautiful and she gave us everything.  There has been nothing in my life as painful as knowing I only will have that one opportunity to hold her, but there is nothing I'm looking forward to more than the first time I'll get to hold Wyatt.

Help us pray for his health, his growth and his strength.

The support is more than I could have ever hoped for, but I'm going to continue asking, please help has ask God for the blessing to raise Wyatt.

Ethan Goes to School

Today has been a good first day home from the hospital. As most of you know I have been homeschooling Ethan for the past 3 weeks, unfortunately due to the current circumstances that is no longer feasible. We were worried that Ethan would not take the news very well but apparently all we needed to do was tell him that he got to wear a uniform!

Adelaide Taylor Roberts Memorial Fund

Well this morning I called the NICU to check on Wyatt's progress and the doctor asked to speak with me...my heart sunk. As most of you know typically when the doctor has asked to speak with us no good news has followed. Luckily this morning I was given the news that Wyatt had been switched to a conventional ventilator and was tolerating the change quite well!! He has shown significant progress since Addie's passing and I can't help but think she is taking care of him somehow.
I know Justin has been in charge of posting so far but now that I am out of the hospital I will be helping with the blog. I want to personally thank everyone for your prayers and support through this difficult time. It has been so comforting to receive all of your messages, phone calls and Facebook posts. In lieu of flowers we have established the Adelaide Taylor Roberts Memorial Fund to cover Addie's medical and burial expenses. If you wish to contribute to the Memorial Fund you may stop by any Republic Bank branch or mail the checks directly to us. Once again thank you for your support, we couldn't make it through this difficult time without all of you.
-Rachel

Progress

Well I'm back at work so updates will be a little less frequent, but I do have good news. Wyatt has been weaned from the oscillating vent to a conventional vent and his Sats continue to maintain or improve as they continue to reduce his supplemental O2. I don't think they're planning on doing anything else for a day or two because they don't want to agitate him. He just needs to relax and continue to grow stronger. Thank you again for all your prayers, they are helping both him and my family.

Already a Brat

As soon as Rachel and I walked in the front door the phone rang. You can only imagine the sickness that overwhelmed us. But fortunately if was only to be notified that Wyatt had decided to wake up and open his eyes!

In Memory of Adelaide Taylor Roberts

We will be having a memorial service at Southeast Christian Church in the chapel on Wednesday September 14th at 5:00pm.  Please feel welcome to join us as we mourn our loss of precious Adelaide. We recognize that our loss is Heaven's gain, so our gathering will be nothing short of bittersweet. Our only request is that instead of sending flowers and other gifts that you would donate to the Adelaide Taylor Roberts Memorial Fund. This donation will help us to cover acquired expenses, both medical and for the funeral. We have asked for much of your time and energy for prayers and we will continue to ask for this energy, so please do not feel obligated to give more than this; the Memorial Fund is an additional request in lieu of sending other forms of gifts. We are still working out details with the Memorial Fund but as soon as we know an address to send checks to we will make that post.

Thank you all again for your love and support.

The Sun Rises

There are many things in our lives that we take for granted and presume will always happen, but the truth is, there are very few things in life that are certain.   Unfortunately, this fact that is often stated in cliche form, has been made painfully real to our family.  The world keeps turning and again the sun came up this morning, and for the first time this week Rachel and I slept until we woke up on our own.  No doctor had to come wake us up in the middle of the night to deliver any difficult to devastating news.  Wyatt had his full round of medication to close the valve in his heart that was open because of his prematurity, and we received the good news that it was effective.  There is a 50% chance that it will reopen but because of how effective it was on the first round of treatment they're confident that they'll be able to get it close and stay closed if it should happen to open again.

Wyatt's other lab results continue to be great and his lungs are continuing to improve functioning and tolerate less of the supplemental oxygen and pressures that the vent provides.  The physicians have been pleased with his progress, although if you've ever experienced interaction with a Neonatologist on the clock you know that they're never "positive".  They haven't had anything negative to say so that's a good news.

