Tuesday, September 30, 2008


Things for which I am thankful:

  1. Justin's surgery being at the EXACT time it was. I would not want to have had to care for him post-surgery during the hurricane. (Boiling water for baths...not fun, and very hard without power!)
  2. Travis' adaptability and outgoing nature
  3. My sister living in town and having a relationship with Travis so that she could care for him while we were away.
  4. My sister's apartment having power so soon after the storm.
  5. Our church family being so helpful offering help when we had such a need. And even doing things anonymously!
  6. Our home surviving the hurricane without any damage (no trees down, no water damage, NOTHING!)
  7. Friends who called to check on us and encourage us...we needed it!
  8. Places to stay and things to do to keep us busy away from home.
  9. Internet available to keep in touch with everyone
  10. Cell phones!
  11. Hot water
  12. Only having to clean dirt and dust when we returned home yesterday...not having to pull up carpet or tear out dry wall.
  13. Our stuff!
  14. All of Travis' toys
  15. Justin not having ANY serious complications
  16. Justin getting stronger every day and not at all acting like he had major surgery three weeks ago
  17. Justin taking his medication so much better! (Now he gets in about half of his dose..before it was closer to a quarter! He likes to smile at us when we put it in his mouth and he lets it run out the corners of his mouth. How can you get upset with that?)
  18. Randy's short commute last week
  19. Randy's job
  20. My job being so flexible (I am working my one day for Oct. this Sunday)
  21. My mom's willingness to stay with us and be carted from place to place last week, without complaining!
  22. My dad offering his place for us to stay...in Florida!
  23. A&M's win this weekend (no one's happy if daddy's not happy!)
  24. Gritless tooth polish (I had my teeth cleaned today and I HATE the gritty stuff they use to polish your teeth. And just in the past 2 weeks or so my dentist got gritless tooth polish! My apt. was later than usual because of surgery. Do you think THAT'S why Justin's surgery was delayed??)
  25. God's grace and his commitment to finish the good work he began in me!

Sunday, September 28, 2008

We're Coming Home...

because we have power!!! Yeah! We are going to stay here one more night to give the house time to cool down, and then we'll go home. We will clean and do laundry here, to get the apartment ready for the next occupant, and then we'll go home and clean and do laundry there! It has been interesting to say the least. Justin's baby book will have an interesting chapter about this whole ordeal. Thanks for all your prayers and phone calls! We appreciated the encouragement!

Saturday, September 27, 2008

Apartment Life

So we are settled into apartment life. It's actually not too bad! Randy did laundry this morning...pretty cool, huh? All I had to do was sort and bag and go get my nails done and when I returned, it was all folded on the couch. I could get used to this! I know it won't always be like this, so I am enjoying the vacation. There is no lawn to mow, very little to keep clean, and we only deal with one meal at a time. I am SO glad that Travis loves sandwiches! He'll eat just about anything between two pieces of bread.

I remember now why we bought a house though. I am not keen on people stomping on the floor above our heads (at 3 am!) or people partying poolside at all hours. But really, having a place to call our own, if only for a short time, is fabulous! Here's some pictures from our Saturday. It was good, watching football (A& M won! Whoop!) and playing with Travis:

We visit our house every few days or so. As we approach, we slow down, lower the window, turn off the radio and listen. If we hear our neighbor's generator, our shoulders droop and we resign ourselves to another day without power. Our neighbor used to work for the power company and he even called one of his friends and pled our case to try to get us moved up on the list. I am not sure if it worked, but it was a sweet effort! We drop things off at our house and pick up new things. It's funny: We need different things at different places we've stayed, so we collect things as we need them. At first Justin was only getting sponge baths, so we didn't need his bath. Then at our friend's, she had a baby bath so we were fine, now we are without again so we had to improvise the first night (note the large sponge we found at the apartment!)

Now at the apartment there are only chairs for three people to sit at the table, so we went home and collected some folding chairs. We are quite the funny group as we move from place to place. It is hysterical for me to consider, but it works!

People have asked if I notice anything different about Justin. His stamina has improved and he can cry a whole lot louder! He is able to get deeper breaths so he can carry his cries to a whole new level. And he can eat without taking breaks, so he eats more and longer. Maybe not both good things, but I will deal with the one to get the other! Every day that passes Justin is getting stronger. He can't lay on his stomach yet, but his stomach muscles are remembering how to kick his legs to reach the toys on his bouncie seat, and he is moving around more to touch things. He is smiling and interacting like he was before surgery. That's not a long time for him to get back to where he was, and now we can move forward from here.

I have been thinking about what we went through at TCH. I am a very introverted person. I have my friends and my groups to which I belong, but beyond that I kind of tend to live in a bit of a bubble. I do the things I need to do, but I feel like I live wearing blinders. I have always marveled at Christians who are able to talk with anyone and develop relationships. I never really thought I could do that. Going through this with Justin has made me so full of joy and praise that I cannot help but talk about what God has done for us. I am learning how to live with direction and with focus. I want everyone to know what God can do for them. I am fully convinced that I could not be the mother, the wife, or the person I was created to be without Jesus and his sacrifice for me. I am growing and changing, and it is not learned, it is learning. It's not like knowing that 2 + 2 = 4. It's a constant process, and there are setbacks, and there are periods where not too much happens. On my side that is. Now that I am looking for where God works, I see him EVERY DAY. Pretty cool, huh?

It was actually a treat not to have a lot of responsibilities being at the hospital, so I was able to walk and talk with various people and hear their stories. It was good just to listen and empathize because we were all in similar situations. Some clearly more serious, but we all knew what we had gone or are going through. I could walk down the hall in CVICU and see which babies have DS because of the way their legs flop open like Justin's (there were a lot because DS causes heart defects). And I was able to share how my relationship with God helped our family and continues to help our recovery. Today when we got our nails done, my mom was telling her pedicurist about Justin's surgery and she remarked about sad it was that Justin had to go through that. It struck me because I had never thought that it was sad. After getting Justin's diagnosis and crying a couple of days (straight!) I just jumped into God's arms and let him carry me for a while. It's something that we will face with God. It's sad that Justin had to have surgery, but how fabulous that he is recovering and doing even better. It's sad, but in a glorious way. I NEVER would have chosen this for my child, but it is so clear how God is present in every step of the way.

