Congenital Central Hypoventilation Syndrome (CCHS) is confirmed

July 30, 2011

It’s been a busy last couple of days. I can’t go into much detail right now because we have to leave soon to attend a NICU sibling support group… In short, Wyatt is improving and the antibiotics seem to be working to fight off the two types of bacteria in his trach. Last Thursday we received the news that the genetic testing results were in and Wyatt does in fact have Congenital Central Hypoventilation Syndrome (CCHS). This website is the best we have found so far and I already joined their network and contacted the specialist listed: http://www.cchsnetwork.org/. In very simple terms, CCHS means that there is a mutation in one of Wyatt’s genes that causes his body to not be able to recognize or respond to an increase in carbon dioxide in his blood, especially during tired or asleep periods. Therefore, he is unable to learn to improve his breathing and will require continuous mechanical ventilation. However, the prognosis is good in that most children with CCHS are able to eventually come off the ventilator at least partially while awake. There are medical advances such as diaphragm pacing that we are looking into. Most of these procedures are performed later in life though. Our biggest obstacle right now is to find cases similar to Wyatt’s. He is not the “typical” CCHS case because normally this disorder presents with normal MRI results. He has the added challenge of having an abnormal MRI and therefore it is impossible to predict what his long-term prognosis is. From a developmental standpoint, Wyatt so far is on track with movements and tracing. So that’s great news and the doctor said that based on his muscle tone and movements, he may not be at as high of a risk as originally predicted for Cerebral Pulsy. How CCHS, the abnormal MRI and their respective possible complications come together, that’s what we’re trying to research now? Only then can we move forward with indentifying what medical advances may apply to his particular case. We’re hoping that Wyatt eventually qualifies for diaphragm pacing which would be done in Chicago, IL at Children’s Memorial Hospital… Needless to say, with the remodeling of the house, the preparation to transition Wyatt to a home ventilator and then actually bringing him home (hopefully around Labor Day if everything runs smoothly), and doing all the research and contacting CCHS specialists, there is not a lazy moment in our house right now.

Pep talk

July 27, 2011

Wyatt is doing a little better today. He’s still lethargic but his breathing has improved a little. He is getting treatments every 6 hours to thin out his secretions from his trach so that he can cough it up more easily. So far these treatments seemed to help stabilize his oxygen saturations. Even though nothing alarming came back from the blood work, his numbers are off which indicates that he is fighting some sort of an infection. They also found white blood cells in the mucous sample they took from his trach which supports that diagnosis. Therefore, they are covering their basis and are continuing the antibiotics. Hopefully he’s just tired from fighting that infection and will improve with the antibiotics. No results on the genetic test yet (CCHS). The doctor doesn’t think it will come back positive but we’re trying to hunt down those results so we can know for sure. Since Wyatt has not done anything according to what was expected, I don’t trust the doctor’s instinct until I see it first hand in the report. We better get an answer this week… As for myself, I’m back in the land of the sane people – I think. I started the day off by going to the gym. It was well overdue and it felt really good to let all my frustration out by adding on the weight to each machine. For those of you who don’t know me that well, as a Personal Trainer, I am not a fan of boring drawn out routines, especially not isolated cardio. 30 minutes of strength training is all you need if you do it right, for strength and cardio effects. And let me tell you, I made sure those 30 minutes were worth it! (Not recommended when pregnant!) Not having been able to do a hard workout since I got pregnant with Wyatt, I have to be honest, today’s workout kicked my butt. I was nauseous and a bit dizzy afterwards but nothing a glass of orange juice couldn’t fix. I had forgotten how much I needed a good workout. I’m sure I’ll feel it tomorrow but I miss that feeling of being a little sore, so it’ll be ok. So this goes out to all my clients following this blog. As depressed as I felt last night, and I still woke up that way this morning, I could have easily grabbed some comfort food and jumped back into the self-pity pool. I had no motivation to workout and I would have loved nothing more than some brownies and a strong strawberry daiquiri. And worst of all, people would have understood and told me that it would be ok. No one would have even second guessed such a decision. I would have just gotten a hug and a pat on the back with the words “It’ll be ok. You’re strong. You’ll get through this”. Bullshit. Instead, I chose not to drown myself in my own misery. Self-pity does not help anyone, especially not myself. It’s not worth it. No excuse is good enough because when I look at Wyatt, he doesn’t get to choose. He can’t make foolish choices just because the right decision is too hard. He has to fight every day or there won’t be another day for him. So to all my clients out there, don’t take life for granted. Get up and live life to your full potential. Forget about image and weight for a moment and focus on what’s really important in your life. That’s what your motivation and your goals should be. And now go out and fight for it. Don’t let fear hold you back. You know what you want and need, now do something about it. You can only fight if you’re healthy. So stop trying to think of reasons why you can’t accomplish something and just do it. The only thing standing in your way is you. So surround yourself with people that do not just pat you on the back. Instead be with people that call you out, people who support you but also challenge you and push you when needed. Stop hiding from the truth and get out there to live. If Wyatt can fight for his life every single day, then so should you.

I think I'm losing my mind.

It’s 1030pm. I just got back from the hospital. Wyatt is definitely not acting like himself. The only time I’ve seen him this lethargic is when he was sedated and he’s not on any sedation medication right now. It’s hard to watch when all you can do is wait and hope he’ll come around. I don’t know what I’m feeling. The tracheotomy was supposed to make things better but instead his breathing is worse. I know it’s only been a week and he has to get used to it but for him to be completely out of it like that today, that’s not normal. They put him on antibiotics to be on the safe side until the culture comes back in 48 hours. His blood work is a little off but nothing major I was told. However, Wyatt keeps dropping his oxygen saturations and they have to slowly go up on his oxygen support. When they drew his blood, he did actually wake up and got so mad that he held his breath and turned purple. He’s done that before when he gets mad. Only this time, not just his oxygen saturations dropped but even his heart rate went down to the 50’s which I have never seen him do before. After he recovered from that episode, he was completely out. He didn’t even move when he was picked up to change his sheets, he didn’t cringe when they cleaned his trach. Something is definitely not right. Normally he’d be fighting everything they’d try to do. I don’t understand what’s going on. Just a few days ago he was fine and giving me the biggest smile ever. And now he’s just laying there? It’s that roller coaster ride all over again. By now I’ve learned that you have to take everything with a grain of salt in the NICU and that for every positive step, there is bound to be a step backward coming up sometime. But every time when Wyatt does have a bad day, I’m like a textbook explanation of the five stages of grief. Each time you learn to cope with every stage a little better but you still go through it. It’s very exhausting and frustrating. I’m on the edge of throwing in the towel. Maybe that’s where Wyatt is at. He’s been fighting for so long now. How much can a person really take? I feel this growing disconnect between us, I can’t even quite explain it. When I’m at the hospital with Wyatt, we both can feel each other’s presence, yet we still seem so far apart from each other. Every day I’m torn between wanting to be at the hospital with him because I know he needs me, and trying to stay away in a desperate effort to find that off switch in my brain. But even when I stay away for a little while, I can’t focus on anything anymore. I can’t enjoy anything anymore because my mind is constantly trapped in the hospital. I’m drifting further away from my other three boys, too. I can’t even enjoy spending time with them even though I really want to. I just feel like I lose a piece of myself every day that goes by. Every day is just a blur like it doesn’t even matter. It’s also getting harder to look at Wyatt for some reason, like he’s drifting further away from me each day that he’s staying at the hospital. I’m not sure if what I’m saying even makes any sense. It’s like a never-ending nightmare. No matter how hard I try, I just feel like Wyatt is being pulled further and further away from me and I just can’t reach him anymore… I think I'm losing my mind. I’ll just stop talking now. This is not going anywhere.