Rachel gets to discharge today so we'll be going back to our house, we're actually excited to be going home.  Ethan return's this evening too and so we're going to get to spend some much needed time with him.  He's a great young man and we're so thankful to have him, more now that we fully appreciate just how precious his very life is.  We are going to be telling him about Addie tonight, but by emphasizing she's in Heaven we're pretty confident that he'll take that well, but please pray for us and him.

Thanks again to everyone!

Neighbors in Need

We've spent the bulk of this blog documenting the painful rollacoaster that has been our week.  From the birth of our twins Adelaide at 2:09am and Wyatt at 2:12am on the 7th to the painful loss of Adelaide this morning at approximately 4am.  We were redeemed by your prayers and given peace by how well Wyatt has responded today, I don't know what the future holds for him, but today he has been unbelievably strong and healthy and it has everything to do with the many prayers lifted on his behalf.

There is a couple who have twin boys next to us in the NICU and unfortunately are going through a very similar situation.  I don't know the children's name but I met the father today and I see in his eyes the worry and pain I know that I have in mine.  Both of their beautiful boys are still fighting, but only one is doing well, the other is in a real battle and has been very up and down.  We've had more people look at this blog than I ever imagined and so I want to ask you all to pray for this family as well, pray for their boys.  Knowing how hard it is to lose a child, no matter how brief their precious life, I can't imagine anyone having to go through this and pray that no other parent does.

I pray for for the health of those two you children, that God my provide his breath of life and deliver them from the current struggles.  I pray that those boys will have the opportunity to grow in stature and faith just as Jesus did, and I pray for the parents that they have the peace now to rest and the strength and wisdom to raise those boys to leaders of men and thankful for the gifts they've been given.  I pray these with all the love that I have in Jesus name, Amen.

One caveat, it appears that they would be raised to be Louisville Cardinal fans, so as the healing takes place and the wisdom grows pray also that the will be led into the land of blue and white!

(I'm sorry, I couldn't resist.  A bit of poor taste maybe, but we have to smile in these times)

Wyatt James Roberts

Today we've received some cautiously good news, they've been able to ween Wyatt's oxygen percent down significantly and all of his other vitals have actually improved or at least held steady so he appears to be fighting the good fight.  Keep praying for him and the medical staff taking care of him, he's a long way from safe.

As you all know we received devastating news early this morning we lost our beautiful daughter after 74 very difficult hours of life.  I think at this point I'm writing selfishly, because I need it for my sanity.  The outpour of love and words of encouragement we've received today has been overwhelming and I cannot thank you enough.  Wyatt's still in a battle and Rachel and I are currently in a tough spot emotionally, she's tougher than I am and is handling it better, to be honest I'm a basket case.  I was the proud parent of the most beautiful little girl you've ever seen and I miss her to the point of sickness.  The only thing that has gotten me through is the support of family and friends.

Thank you for all that you're doing please continue to pray we truly appreciate everything!

His Word

Psalm 34:18 "The Lord is close to the brokenhearted and saves those who are crushed in spirit."

Psalm 46:1 "God is our refuge and strength, an ever-present help in trouble."

In Gods Hands

We had a beautiful daughter for three days.  Addie is gone now. We will miss her.  Please continue to pray for Wyatt and our family.  

To be absent from the body is to be present with Christ. 

Stable

"Well good news of the evening is that Adelaide is again stable.  The physician is hesitant to say that she is out of the woods, but is at least satisfied with the progress we've made.  The bleed in her lungs has apparently been stopped so the interventions performed this AM by the physicians and nurses had the desired effects, the problems have been the acidity in her blood and her inability to expel CO2 from her blood stream.  Fortunately, through your prayers and some fighting on her part her lung function slowly improved."

