Friday, December 23, 2011

A very Merry Christmas...

Our Clayton Cash has been doing very well since my last update!!  He has been in such a better mood lately—and I am so thankful!  I was starting to worry that his awful temper fits were going to stick around forever.  I didn’t know what I was going to do with the little wildcat..haha!  He still gets a little fussy but he is consolable—especially when he’s being held.  Eric & I are making up for lost time & getting lots of snuggle time with our little booger.  We are so in love : ) 

Clay continues to do very well with his trach. The nurses say it’s healing beautifully!   We have been learning how to suction his secretions & do trach care on our own, which is not bad at all!  Also, Eric & I did our first trach change on Tuesday...that got my adrenaline pumping!  My heart was pounding & my hands were!  But it went relatively smooth and I think we did a good job for our first time.  Clay also pulled out his NG (nasogastric) tube, so we learned how to put that back in. Clay handled it all so well—he didn’t require any drugs or extra oxygen or anything!  Yay Clay!

He is also doing well with bolus feedings.  He’s now getting 90 mL of milk over an hour period then his feeds are turned off for two hours.  The docs tried to push him to take the milk over a 30 minute period yesterday, and that didn’t go so well.  He puked more than I’ve ever seen him, poor little guy.  But 90 mL in an hour is still good, and that schedule will be easier for me to manage once we go home.

And yes, home is definitely on the radar!! The Discharge Coordinator came to talk to us earlier in the week and she is getting the ball rolling with the going-home process.  I would guess it will be the middle of January before we do get to go home, but how exciting?!  We will have an intensive-care unit set up in our living room & things will be far from normal, but we are more than ready for the challenge!

I suppose just about everyone has already seen the amazing photographs & video my good friend, Dusty, took of our sweet little boy.  Dusty is so talented & did such a fantastic job capturing the moment…he is truly an artist. You should check out some of his other work, too:

Clay will be TWO months old tomorrow!! And Christmas is only TWO days away! While this Christmas season has been anything but normal for our family, I can honestly say I’ve never felt more in the Christmas spirit.  Even though we will be missing out on some usual family traditions, I can think of no other place I’d rather be than in the NICU holding my sweet baby on Christmas morning. God has blessed us so.  I hope and pray that each and every one of you is filled with the HOPE & LOVE & JOY & PEACE that is filling me and my family this holiday season.  After all, those are the things that are truly meant to be shared at Christmas.  May you all have a wonderful Christmas weekend & may God bless you all! 

Wednesday, December 14, 2011

We are liking the trach!

Clay had his first trach change yesterday. Our pediatric surgeon did the change this first time and I was able to stay and watch. It looked really simple and made me feel better about doing this on my own one day. Clay handled it like a champ. He had a little 'morphine-versed cocktail' to help him out!

Since the first trach change went well, we are now free to hold our little man again! And better yet, we are able to really cuddle..the trach makes it so much easier! Last night I had him snuggled up on my chest and he fell right to sleep. I think he liked cuddle time as much as mommy did ;)

Clay also got moved into a big boy bed..a crib!! We've been able to put him in his little boppy pillow so he can sit up and look around. He also got to use his pillow for some tummy time. I'm sure that felt weird after lying on his back for the past 7 weeks!

We're still on the morphine IV drip, but he should come off of it either tomorrow or Friday. Yay! We also made it back up to full feeding amount of 30mL/hr and we're even trying something a little different now. The nurses call it bolus feeding..He takes 90mL over a 2 hour period, then his feeds are turned off for an hour..he'll do this during the day then he's put back on continuous feeds through the night. Hopefully we can get him on a good feeding schedule that will be easy for us to handle at home too.

We are continuing to move in the right direction, thank the Good Lord! No official talk of going home just yet, but we're hoping it won't be too long!

I've got a favor to ask all you fine people reading..please say a little prayer for our friend Mason. He is nearly 4 months old and also has CDH. He is in the same nursery as Clay, so they've gotten to be good buddies ;) They've been trying to get Mason home by Christmas but infections are setting him back. Pray his little body will get stronger and heal so he can go home where he belongs. He's a sweet lil guy and so tough, just like Clay! His momma's sweet too and I admire her strength for all they've been through. This CDH thing is no walk in the park!
There are lots of sick babies in the NICU..I think I heard a nurse say there are 64 babies in there right now, so say a prayer for all of them and their families. And be thankful for the healthy is so easy to take good health for granted.

Thank you all again for your love and support..I just can't say it enough!!!!! Peace and love and blessings to all of y'all!!

Saturday, December 10, 2011

Recovery Time

Clay has been doing well since his tracheostomy on Tuesday! The goal for the week has been to keep him calm and comfortable so his new trach site can heal nicely.

