Four month recap

Caleb is four months old today! We're already 1/3 of the way through his first year!

Weight: 12lbs, 3oz (at his appointment on Feb 20th)

Length: 22"

Clothing size: 3 months

Diaper size: size 1

Eating: Caleb takes 3oz of Similac formula, seven times per day. Whatever he doesn't finish from his bottle, he receives through his NG tube. His occupational therapist suggested we introduce rice cereal at four months, so we started that a couple days ago. He eats about two teaspoons mixed with formula twice/day.

Sleeping: Caleb sleeps 4 hour stretches at night, and we have to wake him to eat. He sleeps in his Rock & Play Sleeper, in his nursery. He naps 15-30 minutes at a time throughout the day. He's an unpredictable napper, because our daytime schedule (appointments, therapy, etc) is still pretty inconsistent.

Highlight of the month: Caleb had open heart surgery on Feb 1st. He spent twelve days Children's Medical Center in Dallas and two days at Ronald McDonald House. We returned home on Feb 15th.

Thank you

From Brad -

Thank you...

To everyone who helped make this chapter of our lives what it turned out to be. Big or small your contribution was invaluable, and I can't thank you enough for everything you did. I'd love to tell each of you "thank you" to your face, but there are simply too many of you and I'm afraid I'd cry with too many of the hugs given and received.

To our family, who was there during the surgery, that shared moments of tension and tears with us. To that same family that provided needed moments of levity in between surgery updates.

To those who gave us cash to help make the trip.

To those of you that gave Visa and AmEx gift cards.

To those of you that gave restaurant gift cards so that Stephanie & I could step away and enjoy time with each other.

To those that gave fast food gift cards for the convenience of a quick, easy warm meal.

To everyone that provided snacks for us to eat while we spent hour after hour in the hospital.

To those that provided games, DVDs, and magazines for us to pass the sporadic moments of down time.

To the maker of the lasagna that allowed all 14 members of our visiting family to enjoy a meal together at the Residence Inn without the expense of a restaurant.

To the lady who gave enough money to cover a night at Ronald McDonald house.

To my work and my auditors for the "get well soon" balloons and bears.

To everyone else that helped build Caleb's stuffed animal collection.

To anyone who has ever given their time or resources to a Ronald McDonald House including the staff and volunteers that helped us directly and cooked several meals for us. They saved us money and time, but more than that, they made the stay bearable.

To a college friend for driving over from Fort Worth to help me "feel encouraged".

To a college friend of Stephanie's for stopping in to chat.

To a friend that walked a very similar path four years ago who has proven to be a great blessing to me in preparing me for this journey.

To the DSACO parent that has explained to me so much of what to expect so far into this journey. Great advice on taking onesies/sleepers with snaps so the wires could string out.

To the family of a dear friend that brought two dinners to us when my friend couldn't make it himself because he lives out of state.

To another dear friend for telling me that he was so anxious to have the heart surgery behind "us". And that "we" will all feel better once it's done. The use of those two words: "us" and "we" are big words to me. I'm not in this alone.

To our families that drove home that point by their interest and involvement.

To every person who has texted or called or emailed. Each conversation helped me cope, encouraged me, strengthened me, or gave me a healthy distraction at the right time.

To the minister who sends out daily bible verses... some were more than coincidentally appropriate for the day.

To our neighbors for watching our house for us, taking care of our trash, and picking up our mail.

To Mended Little Hearts for the hospital survival kit.

To the friend that quilted Caleb a hospital blanket.

To my nurse friends for the hospital survival tips.

To the family member that reminded me that Caleb was born into the "right family".

To the family member that encouraged me to be the best dad I could possibly be regardless of circumstance.

To the friends and family that remind me that everything will be okay.

To every person that Caleb has met that agrees he's the cutest kid around. Your smiles and love for Caleb is encouraging and infectious.

To the friends that have let me dump heavy things on them. To those same friends that have encouraged me to stay the course, but to only focus on the immediate.

To our new Edmond Oklahoma heart surgery family for walking this road with us and allowing us to walk through your journey with you.