That is what I began writing at around 5:00 tonight, I had to take a break because we got several visitors all at once.  The support both in person and through prayer has been unbelievable and I can't thank you enough.  Unfortunately, its now 07:38 and we've had yet another set back, apparently Adelaide is out of the frying pan and into the fire.  Her most recent blood test came back and her hemoglobin had dropped significantly.  The problem with that is that they're not sure where the blood is going, and considering her first head US showed a grade 1 bleed the physician is afraid that that has progressed to a larger bleed.  A stage II is okay and stage III is serious can still have a full recovery.  A stage IV is still survivable but the likelihood of coming out of that without any long term deficits is virtually non-existent.  We're in for a rough night and potentially will face some difficult decisions over the next few hours.

I've been on my knees begging God to take whatever he needs from me to repair them, but unfortunately it just doesn't seem to work like that.  All we've got is your prayers, I know that so many have you have given everything you can possibly give, but now I'm asking for more.  I don't know what's going to happen, I don't know what the plan is, and I don't know what we're going to be faced with, but I know I'm grateful for all of you and everything you've done.  I pray that Adelaide wakes up healthy tomorrow, I'm begging for that I just don't know if that's possible.  Please help me pray for both of them, Adelaide is the most immediate concern but they're both still in a fragile state.

I love you all and thank you for all that you have done!

AWE

I have to give credit where credit is due, and so I'll tell you that Michelle Arnold is the one who contrived the name for this blog.  Initially, we had thought this would be a blog dedicated to Adelaide and Wyatt, the two newest additions to our family.  AWE turned out to be the perfect word used to title a blog about our family.  We now have Adelaide, Wyatt, and Ethan.  This post is all about the Big E, he's going through a lot right now too.

Rachel and him were able to enjoy a great start to the school year as Rachel was able to homeschool him and adjust every lesson to facilitate is mood of the day.  We've had to make the decision to put him in a school because with the babies coming so soon it's just not going to be possible to continue to educate him effectively.  Besides all of that, the spotlight in our family has always belonged to him; Now we're in a position that that will be shared.  As any parent knows that's a huge challenge for him, we want to make sure that he knows we love him just the same as we did before they got here and we love him no less than Adelaide and Wyatt.  We ask that you would pray for him as he goes through this adjustment and also pray for us that we make the best decisions for him and can adequately show him how passionately and unconditionally we love him.

Thank you for your prayers and God bless!

Breath of Life

Good News: Wyatt is holding strong, again he's not really "improving" but at this stage of the game if we can get 10 days of stability and toleration of his nutrition then that's a win.

Adelaide is still in a real immediate battle.  They've been able to get her stabilized from a BP, HR and O2 saturation stand point, and that's a big improvement.  Her CO2 is not clearing her blood stream so that is keeping her pH up.  Essentially we're still battling her lungs, so please continue your prayers and know that what we're battling now is the function and fragility of her lungs.

We were given this Bible vs by the hospital chaplain and I want to share it with you.

"He will command His angels concerning you. To guard you carefully, They will lift you up in their hands..."  Luke 4:10

Thank you for your prayers, and God Bless

95 mph

Well, I just spoke to the doc and as of this very second Adelaide is holding her own.  "Very Tenuous" was how the doc described her situation, but he did say that she is "marginally better" than she was in her 51st hour.

As for some comic relief from the stress of this morning I have a little story.  Of course when we got the news this morning I began notifying my parents and Rachel was notifying hers.  My mom had returned to Flatwoods because of the stability yesterday had brought she was hoping to get some work in.  This morning changed things and so she immediately set out on the 180 mile drive from my home to this hospital.

Speed bump number one: Her car is in the shop so she has no transportation.  Fortunately Janet Lykins, a long time friend and neighbor generously loaned out her car to my mom so she could make the frantic drive here.

Speed bump number two: As mom pulls out she phones Janet to find out how to operate cruise control in her generously loaned automobile.  In Janet's nervous and sleep deprived state she simply replies "I don't remember".  Apparently loaning the car was all Janet was going to be able to help with :)  (and we thank you!)