Where is the good news?

July 26, 2011

July 22, 2011 - 3 days after tracheotomy



I am so physically and mentally tired, everything just hurts. I can’t shake this lingering headache that I’ve had for over two weeks now because my shoulders and back are so tight from the constant driving and pumping. I need a vacation. Yeah, fat chance of that happening any time in the near future… I haven’t been able to go up to the hospital today yet since everyone else is at work and I’m home with my three other boys. I have to say though, despite my lack of patience lately, my other three kids have been awesome though all this. The other day, I was ready to cry because I couldn’t focus long enough to figure out where to start in this remodeling project we have to do now and my kids simply started taking over. They cleared out the whole room and put it all away. It was amazing. I’m so proud of this entire family! Basically, we have to create bedroom for Wyatt. With all his medical equipment and the home health care nurses soon coming and going day and night, we need his bedroom to be downstairs. Since we have a family room (separate from the living room) which I used as a play room and my office so far, we’re “simply” going to turn that into Wyatt’s bedroom. The problem is, as is that room has two open walls, no ceiling lights and we never replaced the old carpet from the previous owner. So, we have to install a ceiling light and fan, close off the two walls and install doors, possibly a closet, and put in hardwood flooring. Needless to say, it’s not really a simple weekend project and definitely not cheap either. But we said we will do whatever it takes and we meant it. It has to be done for Wyatt to be comfortable at home and for us to have somewhat of a new normal life. So far, we cleared out the space, tore out the carpet and cut a hole in the ceiling to see how we can run the electrical wires. Hopefully tomorrow we can actually get started. Of course, that plan was established before my car’s transmission decided to start acting up yesterday and my car is in the shop for repair now. I’m glad my husband was there when I took it in because it put me over the edge, I couldn’t stop crying afterward. Something good has got to happen sometime soon!

It’s 300pm. It's day 7 post-OP and I just got a phone call from the hospital. Wyatt is not doing so well today. He’s just not responding much to stimulation, not even when they took the sutures out this morning. He’s very lethargic. His blood gases are not normal again and they send off blood work to check for infection and a mucous sample from the trach to check for cultures. The blood work should come back in 2-3 hours, the cultures takes about 48 hours. I have to stop writing now because all I want to do is curse and I’m not supposed to post that on my blog…

you name it, I felt it - July 20th, 2011

It’s been a long couple of days. I can’t even begin to explain the rollercoaster ride of emotions I went through from 24 hours pre-OP to 24 hours post-OP. Any emotion you can find in a dictionary, I felt it. I went through everything from acceptance to anger, from reassurance to doubt, from relief to guilt,... you name it, I felt it. It all started to set in the day prior to Wyatt’s scheduled surgery. When I saw him on Monday, it hit me that that’s the last time I’ll see him with a breathing tube in his mouth. While I knew it was for the better, it still felt bittersweet for some reason. I have no idea why but I suddenly wanted to just leave Wyatt be and wait, whereas a week ago I couldn’t get the surgery done fast enough. Everything just seemed surreal. So I had my freak out moment that night and cried until I couldn’t cry anymore. Then Tuesday morning came and I was antsy. I got to the hospital by 10am and it was pure torture. All the poking and prodding they had to do to get Wyatt ready for surgery. I held his hands at first to try to keep him calm through it all but then after 30 minutes I had to step away or I would have knocked the next person out that was going to mess with him. Aside from all the pre-OP blood tests, Wyatt ended up with three IV’s, one in his head, one in his wrist and one in his foot. The surgeon came in and talked to me briefly about the details of the four procedures that would be done - the tracheotomy, the Nissen, the G-tube, and the muscle biopsy. Hearing him talk about the length of the incision for the Nissen (about 2 inches) and the possibility of having to get the muscle biopsy from Wyatt’s leg if he wasn’t able to get it from the abdominals at the incision site, that’s what took it out of me. I was ready to say no to everything just because of the thought that they may have to mess with Wyatt’s leg, too. Signing the consent forms felt like signing Wyatt’s life over to someone else. And then the dreaded walk to the surgical area at 1220pm, stopping at the red line and watching the surgical team take him away around the corner. I held it together but I couldn’t stop shacking. The surgical waiting area was packed but at least I brought my MP3 player and a notebook. I cranked up the music as loud as my ears could handle and started writing. Zoning everything out around me and putting down my thoughts on paper was the only way I was going to get through this. The shaking never stopped though. In fact it got worse when an hour and fifteen minutes later the surgeon told me he was done, everything went well and Wyatt was taken back to the NICU. They had to get him situated in his NICU warmer again first before we could see him. Even though that only took a few minutes, it seemed like an eternity when I didn’t know whether I wanted to just bust in or run away. Finally seeing him still didn’t make me feel any better. It’s another one of those things that you’re never prepared for. There were even more wires than normally, the two inch incision covered by tape, the brown G-tube covered by tape and his trach held in place by a foam wrap. The trach was actually comforting to see and not at all scary anymore because I knew it would make Wyatt so much more comfortable after recovery. It was also nice to finally see Wyatt’s face. He looks exactly like our 2 year old son. Ironically when our 2 year old was first born, he weighed in at 9lbs 9oz and Wyatt was now just over 9lbs. They even have to same dimple on their chin. Almost as soon as I was done admiring Wyatt’s face though, the panic over the recovery phase set in. Not even 45 minutes after surgery, Wyatt already woke up. The morphine couldn’t get there fast enough. All we could do was to hold his hand and tell him that everything will be ok. Did I believe what I was telling him… I wasn’t sure.