To her sister for writing a great blog post that really hit home.

To Piper, Gus, Channing, Peyton, Graham, Daniel, Kaitlyn and Kamri for praying for your friend Caleb and/or for sending him Valentines cards.

To my parents for helping us haul everything back home.

To my inlaws for the hospital visits and the meals.

To Dr. Forbess and his team for their passion and expertise.

To Haley, our nurse who carted us down to get the CT scan while Caleb was having spasms and advocated for him to get an EEG immediately instead of tomorrow. I'll never forget that day or that nurse. We had a lot of other great nurses too... Pat, Melissa, Alisha, Kellye

To each and every one of you who read this blog, even if I do not know you or know where you are. Knowing that you care enough to read means a lot.

To my wife... I love you and appreciate you more now than ever. You are strong when I am weak. You ground me. You bring balance to me. You bring calm to me. You bring me love. You bring joy to me every day. I am proud of you. I couldn't have done this without you and won't be able to handle the next chapter without you. You are a fabulous mom. It was built into you. I am lucky to call you mine.

To God, my Savior. Through Him, all things are possible. Through Him, I get my strength. Through Him, I find love. Through Him, I get peace. Through Him, I have hope.

To everyone who has lifted us up in prayer.... Thank you!

I may never be able to show you how much I appreciate your contributions, large or small, tangible or spiritual. Please know... I'm glad you are following along with us on the ride to celebrate the highs and grieve the lows. To you, I am thankful.

The NEW "new normal"

After five months away from the office, I'm starting back to work tomorrow! I'm so thankful to work for a company that has allowed me the time off for some much needed rest during my final weeks of pregnancy and then for all of the unexpected circumstances/events in Caleb's first few months.

I'm going to miss my little man while I'm at work, but he will be in great hands while I'm gone. My parents will keep Caleb on Mondays, and Brad's mother will keep him on Thursdays. I'm only working two days each week, so that Caleb and I can go to OT/PT, doctors' appointments, and maybe a play date every once in a while on Tuesdays, Wednesdays, and Fridays.

Here are a few photos from our weekend...

The bottle isn't the "be all and end all"

Our Sooner Start occupational therapist came to the house yesterday. She brought a couple bottles for us to try with Caleb. As we were trying the new bottles and talking about how tired I am of having to do NG feeds, she reminded me that "taking a bottle isn't the 'be all and end all'". He won't take a bottle or do NG feeds forever, so this struggle will pass.

Since Caleb is just a few days shy of four months old, she encouraged us to try offering him some rice cereal 2-3 times each day. She said that eating with a spoon will help Caleb's tongue control/strength. He ate about two teaspoons this morning.

Back to "normal"

Since Caleb was discharged from the NICU in November, it seems like most weekdays are spent shuttling Caleb to/from appointments. In Caleb's short 16.5 week life, I don't think we've had a single week where we didn't have a hospital stay, an appointment with a doctor, or a PT/OT session. Since we were in Dallas for 2.5 weeks, we had to put lots of appointments and therapy on hold. But now that we're home, we're jumping right back in to our "normal" busy schedule.

Caleb had an appointment with his pediatrician today. The cardiologist who oversaw Caleb's care while at Children's in Dallas had called her and filled her in on what all was going on. She thought Caleb's incision was healing well, and she said that his heart sounded great. She asked us about the spasms, so we showed her our videos. She agreed with the doctors we talked to in Dallas. The movements don't look like infantile spasms, but they do look like the movements often associated with Sandifer's Syndrome. I am so thankful that those scary spasms appear to be caused by reflux and not something neurological. The Prevacid seems like it's working, and it's been several days since we've seen any spasms. We will go back to her office next week for Caleb's four month vaccinations.

Tomorrow, Caleb has an appointment with his cardiologist at OU Children's and an appointment with his otologist.

We're home!

Caleb had his post-op cardiology appointment yesterday morning. The nurse practitioner was pleased with Caleb's labs, his post-surgery weight gain, and how his incision was healing. Yesterday afternoon, Caleb had his follow-up EEG. It may take up to a week to hear a report back, but I'm assuming that everything is fine there. We haven't noticed any spasms lately. The Prevacid seems to be helping with the reflux, and we think that the spasms might be related to the reflux he was having.