Speed bump number three: Just west of Frankfort mom was stopped by a police officer going nearly 100mph, which he only noticed after she zoomed past him.  As he pulled her over she got out of the car arms up in surrender, but explaining that she didn't have time for him because of the situation and her need to be in Louisville.  He was very kind and understanding and allowed her to continue and only requested that she keep it to a max of 80mph.  (The only complaint mom has of him is that he was wearing a purple tie and a purple shirt, which only occurred to her after she was back speeding, but she decided was "yucky")

Thankfully mom is here now...safely.  Adelaide continues to fight and at this point this is all we can hope for, please continue your prayers.  Wyatt is holding steady, not necessarily progressing but that's not the goal just yet; we need stability!

Beautiful Babies

51st Hour

The 51st hour has been much less encouraging for Adelaide, the Doctor has told us that she developed a bleed in her lungs.  They've begun treatment very aggressively, and for the moment she's responded but it's impossible to tell what the next few minutes will be like.  It's currently 7:45am so she's made it 53 hours and is battling for her life; today is about survival, nothing more.  You have all prayed so much for her and Wyatt, and we continue to need those, her now more than ever.  There are many complications that could occur from the treatments that they have had to give her for this bleed, but the physician basically told us that we would just cross those bridges when we get there.  We're not hoping for improvement, we're only hoping for survival of the next 24 hours.  If they can stabilize her then she has a fighting chance, and that's all we're hoping for.

To be honest, she did not look good when Rachel and I just visited and her nurse was close to tears.  We've been told that babies have survived these bleeds, but we haven't been given odds.  At this point it appears that its up to her and the big man upstairs, the nurses and docs have done all they can.  We appreciate it all your prayers and they're all we've got left so please continue.

Justin

46 hours and counting

Today was a good day!  Yesterday I'm not sure I had a single conversation about these beautiful kids without crying.  They've had ups and downs and the only thing that we've been assured is certain, is that the rollacoaster ride is only just beginning.  Adelaide is demonstrating the most stability at the moment; though last night she was given only a 30% chance to survive the night.  Wyatt has had a less volatile existence to date but is currently requiring more oxygen and to remain within the ranges of safe O2 saturations in the blood.

This first phase has been, primarily, about there lungs and their fragility, and they will continue to be an emphasis going forward, but as hours move on their is going to be increased focus on brain development, cardiac function and "gut" function.  We've been told that often times in babies this premature that the gut can often cause the biggest problem, that is more qualitative than quantitative I believe, but never-the-less provides us some perspective about what the future holds.  We've been blessed to have all of your prayers and Adelaide and Wyatt will continue to need them going forward.

I want to thank everyone for the phone calls, text messages, facebook posts, and emails of encouragement as well as the 100's who have prayed for Wyatt and Adelaide's safety and Rachel's recovery.  I think God finds it necessary to challenge us to give us the opportunity to see the world as he sees it and to put are priorities in order.  I don't know what the future holds but I've already been humbled like never before.  Those that know me, know that I have struggled with humility, mercy, optimism, kindness and patience.  I haven't been someone who vocally professed my faith in Jesus as my Lord and Savior or always lived a life that would have distinguished me as Christian.  I'm apologizing for that now in as public a way as I can, specifically to all those who I have wronged along the way.  One thing I've learned in 46 hours that Wyatt and Adelaide have been alive is that every life is precious and that life is something so fragile it that should never be taken for granted. I've allowed my pride or jealousy to guide my actions many times in my life and haven't valued others like I should have.  Remember to tell the ones you love that you love them, remember that your actions will often speak louder than you words, and remember no matter where you are in your life God has plan for us all and he loves us each infinitely.

I promise not to be so sappy in all of the posts and to devote this blog fully to updates on the lives of Wyatt and Adelaide but there were some things that had bubbled to the surface during this short time that I felt like I needed to say.  Your support during this time has already meant more than you will ever know, your prayers are all that we have for the twins and they've responded today to please please continue.  Rachel has recovered beautifully and should be ready to go home Sunday, the twins will be here for several more weeks, but with each passing hour move closer to living long and happy lives.  There recovery has as much to do with you as anything, I truly believe that and will never forget the debt I owe so many that I may have never even met.  May God Bless each and every one of you for the way you have blessed and supported my family.