Keep the prayers a coming...

Well, we may not have as bad of a situation of our hands.  Since the chylothorax was discovered early and we switched treatment up so quickly, we may have only lost one day in our timeframe.  Yes, I know that you can't set timeframes when it comes to babies, but I'm a nurse and time management is what I have to do. 


I pray to YOU oh sweet LORD, please let this be a teenie tiny road bump.  I want my baby at home, so I can give him all the kisses he needs. I know you have your plan, but I pray that Cason doesn't hurt and comes home soon. AMEN.

Here's our little buddy sleeping peacfully last night:

and watching his mobile this morning:

Just when we thought all was well....

First let me start by saying, the surgery went well.  Cason is such a little trooper.  His 1st post-op day was rough because he was hungry & hurting. After getting his feeds started and finding the right pain regimen for him, he calmed down and spent his night resting.  UNTIL.....

In the past hour, the nurse & I discovered that Cason's chest tubes are putting out a milky looking substance instead of the normal blood-like stuff. This means he has Chylothorax which is when the lymphatic system is unable to hold the fat in their vessels and it starts leaking out around the heart & lungs.  He had this after the first surgery as well.  They have already stopped his normal formula and have started a special "fat-free" formula that Cason will have to be on for 6 weeks AFTER the chylus stops. 

What does this mean for us, a longer hospital stay that the original 1-week plan.  Hopefully, we caught it early enough that he doesn't have to stay too long.  Will keep you posted.

It's been while....Big surgery day today!



Well, lots has happened since I last wrote.  We have been busy beyond words and writing anything has gone to the wayside.  Here is a very brief recap of the past 5 months:

Cason's meningitis caused another condition called hydrocephalus for which he had another surgery to place a VP shunt on March 6th.  Luckily, Cason was allowed to come home on March 09, but he had to continue to receive IV antibiotics and home health visits.  Since Cason had not been fed by mouth yet, he was on a continuous feeding pump around the clock.  The pump attached to an IV pole that we dragged throughout the house.  In mid-March, Cason was finished with his antibiotics, so we had a mini-surgery to remove the Broviac catheter and change his G-tube to a MicKey button. We've had another couple of MRIs which show that his head looks great.  Also, we checked his swallowing abilities a few times because of his vomiting and his lack of desire for oral intake. Thankfully much of that has resolved and we are now feeding him some of his bottle and even a little rice ceral by mouth.  We made two trips to the ER which one led to a few night stay. In June, Cason had his Cardiac Catheterizaion which show that his heart function is great, but that there is some narrowing of his aorta.  Cason may need a balloon catheterization to fix this in the next 6 month.  As for now, Cason just underwent his second open heart surgery called the Glenn.



The a picture of a normal heart, a HLHS heart, and of the 3 heart procedures can be viewed below:



Normal Heart VS HLHS heart



Norwood with Sano shunt
1st surgery



Glenn Procedure
2nd surgery

The Glenn & Fontan procudures
2nd & 3rd surgeries



 Cason is doing good at the moment. He is still really sedated to give his body a chance to get used to the new blood flow and the increase in oxygen in his blood.  I will be updating this blog this week while we are in the hospital, so more posts and pictures to come.  Thank you for all your love, support, and prayers. 

Timelines, timelines, timelines!

Timelines....I'm soooooooo over timelines.  Cason has surpassed all the normal timelines.  Apparently, he follows his own timeline...and I wish it weren't so S...L....O.......W.....!!!  My littlest prince will be six weeks old on Friday.  This has been a rough time for him and for us.  Although this roller coaster ride will forever be etched into our minds, we are comforted that Cason will not remember ANY of what he has been through during his first 6 weeks of life. 

During this time, I haven't been good at keeping up with this blog.  Thankfully, most people are able to learn the news by reading my facebook page.  Below is a recap of everything Cason aka My Little Caseface has been through.  Please click on the links if you don't understand the terms.

On January 11th, my little guy had the Sano Norwood procedure which is the first of his 3 expected open heart surgeries. As his surgeon says, "Cason made the Norwood look easy."  Following the surgery, he remained on the breathing tube, had an expected chest tube, and had his chest left open to allow the swelling in his heart to subside before closing the sternum.  The next day, the cardiologist said Cason is doing "fantastic", and the nurse said "I can't express how well this little guy is doing."