After Caleb's appointments, we returned to the Ronald McDonald House. Our car was packed full when we went to Dallas, and there was no way it was all going back in the car. Not only did we have to take everything home that we brought, but we also needed to return home with two oxygen tanks and a sizable stuffed animal collection that Caleb acquired from family and friends during his two week hospital stay. Brad's parents came to Dallas to help us haul everything home.

We got on the road at about 3:45. Friday afternoon Dallas traffic, dinner for Mama and Daddy, and two bottles for Caleb made for a long trip. We got home shortly after 9:00 last night.

We appreciate your thoughts, prayers, and kind words over the last few weeks. Caleb still has some recovery ahead, and we ask for your continued prayers.

Happy Valentine's Day

We spent a lazy day at Ronald McDonald House. Southwest Airlines cooked breakfast for the house guests... bacon, eggs, fruit, and heart-shaped pancakes.

Uncle Chris came to visit this evening and brought Caleb a new toy. Caleb is beyond spoiled by his uncles, aunts, and grandparents.

Caleb's post-op appointment and follow-up EEG are tomorrow. If all goes well, we should be able to go home tomorrow afternoon/evening!

Out of the hospital!

Caleb was discharged from the hospital this afternoon! He still has some pulmonary hypertension, so he's on a small amount of oxygen. And he's not taking his full bottles, so he still has the NG tube. We're hoping that we can get rid of both within a few weeks. Caleb's incision and chest tube site look like they're healing very well. While he has been cleared to do tummy time, it still seems to bother him some. We'll have to gradually reintroduce that over the next several days/weeks.

As for the spasms, we still don't know for sure what they are. We met with a gastroenterologist today, and we think that they may be related to reflux. He's now on Prevacid, so we'll see if that helps. Caleb will have another EEG on Friday to help rule out any neurological causes for the spasms.

Caleb will also have a cardiology post-op appointment on Friday. If all goes well at the cardiology and neurology appointments, we should be cleared to return to OKC on Friday evening or Saturday.

Until then, we will be spending our time at the Ronald McDonald House. My plans include snuggling with my little man, catching up on some much needed sleep, and burning off all those unhealthy hospital snacks in the fitness center.

While getting out of the hospital is great progress, Caleb still has weeks of recovery ahead. Please continue to pray as his body heals from surgery.

Post-op days 8 & 9

Yesterday, the cardiologist decided to take Caleb off of oxygen and then do an echocardiogram. He wanted to see how Caleb's heart was doing without the oxygen, because one of our goals is to not have to go home with it. He needed to be off of the oxygen for at least thirty minutes before the echo. After almost four hours, we were still waiting for the echo tech. Caleb's O2 level started to drop, so the nurse turned the oxygen back on. Apparently, the echo tech was finally ready for us about that time and didn't want to wait thirty more minutes. We waited four hours, but he/she couldn't wait thirty minutes. Hmmm. The cardiologist decided to postpone the echo until Sunday.

I took the "night shift" with Caleb on Saturday night. Shortly before 10:30, he started having spasms again. It had been 1.5 days since we saw them... I had hoped to never see them again, but no such luck. The attending cardiologist for the night decided to give him a dose of Ativan. That's the same anti-anxiety medication that Caleb received the other time he had spasms and when he was irritable after surgery. The spasms stopped immediately and he slept well for the rest of the night.

This morning, the cardiologist decided to postpone the echo again. Because the Ativan hasn't completely worn off, he doesn't want to take Caleb off of oxygen today. Fingers crossed that we can try going off of oxygen and having an echo tomorrow. At about 8:30, the nurse told me that the neurologist would be stopping by soon. It's 3:15, and he still hasn't shown up. Caleb has slept most of the day, and I haven't noticed any more spasms.