Eric and I haven't been able to hold him since surgery, so that's been kinda hard. We've been told the pediatric surgeons will wait a week until they do his first trach change, so I'm expecting that to happen come Tuesday. After that, I hope we can start to enjoy this thing a little more!

The nurses warned us that the first week of recovery would be rough--and it does seem to be sort of a set back right now. He was put back on a morphine drip through his IV to help with post-op pain. Now, they're trying to wean him from it a little everyday. We've already weaned him off of this before, so we know what to expect. It's pitiful to watch our little man go through withdraws as his body adjusts to going without the pain med..he gets quite fussy and will throw himself some fits. Poor little guy will cry so hard he turns purple, then he'll break out in a cold sweat and sometimes get the shakes. I feel so bad seeing him like this and not being able to pick him up and comfort him. But it won't be long! I know one thing, Clayton Cash is a tough cookie and I'm so proud of him.

Another small 'set back' has been getting him back up to his full feed amount of 30mL/hr. The day after surgery, the docs put him back on 5mL/hr to slowly wake up his gut after being so sedated. They've been able to get back up to 20mL/hr now, so we're getting close! Once he's tolerating full feeds again, maybe we can get goin' on trying to feed him orally.

He's sure been taking his pacifier way better than I expected! I'm going to try to post a cute video of him sucking like a champ:) I hope this is a good sign that he'll do well when it comes time for him to try the bottle.

I really do think Clay will be a much happier baby after this recovery period. I'm eager to get through it too! Keep us in your prayers..we appreciate them so SO much!!

Here's the video: (Notice the sweet music in the background...Auntie Chels hooked him up with some awesome tunes, and he loves them :)

Tuesday, December 6, 2011

Happy Trach Day, Baby Clay!

Today was yet another big day for our sweet baby.  He was wheeled off to the operating room this morning to have a tracheostomy.  I think I was more anxious for this surgery than his repair surgery—even though a tracheostomy is way more routine!  The surgery took about an hour & the pediatric surgeon said everything went very well! I’m so thankful for our awesome surgeon—we really feel like Clay’s in the best of hands with him.

I’m not gonna lie, it was kind of scary seeing Clay after surgery.  The ventilator tubes entering into his neck is just so unnatural. Then again, so is everything else we’ve been through thus far.  I know we’ll get used to this scene with time, just as we have everything else.  Clay was coming off his anesthesia when we first got to see him, and he seemed to snap out of it pretty quick.  Our little man is quite the wildcat! He kicks his little legs & swats his arms just like he’s throwing punches...haha! But seeing how fragile his new airway site is, they don’t want him to pull out his tubes or anything, so they’re keeping him comfortable & calm with morphine and  versed.  Little man’s gotta be feisty to have made it through all he’s been through! 

It is sooooooo good to see Clay’s entire face! His little cheeks are in for it...momma’s gonna be eatin’ them up!  I believe I spotted a dimple in one of them earlier ; ) He is such a handsome baby. I am so proud.

One thing I can’t believe I forgot to mention in yesterday’s blog:  this tracheostomy is one step closer to HOME!!!!!!   We can get a home ventilator & I can learn trach care and be Clay’s nurse in our own home!  Considering things go well, it may be possible within a month or so?!  Regardless of when we get to go, I am just thankful ‘home’ is on the radar at all.  

Again, thank you all for standing by us today! Your prayers & good vibes have helped get us over yet another hurdle. 

Monday, December 5, 2011

Happy 6 week birthday, Clayton Cash!! Another big day tomorrow!

Today our baby boy is 6 weeks old, can you believe it?! I'm so proud of our little stinker & I just know he's gonna do big things one day--he already has!!

Tomorrow is another big big day for Clay!! He’s scheduled to go into the operating room tomorrow morning to have a tracheostomy.  Please say a prayer everything goes smoothly during this operation!! Because his run without the ventilator didn’t go so well last Monday, the doc thinks he’ll be on the vent for another 3-6 months.  Obviously, being intubated orally for that long is not what we want at all. Once Clay has a trach, we will be able to start working on feeding, it will be easier to get Clay’s breathing muscles into shape & it will be soooooo much easier to get him in & out of the bed! Of course, it is another surgery and we are quite anxious about it. The nurses have told us to expect about a week of recovery time.  

After this first week or so, I think Clay will be much happier with his trach.  Poor little guy gags and coughs with that tube down his throat and he’s so active & getting so much stronger, he has nearly extubated himself a couple of times.  Also, it will be so much easier for me & Eric to get to hold him. It takes the help of 2 or 3 people right now, so I’m excited for this! I’m also eager that Clay will be able to start working on regaining his sucking & swallowing reflexes.  Clay has been intubated since birth & has not had to use these reflexes, so we’re told it will take a long time until he picks it up—if he does at all. But I am hopeful that he’ll surprise us.  It would be so awesome to nurse my baby boy one day!  But that’s just another bridge to cross when the day comes. 