Some of Justin's friends bought him a Build-A-Bear and the person who helped them stuff the bear asked who it was for and when our friend told her about Justin she teared up a bit. Justin's friends recorded a phrase of Jesus Loves Me on a recorder to go in the bear's hand. Little TD has been wanting to get a card that sings Jesus Loves Me and he was able to sing it himself (with Princess TD). That employee won't forget about making that bear in amongst all that she made that day. That is so perfect. How great to be a witness. God is breaking me out of my shell, and I hope that I never lose sight of the person he wants me to be.

Thursday, September 25, 2008


Our cell phones don't work very well here, so I wanted to pass along our phone number for our new home away from home: 832-778-0526

We had a wonderful night! My mom and Travis slept at my sister's apartment so we could see how things would work at the apartment. Travis didn't wake up until 6:45 am! That was really good for him. And Justin woke up several times during the night, but he talked himself back to sleep fairly quickly. We are hoping he will decide it's not worth it to wake up and he will stay asleep within a few days. That's our hope, but we know there are no guarantees! We heard that yesterday the electric company took the map with the estimated time of power restoration off their web site because they weren't meeting expectations. We decided that expectations don't mean anything, so we are just happy for today. We have a wonderful place to sleep and our family ALL TOGETHER!

Wednesday, September 24, 2008

Goodnight, Sweetheart...Well, It's Time To Go

I was taking a nap with Travis today and I had a bunch of songs in my head, so you will have to excuse the song references in this post!

We have moved! Yeah, three days of little to no sleep makes one do crazy things. The boys have done some collaborating and they have a schedule where one is always awake all night long. Ok, maybe not ALWAYS, but close! We love our amazing friends who put up with us for way longer than we anticipated, and we know we are always welcome there, but we were hoping we could try to get things a little more back to normal. So, we packed up all our stuff in search of better sleep. Our church has some apartments close to the medical center that we rent to people coming to town for treatment, and one is available for the next week. We had better have power before then!

So, we packed up our: 12 plastic shopping bags, 11 children's books, 10 teething rings, 9 bath toys, 8 Thomas the Trains, 7 bags of breast milk, 6 suitcases, 5 packs of diapers, 4 pairs of shoes, 3 bottles of medicine, 2 igloo coolers, and one big boy potty seat!

Okay, so maybe not exactly that, but it's a LOT of stuff. We are still in the ranks of the homeless, but we have hope! Every other person who has power is one less person who has to get power before us. And we're so close to Randy's work that we get to have lunch with him! That will be very exciting for Travis. And Randy will have the shortest commute he has ever had!

Sunday, September 21, 2008

Stages of Normal

I know you have probably been suffering from withdrawal going so many days without hearing from us after 2-3 posts per day for so long! We have been trying to figure out what to do and where to go since we still have no power at our house. It was quite a welcome to the post-Ike world. I didn't know what to expect, but it was a bit crazy. Street lights and signals are out and piles of tree limbs are everywhere. I know we missed the worst. Most things were already somewhat cleaned up.

We spent the first 2 nights at my sister's apartment. That was not as bad as it could have been. We had some good nights and the days we spent moving stuff to get to other stuff and then moving that stuff back. We quickly realized that it could not be a too-long-term solution. We then got a few calls from people offering their homes for refuge. We decided to move closer to our house so we could be near family and friends. We had SO much stuff because we had packed in shifts and as needed, so we had hospital things, hurricane supplies, baby items, and big boy toys and a potty seat. This included a cooler big enough to fit both me and both boys with room to spare. We looked so funny hauling everything out! We caravaned up to the Woodlands and settled into our NEW home away from home.

On Saturday we went back to our house (our home with no power). We took a few pictures of the subdivision:

See Travis and me off to the right? That gives some perspective. And Travis is standing on a piece of stump almost as big as he is!

There were some HUGE trees that went down in our subdivision! I can't imagine what it looked like those first few days!

Sunday afternoon we were concerned about Justin's chest tube hole. It had been getting red, so we called the cardiologist and he asked us to come into the ER. So we spent Sunday afternoon at TCH emergency. We were there for 5 hours and got a chest x-ray, EKG, and blood work, and looked normal. They think it was irritation from the stitches so they took them out and told us to watch it.

It is now Monday morning and we stopped by this morning and there is still nothing, so we are still at the Koctar's. It is difficult going back to being the parent of two boys again. Travis is doing so well with going potty, but we ALL have to go into the bathroom to go potty! And the rooms are close so one wakes up the other. You know, all the things that we dealt with prior to surgery! It was hard in the hospital having my mom and sister knowing more about what was going on with Travis than I did. I guess that's how Randy feel sometimes. It was fun getting the boys both ready for bed tonight. Justin was able to have a REAL bath, in water and everything. Soon we can bathe the boys together again. Here's Randy talking with Justin before bed tonight. He was getting his bedtime instructions...sleep hard, sleep long!

We are getting back to normal, but it is going to be in stages. We are so glad to be out of the hospital, and hopefully the next step will be getting home. We will be spending some time at home healing, and slowly back to our activities. Of course, it is a new normal, but it's OUR normal.

Wednesday, September 17, 2008

Recovery: Day 9: Home! Sort of...

We were released from the hospital at about 1:30 pm. We got our post-op instructions: Justin is not allowed to go swimming for 6 weeks, jump rope for 8 weeks, or carry a backpack for 12 weeks. I hope I remember! We had our prescriptions filled, we made a withdrawal from the milk bank, and we were on our way! We said good-bye to good old 1528, and to our favorite nurse, Tamara. She was our nurse both times, the false start and the real thing when we arrived on 15 and when we left. We did tell her that we hope never to see her again, except maybe at the grocery store!

Where to, that was the question. We checked out the medical apartments, and they don't have any power, so we headed to my sister's apartment. Justin was just happy to be somewhere other than where he would be poked and prodded. And he was happy to play with his brother. Plus he liked having his right thumb back after they took out the last IV.

