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

Update... Day 3 of Wyatt's journey

Wyatt is 3 days old today... And what a day it has been! Everything was stable when I left yesterday to go back to st. Mary's and the doctor told us they were going to do a test this morning to make sure that Wyatt wasn't having any pulmonary hypertension. If this test was good, they might perform surgery Friday or Saturday. We were very happy to hear such good news, surgery meant one more hurdle down and that Wyatt must really be proving himself to the doctors to take him to the OR so soon. I woke up for my 4 o'clock pumping session and immediately my happiness turned into anxiety. I could go back to sleep, I was crying sitting in my hospital bed thinking of all the things that could happen to my precious baby boy that I had fallen head over heals in love with in a matter of seconds.
I was still unsure if I was going to be discharged from the hospital, if Wyatt was going to have surgery, I just felt unsure about everything.... I had no control over anything and if you know me that is the worst thing to have no control. The resident made her rounds and told me that she thought I would get to be discharged as long as the attending agreed. Then I get the phone call that the echo went very good, we were. It experiencing any pulmonary hypertension. I was thrilled, but then I remembered that a good echo meant surgery. The surgeon told my husband that they would schedule him in the afternoon for surgery. I had never felt such urgentness to get somewhere... I needed to see my son, touch him, tell him how much I loved him and that I knew he could handle this surgery. Thanks to the wonderful staff at St. Mary's and a few strings being pulled we were out with in the next hour and the family was notified of the surgery. I was getting a little bit of that control back, there was a plan. Then the tornado started....
My husband called back and said that the only opening on the surgery schedule was late in the evening and they would prefer to do it on Saturday morning. I was a little perturbed because of the variation in the plan but I let it go and called the family back and told the. Of the new news. We left the hospital and drove to Glennon. I got in the NICU room and felt at home. I got to stay with my baby tonight.... Sooooo happy. I was playing with Wyatt's teeny tiny toes and telling him that mommy got to stay with him all the time now when Dr. Vane walked into the room. He was ready to take Wyatt to surgery due to a cancellation on the schedule and they would be ready for this surgery with in the hour. I froze. I knew this was coming for months and thought I was prepared, but I lost it. I can honestly say I have never been more nervous to let something go ever before in my entire life! The family was still available to come and sit with us which was a relief.
They told us from the time they took him from the NICU room to the time he would be back would be roughly 3 hours. I kissed Wyatt's hand and told him he was my brave little man and would do great... And honestly at that point I did feel like my son was braver then I was. I lost it when I walked out of the room. Everyone else seemed pretty calm, on edge but ok. I felt like a ticking time clock... I was gritting my teeth and snapping at people and felt like I could cry a river if I let myself. They called us around 1:25 to tell us that they had made the first cut and Wyatt was doing well.  The next ring from the phone was at 3:15. My husband answered the phone and I could hear the nurse on the other end but couldn't make out the words. Those 25 seconds were the longest time period I had ever had to sit through. My husband was nodding, or replying to the person on the other end... I just kept saying please say something. And when he life was good!
The surgery had went very good and Wyatt had tolerated the procedure very good. They were able to repair the hernia with out and mesh patches. His spleen was nicked and he lost some blood but were able to replace it and he responded well to the treatment. My family rejoiced, hugs and praises all around. I kept it together for the celebration and then retreated to the restroom where, for the third time that day, I lost it. It felt like every emotion a human could experience was running through my body with such force I could have collapsed. I think through  my tears I thanked God about 100 times. I had never felt more blessed in my entire life!
Wyatt is still doing very good. He is resting comfortably and we are going to let him recover tonight and then the doctors will begin to ween the vent as tolerated. We have so many other hurdles to get through and sitting here next to my son I am still anxious and worried for him, but for the first time in the whole thing I feel like we are swimming, instead of treading water or even sinking which I have felt like sooooo much in the last couple months. Baby is born, mommy is recovered and with Wyatt, surgery is done (at 3 days old, shout out to the little man), and now we work on getting him breathing on his own and then we move forward (toward home) to the next set of hurdles. I sit here, next to my son in his NICU bed and stare in complete awe. My husband and I created this sweet little boy that is so innocent and dependent yet he is the most strong, brave, incredible person I have ever met!, I now know my purpose in life... To be Wyatt Gills mommy : )
Until next time.....