It's been nine days since Caleb's surgery. I had hoped the hospital stay would be 7-10 days. Now that we're almost to the ten day mark, I bet we'll be here longer. How much longer?... who knows. When the cardiologist mentioned this morning that Caleb might be discharged in another day or two, I told him that I didn't feel comfortable being discharged until we know what to do about the spasms. No one has been able to explain what they are or why he's having them. I might be willing to move on without a diagnosis if I could just figure out what to do about them. When Caleb has them now, they give him the anti-anxiety medicine through an IV. But what are we supposed to do if this happens when we're out of the hospital?!

Roller Coasters

This is Brad once again taking a stab at this blog thing. From the top, I'll give credit where credit is due... I am stealing the idea for this blog post from Lindsay Rother. Lindsay is the sister of Jamie Smith. Jamie is the mom of Emerson Smith. Emerson is another baby from Edmond, born 10 days after Caleb. He also has Down syndrome and also had heart surgery here in Dallas. Lindsay recently wrote about "roller coasters".

The last week has been a roller coaster for us. To recap... surgery last Friday went well. Bypass machine off successfully. Saturday, the ventilator came out. Sunday, feedings became much easier. Plans were made to move upstairs to our own private room Monday morning. But a routine, last minute echocardiogram revealed that Caleb's lungs hadn't responded as hoped. His heart was struggling as a result. Pulmonary hypertension was the diagnosis. Not supposed to happen on kids that receive this surgery this early in life. More days in the CVICU to treat this new diagnosis. Extra medicine, extra gas through the nasal cannula. Tuesday brought good news as Caleb was responding well to the medicine and we learned more about how the hypertension in kids this young typically isn't permanent. His echocardiogram was better than the Dr.'s had expected. Wednesday was a mixed day as it started with a regression on bottle feedings and once again canceling plans to move upstairs, but it ended with an even better echocardiogram than Tuesday. So plans were made to move upstairs on Thursday.

So Thursday came and by noon we were on the move!!! Nevermind that he still wasn't eating great or that he was doing this weird quiver thing occasionally that morning, we were moving onward and upward!

But back to the quivering... Thursday morning I noticed that he was having this little quiver in his upper tummy and chin, followed by a short cry. It was certainly weird, but not too scary. I mentioned it to Steph and the nurses, but it never happened again. We assumed it was constipation or gas or hiccups or something else inconsequential. But then Steph saw it too. She agreed that she had never seen that before but wasn't too bothered by it either. So we moved upstairs. Within the hour of moving to our own spacious quiet room (with a door and a private bathroom), Caleb started having the quivers again. This time, a cardiologist was there to see it happen. He said that babies do weird things sometimes and to not worry. But then it happened again... and again... and again... each closer together than the last. Then, as we were eating our late lunch, the worst one we had seen happened. His belly quivered, his arms extended, his chin quivered and then his head started to shake. This happened a few times. Most followed by either a cry, a cringe, or a helpless little "please make this stop" look to mom. Steph said the words we were both thinking, but that I was afraid to voice, "It looks like a seizure". Mommy cried, Daddy pulled out the iPhone to record the next one. We called the nurse back in. Within 20 minutes, 7 or 8 doctors or nurses were bedside watching as the movements continued every few minutes. They only lasted a few seconds each time, but they were absolutely terrifying none the less. I wanted to pick him up and hold him tight but was told not to. The IV team was called up to start a new IV so that we could get Caleb some anti-anxiety medicine to calm him down (did it ever... and fast!). We were then whisked away to have a CT scan to see if bleeding on the brain was the cause. It wasn't. We then hustled back upstairs to have an EEG done. After 45 minutes of EEG, no abnormal brain waves were seen. However, since Caleb was in a deep medicine induced nap, he had no "episodes" during the test. Because of this, they decided to extend the EEG through the evening and night trying to catch an episode on film and measure his brain waves during it. We were told to push a little red button if we ever saw an episode. We never pushed that button.

That evening, as Caleb slept and slept and slept, the room was awkwardly calm. I think I showed that video to 15 doctors, nurses, or students. Many of them said that it didn't look like a typical seizure to them. My response was usually, "Then WHAT was it?".