before tracheotomy surgery

after tracheotomy surgery

After not being able to sleep well last night, I woke up early again today at 545am, pumped, grabbed a bite to eat and got to the hospital right at 730am after shift change. Wyatt had a bit of a rough night with his blood sugar levels being high and his blood gases being less than ideal. Due to the morphine and the stress from the surgery, he was also just riding the ventilator at an increased rate of 40%O2 and 55BPM and he was not making any breathing effort on his own (pre-OP 21%O2 and 20BPM as back up only). As a normal response to surgery, his body was also putting out anti-diuretic hormones so he started to retain fluids and his poor face was now all puffy. The fluid retention causes poor circulation and that’s why his blood gases were now out of the norm. (At least it wasn’t an actual breathing issue this time.) They pushed more fluids to try to let his body take over, flush things out and regulate everything on its own again. Unfortunately that means they have to keep poking him every few hours to draw blood. Thankfully by the time I left at 230pm, Wyatt’s numbers were starting to head in the right direction again. His blood sugar level was back within the normal range and his blood gases were slowly starting to improve. By 6pm he had also finally filled a diaper with some long-awaited good urine output. So hopefully things are starting to normalize again… Aside from waiting for Wyatt to bounce back from surgery, I also had to put up with some of the different case workers today. My intention was to get a head start on the mess we'd have to deal with before and after discharge. And while I am glad I have a bunch of people from all different angles who are already setting things in motion, I had no nerves left for it today. There is a follow-up person for the Wyatt’s Medicaid application, a follow-up person for his SSI application, a case worker from the hospital that deals with United Healthcare and helps us sort through home health care agencies, a different case worker directly from United Healthcare that will coordinate continuous care after Wyatt’s hospital discharge, the hospital social worker that makes sure we get trained on all medical equipment, a case manager for a state funded special needs kids clinic which we only qualify for if Wyatt gets approved for Medicaid (and that’s a big if), then there is the rehabilitation team at the hospital consisting of the occupational therapist, the physical therapist, and the rehabilitation coordinator, and let’s not forget about the developmental specialist. And I’m not even including all the doctors and specialists we have dealt with so far. And to top it off, bills are starting to come in, too which we can’t even touch yet because we’re still hoping that Wyatt qualifies for a specific type of Medicaid for newborns with special medical needs… I’m surprised I haven’t lost my mind yet. Or maybe I have and just don’t realize it.

Post-OP July 19, 2011

July 19, 2011

It’s been a really long day and I’m extremely tired, so just a quick update: Wyatt’s surgery went well, no complications. He’s such a fighter that he even woke back up from the anesthesia less than 45 minutes after the surgery. He’s on morphine now for a minimum of 24 hours as pain management and to keep him sedated so everything can heal properly. It’s rough to see the sutures on his stomach from the Nissen procedure and all the IV’s and wires attached everywhere. But it’s also nice to finally see his face without some kind of a tube or tape. He looks so much like our 2 year old son... More details tomorrow. I have to try to get some sleep…

terrified

July 18, 2011

I got up early this morning at 6am to go to the hospital, hoping I’ll still have part of the day left when I return to actually accomplish things at home. It’s 830pm now, I haven’t accomplished anything and I’m freaking out. Wyatt’s surgery is tomorrow and suddenly I feel lost, scared, hurt and so many other things I can’t even find words for. I’m terrified to put my son’s life into someone else’s hands again. This feeling of no control still feels as bad as it did the day he was born. I feel like I went back in time to June 3, like a déjà vu. I’m stuck in this place again of not knowing how things will turn out, this nightmare, knowing that nothing will ever be the same again. My head is telling me the surgery is for the better but my heart feels like I’m losing my son all over again. I just want to scoop him up and run away. I can’t stop crying. I don’t know if I can do this. I don’t want to put him through this.

3 procedures in 1 surgery

July 17, 2011

Wyatt is doing considerably well. He is riding the ventilator a lot less frequently while asleep. In fact, most of the time Wyatt breaths over the ventilator now in the 40s-50s when he’s sleeping. When he’s awake, he does still hold his breath for a while and turns blue when he gets really mad. But the nurse said it’s fairly common with a lot of full-term babies on the ventilator. I don’t freak out over that anymore but it is hard to see him like that because all I want to do is hold and comfort him. It’s not that simple with all the wires and tubes attached though so all I can do is talk to him, pat him and wait for him to calm back down. He does always pink right back up again as soon as he takes that first breath and then he is all worn out and usually takes a mini 1 minute nap. Aside from that he is very alert now and stays awake for longer periods of time. He has toys hanging over his crib now that he boxes with his hands sometimes. He can’t manage to do it intentionally yet but he enjoys looking at them swinging around. A little over a week ago he learned to smile and move his head, too so he’s starting to show his personality. He melts my heart every time when I get to the hospital because he knows when I walk in the room. He immediately starts moving around more and looks right at me. He usually gives me a great big smile, too. The opposite is also true when I leave though. He can be sound asleep and as soon as I grab my bag to leave, he gives me that look that breaks my heart again. Way to let me know who’s really in charge. We’re going to be in so much trouble when he comes home ;)  Seriously though, my patience is being tested. I just want him home and it’s really hard to wait. The surgery date has been confirmed for this Tuesday at 1pm. Wyatt is having a tracheotomy, a G-tube and a Nissen done. The Nissen is a procedure that wraps part of the upper stomach around the esophagus to prevent reflux. Wyatt only has mild reflux but it tends to get worse after a G-tube is placed. I was on the fence about the Nissen procedure for a while but after talking to the doctors and going over the pros and cons, I have to trust the doctors. Ironically, anybody who knows me well knows that I don’t trust doctors. But I also know that these are the experts in the fields of Neonatology and the surgical team is specialized in neonatal surgery. That’s all they do. I have to trust that their recommendations are in Wyatt’s best interest. After all, Wyatt can’t tell us that he has heartburn and if it continues or gets even worse with the G-tube, it can lead to further irritation. After the surgery, Wyatt will be sedated for a good 5-7 days to let everything heal properly. Feedings should start back up within the first 24-48 hours after surgery, increasing gradually until he is back up to his regular feeds of 80cc every 3 hours. Once he is no longer on sedation, we’re hoping to be able to try bottle-feeding again. We’re keeping our fingers crossed that Wyatt will be able to relearn to take his full feeds by bottle without complications so that he ends up not needing the G-tube for long. If everything runs smoothly after surgery, they may even decide to try “sprinting”, which means the doctors may decide on a specific time frame during Wyatt’s awake periods where they will let him try breathing without the ventilator… Everything will depend on how fast Wyatt recovers after surgery to determine when he could possibly come home. There is still a lot to do on our end as well. The home ventilator has to be ordered, we have to learn how to use all the equipment and how to take care of the trach and G-tube, and all financial matter have to be sorted out for home nursing care. Best case scenario, middle to end of August is what I’m secretly hoping for to bring Wyatt home. But who knows. End of August the two bigger boys have to go back to school, too which now comes with its own set of problems. Once Wyatt is home, I won’t be able to drive the 9 and 6 year old to the bus stop anymore. They take the school bus but the bus stop is 1mile from our house on a very busy road in front of the entrance to our neighborhood. Since they are the only two children getting on that bus, I’m trying to work with the principle of their school and the transportation department to see if the bus can pick up and drop off a little closer into our neighborhood. As if all that wasn’t enough to figure out, we’re also going to have to rearrange things or even remodel our house to make caring for an infant on a ventilator possible in a two story home. All our bedrooms are upstairs and going up and down with all the medical equipment every day will be next to impossible. We’ll probably have to turn the downstairs family room into another bedroom and install walls and doors. So there is a lot that still needs to be worked out. Right now, we’re just anxious for Tuesday’s surgery so that Wyatt can finally have a chance to move more freely and not have his face taped up anymore. I’m sure I’ll be a nervous wreck the day of the surgery.

Thank you nurse Rachel!!!

