Friday, January 30, 2015

Gig 'em, Sam!

Sam, you are famous!  The Aggie Network has been running a social media promotion on Facebook, Twitter, and Instagram with the hashtag #raisinemright.  Parents and families submit pictures of their future Aggies in hopes that the social media team will share their photo.  A couple weeks ago, Brad and Courtney gave us an Aggie hat for Sam, and I snapped a super cute picture of him wearing it.

Stephen suggested I email the Aggie Network, and I did.  And then about a week ago, my friend, Stephanie, who works for the Association of Former Students, sent me a Facebook message and suggested I submit the picture.  I got another Facebook message from her earlier today that the social media team had selected Sam's picture to share for #raisinemright!  I love being an Aggie!  I have known this is true for weeks and weeks, but as I read through all the comments on his picture, I was just reminded that so many people are praying for my baby.  My baby!  Sam, I can't wait to share with you one day how many people know your story, love you so much, and have prayed for you.  You are loved, sweet boy!

Here are the links:

Facebook (
Twitter ( and 
Instagram (

Thursday, January 22, 2015

Happy Four Months, Sam!

Today, Sam, you are four months old.  You are smiley, bright-eyed, and quite a celebrity around here.  The nurses fawn over you and tell us how much trouble we'll be in one day.  You have long beautiful eyelashes, and they literally curl into your eyebrows.

Your hair is still out of control, and sometimes the nurses style it in a Mohawk. 

You seem so big to me!  You weigh 15 pounds 3 ounces, and I'm not sure how long you are, but it has to be at least six feet.  You wear 6 month size clothes and size 2 diapers. We can hardly hold all of you in our laps anymore.  

You love to rock, read books, FaceTime with Emory and Harper, watch mobiles, and you will take a pacifier now

It's kind of hard to say what's normal for your sleep right now because it changes any time there is a change in your care, but typically you sleep well at night and take two or three naps during the day.

Recently you started busting out of the swaddle, so you sleep with your hands up by your face now. 

I don't even know what else to say about you, Sam. I am so proud of you, and I love you so much that my heart hurts. You are so loved. 

Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.  Joshua 1:9

Monday, January 19, 2015

Day 46 Update

Sam had a good night, he slept better than he did the night before, and he woke up around 8:00. He was happy and awake for a couple hours, and then took a good nap this afternoon. He had gotten on a pretty good awake/nap schedule for about a week before the incident Thursday. Since then, he's either been very sleepy or very alert with no happy medium.  He has had some withdrawal symptoms yesterday and today--he has been a little clammy, fussy/agitated, retching, etc. The doctors are trying to wean him off the methadone at an appropriate rate so he doesn't have withdrawal symptoms. We haven't heard today if they will start trophic feeds tomorrow. Mondays seem to be big surgery days, so the doctors are understandably occupied with post-op kids. It was a quiet day overall for Sam. We rocked for a while, and he was happy and alert the entire time.  His hair looks even crazier in pictures than it does in person. 

Dr. Mendeloff, the surgeon, stopped by for a minute to check on Sam. He is such a genuinely caring man.  

Our friends Jamye and Royce brought a gift basket for us, which included a ball for Sam. He has been reaching for it some and holding it. It's so fun to see him interacting!

We met with the CEO of the children's hospital and the director of nursing today primarily about the methadone incident. We met with the patient advocacy director and children's hospital director last Friday, also. I skirt away from conflict if at all possible, so all of this makes me very uncomfortable. Janie, the nurse manager for the CHSU, said she is working on a care team for Sam. A care team is a regular team of nurses that will be the only ones who care for Sam. Since he has had a group of issues, instead of just the heart issue like they normally see in the CHSU, it's even more helpful to have the same nurses over and over so they can tell if any of his behavior/symptoms/whatever are changing, improving, or related to any of his issues. Sam will also remain on the third floor until he is discharged instead of moving to the stepdown units. I would hate for anyone to be in our place, but if your child(ren) need care for CHDs, this is the place to be. 

