Quick update.... Wyatt Gill and Leslie Avenue

So, we have had a whirlwind since my last update!! We were told on Friday, that if Wyatt continued to gain weight and eat well that we could POSSIBLY go home on Sunday. Of course, he lost 4 oz Friday night. When the MD's did rounds on Saturday morning, the doctor said she would add some formula to his feedings, let me put him to breast 2 times a day, and if he at least gained overnight on Saturday we could still go home Sunday.
I was ecstatic, but petrified at the same time. I know I am a mom, I was a mom, and have always wanted to be a mom.... but now it was reality. If this perfect little creature in my arms gained just even an ounce we would go home the next day. Kevin and I would be responsible for him, to keep him safe and breathing and healthy. We wouldn't have any monitors at home to tell us he was OK, no nurses to pick up the 3 am feedings when mommy was too tired, no cafeteria to cook for us... It would be us 3, a family finally with a lot of work to do.
As I'm sure most of you know by now, Wyatt gained Saturday night and discharge orders were written Sunday morning. We had one of our favorite nurses during this weekend, which was so wonderful to have her be a part of this experience. She was on the ball about getting us home too! She sent daddy and grandma down with our luggage and started going over our instructions for home. We loaded the car seat, complete with a baby now, in the wagon and headed downstairs.... I was in charge of 'wheeling' Wyatt down stairs, and with this task the worry truly set in!! Pat, the RN, could tell I think because as we got off the elevator on the ground floor, she asked if I was OK and how I was feeling. I just looked up at her, and all I could say was 'I never thought this day would come' and in my mind I cannot say that I ever actually let myself think or dream of Wyatt coming home. Maybe it was a coping mechanism or maybe it was my way not to stress out about anything else then the task at hand, but wheeling my son down to the car from his NICU room, the only home he had ever known, I felt like we had conquered one of the most difficult battles we ever would.
I know that CDH comes with many, many hurdles and we are already running into some of them only being home 24 hours, G tube questions and volume of feeds issues, but I cannot thank God enough for letting me have my baby at home. So many people have prayed for Wyatt and our family and I have never felt more blessed in my life, EVER!! I have this perfect little miracle baby, and wonderful husband that is already one of the best dads I have ever known, and the best/most supportive friends and family a person could ever dream of.
I know that I will be updating this blog as we hit milestones or set backs or frustrations or successes and hopefully people do not forget to pray for Wyatt even though a big part of our journey is over. CDH is tough, tough diagnosis and defect. There are never any solid answers and the journey or 'roller coaster' never ends! Please not only pray for Wyatt and our family but for all babies and families that are suffering with hurdles of CDH or any birth defects/problems!! It is truthfully something I nor anyone else will ever understand but great things and babies (people) come out of these situations!
Until next time......

Update: Day 11 thru 15

It's been a couple of days... We started feeding Mr. Wyatt on Sunday. We started off slow and for the first 24 hours he got 10mls of pedialyte in a bottle. At this point, we are going to try not to use his G tube unless necessary. The first couple feeding were successful but difficult. Wyatt wasn't sure what to do with this new experience but he would eventually start sucking and get down the 10 mls. No reflux or pukes so this was a good sign.

Since we did so good with the first day of feeding we started him on breast milk Monday morning, 15 mls every 3 hours. As long as he was tolerating feeding, we would increase the amount 15 mls every 12 hours until we got to 'full feeds'. This seemed like big jumps in amounts to me but I was so happy he was eating, and eating my milk I didn't argue. The first amounts, 15 mls, was a breeze. Wyatt was a natural and he was having no trouble at all! When it was time to increase to 30 mls, they let me put him to breast for the first two feeds, and again Wyatt latched and seemed to have no problem.

During this 'trial' phase of feedings, we hadn't had a poop... but no one was concerned so we kept pushing forward.