July 12, 2011

No drawn out venting today, I promise. Just a quick update. The surgery got moved back even further. Now the word is next Tuesday but I don’t quite trust that yet either because Wyatt is not officially on the surgical schedule yet. Hopefully we’ll know more tomorrow. Patience seems to be the name of this game. Other than waiting on a surgery date and time, Wyatt is stable and doing well all things considered though. I’m not able to go see him today but the best nurse in the world Rachel is with him. So we know he’s in good hands. The social worker arranged for Rachel to be his primary nurse, meaning she consistently sees him each week on the three 12hour shifts she’s working. I would advise any NICU parent to make the request to have a primary nurse you like. The doctors see Wyatt for less than 5 minutes a day. A nurse who can be with your baby each week is your best advocate. Rachel has gone far beyond her job requirements and I wish I could have her move in with us when Wyatt comes home. She’s kept me sane, she pushes to get answers and to get things moving, and she is so amazing with Wyatt. I can’t possibly ever thank her enough!!!

warning: this post may not be suitable for all audiences

July 8 continued

Oh wait, there is something else that happened today. Before you continue reading though, here is a warning and I’m being completely serious! If you are religious, you should probably stop reading now. I am not religious by any stretch of the imagination and I’m about to vent about a chaplain that keeps bugging me in the hospital at bedside and my venting about such chaplain may offend you. Alright, you have been forewarned…

So for those of you who don’t know, I don’t believe in God. I’m not religious, never have been and no one on my side of the family is. I respect people who are and I look at it as to each their own. Life is challenging to say the least and we each need to have a way to cope. So whatever works for you is fine by me. But I personally do not believe in God, I don’t prey and I am very uncomfortable getting near, much less inside any type of religious building. That being said, there is this chaplain that makes his rounds in the NICU sometimes. The first time he stopped by I had a bad day and was not coping well. I was holding Wyatt at the time during his constant up and down days and my 9 year old son was also with me. Quite frankly, I didn’t listen to a whole lot the chaplain said but it was something to the effect of he wants to prey for Wyatt and God will give us strength. I kindly informed him that I do not believe in God but if he wanted to prey for Wyatt that’d be fine. Telling him that last part was probably a mistake on my end. That day I just simply wanted to be left alone and I didn’t think that statement through. Well, that same chaplain came back today… I’ll try to phrase this nicely… A lot has happened with Wyatt since I last saw that chaplain. There were a lot of failed extubation attempts, the surgery decision we had to make, the pending genetic testing, etc. Just seeing that chaplain made me immediately uncomfortable but I figured he got my point last time I spoke to him when I said I didn’t believe in God. Well, apparently he didn’t get that point. Not wanting to talk to him again, I just looked back at Wyatt and talked to him instead. Ignoring the chaplain didn’t work either though. He just stood there uncomfortably close to me wiggling his keys in his pocket to make sure I could hear him. It must have looked funny from a bystander’s perspective. You could feel the tension. It was like a contest of who would give in first. Stubborn as I am, when I still didn’t respond to him wiggling his keys, he finally addressed me by my name after two minutes of just standing there. The most uncomfortable two minutes ever by the way. Ok, before I continue, I have to tell you that I got a long speech from a respiratory therapist last night about how “when we don’t understand what’s going on, why this is happening to us in our life, we just have to trust that God only puts on us what we can handle”. I bit my tongue then, even though she repeated herself several times, and just tried to change the subject by repeating that I just wanted the surgery to be done as possible. Anyway, that’s the background story, among many. Back to the chaplain story. So he lost the contest and finally spoke to me even though I was intentionally not acknowledging him. Again, to be polite and keep my comments to myself, I blocked out most of what he said and he finished by saying he’d continue to prey for Wyatt. I was nice. I didn’t want to be rude and I wanted to show respect for his beliefs. After all, I know he probably means well and was just trying to comfort me. But enough is enough already. I can’t hold it in any longer. I have to vent somehow, right now. So here it goes (hence the previous warning).

This is what I really wanted to say to the chaplain: People want to be respected for the religion they believe in. Then how come they themselves have such a hard time leaving non-religious people like myself alone and spare us of their religious comments? You want to prey, then prey but leave me out of it. If there has ever been a time where I was any surer that there is no God, it is now. Not even the devil himself (which I also don’t believe in) would put such misery on innocent little babies. This is not about me and what I’m going through. Why does Wyatt have to go through this? So don’t give me this crap about things happen for a reason or God only puts on us what we can handle. Screw that. I really don’t care who believes in what but have the courtesy to also respect others who don’t believe in any religion. I already told you I don’t believe in God, yet you keep coming back and bugging me. You’re not going to convert me and I’m not interested in hearing more about your religion either. So the only reason I see in why you insist on making continuous religious comments is so that you can feel better. Well guess what, this is not about you or me or anyone else. The circumstances surrounding Wyatt are simply what they are. There is no reason or explanation for it so please stop trying to hide behind religion whenever life hands you things you can’t explain…You have no idea how much I just wanted to tell that Chaplain where to go with those comments - and it’s not heaven.

Ok, I'm done venting. I feel better now.

Surgery date pushed back

The results of the follow-up echocardiogram came back normal and the upper GI test today went smoothly. I made sure to be at the hospital by 8am to be able to go with Wyatt to the upper GI test at 9am. It was not at all what I expected. The test itself took less than 10 minutes. Moving him from his crib to the portable bed and back was more time consuming and tricky with the ventilator and leads attached than the test itself. Basically, as prep for the test Wyatt had to skip one feeding so he’d have an empty stomach. In radiology, they simply laid Wyatt on an examination table under a big x-ray machine that was hovering over his stomach. They pushed some dye through his feeding tube directly into his stomach - so he did not have to taste any of it, yeah. The doctor pressed a button every now and then on the x-ray machine to take pictures as the dye was moving through Wyatt’s stomach and intestines. He waited a couple minutes to see if Wyatt had reflux and then the test was over. Thanks to the feeding tube, the nurse was able to extract most of the dye again right after the test. Wyatt did really well. He was in a good mood and didn’t seem to be bothered. In fact, it looked like he kind of enjoyed the ride through the hospital hallways looking at all the bright lights. Afterwards, he just enjoyed his long awaited feed, filled his diaper and went back to sleep. I stayed and hang out for a few more hours and simply starred at him with amazement… As far as the surgery goes, well we have yet to get an answer as to when exactly it will be. Patience is definitely not my friend when it comes to things like that. Last Thursday we were told the surgery will be this Monday or Tuesday. By Friday I was told that the upper GI will be this Monday and we then have to wait on the surgical team to decide on a date and time. This morning I was told that it’s not depended on the upper GI test and it looks like the surgery will be this Wednesday. Hit the pause button, this is where I need to tell you that I was supposed to have my 6 week post-partum check up this Wednesday and now had to cancel without knowing when to reschedule it for. Continue, and of course, as soon as I cancelled my appointment for this Wednesday and made arrangements for the kids to be watched that day, I get a phone that the surgery probably won’t be until this Thursday or Friday. I admit, I don’t have the best patience in the world but come on. I just want a date and time so I can plan for both me and my husband to be able to be there. A little preparation, apparently that’s too much to ask for. That about sums up my day…