I love author Lysa TerKeurst. I follow her on Facebook, and I feel like so so many of her posts are written for me. This one was especially poignant for me today:

Sunday, January 18, 2015

Day 45 Update

Sam is still making very slow progress, even with an unnecessary bump in the road this week. A general peds surgeon who didn't do Sam's GI surgery visited with us yesterday and said it's going to take longer for Sam to heal than a baby with a normally functioning heart. Also, Sam has been on methadone for a week, and it inhibits gut motility. 

I'm just going to sprinkle pictures throughout. 

This has been a really really hard week for me. Stephen went back to work Monday. I cannot express how incredibly thankful I am to Stephen's boss for telling him to take the amount of time off that he has. The five weeks Stephen was up here with us is the longest amount of time he and I have ever spent together. I didn't realize how much I depended on Stephen to carry me through all of this until he was gone. Also, I'm just lonely. Sam and I are rarely alone in his room, what with all of the nurses and doctors in and out, but being here is very isolating. 

I was looking at Sam one day this week when it just hit me how sick he looks. He has his OHS scar, the incision from his GI surgery, stoma, colostomy bag, NG tube, broviac line, plus all the uninvasive lines that monitor his stats. He just looks like a sick baby. Well, he looks great, actually. His eyes are perky, his color is great, he smiles and coos, and he has been pretty content this week. But he has a lot of stuff that shows where he has been and what he's recovering from right now.   And then Thursday happened.  Sam stopped breathing as a result of an incorrect methadone dose. The medical team revived him pretty quickly, but it was just an incredibly stressful afternoon because they didn't know immediately why he wasn't breathing, and then afterward I was worried.  We're doing a lot of waiting, and it's just hard. Sam is calling all the shots here. We're waiting for his body to be ready to process feeds normally again. 

Hopefully, we'll get to go home for a few weeks, but then we'll be back for Sam to have the stoma reversed. He'll have to recover from that, so who knows how long it will be before we're home for good for a while. I have never been a highly anxious person, but I'm feeling it these days. I feel guilty no matter where I am because I'm never with all of my children, where I'm supposed to be. I know that soon I'll be sitting in the waiting room while Sam is in surgery again. My mama heart is weary. There isn't anything that anyone can say right now that makes me feel any better. I just want Sam to be better and for the five of us to be together again. 

We had lunch today and visited with some friends of ours whose baby was born at at 26 weeks. While their journey is much different than ours, we were all able to just kind of air out our frustrations about what a crappy place this is to be in as a parent.  It's nice to talk to families who can relate. 

Stephen and I have been talking about trying to find the silver lining in all of this. One thing that's really pretty nice is that Sam is usually pretty easily calmed, and I have plenty of time with no other obligations to sit and rock him and hold him while he sleeps. 
When the girls were babies, I never felt like holding them while they slept was a good use of my time because there was so much else I needed to be doing. 

I want to blog more regularly, but I also don't want to share a lot of what is going on. I don't like the spotlight or pity, but I know that comes with our situation. Also, there are lots of days when I don't share anything on Facebook because either not much has happened or I just don't want to. Sometimes it's just hard to put into words what Sam is going through. 

But he's cute. 

Wednesday, January 14, 2015

Guest Post #1- Being Thankful

This is Stephen writing and I thought I'd take a crack at writing my thoughts on our blog. 

Today marks day 42 of Sam's hospital stay here at Medical City Children's Hospital. Through his stay in the hospital, Sam has had a heart catheterization, open heart surgery, weeks of "gut rest", an exploratory laparotomy which lead to a bowel resection, a temporary stoma and colostomy bag, more "gut rest", multiple IVs, a PICC line, a Broviac line, countless monitors and lots of medication. He still has a lot more medication, time and one more surgery to put his intestines back together. All of this before he turns 4 months the old.  Danielle and I have watched him hurt, be sedated and smile, all in the same day. Our hearts break for our child and for all of the pain he is going through. We also have faith that God has an amazing plan for this little guy and that He will use this time as a life altering experience for all of us. 

I don't mean to sound like I am complaining. I know so many families have things far worse and that we are the lucky ones. We will get to take our baby home again one day. Though he will probably have several scary medical moments over his lifetime, we have faith that he will be "okay" and that he will be a strong little fighter forever. Look out world, there's a tough little boy on his way. 