For several days, he was smooth sailing.  His chest was closed up 5 days following the surgery.  We were warned that there are many ups & downs on the road to recovery for these babies, and BOY were they telling the truth!!!!  They attempted to extubate (remove breathing tube) on the 18th, but he just wasn't ready.  By the 20th, Cason had to receive a chest tube because he had fluid building up (pleural effusion) around his left lungs.  Two days later, the doctors place another chest tube on the right side. Another 2 days later, we received a letter from the Texas Department of Health stating that Cason may have a metabolic condition where he can't digest some fats. We were wondering if this little guy was going to catch a break.  This test hasn't been repeated for accuracy , and it may be inaccurate due to some treatments Cason has been receiving.  Let's hope so!!

Finally, things seemed to be going in the right direction. A special monitor in his heart was removed on January 26th, and I got to hold him for the first time since the surgery.  Then a few days later his breathing tube was removed, followed by his chest tubes.  Formula feeds were started as well.  We seemed to be smooth sailing at this point. BUT, Cason came down with some serious infections.  He was diagnosed with pneumonia & sepsis (blood infection).  We were devastated.  Next, we noticed he having seizures, and our worst fears were confirmed by a lumbar puncture (spinal tap)....He has meningitis!  Basically, Cason has a full body infection and the only part of him that was doing good is his heart (the part of him broken in the first place).  An MRI discovered that he had some bleeding in his brain and infarcts.  So far, he doesn't appear to have any complications from this.


On Friday February 10th, Cason went back into surgery to have several procedures.  He had the Nissen Fundoplication to fix his reflux, a G-tube  inserted to help him take in food, a Broviac catheter (long-term use IV line) to get his weeks of antibiotic therapy, a circumcision, and another lumbar puncture.  Thankfully, his lumbar puncture came back negative meaning the antibiotics are working.  Now, he has 4 weeks of antibiotic therapy starting from the 10th.  He seems to be recovering pretty well from the surgeries, but he did have to get another chest tube due to another pleural effusion.  Today, he is looking great & sitting up in a bouncy chair. We hoping are hoping to get his breathing tube out this week.  As for when he will go home.....I don't know for sure.  They are working on it because they're setting up home health care, feeding pumps, etc.


The rest of the Howey clan are doing pretty well....aside from a few little sicknesses.  We closed & moved into our new house on the 27th of January.  Thankfully, my parents and several AMAZING friends came by to help with some of the unpacking.  There's still some to do since I spend much of my time up at the hospital, but all the major stuff is done, done, done!!  Pictures of the new house will come at a later time since I am soooo preoccupied with my little men.  Coyt has been doing great at using the potty to pee, but #2 is still an issue.  Hopefully, he won't digress once Cason comes home.  He really enjoyed his Valentine's party at daycare yesterday and is looking forward to his birthday party over the weekend.  Again, thank you to some amazing friends that have done all the party planning for me! Here's a picture of my little Valentine, Coytman:

What a roller coaster ride!!

We have been busy since I last wrote.  As I explained in my last post, I was admitted into the hospital on Monday, January 2nd for preeclampsia and to allow our little man to bake a little longer.  On Thursday the 5th, I had a sono that estimated that Cason is around 7lbs 15oz.  There were 3 other mothers baking their babies with the same type of heart condition.  A team of doctors got together to make a game plan as to which mother to induce on which day so that they were not bombarded with all the babies at the same time.  I was chosen first not because of Cason's condition, but because my health was compromised. 


Friday, January 06 was Cason's big arrival day!!!  At 6AM, they started the induction medications and started giving me Magnesium as well.  The purpose of the Magnesium was to prevent mommy from having any seizures.  The delivery almost mimicked Coyt's delivery to a T.  With Coyt, I was also induced starting at 6AM and he was born at 2:35PM.  Cason arrived at 2:33 PM!!  In both deliveries, I dilated from a 4 to a 10 in about an hour.  Also in both deliveries, the "pushing" part lasted less than 20 minutes.  I'm not good at being pregnant, but am great at having the baby.  They allowed me to hold Cason for about 3 minutes before whisking him away to the NICU.  Those 3 minutes were some of the happiest of my life!

At this time, I was informed that I am to remain in Labor & Delivery for the next 24 hours with no food or drink and no way to see my newborn son....I was devastated.  The Magnesium makes you feel like you have the flu.  Those were 24 of the most miserable hours ever.  Thankfully, Sean was able to give me updates on my son.  Cason weighed 8lbs1oz and was doing well at first.  Later that evening, he had to be placed on a ventilator because his breathing & blood levels were not as desired, but they removed that tube within hours. 