During the early morning hours of Tuesday, the RN did a feeding for me while I rested. I woke up about 45 minutes after this feeding took place and something didn't feel right. Wyatt was VERY fussy... the nurse had tried and swing, soothing music, a vibrating device in his crib to help and nothing would console him. When I held him, he would settle down after about 10 minutes of rocking and soothing from mommy. This was a good feeling that I could comfort him, but then I began the 'worry' phase. Why all the sudden was he so uncomfortable? The RN seemed pretty concerned as well, even ordered an x-ray to make sure everything was OK.

I was back to the night we found all the air in his belly and he extubated himself. I became very anxious and started thinking the worst... No sleep, a non consolable baby, and talk about 'air' in his belly equals a terrible night/morning for baby and mommy. I just knew this was another BIG set back and that we would somehow/some way end up back in the OR or on a vent or some huge step back and I was petrified!! I sat in the rocking chair holding my little man for 10 straight hours... no getting up to pee or eat or sleep or even move. I was the only thing that could keep him calm and I wasn't moving or letting him go until things were settled down again.

Turned out that the x-ray looked fine and he was very back upped with poops and transitioning from no food in his belly to a pretty hefty amount of breast milk in his belly. Poor baby had the worlds worst belly ache!! As the day went on, he got to feeling better and began pooping. His eating/sleeping habits however changed dramatically. He was now not wanting anything to do with the feedings and was sleeping all the time. I was grateful he was not uncomfortable anymore but wondering if this change in his behavior was good. At this point I was thinking that the doctors would tell us he wasn't ready for PO (by mouth) feedings and that we would give him the breast milk in his G tube. It was the total opposite. They wanted to push through, they said to go ahead and continue to increase his feeds as long as he wasn't spitting them back up.

So, we did. Over the next couple of days we increased his feeds by 15mls at a time until we got up to 55mls every three hours. He is still pretty lazy while feeding and after about 20 mls is no longer interested but I am working with him and he seems to get a little bit (I mean may a ml or 2) better with each feed. If he doesn't eat the entire 55mls, we put the rest in his G tube which the RN's have been letting me do and I am comfortable with it but wish we didn't have to use it. I just wish he could eat what he wanted. It is beginning to feel like a challenge and a struggle every time the three hours is up and it is time to feed again. I just want to enjoy feeding my baby, not look at it as a test we have to pass before we can go home. I don't even really want to say in fear that is will jinks us but the last feeding we did he actually took all 55mls PO : ). I'm not saying that was easy or I didn't REALLY have to work with him to take, but never the less he did and I am one proud mama!! I just hope we aren't pushing him to far to fast. We have to continue to gain weight even if we are taking the full feeds and when a baby has to work a lot to eat they begin burning a lot of what they are taking in...

I need to realize that even though I am the parent, with medical background, the doctors do this every day and help to get so many kiddos home and healthy. I may just ask if we can back off just by like 10mls tomorrow in rounds just so it isn't such a struggle with each feed. Then we worry about him loosing weight and that brings up a whole new ball park of issues. I have been told that even before a discharge date is discussed Wyatt has to have 2 consecutive nights of weight gains while on full feeds, PO or by G tube. We weighted 6lbs 9oz last night so we will see what we get tonight.... 

I also need to remember that even though this may be a struggle right now, we have made leaps and bounds in a very short period of time. This scares me to say out loud because I fear, every minute of every day, that something will happen or we will have some sort of set back but in reality Wyatt is doing very well right now!! God is great and we are so thankful every time we look at our sweet little boy!! Prayers for moving forward and that Wyatt gains weight and takes his feeds with less struggle!! Until next time....

One happy baby after a feeding : )

Look at those eyes a beautiful cheeks!!! : )

Happy 4th of July!!!!!!!!!!!!!!