Tracheotomy will be early next week - July 8

We had a meeting with one of Wyatt’s doctors yesterday to review his current status and discuss his continuous treatment plan. To sum it all up, it is confirmed that Wyatt had a stroke shortly before or during birth which caused his brain damage on the right side and the rear of his brain. The effects of this injury are speculative at this point and can range from full recovery by means of his brain remapping itself to cerebral pulsy. All we can do is look at milestones as he gets older to see if he is meeting them in the expected time frame and if not, to intervene and give him the best possible chance to develop to his full potential. At this point it is unclear why he continues to have breathing problems to the degree of being depended on the ventilator, were as just a few weeks ago he was able to only be on the nasal canola with minimal supportive oxygen. His current ventilator setting is on auto-mode, meaning the ventilator supports him when needed at a rate of 30 breaths per minute but he can initiate breaths and breath over the ventilator. He does not require any additional oxygen at this time so he is breathing room air which has an oxygen concentration of 21%. That indicates that the oxygen itself is not the problem. He has been able to increase his breathing rate to about 50 breaths per minute on average while awake. However, he is having increased problems while tired and asleep to the point where he is riding the ventilator, meaning he is not initiating any breaths and the ventilator has to do all the work for him. The pulmonologist was consulted and Wyatt’s symptoms are pointing toward a rare genetic disorder called Congenital Central Hypoventilation Syndrome (CCHS). Blood work has been sent out to test for this disorder but results will take about two weeks to come back since there are only two labs in the US that can process CCHS genetic tests. If Wyatt does test positive, it would mean that he will remain depended on the ventilator and there is no cure. There have been some medical advances over the last few years that look promising and children with CCHS tend to improve as they get older, sometimes even to the point where they only need the ventilator at night. In Wyatt’s case however, we’re not sure what it will mean because CCHS normally presents with normal MRI results. Wyatt has the additional challenge of the brain injury so there won’t be definite answers for his prognosis. Needless to say, we’re hoping the test comes back negative… In all honesty, his symptoms fit the profile. I’m hoping it’s “just” brain related but my instinct is telling me otherwise. All along I had this nagging feeling that he won’t come off the ventilator. I can’t explain it, it’s just a feeling I have that won’t go away. I’ve been called pessimistic by a couple people but I like to think that I’d have the best instincts when it comes to the bond to my own child. I’m a realistic person and with all the ups and downs, for Wyatt’s sake, I cannot afford to be blind-sided and be in denial. I have to be as prepared as possible to make the best possible decisions for him. Right now that means, no matter what the outcome of the genetic testing, Wyatt needs a tracheotomy and a GI tube. He extubated himself last night again and they had to reintubate. He’s 5 weeks old today and the only way to keep a 5 week old full term baby lying still all day to prevent him for continuously extubating himself is by keeping him sedated. No matter how much we tried to avoid having to make this decision, it’s in Wyatt’s best interest. Having a breathing tube in his throat is like breathing through a straw. Aside from knowing he’s very uncomfortable, watching him gag on the tube over and over again is the hardest thing to watch. With a tracheotomy, he’ll be a lot less irritated, can breathe easier and move more freely. I did have a chance to see a couple other babies in the NICU with a trach and it’s a night and day difference. They are so much more comfortable and so much happier. They actually seem used to it as if it was any other part of their body. And if Wyatt does not have CCHS and improves over time where he doesn’t need the ventilator anymore, then the tracheotomy can be reversed. Whether or not he’ll be able to fully or partially bottle-feed once the trach is in place is yet to be seen. That’s why they’re going ahead and placing the G-tube (a feeding tube directly inserted to his stomach) at the same time of the tracheotomy surgery. The chance of him needing it at least partially is high so we didn’t want to put him through a second surgery a week later. Instead, they’ll just get it done at the same time so he only has to be under anesthesia and pain medication once. If he ends up not needing it anymore down the road, it’s an easy removal that does not require additional surgery. An upper GI and a follow-up Echocardiogram are being done today and then the Tracheotomy and G-tube surgery should be scheduled for early next week.

The things we take for granted in life. A smile, a cry, a touch… breathing. We even take life itself for granted. It’s true that Wyatt is having a rough start to his life. He certainly is not out of the woods by any means and we never know what hurdles we will face one day to the next, sometimes even each hour. But amazingly enough, every person who has met him has been affected by his strength and his will to live. He is teaching us so many lessons, many of which we are not even aware of yet. One thing is for sure, whatever his challenges ahead, he is and will continue to do great things in his life. And who knows, maybe his story will have a profound impact on someone else. Something good has to come of this.

more crushed hopes - July 4

What a day of ups and downs - again. It all started with a 9am phone call from the nurse. Wyatt extubated himself for the second day in a row. It’s been barely 29 hours since he was reintubated yesterday and there was already swelling and irritation in his airway then. In fact, when we last saw Wyatt yesterday, we told him that he’s not allowed to pull the breathing tube out again. Well, he listened… but then he discovered how to turn his head today and managed to wiggle the tube out in a matter of seconds. To give him a chance to work for it on his own and try to avoid intubating him again in such a short time frame, the doctor tried him on CPAP. Wyatt definitely didn’t like that mask wrapped around his head either but he did ok with it while we were with him in the morning. But just a couple of hour after we left, I again received a phone call. Wyatt couldn’t hold up his oxygen saturations which started to decrease his heart rate and they had no choice but to reintubate. I wanted to punch a hole in the wall. What’s even worse, the doctor had to put in for standing order of sedation as needed, meaning if Wyatt does not stay calm enough to prevent further irritation to his airway, then they have to medically calm him down. The risk of further swelling and irritation to his airway is too high should he continue to extubate himself. Which leaves us with the big question of “What now”? While he is making slow progress by continuously breathing over the ventilator, it is clear that he still needs the ventilator and that may continue to be the case for not just weeks but possibly months or even years. The hope is there that as he gets older he’ll get stronger and will be able to progressively do more work on his own. But for now we’re stuck and we have to figure out how to proceed. I was hoping it wouldn’t have to come to this but I think we might be at a point where we have exhausted all our options. They ruled out everything else. It seems like it is some sort of a connection between his brain damage and the inability of the muscles responsible for deep breathing to work efficiently. I am terrified to even consider a tracheotomy but I do believe it’s the best solution right now. This decision cannot be about what’s more convenient for us from a care taker standpoint which is all the nurses and doctors ever talk about. This decision has to be made in the best interest for Wyatt. I’ve seen him every single day since he was born, at every stage he’s been through, with every piece of equipment available in the NICU. I know he is fighting so hard and I know he’ll continue to make progress. But from the bottom of my soul, I cannot believe that staying in the hospital is the best place for him to be anymore. If there is nothing else that can be done medically other than wait, then he needs to be home. He is struggling so much with that tube down his throat. He keeps gagging on it and vomiting, they constantly have to suction him which has a domino effect. When we saw him two days ago on the nasal canola, he was so hoarse from the constant extubation and reintubation, he couldn’t even cry. I know he’s in even more pain now. The only way to stop this cycle of him pulling the tube out and the doctor having to put it back in is to sedate him. Everything in me says that’s not the right thing to do. I don’t want Wyatt to have a tracheotomy but I think it would be best for him with a lower risk of long-term damage to his airway. I can’t tell you how much I’ve cried over this decision, it’s not a decision I ever wanted to face. But just from a developmental and psychological viewpoint, I have to believe that Wyatt would thrive better at home. He needs to be able to sleep when he wants to sleep instead of a being pocked and prodded at the hospital. He needs to have the same people taking care of him every day instead of a rotating nursing staff. He needs to have family around him who can soothe him and hold him instead of lying in a hospital crib every day. He needs to hear laughter from his brothers instead of alarms going off in every single room of the NICU. He needs to see his family more than just a couple hours a day. And with a tracheotomy, he at least has the chance of moving his head free of tape and tubes. He’d have a chance to play with toys or simply smile instead of being sedated at a hospital so his tube won’t move in his throat… I don’t have all the answers yet how home health care can work, especially with three other active kids at home. And how the heck we’ll be able to afford it, I have no clue. But every fiber of my body is telling me, that’s the right decision for Wyatt.