I've learned a lot about gratitude throughout this experience. I've learned that there are a lot of kind and gracious people in the world. My most sincere and heartfelt thank you goes out to everyone who has prayed, thought about us, called, texted, emailed, left Facebook messages, liked a post, brought food, donated money through the Go Fund Me account my sister set up, visited, kept our daughters, visited us and so much more. I cannot express the gratitude that I have for you and for your selflessness. It is very hard to be on the receiving end of help. It's also very hard to feel like you can't do anything for your child. I pray that no one ever has to go through this type of thing. It's so hard to understand unless you've gone through it yourself. 

Thank you to everyone for the love, support and prayers. It means more than you will ever know. 


Thursday, January 8, 2015

Sam's Second Surgery

I have done a terrible job keeping everyone updated since we got back to the hospital.

On Sunday afternoon, the general pediatric surgeon (the one who has followed Sam's case since he started having possible GI issues weeks ago) came by again after more X-Rays and an ultrasound didn't show anything to request a CT with contrast for Monday morning when the pediatric radiology folks were here. The attending cardi docs didn't want to wait that long, so they ordered a CT with contrast for that same day, Sunday. Well, Sam couldn't keep much of anything down at that point, including the contrast, but the CT finally showed what they had suspected for weeks--there was fluid in his abdomen, but they couldn't tell if it was inside our outside his bowel. The location determined his course of treatment. We expected to have a plan in place early Monday morning, but the interventional radiologists couldn't confirm the fluid's location based on the results of that CT, so they ordered another one. The CT from Monday showed multiple areas of fluid and air, which means there was a perforation in his bowel at some point, and his situation was much more serious than they expected.  

On Monday, the attending cardi doctors, NPs, and nurses were all over the place trying to get some answers about Sam's case. We could hear them talking to each other on the floor or on the phone about Sam, but no one really gave us a lot of information until about 4:30 P.M. when we were told they were prepping an O.R. and getting a team together for him to go to surgery that night. A surgeon we hadn't met before (though we like him A LOT better than the one we had been talking to for weeks) came to talk to us about Sam's surgery. He suspected Sam's condition would be pretty simple based on the fact that Sam was acting uncomfortable but not nearly as sick as babies do when their condition is much worse. He said he should either be able to fix the problem pretty quickly or assess the problem and make a plan for a different surgery later to fix it if it was more complicated. 

They took Sam back to the O.R. at 5:30 P.M. Twice now, we have followed Sam and a team of doctors to the O.R. It's awful! That's just something parents shouldn't have to do! I need to grieve privately, but that's not possible here.  

An O.R. nurse called later to updated us.  She said Sam was asleep and that they were about to start placing a different kind of central line called a broviac line. After that, we got text updates throughout Sam's surgery. The first one said, "Your loved one is off to sleep, and the procedure has started." Ah, technology! And then the texts just said "Everything is going well with the procedure." A little after 8:00 P.M. I got a text that said they were finishing up and the doctor would be out to talk to us shortly. I expected the surgery to take much longer than that, so right away I was worried. 

The surgeon explained that Sam's condition was more complicated than he originally expected. Sam had an ischemic stricture with perforation and an abscess. The stricture was essentially a part of the bowel that was damaged somehow, and once it started healing, it shrunk, much like how a scar heals. The surgeon doesn't know why this happened, but they sent samples to pathology to get more info. The surgeon removed the part of his intestine that was damaged, and Sam has a colostomy bag that will be in place for 6-8 weeks. They'll do another surgery to repair that and close him up. I think Stephen and I were shocked at how sick Sam really was, especially since he didn't act like it. Yes, there was obviously something wrong, but the surgeon said most babies are SICK when they have the kind of damage Sam had.

The next morning, Tuesday around 11:00, Sam started to wake on his own, so he was extubated.  Once the anesthesia wore off, he acted like he was in a lot of pain. The surgeon came by that afternoon to check on Sam, and he acted completely surprised by how good Sam looked. He said most babies are intubated for a week after that kind of surgery. I was encouraged because I thought Sam looked terrible.  