We had to take a bath to get all of the sticky off, which wasn't much fun, but it tired him out enough that he went right to sleep. So Justin is in the pack and play, Randy and I have Mireille's bed, Travis has the big chair with the ottoman at the end, Nana has the couch, and Mireille is on an air mattress in the living room. That leaves just enough room for everyone to get to the bathroom at night. I hope this isn't TOO long term, but we heard from a neighbor that the estimate for our neighborhood is sometime after Monday to get power.

Here is an after picture of Justin. The incision looks really good. The 2 drainage tube holes have stitches, so they still stick out. (Travis said that Justin has spiders on his stomach!) and there are 2 smaller spots above the drainage holes; one was the pacing wires and the other was the LA line directly into his heart. He is looking so good; it's hard to believe that it has only been 9 days since surgery.

There are a lot of sick children left on 15, including several heart transplants. Please keep them in your prayers as they have a long road ahead. There will be lots of problems as children are ready to be released, but have nowhere to go. Or need nursing care, but the nurses have no gas. Or have medicines requiring refrigeration, and no power to cool. God protected us through the storm, but for many children at TCH, their storm has only begun. We are one of the "lucky" ones. We are one of the blessed ones.

Recovery: Day 9 (AM)

We were awakened at 5:45 am for a chest x-ray (go-getters, aren't they?), but fortunately we were able to go back to sleep. The results came back very well, so all is still on track for an early dismissal today. The blood work was still not in the right range, but it was headed the right direction, so they will just repeat the labs at our post-op cardiologist apt. Now we are waiting for all the paperwork. That always takes the longest, doesn't it?

We are now working on transportation and of course, where to go. Things at our place are still powerless, but we got word that one of our church's medical apartments close by is available, so Randy is off to check it out. Six of us at my sister's one-bedroom place might turn ugly quick!

The doctor just came in and said we should be out of here in an hour or so! She just needed a good contact number...not sure what to say to that...

Tuesday, September 16, 2008

Recovery: Day 8 (Evening)

Most of the rest of the day I spent alone with Justin since Randy went to try to save our freezer from certain death. (Remember the post about my "burgeoning" freezer??) We were fine since we are kind of just biding our time to make certain that there are no complications from the chest tube. Travis came to visit again, which was great. There is a playroom on the floor that is open for certain hours during the day, and outside the room there are little cars and vehicles (all foot powered) with which the kids can play. It's really more for the patients, but we let Travis play with one for a short time. Now that will be the thing he remembers about Justin's time in the hospital.

Really, the day was peaceful. Things are starting to get back to normal, so several of our friends were discharged today, including Megan, a little girl born 3 days after Justin who had surgery the same day. We are happy for them and are anxious to follow them home tomorrow.

Of course, home is relative right now. Our home is on a weird power grid that only has about 12 houses on it (really!) and we lose power a lot. Plus, we heard that there are 3 poles down behind our house, so they have to be re"planted" before we can get power. So, if nothing changes, we will be heading to my sister's apartment when we leave tomorrow. With the gas situation (waiting in lines for more than 3 hours to fill up, etc.) we cannot risk being too far from TCH if there is a problem with Justin. We also have to return to the cardiologist soon for a check up and stitch removal. So, if I thought it would be difficult to stay home to avoid getting sick before, this is going to be even better! And the doctor said that until we are sure that the water is okay, I need to boil it for Justin's baths. Fortunately, they will only be sponge baths for a while.

Oh, and the freezer? It was moved to a friend's house (who has power) for the time being. I am not sure how they managed it, but I am sure happy that they did. And from what I hear, the breast milk was saved! But the ice cream was lost, so my mom and Randy drank the half gallon of Cookies and Cream we had just bought!

I have had several offers of places to stay and I might be making the rounds, so now you might wish that you weren't on the list of people who offered to help! One friend who lost 4 trees in her front yard (one hit their car!) said we could stay, but we had to take a tree when we left!

Recovery: Day 8 (AM)

So last night went awesome! We appreciate everyone's prayers for sleep; they really helped! Justin slept all night from about 9:3o pm (his last medicine is at 9 pm so we wait until after that) until 5 am (which actually was 4 am vitals; we were on the end of the rotation apparently) and then we ate GREAT and then slept for another hour. I am so happy for that! Our PCA, who does vitals, didn't wake him for midnight vitals (she did them, but didn't wake him) and she didn't make us do weigh in at 4 am (Seriously? Who decided that 4 am was a good time to get babies naked and weigh them? Clearly not the people who then have to put them back to sleep!) So we are requesting that PCA tonight as well!

We have already had 2 chest x-rays and a blood draw and....the last chest tube came out! It has been a good morning. All that is left is the IV, which comes out right before we leave. We got rid of the telemetry box yesterday (aka: the spider). The chest tube removal is actually very easy, it just is a bit painful, so he go some morphine (hopefully, his last dose). This tube was WAY longer than the first one, and I had to take a picture. I had no real measurement, so I used something to which most of you will be able to relate:

If you look above the black and white ring you can see a loop of string around the tube. That is the stitch that held it in place on the outside. The length that is to the left of the string was the part that was inside. It is about 12 inches long. Yikes! They said that it isn't a problem until it starts drying out from having been in a long time, and it was time for this one to come out. There was significantly less drainage yesterday than in previous days.

SO, it looks like we will be going home tomorrow!

We have to return to the cardiologist to have the stitches removed in a couple of days. And we will have a bp medicine and a diuretic medicine for at least a month. The bp medicine may be for life, depending on how the left valve heals (the one with only one muscle). If it can get a good seal, then we could be done with that medicine too. Please pray for that.

I am so glad that we are closer to the end of this saga than to the beginning. I have started contemplating the timing and the meaning of this whole experience, but it will take a bit for them to be complete. We are so very thankful for God's provisions through this time.