Update: Day 9 and 10

Yesterday was better then I thought looking back at it now... The morning was difficult because Wyatt was still in pain, most gut wrenching feeling to watch your baby try to cry over a ventilator but all the tests we were getting were reassuring. Little by little the day got better (I should remember that I say I am going to take this one hour at a time...). They gave him Lasix for the swelling, and his gases continued to be good through out the day so they continued to wean the vent. His morning chest x-ray show a stomach with little to no air which was music to our ears. They slowly decreased Wyatt's pain medications so they could extubate him and over all he tolerated it well ... He defiantly has a temper though because his vitals would shoot up and he would attempt crying when he was uncomfortable, but this would also happen just as bad when he had a wet diaper. Around 6 o'clock, Dr. Sadiq came in and said that his last lab result showed that he should tolerate no ventilator and they were going to pull the tube. Wyatt did wonderful with this and they put him back on his CPAP machine... he looked the same as he did before he went down to surgery which made me the happiest person in the world!! He rested comfortably through the night, I know he was in pain but I also think that the breathing tube was our biggest problem. He did not like that thing and was so irritated while it was in he couldn't control his heart rate or respirations.

Things went good today. No weaning of the CPAP but Dr. Ali said he doesn't want to overwhelm him to fast... I'm happy with that! Slow and steady wins the race!! The surgeons said there was still some air in his stomach on this morning’s x-rays and I got a little irritated with them. They said that there is nothing wrong with this and that they are probably being over sensitive... Probably? The difference with this x-ray and the ones before surgery are that now there is air in the small and large intestines and the stomach is not 'distended', just shows some air... AKA this means it is a normal amount and that everything is moving since the air is down in the intestines now and he continue to have stools. Wyatt has pooped with almost every diaper change as well so they say we will get to feed him tomorrow, we will see. I wasn't trying to be mean to the surgeon but I just asked why we kept seeing this and why we had no concrete answer and the surgeon still couldn't give me one and that’s when he said that they probably were being a little over sensitive to all these x-rays and that Wyatt clinically presented very well. He talked all of this over with Dr. Vane and they have even cancelled the morning x-ray unless Wyatt shows any reason to repeat it... I just don't want them over reacting when we haven’t even tried to feed him and taking him back to the OR again just because they can't explain a little air in his belly. Dr. Ali agreed with me and when the surgeons left he said that he thought it was a good idea to just watch Wyatt, not a bunch of imaging tests.

Today has been a good day, we got to hold our little man which is always so wonderful. Wyatt loves to be held, his vital signs are never any better and is either wide awake and just taking everything in or sleeping like and angel. I just wish we could take him home and never put him down!! Soon enough, I have to remember to be patient and that we are only on day 10... other CDH families I have read about or talked with have been in NICU for months with out attempting feedings or even repair surgeries. We are doing great on this journey, just have to keep pushing forward and attempt to keep a level head. I feel all these emotions and I know my family does as well, but then I sit here looking at this little, perfect person and realize he has us all under control. He is the bravest, strongest, most incredible person I have ever met!!

Prayers that feedings go well and he continue to heal from his surgeries with little pain/discomfort. Until next time....

Update... Needed to get it off my chest!!

I know I just updated this afternoon, but I had to get off my chest what I am feeling right now!! I keep thinking that this has got to be the hardest thing... and then some how something tops the worst feelings. I hate watching Wyatt be taken off to the OR, I hate thinking of him being cut on and uncomfortable, but the pain he experienced with this last surgery was the worst torture a parent could ever go through. I know I have only been a parent for 8 days, but watching what I just did is intolerable.
Wyatt was doing pretty good when he got back from surgery, but his heart rate was a bit high. The surgeons thought he was a little dry and could possibly be in a little bit of pain so they increased his pain meds a little bit and gave him a bolus(big infusion all at once) of pain meds to ease the pain and added on a bolus of fluids to rehydrate him. About 45 minutes after coming back from the OR, the pain medication began to wear off and he started becoming restless as well. His heart was not know only high, but becoming dangerously high. They want an infants heart rate to be between 120-160 and Wyatt's was in the upper 210's even 220's. He is still intubated from the surgery, but he was crying over the vent... just with no noise. Making all the crying faces, pulling up his limbs with agony... silently screaming out. I was so helpless, so useless. He was just begging for relief, and trying to tell someone that he was hurting but couldn't... I cannot imagine how scary that was, how awful that has to be!! I was trying to let him hear my voice and comfort him by my touch and he just kept grimacing in pain.
Again, in the same day, I find myself begging God to give him relief from his pain... to let him rest and heal his wounds. I know I have said this before, but I really need to let my faith take over and know that God is going to take charge and care for him in a way that no one but himself can. It's just so hard to sit here with Wyatt and know he is suffering... I can barley even look at him with breaking down!
He did get more pain medication on board and the nurses and doctors are watching him very closely for signs of pain. I know he is good hands with them, it is just still so hard! Tomorrow is a new day and my little man is the bravest of them all so hopefully we have a better day tomorrow!!
Until next time....