Well, the rest of the day and night, Sam was miserable.  They gave him several different pain medicines, but nothing helped for very long.  At rounds yesterday, I asked what else could be done.  The nurse gave him another kind of medicine, which helped for a little while.  The NP thought that they just weren't staying on top of his pain well enough, so they started giving pain medicines as often as was safe, instead of waiting until we requested it.  Last night around 7:00 P.M., they started a constant drip of some pain medicine, and he has acted much more comfortable since then.  He slept much better last night, and today he has been alert and happy. 

Sam's second surgery has been much harder on Sam, Stephen, and me.  We have been told his abdominal surgery is much more painful by nature than his open heart surgery.  The doctors have expressed how frustrated they are that they did everything they should have done, and the scans didn't reveal Sam's issue until it was really serious.  This GI problem started right after his OHS, if not before, when he first started spiking fever on December 13.  Stephen and I had months to prepare for Sam's heart surgery since his prenatal diagnosis back in May.  We felt like we completely understood Sam's physiology and the procedures the surgeon would do to correct it.  I will admit, Monday after his surgery and yesterday are the most devastated I have felt about Sam's health.  With his heart situation, there was a definite diagnosis and one way to correct it.  His GI issues have been so unknown, and his surgery was basically just "we'll deal with what we see when we get in there" kind of thing.  I was really upset by how uncomfortable he was yesterday--it made me think something else was wrong.  Granmommy has had several abdominal surgeries, and she said she was miserable after each of her surgeries, and the NP explained that abdominal surgery is somehow just more traumatic than OHS.  I think I have been pretty delusional about the seriousness of Sam's case.  He had no setbacks in the NICU, and he was able to go home after six days.  We had over two great months at home.  Any time anyone asked how Sam was doing, I would say he was basically just a normal baby, and he was.  In my mind, I expected his heart cath to go well, his Glenn to go swimmingly, and we'd go back to being a nice, normal family.  It has been a shock to me how much this has all not gone according to my plan.  I know that God knew all of this would happen even before Sam was born.  I know the Lord knows exactly how Sam's story will go, and I find comfort in that.    

I will tell you it's much harder to be on the receiving end of the body of Christ than on the giving side.  We have been lifted up by family and friends' prayers, words of encouragement, gifts, meals, hugs, etc.  I find scripture is the most encouraging to me personally right now.  I'm making a list of verses that people send me, and I'll write a separate post about that later.      

Saturday, January 3, 2015

We're Back

Well, we're back in our home away from home, the CHSU at Medical City in Dallas. 

Sam was discharged on Thursday, and he wasn't up to his normal feeds yet. He was eating about an ounce to an ounce and a half every two hours, but that is still significantly less than what he was eating before surgery. 

On Friday morning, he ate pretty well for the first two feeds of the day, but after the next two feeds he vomited most of what he ate. One of the things included in his discharge instructions is that we needed to watch for dehydration and vomiting. I called his cardiologist, Dr. Kao, and she told me to talk to Dr. An, his GI specialist to see what he wanted to do, and then call her back. Dr. An was ok with watching and seeing how Sam did over the weekend, but Dr.Kao was not. She told me to call back if he vomited again, and he did. I called her again, and she told me to call Dr. An back. Dr. An ordered an abdominal X-Ray, so we took Sam to outpatient imaging in Tyler. We asked to talk to the radiologist since it was after hours on a Friday. We were so thankful the radiologist agreed to talk to us because normally they just send the results directly to the requesting doctor. The X-Ray didn't show anything new--good news.  

Sam vomited again later, so we knew he hadn't had much to keep him hydrated throughout the day, and I talked to the on-call GI doctor again who recommended Pedialyte. I mixed half Pedialyte/half breastmilk, which he had about four ounces over four hours, but he vomited most of that, too. The NP who was on call when he was discharged said that an indicator of dehydration can be the fontanel (soft spot on their head) can be sunken in a little. Sam's was so much so that it really worried me!  I called back and talked to the on-call GI doc, who told me to take him to the ER.  

About 7:30 last night, I got to the ER at Trinity Mother Frances in Tyler. There were a TON of people there, but they took Sam back immediately. One thing we have learned is that Sam's condition FREAKS out any medical personnel who isn't cardio specialized. His sats were normal for him, but the nurses and doctors were concerned. The ER doc agreed that he was dehydrated, so they started him on IV fluids about 10:00 P.M., did blood samples and urine samples and a chest X-Ray.  He was unusually blue around his mouth and nail beds, which was also concerning because the Glenn was supposed to fix that. 