Monday, September 15, 2008

Recovery: Day 7 (Evening)

Today ended up being a wonderful day. All the tests came back negative or positive, the right way depending on the test. Justin got a bit more sleep, at least enough to be pleasant. We were able to do some laundry (thanks, Kerri, for the suggestion to bring laundry soap!), and take showers! And they released the restrictions at TCH, so....we had some visitors! Nana and Ami came, but the best one of all was TRAVIS! We all missed each other so badly and it was wonderful to be together, if only for a couple of hours (the restrictions are still on for the night). Daddy and Travis checking out all the construction cranes.

Travis brought some Thomas the Train stickers for Justin (and he
helped to put them on too!)

And photographer Travis did some picture-taking...we think he has
a foot fetish!

Super Travis!

All the family, back together!

The doctors said that if the tests of the drainage fluid look okay, they will be able to take it out tomorrow. Then we have to wait a day and do another chest x-ray, and we should be free! That would mean Wednesday we think. Nothing is certain yet, but today was very promising. Justin is needing to be home, and we agree. Travis has been telling everyone that we need to be "all together", and then he names everyone he knows. It may not be quite that many, but at least the DeCarlos will be home SOON!

Recovery: Day 7 (Noon)

It was another tough night. I didn't sleep more than about 3 hours, and Justin didn't sleep much more. I am feeling like the doctors care a whole lot about how much Justin eats, but they don't give a lick about how much he sleeps. I am starting to get to my limits and I have to take a moment to breathe and pray before I speak to anyone (especially Randy!) Justin finally was able to get a nap this morning without interruption. I laid in bed with him, and got a few winks myself.

The chest tube is still draining out too much for it to be removed, so we will be here another day at least. We haven't had the echo yet, or heard when it will happen. There is no word yet about the hospital opening up to visitors, or releasing any patients. Our friends have put some pictures of their street and their kids playing outside, including Travis. I have watched the video of the pictures several times and it helps a little with the Travis-sized hole in my heart. I hope we can find out more soon.

Sunday, September 14, 2008

Recovery: Day 6 (Evening)

Well, we took care of the constipation, for now anyway. Justin is SO much happier, and that makes for happy parents! He has smiled for the first time in almost a week, and he is talking and squeaking. Randy asked who replaced our child with a bird!

We were able to free ourselves from our last attachment to the wall, the continuous pulse ox monitor, so that means we are free to walk the halls. We took our first walk around the floor and explored our world. It was nice for mommy at least. We still have the EKG box, but we are trying to get rid of that too. Justin looks like he has a spider trying to escape from his stomach!

We took all of the excess tape and patches off Justin and he looks more like my baby, finally!

This was mommy and Justin watching football today. Some of our teams won, but it was just good to watch something other than hurricane coverage!

I accidentally cut Justin's thumb when I was clipping his nails and so his thumb is all taped up. his other hand has the IV in it, so he cannot suck either thumb, but he is still trying. There is some cotton wrapped around the thumbs to protect them, and somehow he manages to chew on it and so he has fuzzies in his mouth all the time. I made him some onesies that velcro on the shoulder for easy access to his chest and easy BP readings, but they kind of look like old man undershirts. That combined with his pot belly after eating makes for a funny looking baby!

The plan for tomorrow is another echo sometime, possible removal of the chest tube, another chest x-ray, and more blood work. I think our main issue will be eating and gaining weight. Today was much better, and I think clearing the pipes was a big factor in that.

We have the BEST friends ever. Since our family spent the hurricane at our friends' house, we didn't know what happened to our house. We knew the outside was okay, but we didn't know about the cat or power, or the situation inside. Our friends went to our house along with my sister and cleaned out our refrigerator, threw away all the spoiled food, cleaned it with clorox wipes, turned it off, and propped open the doors. It's ready for us to come home! And kitty is fine and has a clean litter box and food and water. And they got a generator and are continuing to care for my family. I want to cry and laugh and above all praise my heavenly Father for the love of family. They are my church family. I have spoken with a couple of people today and they all ask if we need anything. Sure, there are some things we could use, but "need"- no. We are safe and well-fed, and healthy. Everyone has weathered a storm this week and we are just rejoicing for safety on the other side.

Recovery: Day 6 (Noon)

It is more of the same from TCH. We had a rough night. Justin just wouldn't settle down, so we were up most of the night. We think he is constipated, so we are tackling that today. The chest tube is still draining, so it will stay in another day at least. He is still fine off the oxygen, so that is off for good. He had a bath finally, and that got a lot of the tape residue off, so he looks so much better! It was starting to look like we had let him go roll in the mud! Mostly he is just so tired! He is cranky and will not give it up. He gets it from his brother. Jusitn is eating better too, so we are glad for that. We had broken Justin's bed, so we got a brand new one and it works SO much better.

It looks like they are going to let the "ride out" shifts go home tonight, and bring in the "recovery" teams to staff the hospital. And they are going to start discharging some patients, as long as it is safe to do so. I am not certain what they will do if people have to return to a place with no power, but for now, I am not going to be concerned.

We are missing Travis so very much. We have never been away from him for this long and he is starting to ask for mommy a whole lot. We are so thankful for the phone lines still being okay, so we can talk to him at least. I want to give him the biggest hug and not let go. I am not sure that will happen with a wiggly 2-year-old, but I know he will be holding on too. I trust that God is caring for my family wherever they are.

I talked to my dad today and he mentioned going to church. I had forgotten it was Sunday. That makes me so sad. This is the day to be together as a family, and we can't. It is part of the refining process I am going through. I know I lean on my church family and I believe that we are called to do that, but not at the expense of our relationship with God. God and I have done a lot of talking and I am convinced that the timing is perfect for the surgery, but there is a whole lot of other things that I am having to let go and trust that God will handle. I am certainly not getting it all right, but I can feel a difference and know that God is working. I am anxious to have this step behind us, but I don't want to miss any lessons in my hurry.