Right now, just pray tomorrow goes smoothly for all of us & I'll try to update soon!!

Sunday, December 4, 2011

The past 5 weeks, in a (very long & elaborate) nutshell:

In a way, the past 5 weeks seem like 5 years, but in a way they have absolutely flown by! We have made incredible progress since Day 1. Clay was born on Monday, October 24th. I will never forget that morning—I left our home before dawn. The night air was so clear & the thin crescent moon shown so bright.  I saw a shooting star flash across the sky before I got in the car. Although I wasn’t expecting to give birth that day, I hoped that star was a good omen. By 3 o’clock that afternoon I was in the operating room awaiting the arrival of our Clayton Cash. A C-section was not my choice birthing option but it was what doctors recommended would be safer for baby & me. With Eric right by my side, we listened as Clay made a tiny squeak when he took his first breath. I could feel the weight of him on my thighs as the doctors lay him there to cut the umbilical cord—this is the closest I would get to holding my baby for 26 days.  Less than 24 hours later, Clay was put on ECMO, a heart & lung bypass machine.  The doctors gave Clay of 10-20% chance of survival without it & a 50% chance of survival with it.

After a successful transition onto the life support machine, the doctors planned to do the hernia repair surgery the next day.  We were told that our baby’s aortic arch in his heart was narrow, which raised concerns for the surgery.  They placed Clay on prostaglandins to keep his ductus arteriosus open to relieve possible stress. Our pediatric surgeon also warned us that if they got in during surgery & could see no left lung development, they would forfeit their efforts and there would be nothing else they could do for our baby.  Thank the Good Lord, this wasn’t the case! During surgery, the doctors put Clay’s colon, small intestines, spleen & part of his liver back into place and they patched the hole in his diaphragm muscle with something made from pig intestines. After surgery, they said they could see a ‘nub’ of his left lung. 

For the next 6 days Clay remained on the ECMO machine, buying time for his lungs to develop & body to heal. The day after surgery, the doctors put a feeding tube into Clay’s stomach & began continuously feeding Clay 1mL/hour of my breast milk. As he proved to handle the small amount of milk, they gradually upped his feeds.  I believe 10mL/hour was the most he received while on ECMO.  At one point I think Eric & I counted at least 13 different medicines hooked up to Clay’s IV, not to mention the numerous blood transfusions and extra platelets given often. He would have a head ultra-sound done every day to check for bleeding in his brain. Heart ECHOs and chest x-rays were also done daily. Blood gas tests were done every 2 hours to check oxygen levels, carbon dioxide levels, electrolyte levels, etc.  Spending time next to Clay’s bedside was stressful to say the least. Eric & I would talk to him and touch his little feet and watch his toes wiggle in response. Or we would place our finger in his hand and feel his little grip. Those small movements were what got us through!

Finally, on Monday, October 31st, the doctors began working Clay’s lungs. They slowly turned down the flow of the ECMO machine & turned up the ventilator. He was handling the slow transition well, so the doctor decided to do a ‘trial off’ of the ECMO machine the following day.  That night, a good friend created a “Breathing for Baby Clay” Facebook event & over 500 people declared to breathe for our baby on that fateful day. No one will ever know how much that meant to us. Lying in the hospital sleep room with our sick little baby across the hall, all I could do was cry as we watched our Facebook newsfeed light up with people rallying together for us & Baby Clay.

The following day was such a success.  Clay proved to handle the ‘trial off’ very well & was decannulated that afternoon.  After 8 days on ECMO, our baby was off the life-support machine & doing the work on his own! Praise God!  Thinking back, I am amazed at the strength Eric & I mustered up to get through these terrifying days—but I know without a doubt we were not alone.  Our awesome God was with us every step of the way, along with the most amazing family & friends in the world.

The next day after coming off ECMO, we were moved back into the NICU, in a nursery with roommates!  This environment was so much better than his previous one—I was able to pull up a chair and stay a while in the new room.  I finally felt like I was able to bond with my little man and he was being so much more alert—I seen both his little eyes wide open for the first time!  I also changed my first dirty diaper! This was such a great feeling, to feel like I was able to care for my baby. 

At 10 days old, Clay had his chest tube removed, which was draining gunk from his repair site.  He also had his catheter removed—which meant lots more dirty diapers for me to change!! J

After first coming off of ECMO, Clay’s left lung was still very underdeveloped.   He was retaining a lot of fluid and that fluid was filling the empty space where the lung was supposed to be—making his left ‘nub’ collapse.  While this obviously wasn’t good, his vitals remained relatively stable & he was even able to handle his ventilator rate being weaned from 45 to 40—which meant he was doing all the work with that right lung & was doing it well! Still, we prayed & prayed that his left lung would open up and expand like a balloon.  I would visualize this in my head all day & all night. 