Right at the end of my 24 hours of misery, the neonatologist arrived in my room to let me know that he was going to give Cason a paralytic (to keep him from moving) and place him on a ventilator to help him breath as his levels were not doing good at all.  Since I hadn't seen Cason in over 24 hours, he was giving me 30 minutes to get to the NICU.  I hadn't been unhooked from all my stuff (IV, foley, pulse ox).  Thankfully, my nurse had me down there in about 5 minutes.  I got to kiss on him for a few minutes before they placed him in a medically induced coma.

Finally, I was discharged on Monday the 9th.  It was so sad to leave the hospital without my baby, but I know that it was for the best.  They sent me home with some blood pressure medications because I still have the potential for high blood pressures and seizures.  Later that night, I was informed that they stopped the drug that caused the paralysis, so I made it back to the hospital with my mother-in-law to see his eyes opening.

This morning, I got to hold my baby for the first time since birth.  He is in surgery now....

Sorry this is a really rough update of the last week, but I am quite nervous right now.  Thank you for all the prayers and support.  Please keep the prayers coming!!

Waiting Game

I write this from my hospital bed at Medical City Dallas. 

Coyt visiting Mommy at the hospital.

Last Friday (12/30), I was told by my OB & perinatologist that I would be induced today.  My headaches were getting unbearable and my blood pressure kept jumping up.  We spent much of the weekend making arrangements for Coyt, buying needed stuff from Babies R Us and Target, and getting prepared for me to be in the hospital for a couple of days.  On Monday, I received a call from the office of the delivering OB (different from my OB) saying that they don't know why I am being induced and that I needed to come into their office immediately.  I hopped in my Tahoe and made it to the hospital in less than an hour.  The doctor decided that instead of inducing me at 37 weeks that I will have to be admitted into the hospital at this time in hopes that I can keep Cason in for longer.  Now here I am sitting in my hospital bed, waiting for little man to come while trying to manage my elevated blood pressure and constant headaches.  I know this is all best for Cason, but I hate, hate, hate being away from my family.  Thank you for all your love and support!  We will keep you updated on everything.

 

Scared

We've a scary past few days!  Here's a recap on all that happened:

Over the weekend, I was having elevated blood pressure readings, difficulty breathing, and frequent/constant headaches.  On Sunday, I checked my blood pressure prior to working a 12-hr shift and it read 133/103.  During the shift, one of my friends checked my BP & it was normal.  By the time I got home, it was 155/100.  I knew I had an appointment the next morning, so I didn't head to the hospital at this time.  At my appointment on Monday, my BP was 129/96 and there was protein in my urine.  My doctor was concerned and sent me to Medical City to have a full preeclampsia workup.  Preeclampsia is when a pregnant woman develops high bp and protein in the urine after the 20th week (late 2nd or 3rd trimester) of pregnancy.  You can read up on it at http://www.pennmedicine.org/health_info/pregnancy/000200.htm.

At the hospital on Monday, my BPs were back to normal, but the OB hospitalist was really concerned about my brisk reflexes & headaches not relieved with Tylenol.  She threatened to deliver Cason that night if my headaches didn't resolve.  I started a 24-hr urine collection to check how much protein I put out in a whole day.  Almost all of my BPs were good on Tuesday and my urine test came back ok, so I was sent home on modified bed rest that evening.  This means I can do little things like go to the mailbox, take short car rides, etc, but nothing that requires exertion. Mostly, I hang out on the couch.

Last night, I feared that Cason was trying to come into this world early because I had the absolute worst Braxton Hicks contractions to date.  This continued for about 2 hours, but thankfully my prayers were heard.  If he had come last night, we wouldn't be able to have surgery for at least 2 more weeks and would probably have to keep him going with lots of breathing assistance.  More complications added to his already complicated young life. We really need to keep this kiddo in place for at least 4 more weeks to give him the best chance during his open heart surgery. 

My family and friends have been and are continuing to be amazing throughout all of this.  My wonderful parents have prepared a bunch of our favorite meals & froze them, so that all we have to do is pop them in the oven or microwave.  Brian, my bro, has been so helpful with Coyt.  My dear friend, Amy, is organizing a support group to help us out where needed.  I have received so many wonderful Facebook comments, emails, texts, & phone calls.  Your continued prayers are the greatest gift of all.  Thank you each and every one of you!!