A moment of peace – July 3

The 50 minute drive to the hospital can be the longest and loneliest drive ever or simply needed time to put yourself back together again. In my case, listening to music is usually my therapy and a chance to sort through my thoughts. Once at the hospital, I’m almost in auto mode. Check in at the front desk to get your sticker with the capital letters “NICU” for everyone to see. Then up the elevator to check in with the receptionist there. Tell them your last name and recite the band number. You know your baby has been in the NICU for a while when you know every receptionist and you don’t have to look at your band anymore to recall the correct number. Then there is the scrubbing up to your elbows for three minutes. Every time I catch myself starring at the instruction sheet even though I could do it properly in my sleep by now. This is the moment when I always get anxious, while scrubbing right before I walk over to see Wyatt. I never know what I’ll be walking into that day. Is he having a good day? Has anything changed? Which doctor is here today? Who’s his nurse? It’s the same routine and anxiety every day.

Tonight when I got to the hospital, the nurse was already done with his evening hands on assessment and the RT was telling me about how much he enjoyed his bath time. While I’m glad to hear that he was doing well, I also feel guilty for not being able to be there all the time for all these moments. He weighed in at 8lbs 7oz, a little less than a couple days ago which is probably due to all the work he had to do lately burning more calories than he’s taking in. His feedings are up to 73cc every three hours and most importantly, his head circumference is increasing at a normal rate of about 0.5cm a week. Breathing wise the RT is letting him rest for now and put him on pressure support instead of auto mode like previously. If he continues to do well, they’ll switch him back to auto mode tomorrow to make him work a bit more. We’ll see how the night goes. .. After talking to the nurse for a while, I finally got some quiet time with Wyatt by myself. He was swaddled up in his crib, getting his tube-feeding and trying to go to sleep. I turned on his musical sea horse and put my hand on his chest with my finger touching his cheek. He calmed down instantly, his face relaxed and he closed his eyes. There was no need for words. He knew I was there and that’s all that mattered. Feeling his chest rise and fall with each breath was also calming to me. I put my head on the side of his crib and closed my eyes. For a moment there I could pretend to be somewhere else. I could imagine being in my bed at home with Wyatt sleeping right next to me. Just feeling and hearing him breathe was comforting. That moment was priceless, I wish I could have held onto it forever. Unfortunately, it was interrupted by an alarm indicating that his tube-feeding was done. That alarm brought me right back to reality. But for the short time that this moment of peace lasted, it gave me some strength back. I looked at Wyatt and I told him that it’s ok. I told him that he’s strong, that I am proud of him and that I love him. I told him that he needs to keep fighting. But I also told him that it’s ok if he can’t quite figure this breathing thing out on his own. Ventilator or not, we’ll make it work and we will bring him home.

back on the ventilator again - July 3

July 3, 2011

As of 4am this morning Wyatt is back on the vent. He did relatively well last night with 60% O2 taking about 30 breaths a minute. They were shallow breaths but he kept his saturations up at that time. But I guess throughout the night he couldn’t hold his saturations anymore, they kept going up on O2 but it just wasn't enough… I went into it yesterday knowing that chances are he wasn’t ready to be just on the nasal canola yet and it probably wouldn’t last. But damn it, it still feels like such a defeat. He is fighting so hard, yet we keep coming back to the same situation. Logically I know he has made improvements. I know he’s been breathing over the vent a lot more which adds up to him taking breaths in the normal 40-60 range vs. him only being in the 20’s previously. But on the other hand, I also know that just breathing over it is not enough to come of the vent. While he still isn’t taking enough breaths per minute, his problem is more that he can’t seem to breathe deep enough on his own. I wish we had an answer as to why he can’t seem to manage that. It’s so frustrating and discouraging.

It’s 3pm now and I’m still sitting at home. I’m hesitant to go to the hospital and see Wyatt. My husband is off from work today and he offered that I could go but something is holding me back. I saw him on the nasal canola yesterday. I don’t want to go today and see him back on the ventilator. I usually go to the hospital at least once a day and call ahead if I can’t make it first thing in the morning. But today I haven’t even managed to pick up the phone and call to check on him. I can’t shake this feeling that he may not ever completely come off the vent. Maybe down the road he’ll manage a medium to be off the vent when he’s awake but it seems that he definitely needs it when he gets tired and when he’s sleeping. I don’t want to go up to the hospital only to stay for a couple hours. I want him home! I want my baby home like it was supposed to be. I want someone to call me and tell me he’s ok. Why can’t I have that? Why can’t they fix him?

Wyatt pulled the breathing tube out again - July 2

July 2

The first bill came in the mail today for Wyatt’s care at the first hospital, 6 days of NICU there equals a little over $18,000. Wow, that’s less than a week worth of treatment. The hospital he’s at now is more advanced and he’s been there since June 9^th… We have his social security number now so hopefully we can get the ball rolling on his bills soon too. We have decent insurance but they still only pay 80% after our deductable. And then certain tests and consultations are questionable whether or not they’ll be covered. It'll be a headache sorting out all of his charges for treatments, specialists, different hospitals, etc.  I have no idea how we’ll manage and this is only the beginning. But for now my approach is, it's just money and I'll fly in any specialist he needs and worry about payments later. We'll do whatever it takes to give him the best possible chances no matter what difficulties we'll face down the road!

230pm, I just received a call from the nurse. Wyatt pulled his breathing tube out again. They have him on the nasal canola for now on 4L and so far he's doing ok. He has been doing better over the last 5 days initiating breaths on his own at a rate of 50+breaths per minute. The nurse warned me though that it may not last since he still had times when he was riding the vent even as recent as this morning. If he stops breathing again of course or if his saturations keep dropping, he'll be put back on the vent, but they're letting him try the nasal at least. I’m not sure if I should be proud of Wyatt or yell at him for pulling the tube out. My husband did say yesterday that Wyatt gave him this look like he was done with the tube. We should have known he was getting ready to pull it again. I’m crossing every finger and toe I have (but I'm prepared that he may not be fully ready)!

Keep up the good work Wyatt!

Wyatt is 4 weeks old today - July 1

July 1

Four weeks ago the most amazing fighter was born. Little monkey, you are teaching me so many lessons and you amaze me every single day with your strength and courage. No matter what the challenges ahead, I know you'll do great things!

For now, I’m giving up on trying to get up in the middle of the night to pump. I’m mentally and physically just too exhausted. With three other kids to take care of and the constant drive to the hospital, I have no chance of catching up on sleep during the day. I feel guilty not to also pump at night but something has to give.