This morning we were told that the neurology team visibly saw several "sudden movements" throughout the night as Caleb slept, was woken up, ate, and fell back asleep. However, throughout all of those, no abnormal brain activity was recorded. Yeah! We were told that infantile spasms (a type of seizure in young children) is one of those many lovely things that is more common among kids with Down syndrome and that Caleb needed to be watched closely. However, if he had infantile spasms, we should have seen something on the EEG regardless of whether they caught an episode or not. Remember, we didn't. We will repeat the EEG next week sometime to see if anything changes. The doctors are hopeful that this was an isolated incident. Until then, we wait for the next twist or turn on this roller coaster.

I have rethought through yesterday morning a hundred times trying to piece this puzzle together. Why did this happen? What caused it? I can't think of a medicine he took, a medicine he came off of, a change in his nasal cannula gases or his gas pressure, a change in his diet, or an abnormal result of a lab or X-ray that I was told of. Nothing seems to correlate. Maybe it was isolated...

Today was a very "boring" day. Never thought that boring would feel so nice. "Uneventful" is probably a better word. Steph's parents bringing lunch was the big event of the day. Since I slept at the Ronald McDonald House last night while Steph watched Caleb, it's my turn tonight to take care of him while she gets a good nights sleep.

For now, I will leave you with an excerpt from Lindsay's blog (I couldn't write it better myself):

"I’m sure what lies ahead will look much like a roller coaster…lots of ups and downs. We will celebrate the successes and baby steps forward. We will grieve the setbacks like any normal human would. But as anyone who’s ridden a roller coaster knows, the best part isn’t the start or the finish. It is all about the ride.

So life, I’m buckled and prepared for the unexpected turns you throw my way. But just like I am on any roller coaster, I’m scared out of my mind despite knowing it’s going to be okay in the end. Very intelligent people build roller coasters with countless levels of safety. They are trustworthy. The best part of all this, is that the blueprint for Emerson’s life is laid out and planned just like every roller coaster. It isn’t a question mark. The Creator of the universe, God Himself, knows the outcome. He knows every turn, drop and flip that’s ahead on this ride. He knows the ending. And it will be good regardless of what it looks like. My hope and trust lie in this regardless of outcome because I trust in the inventor of the roller coaster called life."

Post-op Days 4 & 5

Yesterday (Tuesday) was Caleb's post-op day #4. When we arrived at the hospital that morning, the nurse said they were getting ready to do another echo. The day before, we had been told that they wouldn't repeat one until Wednesday unless he showed signs of distress. Caleb was still doing well, though, and the doctor just wanted to see if his new meds were working. The echo on Monday showed enough tricuspid regurgitation that they were concerned. The doctor said that if they hadn't caught it on Monday's echo, Caleb would have began showing signs of distress by Tuesday. Well, the echo on Tuesday only showed "trivial" regurgitation! The doctor seemed a little surprised about how well Caleb was responding to the medication. She wanted to continue the medication and do another echo on Wednesday. The rest of the day went well enough. Caleb did really well with his bottles and was very alert.

When we arrived at the hospital this morning (Wednesday, post-op day #5) we were told that Caleb struggled with his bottles overnight. I thought that maybe the nurse had been lazy and didn't try hard enough with him. But then I tried to feed him, and I could tell that something didn't seem right. Sorry, nurse! He seemed very sleepy and disinterested. We're not sure if it was because of possible constipation or maybe some low blood sugar, but we're now trying to take care of both. He received some medicine to help with constipation, and we've increased his feeds to a level closer to what he was taking before surgery. He had an echo done shortly after noon, and it showed even less regurgitation than the day before. The nurse practitioner said there was none. So whether it was none or "less than trivial", it wasn't much!

Unless things change overnight, the plan is to move out of CVICU and to the cardiac floor tomorrow. We thought we were going to move on Monday. We thought we were going to move today. So we're hopeful about moving tomorrow, but we're not packing Caleb's bag yet. He is receiving excellent care from the team in the CVICU, and we trust that they will move him when the time is right.