We could tell how uncomfortable the fluid retention made Clay.  He did not like lying on his back at all—he had to be lying right side up or else his oxygen saturation levels would drop.  He just needed more space for that right lung to do the work.  The doctors gave Clay a diuretic to help him urinate off all the extra fluid.  This helped enormously.  Once most of the fluid was gone, his left lung finally had room to do work.  We got reports from both the doctor & the pediatric surgeon that his left lung had expanded more than they ever thought it would—Thank God! 

After Clay was off dopamine (blood pressure med) the docs started weaning on the nitric oxide.  The NO rate was set on 20 and over a period of 3 or 4 days, they had it cut to 8.  Over the next couple of weeks, the docs also increased Clay’s feedings from 10 to 12, then up to 14, 16, 18…until he reached his full feed amount of 30mL/hour of continuous breast milk.  I am so SO glad Clay is able to get my milk.  Pumping every 3-4 hours, even in the middle of the night, can get old but I know that it is the best thing for Clay nutritiously.  It’s also good for me emotionally because I know I am contributing to my baby’s health & nutrition—and the doc says that is the most important thing for Clay, so his body can grow & develop & strengthen.  Clay has done exceptionally well with his feedings—CDH babies usually have an awful time with reflux.  Clay does spit up every once in a while, but for the most part he does great!

So, for the next couple of weeks, docs continued to wean on the nitric oxide, the morphine & versed (sedatives) & his ventilator settings.  Next, we tackled the milrinone, which is another med that was helping with pulmonary hypertension. He did excellent with all of these transitions!  The docs also took Clay off of his prostaglandins with hopes that his ductus arteriosus would close—once the duct was closed, we would know how his body would respond to his narrow aortic arch and we could tell more accurately how the pressures in his heart would be.  Doc said he was afraid this could be ‘life threatening’ to Clay.  They also didn’t think the duct would close on its own—that it would need to be closed surgically. ECHOs were done every two or three days to monitor possible changes.  Changes did happen: the large PDA (patent ductus arteriosus) went to a moderate PDA, then to a SMALL PDA!! And Clay was not noticing these changes at all! His vitals remained stable, his blood gases remained stable, his heart was not noticing the narrow aortic arch & the pressures were fine! While his PDA has yet to close completely, the doctor said he was no longer concerned with his heart after these ECHO results...nothing short of a miracle, I believe J

At 26 days old, Eric & I finally got to hold our little bundle of joy!! What a sweet, sweet day this was! Feeling my baby in my arms was indescribable.  We are so blessed to call this special baby our child and we thank God so much for his blessings!

After weeks of weanings & transitions, Clay was finally off ALL of his IV drips (remember there were once 13!) and his ventilator settings were getting minimal. We knew things were getting down to the nitty gritty.  The doctor met with us to discuss his plan: on Monday, November 28th, he wanted to try him off the ventilator & on CPAP…BIG big day!! The fact that this was even a possibility at 5 weeks old, after all he’s been through, was truly a miraculous to us…and quite surprising to the doctors too. 

So, this past Monday they extubated Clay and put him on CPAP (continuous partial airway pressure).  Eric & I were able to witness this transition. For just a minute, Clay was totally off everything and it was so awesome to see!  But once they got his CPAP mask on, he was not happy about it and I don’t blame him at all. The cannulas going up his nose, continuously blowing air into his lungs would have to be uncomfortable!  It was obvious right away that Clay missed the ventilator. His little body was working so hard to move air in and out of his lungs.  A blood gas was taken an hour after being put on CPAP and his CO2 levels were high at 74.  Still, they left him on for a couple more hours hoping he’d level out. But another blood gas was taken and his CO2 levels were even higher at 89. CO2 levels this high could make a baby really sick, so there was no other choice but to reintubate and put him back on the ventilator.  While his lungs have expanded so much, his diaphragm muscle just wasn’t strong enough to move air in and out of his lungs like it should.  Considering the left side of his diaphragm is nearly all patch, it’s no wonder he was having a hard time. Until his breathing muscles grow & strengthen, he’ll remain on the ventilator.

After this unsuccessful trial off the ventilator, the doctor & surgeons began to talk tracheostomy.  And that is where we are today.  Ready to start the next steps, we are so very thankful to God for the continued progress our baby has made.  And we are so very thankful for all the prayers and concerns and emotional, financial & spiritual support you all have shown us…it means more to us than you all will EVER know!  I hope to share updates on Baby Clay through this blog regularly, so I hope you’ll join us as we continue on this CDH journey! Love to all!!