CCHS testing and our new "normal" - June 30

June 30

Pumping every 3 hours day and night during the last couple of days, I've been able to increase again and I'm stocking the freezer. It’s hard to keep up with though. I'm by no means on a consistent schedule every single day, sometimes I have to delay pumping for 4-5 hours simply because of the drive time involved to and from the hospital. And there are nights that I do sleep through the night even though my alarm is going off on the other side of the room. I guess you can say I manage under the circumstances. I'm trying to find a new normal and get on some sort of a schedule… Wyatt has being doing pretty well over the last 4 days, doing more work on his own. He still has times where he rides the vent but overall he's hitting higher number of breaths per minute a little bit more frequently it seems. We’re hoping it's a sign that things are SLOWLY improving. His art line came out today so we finally got to take his footprints now, yeah! The pulmonologist saw him today and sent out for labs to rule out congenital central hyperventilation syndrome (CCHS) as part of the process of elimination. It doesn’t seem like Wyatt is following the typical pattern of that disease but the pulmonologist wants to make sure. We won't get those labs back for about two weeks though, they're processed in California. I did change Wyatt’s diaper today for the first time and took his temperature. I’m still very nervous to touch him or hold him or do anything with him especially with the vent attached but I/we have to get comfortable with it somehow. My husband gave him a sponge bath last night. It was bittersweet. You could tell he was nervous, too. Quite frankly, it was hard for me to watch because I so long for the normal fun bath time that I had taken for granted with my other three kids. But this is our new normal I guess.

another specialist, the pulmonologist - June 29

June 29

Wyatt has days when he simply rides the vent and then days where he even breathes over it while sleeping. It seems very random. The doctor wants to now consult with a pulmonologist to make sure we're not just all blaming his brain damage for his breathing issues since the MRI did not show that the brain stem was affected. Again, we're back to hoping something will show up that's fixable. Either way, we'll be working with pulmonologist if he stays on the vent too so I'm glad he moved forward with the consult now instead of later. Yesterday's nurse also left a note on Wyatt's chart to do footprints when the art line comes out. Nurse Rachel rocks!!! I wish we could have her every day! She arranged for a bigger crib for him, made sure he has toys to look at for stimulation, and has poseys on his hands so he can’t try to pull the tube out again. Definite brownie points for her!!!

possible medical decisions - June 26

June 26

Wyatt still has the art line in his right foot, so we still can’t get his footprints done yet. It was supposed to be a father’s day gift for my husband, something normal that everyone gets when they have a baby. But ever since he was born, Wyatt was either not stable enough where any type of stimulation had to be avoided or he had some kind of IV or line in his foot… We’re supposed to meet with rehab person sometime this week to establish a plan to maintain Wyatt's tone. He's not making progress with his breathing, letting the vent do almost all the work even when he’s been awake today. I’m losing hope that he'll come off the vent any time soon but no one else here is willing to discuss that possibility yet. It’s very frustrating for me. I feel alone in my head right now worrying about a possible tracheotomy and logistics and financial matters to arrange for home health care and taking care of our other kids. It's just hitting hard right now that we won’t have normal days anymore and on the selfish side, my business will be non-existent... Pumping wise, water intake is my biggest problem I think and I'm trying my best to make myself wake up every 3hrs at night to try to build up again. I will give it a couple days and see if that works.

June 27

New house rule: Fear and self pity are only allowed for a total of 5 minutes a day!

Can I fire a nurse? - June 25

June 25

I’m so angry right now. Wyatt pulled his breathing tube out this morning and the nurse didn’t even bother calling me. She just laughed it off and said that it happened right when she came in this morning during shift change and that she must have forgotten. She casually mentioned that he wasn’t making any effort to breathe on his own so the had to bag him and reintubate. Are you serious? How can you forget to mention that little detail to the parents immediately? This makes me so mad because I had warned every single nurse every day that Wyatt is known for pulling his breathing tube out. He had done it three times in the first week of his life at the other hospital already. But this nurse always just laughed it off like it’s no big deal, like I was just joking. And she seems to be one who’d rather chit chat with her co-workers whenever possible rather than stay with the babies she’s in charge of. Maybe working in intensive care is not a good career choice for her then. I’m so furious right now. This is no joking matter. The more often he pulls his tube out and has to be reintubated, the more likely it will cause irritation, swelling and even airway damage. Thankfully Wyatt is ok but that still doesn’t make me feel any better… On another note, I’m having some pumping issues. I have noticed that I’m getting a lot less than I used to even though I've paid closer attention to adequate water and food intake and I'm trying my hardest to keep up pumping every 2-3 hours during the day. I still can’t get up at night to pump though, I'm simply too exhausted to even hear or react to my alarm on the other side of the room. I used to get a total of about 5.5-6oz every 3 hrs during the day. Now I'm down to 3-3.5oz in that same time frame. I know it’s probably just stress but I have to be proactive. Breast milk is the only medicine I can give him and probably the most beneficial.

Wyatt's second MRI - June 23/24

June 23

The second MRI was done at 9pm last night. It's after 4pm now and we still haven’t gotten results back. Patience in this case is not my strong side, I keep pacing. Hopefully nothing has changed, meaning it's not any worse than it was during the first MRI. In this case, no change would be good news.

June 24

The second MRI results didn't show any new problems,  just an evolution of the original stroke damage. This second test confirmed that the main affected areas are the back of the brain responsible for sight and its interpretation, and the basal ganglia. I did get a chance to speak to the neurologist over the phone though and he is optimistic that he might be able to come back off ventilator over time once the right balance for seizure medication is established and his seizures are controlled. All other long term effects have to be seen done the road though in the next months and even years. The curtail point right now is the time frame. The next two weeks are important to watch for progress as two to three weeks on the vent can eventually lead to a weakened airway and then come with its own set of problems. So we’re back to the waiting game. On the positive side though, since being back on the vent 3 days ago, Wyatt finally showed me his beautiful eyes again! He just has a way about himself of making you feel better even on the worst of days.

back on the ventilator - June 21

June 21

Last night Wyatt was doing very well on 1LPM at 100% O2, better than he’s ever done before. But suddenly this morning at 530am he had an episode where he stopped breathing all together so they had to bag him and now he is back on the ventilator again. The overnight doctor thought it looked like a seizure so they started him on Phenobarbital. Another MRI is going to be scheduled. The doctor hopes that Wyatt is “just” sleep deprived causing these desaturation episodes to get worse.  It's too early to tell whether or not, and to what extend he will be recover but we have to believe that his little body can find a way to heal itself. It's up to him now!

This emotional roller coaster is horrible. Yesterday we went home ready to throw a party because he was doing better than ever before. And today we're back in disbelief how he can suddenly just stop breathing again. We're barely above water at this point. We don't have the luxury of hanging on to a glimmer of hope because it can change again in an instance.

the bad news keep on coming - June 19/20

June 19

It's so hard to watch your little baby be hooked up to 40+wires with gauze wrapped around his whole head for a 24hr Video EEG. He's not showing signs of seizures but they have to make sure. He does not like this test at all.