Cannot wait until we are back here!!!!!

Update: Round three... 8 days old

Wyatt is out of surgery, resting. What they thought was the antral web was not... Wyatt yet again surprised everyone, even the doctors. There are bands that wrap around the tissues connecting the stomach and the intestines. These bands were folding the stomach over when it would fill up with air. These bands were cut during surgery, his appendix was removed, and a G tube (tube directly in his stomach for feedings if needed) was placed. He seems to be in a little bit of pain right now because his heart rate is up, and this breaks my heart. They gave him a bolus of pain medicine and will continue this through the night. They have started to ween his ventilator for right now but if this becomes difficult because of the pain medicine he is receiving, we may have to wait until tomorrow or Saturday to take the vent completely away. Like I said before, it stinks to have to start over again with all of these steps he has already conquered but I am just so thankful that he is out of the surgery and hopefully the problem is fixed this time!!
I cannot tell you how hard today and yesterday have been for us as a family. I know my husband is getting stir crazy just being here, let alone the stress of everything happening to our son. I am a wreck at times, dealing with sleepiness from no rest and pain medications plus the stresses and fears of having a sick child. Other times, I am peaceful when he is doing good and things look stable. I think this is the hardest part for both of us, not know what the next hour, not day, but hour will bring. I get comfortable when he is doing good and then I am pulled to a screeching halt when I think of everything that has happened in the last week and everything that still could potentially happen.
I used to think my dream was to get married, have a nice home, and have lots of children to fill that home with.This is still my dream, but I never imagined that this 'dream' would include getting him out of the NICU bed into his own crib at home... I just wish that day seemed closer, but we will do whatever we have to to get there!! We are taking it hour by hour and doing our best to stay strong for our little man... even though I think he is stronger then anyone I know!!
Goals for the next couple of days are to get him off of the vent and pain medications and after that hurdle is met we need to poop so we can start attempting to eat : ) This can be a huge struggle for CDH babies, but I feel like once we start eating we will be on a direct path to go going home. Keep the prayers coming, God came through yet again for Mr. Wyatt. Until next time...

Update: 6-26-13, AGAIN?!?!?!?!?!?!