Around 10:30 P.M., the ER doc told me they were going to transfer him by ambulance back to Medical City. I don't think they felt comfortable treating Sam in Tyler, and I'm thankful we're back up here where they know what they're doing.   About midnight, they got Sam loaded, and we were off. 

The paramedic who sat in the back of the ambulance with me was so super nice. He said he had never seen a patient who was stable whose sats were in the 80s. He was really fascinated with how well Sam was doing and how well he handled the very bumpy ride. 

We got to Medical City children's ER at about 2:00 A.M.  He ate again after we arrived, and he vomited all of that. About 4:00 A.M. he ate again, and that was the first feed today that he kept everything down. He has eaten several times since then and has kept everything down. He is also on IV fluids to keep him hydrated. 

They have done several tests today. One blood test shows signs of inflammation somewhere, so he's starting back on antibiotics today.  They did an echo early this morning, and his heart function is great. Hallelujah!

I'm going to cut a long story short and say that on the 31st, the day before we were discharged, Sam accidentally took an ounce of another lady's breastmilk before I noticed. I immediately notified the nurse.  I told the nurse and NP about it again today because I was wracking my brain to think of anything that could be causing something. The NP investigated it, and the mom agreed to do a full health panel to check for any illness that may have passed through the BM to Sam.  The results came back negative for anything, praise God!  What a nightmare.

Right now, we're just waiting for labs to come back so the doctors know what to do next.  Sam is resting well, but he obviously doesn't feel well. It's so hard to see our sweet boy in pain!  Continuing to pray for complete healing!

Thursday, January 1, 2015

Home Again

I heard from the nurse practitioner first thing this morning that as long as Dr. Kao gave the okay, Sam could be discharged today. We didn't have to wait long for the green light, and we were outta there!

We were home for about ten minutes before my parents pulled up with the girls. Emory and Harper literally ran from the car to see Sam!  They weren't allowed on the floor where Sam was admitted, so they hadn't seen him in the four weeks we were gone. 

We're getting settled. It feels like Sam is a fragile newborn again. He wasn't on any medicine before his surgery, and he's on five now, so I feel like I have this huge responsibility!  He's still getting used to eating again, so he eats small amounts more frequently than before surgery. I am just so thankful to be home!!

We wrapped presents tonight, and Stephen set up the girls' gift (a train set) they were going to get from Santa. 

Can't wait to celebrate Christmas with my people tomorrow!

Ringing in the new year

We were told on Tuesday that Sam was for sure going home yesterday. Yay!  We get to spend New Year's Eve with our whole, complete family again!  False. They did an X-Ray on Sam yesterday, and his bowel loops were dilated again, so the floor doc wanted to keep us for another day. He consulted with the GI specialist, and he said he is fine with the results from the X-Ray as long as it didn't show any perforations, and it didn't. So now they have set a goal for what Sam is to be eating on his own every day so he gets enough nutrition and doesn't get dehydrated. Hopefully he will have met his goal tomorrow, and we'll get to go home then. I won't believe it until we are in the car driving away!  Stephen and I have been SO disappointed today!!  Sam was not amused. 

To celebrate the new year tonight, Stephen and I did the one of the weirdest and coolest things I've ever done--we went to this really cool fondue restaurant. Cooking your food one bite at a time is interesting.  They gave us cute hats when we got there. 

We started with this awesome beer, cheddar cheese, whiskey, and bacon fondue. Dipping the red bell peppers was my favorite. 

Then we had ravioli, veggies, steak, jerk chicken, teriyaki chicken, wings, and Stephen ate all the shrimp and salmon because I don't eat things that swim.  They had ingredients to stuff and batter mushrooms. Delicious!

Right before midnight, the waiters passed out noisemakers, and the owner asked all of us to go to the front of the restaurant for a champagne toast and the big countdown.

We finished the meal with chocolate fondue and lots of yummy dippers. 

It was a really fun night!  I hope we get 2015 off to a good start tomorrow by getting to go home!