June 20

It's early in the morning. No official results yet but at first glance the nurse practitioner for the neurologist couldn’t see any seizure activity on the 24hr video EEG. Last night he was all stressed out and so exhausted, his numbers were all over the place even while awake. They bumped him up to 6LPM and 40%O2. I hope they just let him rest today so he has a chance of stabilizing himself. The Respiratory Therapist already told me a few days ago that CPAP would be the next step if he doesn’t stabilize his episodes. All these tests are sure not helping and they seem like torture for his little body.

And the bad news keep on coming... We talked to doctor over the phone this afternoon. The EEG did not show any seizure activity and after the process of elimination, it looks like his brain injury is causing coordination issues for his ability to breathe. Wyatt has been having more episodes over the last three days and he keeps dropping lower and is needing more stimulation to come back up. The 6LPM and 40%O2 that they put him on last night didn’t seem to make a difference. Since the 6liters of pressure didn’t work, the doctor doesn’t think CPAP would work either. As a last attempt, he is trying him on 1LPM at 100%O2 today to see if 100% will give him enough O2 reserve when he does have these episodes. If that does not work, he'll have to go back on the ventilator. The doctor’s concern is that if he goes back on the vent, there is no guarantee how long he'll be on it or if he'll ever come back off. There are no guarantees for anything. No one will be able to tell us whether his brain can somehow figure out an alternative route and if so when that will be. The doctor is basically putting the decision in our hands how we want to proceed if he has to be back on the vent. We either need to look at a long-term care facility so he could be on a regular ventilator or Wyatt would need a tracheotomy to do ventilator care at home. How can you possibly make such a decision? Of course we want him home but he'll need 24/7 care and we can’t possibly do that by ourselves with three other kids. I’ve come to accept that I won’t be going back to work but everyone else has to. That’ll leave me as the primary person being home with all the kids. How am I supposed to take care of Wyatt then? How are we supposed to afford all the medical equipment needed and the home health care nursing? Having him in a long term care facility provides the problem of how far of a drive will it be, how often can we really see him, and the simple fact that someone else is taking care of him instead of us. Wyatt needs to be around his family just from a psychological standpoint alone… Nothing makes sense anymore. We keep waiting for a day that we get good news. But instead he’s heading in the wrong direction. I don’t even know what to feel anymore. The thought has even crossed my mind of whether we’re still acting in Wyatt’s best interest instead of our own.

more tests, more waiting - June 17

June 17

Anyone have a free-standing punching bag they want to get rid of? I could really get some good use out of it right now. Come on Wyatt, prove these doctors wrong. You're 2 weeks old today, it's time to kick some butt!!!

They’re repeating the EEG today, hoping to catch him during one of his episodes because Wyatt's breathing issues/low O2 saturation episodes don't seem to be feeding related and are happening more frequently. It’s ironic to say but I'm almost hoping they find seizure activity. Maybe then they can at least begin to try to treat him instead of guessing and observing. Everything is a process of elimination right now and the only answer we keep getting is that it's up to him and how his brain can rewire itself. We won’t get results till tomorrow or even Monday though... Mentally it's such a rollercoaster. I try to stay positive but it's getting progressively harder. My dad went back home yesterday, Wyatt hasn’t improved his breathing and I have a hard time being patient with my other boys even though I know they're being really good. It's hard to simply look at people sometimes, much less talk to them. I get angry at people now who try to point out the positives about Wyatt because no one seems to even want to talk about the reality and the what if he doesn’t improve further. I even have a hard time looking at Wyatt sometimes or holding him because I'm scared it might be the last time I see him. A chaplain came by yesterday when I was holding Wyatt and had my 9yr old with me. It took everything out of me not to tell him where to put his comments. It's definitely getting to me that there aren’t going to be any breaks, physically or mentally, with three boys at home and one very sick little man in the hospital. Pumping every three hours during the day is almost impossible too so I worry about that. At night I have been so exhausted, I have not been able to get up and pump. Can I just run away please and find an off switch for my brain?

It’s evening now and Wyatt's 2nd EEG also came back normal. They will move forward with a 24hr video EEG to get an image of him during his low O2 saturation episodes. Another test, it seems like torture. It's a process of elimination now. They tested for everything else and even though he has no obvious signs of seizures, they want to make sure. If it comes back normal, we're back to waiting to see how his brain can adjust by the time he's 6-8wks old. That seems to be the time frame where the chances of his brain healing itself are most likely… I’m not sure how much more of this back and forth guessing and waiting game I can handle.

Wyatt on Daddy's comfy chest - finally

lonely and lost - June 16

June 16

I’m scared. Maybe I'm wrong and I hope I’m wrong but it seems like he hasn’t made any progress with his breathing since he was born. He's two weeks old tomorrow. He makes progress with everything else but not his breathing. I have this burning question on my mind but I'm too scared to ask the doctors. If he does not improve his breathing, is his condition something he can live with outside the hospital? And if so, how? I want to stay positive but I have to start facing the real questions, too. I feel guilty for even thinking about this. And what’s even worse, no one else in this family wants to even talk about this possibility yet. It’s a very lonely and scary place to be stuck in your own head day and night.

2 year old brother Calvin holding Wyatt's hand for the first time

9 year old brother Cory and 6 year old brother Landon visiting Wyatt for the first time

a better day today - June 15

June 15

He's doing much better today. My husband is at the hospital right now and he's taking our oldest son (9yrs old) along. Wyatt is much more stable today. It seems that everyone is in agreement now (occupational therapist, doctor, respiratory therapist) that while he does well with bottle feedings or nursing, it just wears him out so much that he can't regulate his breathing afterwards. So far he's been doing much better just tube-feeding. I was there this morning around 11am and he did drop a couple times after the feeding but he was able to bring it back up on his own and stayed stable the rest of the time. The Occupational Therapist also said that she will continue to work with him during his tube-feedings by encouraging the use of the pacifier or sucking on a finger to keep reinforcing that skill so that when he does get to try bottle feeding again, he'll be ready and should transition easier. The Physical Therapist should have also stopped by today later in the afternoon and I was told she will probably work with him on exercises to keep his arms and legs moving.

reinforcing the sucking instinct while tube-feeding

short lived breast feeding progress - June 14

June 14

Slow progress is progress I guess. Wyatt is taking all of his feedings so the IV is not necessary anymore. He latches on to breast feed too, but his O2 levels still drop when he's sleeping. It looks like he’s going to be in NICU for a while yet… He's had a rough day today. His numbers keep dropping after feedings and the doctor said it looks like a coordination issue, meaning the combination of sucking, swallowing and breathing may be too much for him to handle so that his numbers drop afterwards simply because he's worn out. They did blood tests and chest x-rays to rule out everything else and nothing indicates seizures either. So to stay in the side of caution, they are only tube-feeding him for the rest of the night hoping that will help him stabilize. If nothing works, they may have to put him back on the ventilator. I'm not sure what that means in regard to when/if he can come back off the vent… It's going to be a long night. It's hard to accept that we won't be able to get definite answers and that we won't really know the long-term outcome. All we can focus on right now is making sure his numbers dropping while he's sleeping is not caused by seizures and if it is, to stop that from happening to prevent further damage. Hopefully his little brain will figure out a way to work around whatever damage there may be. Whatever happens, we'll just face it head on. There is no choice in the matter. Wyatt is leading by example by fighting hard every single day and night. We have to follow his lead.

Wyatt all curled up