So, today has been another one of those days in the NICU. They always start off good, we are in a good place and then the bomb drops. Wyatt had a wonderful day of rest yesterday and great labs today, we got to decrease the CPAP machine a little bit this morning which is always a good step in the right direction. I missed rounds this morning because I was getting ready to go to my follow up appointment and then was at the appointment for the second set of rounds. When I returned, my mom had been sitting with Wyatt while I was gone, and she told me that they were taking him at 1 to do an upper GI study because the morning x-ray was still showing some air in his stomach. Mom said that the doctors told her that they weren't overly concerned, just wanted to start trying to figure out why this 'air' pocket wouldn't go away despite the surgery and the suction tube running continuously from his stomach.
I knew, when she said that they were taking him for testing, that something was wrong. I had somewhat wondered if there was something going on with the stomach because it was always discussed, even though it wasn' and 'issue' but figured the air would just start going away. I got to have some snuggle time with Mr. Man before he went down to the test. We started holding him yesterday, skin to skin... has to be the most amazing feeling a person can experience!! When the RN came and took him to the testing she put him in his isolette, and watching him roll down the hall with only oxygen and a pulse ox monitor on... no ambu bag waiting for him or ET tube connected to a vent I was very proud of him. He had made so much progress, but now this new 'issue' was looming over us and I was so scared of what it could be. So scared it would take away all of the good steps we had made.
They brought Wyatt back to the room about an hour later, and the RN told me that Dr. Vane would be in to discuss what they had found. When he did, it felt like a punch in the gut, after being knocked down and kicked in the gut. Wyatt has a VERY rare condition/anomaly that is called an antral/gastric web (possible duodenal atresia, but the surgeon was 90% sure it is the web). I do not even fully understand what this means myself, even though Dr. Vane tried explaining it and I looked it up. The best way I can describe it is little pocket of the stomachs lining that has bulged out into a pocket and is blocking contents from moving into his intestines from his stomach all the way. SOME air and stomach contents are moving into the intestines which is why he is pooping and not fully distended in his abdomen, but the blockage is not allowing everything out so air and mucous are building up. The surgical team states this is a relatively easy repair, and while they are in the OR they will place a G tube (feeding tube in Wyatt's stomach) and take his appendix out so that will not be a concern later on down the road and hopefully prevent Wyatt from yet another surgery.
It's not that I do not have faith in these doctors, or that I am questioning that this has to be done. It's just so hard to stomach Wyatt having to go back on the vent, back on the pain meds, get cut open FOR THE THIRD TIME IN A WEEK, and on top of all those emotions my RN head starts rolling with all the complications that could arise from a 'relativley easy repair surgery' and I crumble with fear and anxiety for my little, innocent, precious baby boy. I have come to feel that the OR is the 'bad place' and if we can just keep Wyatt in his room with us, not cut open, that everything will be fine. I know this is completely ludicrous but when they take my baby away from me and his future is uncertain it is the worst feeling a person could ever go through!! Feels like someone is pulling my stomach and heart out of my mouth and stomping on them.
I sit here now, on my 'bed' in the NICU room watching Wyatt rest calmly and just beg God to keep him safe and have him come back to me tomorrow after surgery. My prayers have become begging sessions. After the horriffic night/day of the second surgery I have started praying with Wyatt every night out of his childrens bible. We say one prayer of the day out of the book and then we say the Lords prayer every night before bed... I tell Wy Wy to talk to God and I know in some strange way he does and that God talks to him through all of these tough, scary times. I know everyone says that infants do not remember these traumatic experiences, but I cannot imagine what he feels or thinks when they get him that cold OR room and he knows that last two times he has been there he has woke up in pain, with a new wire or tube sticking out of some where... it has go to be awful and as his mom I HATE that I cannot do anything for him.
I need to sto typing about this 'faith' I have and really let it take over... know that God will give the surgeons and nurses the knowledge and talent to get my baby boy through this battle. That God has a great plan for Wyatt and we are just on a stepping stone right now, This is so hard and trying that sometimes I just don't know how to do that . I guess this is where we give in and allow God to take the lead.
I will try to keep everyone posted on how tomorrow goes, may not be the first thing we do after surgery but we will try. Keep the prayers coming, Wyatt needs them!!
Until next time....