Saturday, September 13, 2008

Recovery: Day 5 (Noon)

We weathered the storm with no major incidents. We heard that a window blew out on the 7th floor, but we were fine here. We didn't lose power either, and we had TV until a little while ago. It was a LONG night though. Everyone was in the hall so whenever one woke up, we ALL woke up. They left the lights on all night, so we draped sheets over the top of the crib to try to keep out some of the light. Justin still was on oxygen at this point, so they extend the tubing from the attachment on the wall in the room so it would stretch into the hall. It didn't give us much room to move though, so I slept in bed with Justin to try to feed him more. They stopped his saline drip at about 10 pm, so they really wanted him to eat. He had some good diapers during the night, but he didn't eat well the whole time we were out in the hall. They did a couple of blood draws during the night and a chest x-ray this morning. His BUN levels are high, so he needs to increase his fluids. The x-ray showed his lungs are open again, so no more thumper therapy.

The chest tube is still putting out a lot, so they will leave it in for today and see how today goes. They want it down to about 2 ccs/kilo of weight/24 hours, I think. They are weaning him off oxygen, so for now we are off. His numbers are still staying up, about 93-95 %. He typically does well for a while and then drops, so hopefully this time will be better. All he's getting for pain is basically Tylenol with codeine, and then he's getting a couple of diuretics. All is oral now (necessary to be released).

They did say we are still under lock down, until Monday most likely. We can't even go from floor to floor without a badge. (I need to be badged to and from the milk bank.) We are back in our room now, and Justin is finally able to sleep. Spirits are still high, and the rain is still coming. We can see some damage from our room, but nothing too serious. The construction site across the street lost the sidewalk tunnel and crews are out clearing it off the road already. We took some pictures of our hallway adventure, including the ones of me finally holding my boy!

Friday, September 12, 2008

Recovery: Day 4 (PM)

Justin had to get a new IV because his arm was swollen from all the fluids he was getting. He has nursed a few times, but he is acting lethargic and not sucking well again. Other than that, Justin is stable and healing well.

The plans for Ike are well under way. It was a strange set of events that allowed Randy to be able to stay with me. They issued arm bands to every parent, and Randy happened to be downstairs when they were issued and he got one there, and I got one in our room. So he is receiving the parent food, and I get the tray from the hospital. At 9 pm we are all moving into the hall and Randy is going either to stay in the bathroom, or in one of the empty rooms. The staff is staying in the Clinical Care building between shifts, and they are being issued cots and were told to bring their own food.

My mom brought down a few more supplies and we are feeling as prepared as possible. Here's some pictures from today:

Randy in his bed for the night. We wonder if this is how Ken feels?

Randy holding the little man. Most of the wires he has are just EKG wires for continuous monitoring, nothing too serious.

Sleeping with the little man. We have spent LOTS of time like this!

Ten Years

An anniversary always makes one nostalgic. And this is a big one. Ten years ago today, during tropical storm Frances, Randy and I were married. (What are the odds??!) No one truly knows what they are committing to when they say "I do". No one plans to get divorced, no one plans to be unable to have children, no one plans to have a spouse who becomes disabled, no one plans to visit their child in prison, and no one plans to be sitting in the hospital with their child recovering from surgery on their anniversary.

I was reading a blog the other day about someone renewing their vows and she wrote how much more the second time meant because she believed so much more. When he said, "I promise to be with you in good times and bad," her heart soared because she could say, "I know! I believe you! I have seen it!" That is the beauty of marriage. I feel exactly the same. I know that Randy will be with me in good times and bad, because we have been through both. And I have confidence in the future.

I was inspired to watch our wedding video to be reminded what Randy and I vowed during the ceremony. We wrote our own vows and this is what we promised:

God has given you to me and I promise to cherish you as a precious gift, never to be taken for granted. With God as our guide I will build a life together with you, trusting his plan and seeking his counsel. I pledge to be your partner and friend, respecting you, honoring you, caring for you, and encouraging you, all the days of my life. From this day forward, I give you my life and my love.

We read the verse from Ecclesiastes that speaks about a cord of three strands not being easily broken (4:9-12) and my uncle, who was one of the preachers who married us, had us form a braid from cords running from photos of Randy and me, and from the cross. Our cords are gold, and the one from the cross is purple. It is a very clear and visual reminder that it is not just the two of us in this relationship. Well, at least it's not if we want it to survive. God is a vital part and the glue that keeps us together.

Today will be hard, no doubt. Tomorrow, not much better. I pray that God will be glorified through Ike, and that all of my response will be honoring and pleasing to God. I read Psalm 46 last night: "God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear...though the waters roar and foam." There is lots of roaring and foaming going on right now. And more is coming. For now, Randy is still here, and he has an arm band to make him "official" for today.

Recovery: Day 4 (AM)

Sorry this is a bit late for an AM report, but I wasn't quite sure when the night ended and the day began since we spent so much of the night awake. The great news is that Justin was able to nurse at about midnight! That is wonderful for us. During the night we had: 3 respiratory treatments, 3 bloods pressure/temp checks, 1 weight check, 1 chest x-ray, about 6 different medicines given (some IV and some oral), 2 blood draws, and about 20 monitor alarms. We have learned to silence the alarms VERY quickly!

Through it all, Justin did great. He managed to sleep through some and not others, but he never really fussed. We were prepared for some really tough times as he came of the strong pain meds and transitioned to less potent varieties. He ate like a CHAMP, like he hadn't eaten in oh, about 4 days! They were considering removing the second chest tube so we had to hold off feeding him this morning, but it is still draining, so we will try again tomorrow.

As of right now, Randy is still here, but they have come by to try to tell him to leave. We are trying to see if he can stay, but we are struggling with doing the right thing. Travis is well-cared for, but Randy is concerned about me and how I will hold up. We will be sure to give updates when we can about what happens.

Thursday, September 11, 2008

Recovery: Day 3 (Evening)

We made it to the regular floor at about 4 pm. Yeah! We are glad to be here, but the bad news was that we learned the hospital plan for the hurricane as we left ICU. Only one parent will be allowed to stay with a patient, and that parent must provide all food, water, and supplies for themselves for 72 hours. Fortunately, we do have that amount of food, but we really do not want Randy to have to leave. Unless we hear otherwise, Randy will have to leave at 7 am.