Wyatt Andrew Gill's Birthday

Well, Wednesday morning the doctors decided to take Wyatt by Csection because he was not tolerating labor very well; and since they had been trying to induce my labor for over 72 hours I wasn't surprised. Kevin was right by me the whole way to the OR and he seemed nervous but ready for Wyatt to be here. All I could think was, it's over. I was so scared I was shaking like a leaf and I don't think I got to truly appreciate becoming a mom, seemed more like a dream or even a nightmare. Kevin got to meet Wyatt first in the OR before he took his place in the NICU at St. Marys. When dad brought back a few pictures and told me our son had red hair and his weight etc all I heard was 'Our son', I will never forget that phrase. I was a mom to this beautiful little creature. Wyatt Andrew Gill was born at 1:41 am on June 19. He weighed 5lbs 15oz and 20 inches long. He is the most beautiful thing I have ever seen and I love him more then I have ever loved anything in my life... And have also never been more scared of losing something either!! His apgar scores were 1, 3, 5, and 5... He needed resuscitation at birth and when we got to see him on the way to Cardinal Glennon he seemed stable and to Kevin and I, even with my nursing background, he looked so perfect, like such a healthy baby boy. I have him a kiss on the band before he left us and a little blanket that had my scent on it so he didn't forget me since I has to stay back at the hospital. I was so out of it from the surgery, meds, and stress I passes out for a few hours and when I woke up I needed some news, I NEEDED to see my son!! The doctors did not want to let me go so soon but around 4 that afternoon they let me come to Glennon on a pass to see Wyatt and Kevin. My best friend and sister took me over and they were so excited to see him and touch.... And all I could think was how nervous I was. Like I was actually meeting someone for the first time, almost first date kinda nerves. Even thought he had been a part of me, literally, for 39 weeks I didn't feel like the head honcho or the leader 'per say' like I had been before. I felt like a visitor and didn't like it. My thoughts and attitudes changed when I got there, when I got to feel his skin, see his gorgeous toes, his cute nose, his amazing mouth... Even though all his tubes and monitors are on him, he is the sweetest thing I have ever laid eyes on. I was only allowed 4 hours out of St. Mary's, which felt like 5 minutes so when I got back to the hospital, got my meds which I included something to help me sleep so it didn't seem as long until the next time I got to see him. When I woke up the next morning (today) I gotta IV out and could shower and spend the WHOLE day at Glennon... I'm and one happy camper right now!!! I got a text message from my husband and a short face time session from my mom with a bright eyes beautiful baby, its was the best thing I had seen in my whole life!! He is looking so good today, really good color, more movement, and good vital signs. I got to kiss his tiny little head today and he smells soooo good, natural baby... No lotions or soap, just my son : ) intoxicating!!
We are now waiting on the doctors to schedule his surgery. We are not out of the woods for pulmonary hypertension (a major complication of CDH) but the doctors say that all the other things (vital signs, his behavior, etc) point in the right direction and make them believe he will do very well. We are in the waiting room now as he gets his PIC line placed. (A semi permanent IV line). For some odd reason I am the calm one about this and my family are the ones anxious about this as we sit and wait. It may be my medical background, or how well he is doing, or that 'false hope' thing but I'm ok as of right now. Sometimes I feel guilty for this or like if I'm not overly worried or anxious it will show up to hot me in my face later... Guess we just take it minute by minute.... Ride the CDH roller coaster as the veterans of this journey would say.
Sorry it took so long for the update, I will try to be better about it to keep everyone updated. Feel free to visit my FB page as well because my family has also been putting up updates and they tag so if I don't have time to make entries some may. Keep up the prayers and good thoughts, they have worked wonders this far and I cannot thank everyone of you out there enough for all of the support. We are truly blessed!!!!
Until next time...

Update 39 weeks..... 'D' Day

Just a quick update for everyone.... Before I can't update for a while. We are admitted to St. Mary's and the induction started. I was given cervdil, a drug that will help dilate my cervix at 930. It takes 12 hours to work and then they will start me on pitocin tomorrow. Probably no baby in our future until tomorrow late afternoon/evening. Feelings: I'm scared as hell... I think that covers it ; )
Like I said, short but sweet... Will keep everyone updated as we can. Lots of prayers requested!!
Until next time...

Update 38 weeks 3 days

Seemed like a pretty uneventful appointment today. His BPP and NST were great. LHR is 1.8, but like we were told last week, this is being measured by different people and it is very difficult to measure this far along in the pregnancy... so we are not focusing on that but focusing on the fact that we have a strong, feisty little man to meet soon. I am not having any contractions per the monitors so we did not check for dilation or effacement this time. Instead, we wait until Sunday to see if he will make an appearance on his own or if he will need some help with induction.
Everyone said I would start getting very anxious and uncomfortable the last couple of weeks, and I was starting to not believe them because I had made it to 38 weeks and was doing great.... then Monday hit. I feel absolutely awful and selfish for saying that I am uncomfortable or hurting because of our situation!! It is hard for me to realize that I am still a human and this part of pregnancy is HARD, and my nerves mixed with hormones mixed with aches and pains mixed with more nerves are starting to get the best of me. I wish I could go to sleep and wake up on Sunday night, but I will keep trucking along until 'D-day' arrives... Hopefully I can keep it together until then, so I still have some strength left to get through delivery and move onto the real challenges we have to face.
We went to lunch after my appointment today and there was a couple sitting close to us with a newborn baby girl. I am one of those people (even before pregnancy) that is pulled towards babies; always wanting to look at them and fantasize how awesome it will be when I have my own little baby to love on and hold and be a new mommy. My mom was watching the couple and baby and saying how cute she was. Which she was, but all I felt was envy and jealousy. I know I am getting ready to have my own, sweet baby boy... but I wont get to have those first days of his to myself or to share with family... I will be fighting with my new born in a NICU and I am feeling bitter about that : ( I hate to be like that and I hate to have these feelings, but like I said these nerves/hormones are starting to get the best of me and showing an ugly side. I'm just praying that God can give me the strength to put those feelings aside and enjoy all the times I have with Wyatt, NICU or not...
On a more upbeat side, we only have 4 days left until we meet Mr. Wyatt : )... So, until Sunday