Ronald McDonald House donations

As I was getting ready for bed my first night at Ronald McDonald House, I realized that I didn't have my toothbrush and toothpaste. We had moved that day from a hotel, so I figured I must have left them there. Fortunately, the Ronald McDonald House has a closet stocked with toiletries, paper products, and other essentials. From the closet, I was able to get a toothbrush and toothpaste. Since that night, I've been thinking about how glad I was that someone had donated those items I needed. Another family may get "home" after spending a long day at the hospital and then realize they need a tube of toothpaste. I want to pay it forward, and maybe you can help!

Please consider making a donation to the Ronald McDonald House in your area. Both the Dallas house and the OKC house have wish lists on their websites.

RMH Dallas Wish List

RMH OKC Wish List

If there's not a Ronald McDonald House near you, there might be a hospitality house in need of donations. For my family and friends in the Wichita Falls, TX area, consider donating to the Rathgeber Hospitality House.

Rathgeber Wish List

I'm sure they will be grateful for any donations, large or small. While I can't thank the person who provided the toothbrush and toothpaste for me, I can thank you for helping me pay it forward.

Holding Caleb

Since Caleb's chest tube and wires were removed yesterday morning, we were able to hold him yesterday evening. 3.5 days is too long to go without holding my precious baby!

No Strings

Caleb's chest tubes and wires were removed this morning. The song "I've Got No Strings" from Pinocchio kept playing in my head as the nurse practitioner removed them. Caleb's almost "a real boy"!

We thought he might move to the cardiac floor today, but plans changed. He had an echocardiogram this morning, and it showed that he has some pulmonary hypertension. He's not presenting signs clinically, so hopefully we caught it early. The doctor started him on a couple medications, and he'll probably get another echo done on Wednesday. If all is good then, he might move out of ICU.

Ronald McDonald House & a Caleb update

I spent last night at Ronald McDonald House - Dallas . I'm so thankful for such nice, affordable accommodations so near to the hospital.

Caleb had a good day yesterday. Shortly after midnight, he started taking bottles. He did well with them all day. He was much more alert, but had to get some pain/anxiety medicine every now and then. He had a fever early yesterday morning, and we have to wait 48 hours for blood cultures to see if there's an infection. The fever broke and hasn't returned, so I don't think we have much to worry about with that.

Brad stayed with Caleb last night. I haven't talked to him yet, but I'll hear about how the night went soon. Today potentially could be a big day. I was told yesterday that Caleb's chest tubes might get removed today! If so, we might get to hold him! I hope so! It's been three days since I've held my little man.

Hold Me

Being the only child and first grandchild in our family, Caleb is beyond spoiled and always has someone ready to hold him anytime he lets out so much as a whimper. This has made things a little difficult for post-surgery, though. We can't hold Caleb until his central line is removed, and Caleb doesn't like this at all. Hopefully, the line will come out tomorrow.

Recovery Day #1

Since Caleb was still sedated last night, Brad and I both took the opportunity to get some good rest at the hotel. We arrived at the hospital bright and early this morning to be there before the surgeon made rounds. Caleb was taken off the ventilator, and the breathing tube was removed. His Foley catheter was removed this morning, as well. He awoke several times throughout the day but didn't stay awake long. He has received some pain medicine and anxiety medicine as needed. He has started drinking Pedialyte from a bottle, and I hope that we can start regular bottle feedings soon. Overall, I think it's been a pretty good day.

Brad and I left the hospital for a few hours this afternoon. We went for a run and then had a nice dinner at the hotel with our families. My mom and I are staying at the hospital with Caleb tonight, and Brad is going to get a good night's sleep at the hotel.

Surgery's done!

Caleb is out of surgery! We saw him briefly as he was being moved from the OR to the CVICU. We should get to see him again in 1-1.5 hours. The surgeon said that Caleb did well and that he is pleased with how everything went. Thank you all for the prayers this morning. Please continue to remember Caleb in your prayers as his recovery begins.

Waiting for surgery

We just met with the anesthesiologist. He's prepping now and will come get Caleb soon.