So Justin is doing well. He still has some amount of sedatives in his system and he is not able to suck right now. He wants to, but he cannot get it to work. He tries his thumb, the pacifier, and I have tried to feed him, and we cannot make it happen. It is now 8:45 pm and he is just starting to be able to get a bit of suction on his thumb. He sleeps for a little bit and then he wakes and cries because he cannot be comforted. I have been in the crib with him and that is the only thing that seems to help.

I was able to talk with Travis tonight and the first thing he said was, "Want to go to the hospital." It breaks my heart! It was SO difficult to tell him that he couldn't come, and that I couldn't see him. He wants mommy, and the evenings are the hardest times. I know Nana and Ami are taking good care of him, but I want my baby! I am so torn. I haven't seen Travis since Tuesday, and I don't think I will be able to see him until Monday probably. That's just not right! I thought that heart surgery was enough for us.

It really looks like Randy will have to leave, which may help with Travis, but it will REALLY make it hard for me with Justin. No one else can come help. And of course, tomorrow is our anniversary...ten years...and I won't even be able to be with him. I am hurting, and the only help is God. He will provide, and again I must give it all to him. I keep thinking that we have made it through the worst, but something else keeps coming up. I am being pushed to the edge, and without sleep I am close to falling. Please pray for us. Justin is in pain and it's a whole new thing for us. He cries when I pick him up because it hurts, and his throat is sore. I want to be here, but I want to be at home. I am glad Randy has been able to stay as long as he has. I am glad that he can be with Travis. God is stronger than Ike and I know that he will prevail.

Recovery: Day 3 (PM)

So much has happened today, and it's all good! They started out the day removing the CPAP machine and he did so good with that. He liked being free again. They did find out when they did the chest x-ray that the upper part of his right lung was collapsed so they ordered some therapy. We call it the thumper therapy. The respiratory therapist has one of the baby breathing masks with some tongue depressors taped to it. He uses it for pounding lightly on his back to clear anything that might be in his lungs and somehow to help it reinflate. I don't know how it works, but Justin LOVES it! He fell right asleep. We will be hiring him for our personal use when we leave here.

Then the fun started: We have removed one chest tube, the arterial line, the central line, the catheter, and both temperature probes. So that means no more drip medicines and the best part of all....I get to hold him! (When he wakes from his latest thumping.) Justin was so good with all of the lines being taken out. He nearly slept through the entire process. I think once we get the results of the chest x-ray and he wakes up I can feed him too. All he has left is one chest tube and we know we can leave ICU with that still in place. I think it might be to our benefit that we have the storm coming. They are trying to get as many babies as they can out of here because anyone left they have to move down to the 3rd floor.

It has been a whirlwind. I was so focused on making it through surgery that I hadn't given much thought to the recovery. I am so glad that God did and he set everything in motion for us long before. We have met lots of great people here in ICU, including a roommate with DS and another little girl born the day that Justin's surgery was originally scheduled. I haven't had much time to process much, but the overwhelming theme it praise and thanksgiving.

Here's some of the pictures from today:

Taking out the central line

Thumper Therapy

Our boy, free at last!

Recovery: Day 3 (AM)

It was an uneventful night. Praise God! His nurse said that he stayed asleep and was very peaceful. I hope he is learning something about sleep for when we go home! They stopped his sedation drip and his heart medicine drip (to help pump blood out so it doesn't stress his heart as it heals.) He woke up when I came in and he was not happy when we had to leave for shift change. But I think he was more just unhappy with me than in pain. The nurse said that often the babies sleep fine during the night and then when the parents come in they wake up and start complaining about being left during the night. The plan for the day is to remove the CPAP (breathing machine), take out the arterial line and the foley catheter, and shift from drip meds to IV meds. Randy and I were able to give him some oral heart meds and wash his face. It helps us to be able to feel like we are helping with SOMETHING of his care. He will not have dry lips on MY watch!

The huge problem coming is Ike. Wherever it hits will leave us on the wet side of the storm (east of where it hits, for those of you up north). We have evacuation plans for Travis and we are learning who is on the "ride out" team at the hospital. We know that we will get moved down to the 3rd floor if something happens and we heard that during Rita in 2005 the only hospital in the Medical Center that kept power was TCH, so yeah for us and clean toilets!

Please pray that the plan for the day goes well. We were able to get more sleep last night, but I had some crazy dreams and I woke up at 4:30 am. We will post more updates since we learned that we can use our computer in ICU.

Wednesday, September 10, 2008

Recovery: Day 2 (Night)

They have decided to keep Justin sedated through the night to give him a chance to become more used to breathing and for his throat to heal from the breathing tube. He is having a little problem regulating the sedative, and the amount has been raised and lowered several times. Once he wakes up, he fights it a lot and it takes more to get him back asleep. We are going to try to get more sleep tonight since we know they are going to keep him sedated.

Recovery: Day 2 (PM)

Well, the day started out with some real promise. When we got back up to see Justin, he had gotten rid of the epinephrine, and they were ready to extubate him! So that was the first thing we saw. That was at 8 :15 this morning. Then they took out the LA line I mentioned. At about 9:30, he woke up. And he woke up with a vengeance! It was not good. His oxygen levels started dropping and he was really struggling to breathe. His bp was the highest I have seen, and his heart rate was making every alarm go off. He was screaming the only way he knew how, and it came out as a hoarse cry. He needed more oxygen so they decided to put on a canula that gives him a puff of oxygen, which ends up being about in between the regular nose canula and actually being intubated. But they couldn't do it quickly enough for me! They were so calm (very good for them, not good for me) but I wanted them to move faster, to make my baby feel better. It is difficult for the canula to stay on, and he was fighting it for a long time. It took about 2 1/2 hours to get him calmed down and asleep. He was screaming and fighting and I couldn't do anything to help. I felt like the most inadequate mom because I couldn't calm my child! Randy did really well and he managed to rock the bed in a way that put him to sleep. He woke an hour later and wouldn't calm again, so they increased his sedatives and pushed more morphine. When all the medicine finally hit him, he went out like a light, and he has been asleep since. It has been 2 hours now, and he really doesn't show signs of stirring. There was so much that was supposed to happen (in my mind) but it didn't work out that way. They were supposed to get rid of more lines, I was suposed to me able to feed him, we were supposed to be closer to a regular floor than to another day here in CVICU. But my plans are not God's plans, and I KNOW which has to change. My friends called to remind me to be strong and courageous, and that will be my mantra for the day. Here is a picture of him after he was extubated, but before the other canula was added. He has his pom pom hat on!