Appt Update... 37 Weeks 3 days

Today's appointment was a little different then the others. I am not being seen at FCI/Cardinal Glennon anymore for the remainder of the pregnancy. I am now being seen by my fetal maternal medicine doctor's (Dr. Vlasots still) office. The ultra sound was different, but we got a lot of 3D pictures which is always fun!! The LHR went down to 1.96 : ( , but Dr. Vlastos reassured me that this measurement is very subjective and is much harder to calculate as the pregnancy progresses. The BPP was again 8/8 , little man was practice breathing during the whole ultra sound : ) We also had another great NST and the fluid levels are great as well. After I heard the LHR, I was scared and discouraged... I'm not going to lie. After thinking about this for a while and replaying the doctors words 'these measurements are subjective' or 'they get harder to measure as the pregnancy progresses' or 'these are good "predictors" but every baby is different and does not play by the rules or ad hear to the "predictors"' I think I have finally given in. I want to believe that Wyatt is his own person already and no matter what those numbers say, or no matter how many times I tell myself not to get my hopes up he has his own story to tell and God has his own plan for him... regardless of numbers or measurements. That is one of the hardest hurdles for me thus far. I have been clinging to those numbers and running them trough my head non stop since the first day my doctor told me that something wasn't right and I have to quit focusing on numbers and focus on my son!!
Dr. Vlastos does not think we are candidates for an EXIT procedure and still thinks that we are safe to deliver vaginally at St. Mary's, stabilize Wyatt there in the NICU, and then transfer him to Cardinal Glennon to start our CDH journey. I was not dilated today, but was 50% effaced. If I do not go into labor on my own, I will have one more appointment on the 12th and then if still no labor I will be admitted on the 16th for an overnight induction at 39 weeks exactly.
So another week of waiting now... oh I hope I can keep my little man in so his lungs can grow but I am so ready!!! I cannot believe I am saying this because it makes my stomach turn to think of what he will have to go through, of the LONG, HARD road we have ahead of us, but I am ready to do this!!! I am ready to see my son in person, not on a screen... I am ready to begin this journey and see what God has planned for us...
When I got home from my appointment, I had a package waiting for me... It is my tote bag from the Cherubs foundation. It is the sweetest, most generous gift! It has so much helpful information, fun baby stuff, and a lot of awareness items that I will wear proudly! There is an insert in one of the folders that is called 'Welcome to Holland' and it is a metaphor for having a baby with a birth defect. It compared it to planning an extravagant trip to Italy but showing up in Holland instead and having to change your plans and mind set... But in the end it shows how Holland can compare, and even out do Italy. It may sound cheesy to some people, but this small little insert truly makes me feel blessed to have Wyatt... no matter what. We are going to have such an awesome, fun, extraordinary trip in Holland... I am ready!!!!!!!
Until next time...

Quick Update 6-1-13....

The doctor called yesterday with our MRI readings. The lung volume is 28%, which is basically the same as the last volume. The radiologist did say that he seems to be seeing more lung on the left side then he did on the previous scan, and the doctor filling in for Dr.  Vlastos said that with this 'stability' and a good LHR he thinks we have no reason to change our thinking of moving forward with out the EXIT procedure. All of my family, friends, and even the doctor seem to see this as great news... and I guess they are right that stability is always a good thing. I guess I was just hoping for that miracle to happen now, I was wanting the results to be in the 50's or 60's. I need to stop focusing on the numbers game and realize that my miracle is already happening every time he kicks me or rolls around in my belly. I need to think that my miracle will occur when he is here and gets to come home with us as a healthy, precious baby boy.
I just think that I cling on to these numbers or readings they give us because I need to know what to expect, what we are up against. I need to start listening when the specialists and other families that have been through this tell me 'we will not know until he is here'... I am about frustrated with the waiting game!!!!!!!! Do not get me wrong, this is all so hard and devastating but I am so sick of the phrase 'we will see you next week and go from there'. These men and women that are treating us are the most phenomenal people and I know they are doing everything they can to get my baby here healthy and to support me and my family through this difficult time, it still just feels like a mind game to me  (an internal one, they are not causing this at all!). Any other CDH moms feel this way? Or, get confused with the all the readings?? I cannot wrap my head around a good, increasing LHR with such a low lung volume. And maybe this is why I am not a perinatologist ; ) (Thank God for people like Dr. Vlastos and his team everyday!!)... my nurse instincts are just so strong and I want to know and understand all of this inside and out and I am struggling!
On a lighter note, we had our maternity pictures taken last night and the ones I have so far are absolutely amazing and make me yearn for pictures with our little man!! We also have tickets to this evenings Cards game and it is CDH awareness night at the ball park, very much looking forward to this : )
Until next time.....