Update: Deja vu or is this the new normal? Day 3-5 of Wyatt's journey

Today, Sunday June 23rd, started off as a pretty good day.... for being in the NICU. Kevin and I went to breakfast and were sending out pictures like crazy because his face was almost free of tubes. They had taken his repogle (stomach tube) out because it was not functioning properly and they thought he would do OK with out it. We were able to see his mouth for the first time. He had such precious lips... oh how bad I wanted to smooch him!! He seemed very happy, resting comfortably.
When the surgery team did rounds, the doctor told us everything was looking good but his stomach might be just a little bit bloated. Our neonatologist made his rounds next and said that he wanted to do a chest x-ray because it seemed that there was air leaking around/out of something in his stomach... a perforated bowel. Being a nurse, and have taken care of two babies with this in my prior OB career I knew the consequences of what this could bring. Instantly, I had a feeling of panic... the feeling of 'is this is, is this what will take him from me'. I had been so wrapped up in how good he was doing that I think I did forget about the CDH roller coaster, about the 'never being out of the woods' stories that I had familiarized myself with.
The x-ray confirmed the doctors suspicions and they put Wyatt back on the surgery schedule yet again. They told us there was a current trauma case and an acute case after that and then Wyatt would be taken back... 3 hours at the most. Again, taking care of these kiddos before I knew that this could make him very sick, very fast. I was a basket case. I was mad, and devastated, and petrified all at the same time. I was back to my negative, Debbie downer days and I just felt like we were nearing a very bad situation. Our families came to the hospital to sit and wait with us through the surgery again. When the other surgeries were over, the team came up to take Wyatt down. I kissed the lil man's hand and face and walked out with everyone behind me. I'm not sure how looking back that I didn't fall down or pass out, or just crumble because that is exactly what I wanted to do. I wanted to get in the corner, curl up into a ball, and cry like a baby.
The surgery team had explained all the 'what ifs' and 'could bes' which all sound horrible to us... Necrotic (dying) tissues, ostomy's, intestines being left open to air for healing. We were just with in reach of holding our little guy 6 hours ago and now he could potentially come back with his stomach opened up. We went to a different surgery waiting room to wait for the calls of incision and closing up and any possible complications.... just like the Friday, we were back to square one but this time it seemed much worse because this was an unexpected surgery that wasn't being done to repair but to save. I had just had a c/Section and was still in pain and on medication... this was the second time in 48 hours for baby Wyatt!! It made my insides cringe to think of the pain he would be in. This was so unfair for him and
I was helpless to stop it or to do anything for him. By far, the worst feeling yet... or at least that's what I was thinking at the time.
We had been in the waiting room for about 45 minutes when the phone rang. I picked it up and the same RN was on the other end. She said 'Wyatt is doing well, the surgeons didn't find any obvious perforations during surgery. Dr. Vane is on his way up to talk to you and explain further'. I  hung up and immediately went to Kevin, and just put my head to his head.... our baby was OK. We would get to see him in a very short period of time. At this point, I knew what the 'CDH roller coaster' was... and I was ready to leave the amusement park all together!
Long story short, they did not find any active nics or perforations in his stomach or bowels. There were some old, sealed over abrasions in his stomach that were the likely cause of the bloating and air around his stomach. They assured us that everything else looked great and that they would keep a close eye on him over night to make sure we didn't run into other problems. The next few hours I am not very happy to discuss, and do not want anyone to think I am placing blame. I truly think we are getting exceptional care at Cardinal Glennon and feel that Wyatt is in the best hands he could be... but the evening of June the 23rd was very trying and frustrating!!
We arrived back to our NICU room and Wyatt was there, bright eyed and seemed to being doing very well. He had his vent back and a new NG (stomach) tube in his nose. His stomach looked much better, the swelling was down and the color looked much better. They got him all set up and comfy, and then it was shift change. The new surgeons, doctors, and nurses all came in to see him... nothing big noted. This was all around 7:30 or 8pm. When everything had settled down, I asked the RN if she thought there was an area right under his right rib that looked swollen, or like an air bubble. She agreed, but didn't know what he looked like before his surgery so thought if the MD's didn't think it was a big deal we would watch and see. She tried to flush the tube that was in stomach, that was supposed to be draining/decompressing. It didn't work. The residents were called to see what the problem was.