I want to hold him. I want to calm him. I want him to know how much I want to make it all go away. It takes every bit of restraint I have to keep myself from jumping in bed with him and grabbing him to hold him tight. Or to pull all the lines out and take him away. I keep singing, but I get too chocked up to get the words out, and I know it is not helping him any! God knows what I am feeling, and he knows my heart. He knows what we can handle together, but I still wish that he didn't think so highly of me.

Recovery: Day 2 (AM)

We had another good night. They were able to wean Justin off more of the drips, and lower his vent. I really like our night nurse, Tracy. She explained a little more about what needs to happen for us to "graduate" to the regular floor, and then to get home. First is the vent. He has to be extubated for us to move back to the floor. Also, to be able to take food. They will try to start a feeding tube if he stays intubated so he can get more nutrition. They should be able to use breast milk in the feeding tube, maybe with an extra kick of nutrition. Then he cannot be on any drips meds. He needs to move from drip meds, to IV meds, and then oral meds to go home. When they stop the drips meds, they can remove the central line in his neck. They will take out the arterial line which provides a continuous bp reading, and the catheter as well. He can leave the CVICU with the chest tubes, but it sounds like that is the only line that may remain.

When we were in this morning before shift change, they started talking about taking out the LA line, which is the heparin drip into the left side of his heart. That's a start! They hope to do that about 8 am today. Then they will start trying to get off the epinephrine, which is necessary to get out the breathing tube. It looks like today we should start making some progress today. I also have been able to understand a bit more of how much is the right amount of movement, and when he is in distress, and when he is just awake. I am actually fine with his body from the neck down, but now that he is awake and he looks at me, it breaks my heart. The first time he cried, I couldn't help but cry too. He is pleading with me to help, and I can't make it all go away. It's difficult to find a spot to touch him without making him wiggle too much. (He's ticklish like his mama!) I will do much better when I can hold him and cuddle him.

Hopefully we can take some more pictures today. Yesterday he really looked the same as on Moday evening. He is wearing his pom pom hat, and that makes me more cheery if nothing else!

Tuesday, September 9, 2008

Recovery: Day 1

Justin is doing very well. He slept all night without needing any sedatives, and only had a few issues with his blood pressure. They started him on some medicine to help raise it, and he has been responding very well. We were able to get in to see Justin this morning before shift change and we were able to his first flutterings. He started moving his fingers and blinking his eyelids. After shift change when we came back, he was definitely awake! He was moving his arms and his head. It was so good to see. They did another echo today, but we haven't heard the results. Randy was in while they were doing it and he said it looked so much more normal than the other echos. He was able to see 4 chambers and the right color of blood in the right places. They have moved him from side to side so he doesn't get bed sores. They have moved some of the monitors to other fingers and toes to avoid irritation.

Travis came down to visit today. Nana and Me-Me and Pop brought him down and it was such a relief to see him. We got a great report from yesterday! Travis didn't have an accident, and he had great fun with his friend who came to stay. We went and watched the train in the Abercrombie building. It's a huge village set up with a carnival and playground and lake with lots of little people. It has buttons for the kids to push to make the trains run, and Travis was fascinated with it!

We went for lunch with Travis and then napped at our hotel. He loves the construction site that is next to the hospital. It has lots of cool cranes and bulldozers. That plus the train that runs through the the med center are enough to keep him happy for hours. Fortunately he didn't ask to see Justin. We will wait until he gets out of ICU for that.

I think today was tougher than yesterday. I felt so torn between everything and everyone today. That's why I had to leave this post until late tonight. I didn't get to spend as much time with Justin has I wanted today. Yesterday I knew that Travis was okay, and I had someone being my communicator, and all my focus could be Justin. But I know that Travis needed me, and I had to pump milk, and make phone calls, and I could NOT stop yawning! I was able to get a nap with Travis, but still I feel like SOMETHING was always neglected. I haven't been as good with letting God guide the day. That has been the difference I think. I had a visitor today who helped me refocus, and that was the jolt I needed.

If anyone wants to come see Justin, you may come to the ICU. Come to the West Tower, 17th floor and speak with the receptionist. She will call us to come down to get you. If we are not in ICU, you can check in the waiting room on the 17th floor, or call our cell phones.

Monday, September 8, 2008

Out of Surgery

We got the call that he was out of surgery at 6:30. We had to wait until 8 pm to see Dr. Morales. He was able to tell us what took longer than was expected. When he separated the valve to create two, there are supposed to be 2 muscles for each valve. On Justin's left side there was only one. That causes a tightening and constricting of the valve. Dr. Morales cheated the splice a bit to the right side to give it some more tissue. It COULD be an issue later, which would require valve replacement, but they don't like doing that to an infant. He feels like it was a good fix, and now he's not worried. Dr. Morales said that it is something that needs to be closely monitored.

We were able to get to see Justin at 8:30 or so. He looks FANTASTIC! We were able to see a picture of a friend's child after his surgery last year, so we knew what to expect. I have a picture, but I want you to be prepared. It actually looks worse in the picture than in person. (Cindi confirms this.) The nurse explained all of the lines and what everything does. He is only on one medication, but they expect to add another one before we leave. The breathing tube should come out tomorrow, and the rest of the lines slowly after that. We are tired and going to get some rest. The nurses say he will need us tomorrow and to get our rest now!

5:30 PM Update

He made it off by-pass! Dr. Morales said that it was taking a bit longer because he had a little different anatomy. (We'll ask about that when we see him.) Soon we should be able to talk with the doctor and then Justin will go to CVICU. We will almost certainly hit the shift change window, so we probably won't be able to see him until after 7:45.