 In the mean time, Wyatt was becoming more and more alert, and more and more aware that he had the breathing tube back and he was mad. He was ttying to gag it out and grab hold of it to get it out of his mouth. Surgery ordered x-rays to make sure the repogle, or suction tube was actually in the stomach and to see if the air that they operated to get rid of was back. I sank down to the couch in the NICU and thought, I and especially Wyatt cannot handle another surgery!! X-rays came back and the air was building up and they could not give me and explanation as to why.Everything began moving very fast, lots of people in his room, grabbing for things to start prepping him for more surgery. The nurse practitioner on my unit did not believe that Wyatt needed to go back to surgery, and it soon became evident that he did not. When she walked into the room, the first thing she said was 'everyone wait, is the suction on??' Since Wyatt had been up from surgery (about 4 hours) there had been no suction on letting air and secretions escape from his stomach. Everyone began messing with equipment and attempting to get the suction on so his poor little stomach could get some relief. While all of this was going on, I was standing by the RN trying to stay out of the way but know what was going on and a very small, sweet noise made us look at each other with such confusion... Wyatt's cry. If he had a breathing tube in how was he crying?? My little monkey decided that since everyone was preoccupied with the equipment and his stomach that this would be a perfect time to gag/pull out his ventilator.
This sent everyone into more of a panic mode. Crash carts were being pulled out, sedation medications being drawn up, respiratory was now there to place a new breathing tube, it was a mad house in this tiny little NICU room. The RN had put some free flowing O2 in from of Wyatt's mouth and nose to get him a little more oxygen while they were waiting for the new breathing tube to be inserted. When they went to give the medications to sedate Wyatt to place the tube, everyone stopped because the RN asked 'why are we reinserting the tube when he is breathing just fine on his own?' Wyatt's O2 sats were 100% and he was, again, bright eyed and looking around at all these people in a panic. I swear if he could talk he would have said 'What's everyone freaking out about?'
The rest of the night was much calmer, but inside I felt like the biggest mess! When all the doctors left the room and Wyatt was calmed and resting, I walked to the couch and collapsed. I just kept telling God 'Thank you' and telling myself that he was OK that I was OK. The tears kept coming, and the fear is still with me right now, two days later as I write this.
Yesterday was a much calmer day. Wyatt did get a CPAP machine, not for the oxygen support but for pressure to keep his lungs inflated. This is very much expected with the CDH babies because the lungs are compromised during development that they sometimes have a difficult time inflating and staying staying inflated. Needless to say, Wyatt is being watched very closely by several different nurses and doctors.... oh and his mama is now taking much more detailed notes to make sure we stay on the recovery path.
The newest news, today June the 25th, is that Wyatt is resting comfortably. He still has his CPAP machine, and we are watching his stomach very close to make sure we do not accumulate a bunch of air or secretions that could put us back into an emergent situation again.
I slept the best last night then I have in weeks, I knew we were in for a very long and stressful road... and I tried my best to prepare and knowledge wise I am doing pretty good. But emotion wise, this is kicking me and my husbands butts!! I'm so afraid to get comfortable or feel positive about anything because at any second all of this could be ripped right away from us. I need to remember that even though I have started calling my little man Superman, he does have a defect that is going to take time and patience to heal. I need to remember when I had written in previous entries that it is a miracle in its self that I am so blessed to have been pregnant with Wyatt and to have him here, with us is the best blessing a person could ever have!! I am so thankful, and so blessed but everytime I think this or have these feelings it is followed by some of the worst feelings of loosing it all. It's a very tiring thing to have your emotions pulled in so many directions every second of every day... but we are here and living it and will continue to fight it every day. To give the analogy of the 'CDH roller coaster', we were on the scariest of most dangerous rides on Sunday, and I was ready to give back my ticket and never come back... but now being on the Ferris wheel, I can look at Wyatt and see why people come here!!
Until next time....

The Gill family : )

Wyatt the day of the second surgery in the morning before we knew his stomach was compromised. Only O2 tubing on his face... such a sweet baby boy!!!

Mommy giving a send of to his first surgery, the hernia repair.

His good buddy Gerri the Giraffe

'Hold on tight'

 Daddy's finger : )

After the second surgery... and after he extubated himself