We have been so encouraged by all the reports we have gotten. There have been no complications, nothing unexpected, and the surgery has been the "routine" event we were hoping for. It is so much more than we could have imagined, but God knew exactly what would happen. We are so happy that HE is in control, and NOT us!

3:45 PM Update

Justin is not quite off by-pass yet. The repairs are finished, and they have done the first echo to check the seals. Once Justin warms a few more degrees, they will take him off by-pass and check the pressures in the various chambers. They anticipate being closed at about 5:30 PM. After that, we will be able to visit him in the CVICU. They do shift change from 6:45 to 7:45 morning and night, so we hope to get in before that happens.

1:30 PM Update

Justin is on by-pass now. He is doing great with no complications. They have fixed the valves, and now are moving to the walls. They expect to be finished with that by 3 pm and then they will put in the drainage tubes and then check to ensure the patches are holding. Then they anticipate closing by about 5 pm. We are holding up well, thanks!

10:30 AM Update

All of the lines are in and there have been no complications so far. When the nurse came out to talk with us, they were just making the incision. She expects that he will go on by-pass sometime in the next 2 hours.

A few weeks ago I was at a Ladies Dinner for our church and the woman speaking mentioned the song "As the Mountains Surround Jerusalem". It's a very simple song that just says, "As the mountains surround Jerusalem, so the Lord surrounds his people". I have been humming that chorus to myself off and on for the past few weeks. Last night I was thinking what that would feel like. One of the times that Justin was awake last night we laid him in between us on the barely-big-enough-for-one, not-big-enough-for-two, for-sure-not-big-enough-for-three daybed that we were sleeping on. I saw the image of what surrounding would look like. We were curled around him watching him, protecting him, and simply fascinated with him. I think that is a simple version of how God surrounds us. Justin cooed and smiled and clearly felt safe. That is feeling I am striving for today.

I finally got around to getting some pictures. Here is Justin before surgery:

Blast Off

Yes, we have begun. The third time is a charm. They came to get us at about 8:30 and we had some people from church pray before we went up. We were only there for a short time, and the anesthesiologist took Justin away. 9 am was our start time, so we expect about 5-7 hours from then. They were very good about making sure we understood everything that is going to happen. They are going to fix his heart, that's the most important. We love everyone who is praying for us, and we couldn't do it without you.

Long and Short

That describes our night. Long on darkness, short on sleep. Since they were able to get in an IV, our nurse started a saline drip at 1:15 this morning. She entered all the settings on the machine outside our door, and let me tell you, beep, beep beep, beep, is NOT a calming sleep-inducing sound. So we were very awake, and so was little man. So I took the opportunity to feed him one last time, WELL before our 3 am cut off. Then we were awakened again at 3:50 for a bp check and she opens the door, and says, "Oh, do you want to skip this one?" Uh, YEAH! Then little man woke at 4:50 and wanted to eat. Uh, so sorry! But he was awake, and it took a while to get him back asleep. Then anesthesia came in and woke him up to evaluate him, and while she was here our nurse came in and said that they got a call from the holding room that they were going to be late because another emergency came up. Only an hour so far, and thankfully, Justin was able to go back to sleep. We're in our room still, bleary-eyed, but hopeful!

Sunday, September 7, 2008

A Walk in the Park

We are all settled into our room for tonight. We are old pros at this, so everything went very smoothly. We arrived at the hospital at about 2 pm and we had to check in through the ER. Every sick child in Harris county was in the lobby this afternoon. As a child was walking past Randy holding Justin he sneezed and Randy told Justin not to breathe. Do you think that helped?

We got our chest x-ray and EKG and the blood and urine samples. They got the vein on the FIRST stick! That was a huge answer to prayer. Last time they stuck him 3 times, and still didn't get an IV started. They taped is arm all up with the board to keep it from coming out, but they left his thumb out. Big mistake! He has been going after that thumb like crazy! He is asleep now, and we can expect a visit at midnight to start IV fluids and then I will feed him at 2:30 and THAT'S ALL! We confirmed that with the cardiovascular charge nurse.

We have had a long day today. Travis woke up at 5:30 and so we got up and made cinnamon rolls. We made a double batch and brought some with us, so the first few people here in the morning to see us get breakfast! Then we had some family time and went to the park. Travis had a blast and Randy snuggled with Justin as he took a nap. It was beautiful weather and we enjoyed it thoroughly.

This will be it. Tomorrow they will take Justin from us and I will have to wait. I have to keep my focus above and trust that God will care for him tomorrow and beyond. All I know is that the instant I take my eyes off God, I feel a weight on my chest and the burden seems unbearable. When I look back up, I feel lighter. It's not only spiritual, but physical as well. I know that this is only a blip on the radar of Justin's life, and I look forward to the rest with eager anticipation.

Saturday, September 6, 2008


Letter to the editor from the Houston Chronicle: Sept. 3, 2008

With the announcement that her 17-year-old daughter is pregnant, how can Sarah Palin possibly think that she can continue her run for the Republican vice presidency? The GOP players have been quick to praise her family values, but I question the values of any woman who would leave a special needs infant and her pregnant teenage daughter to gallivant around the nation in a frantic round-the-clock campaign for the vice presidency.

Palin's family is in crisis and, at the risk of sounding like some moldy leftover from the 1950s, her place is at home right now tending to her 5 children. Women can have it all. They just can't have it at the same time.

-Betsy Dolan
Sugar Land


I will only say 2 things:
  1. What if it were a man in this situation?
  2. Who is she to say what another person should do?

Potty Training

So we were sitting at home with nothing to do, so we decided to try more potty training. Travis agreed (very important!), so we went for it.

We already had success in the bath at night, so we tried the morning. We tried several times to catch him right out of bed, but we haven't be able to do that yet. So we set the timer and sat on the potty every hour, and he did it every time! We have only had 3 accidents all week. He has earned 2 Thomas trains for entire days without an accident, and almost an entire bag of starburst candies. He has even been dry after naps for the past 2 days. And while I put a diaper on when we got out, he has been dry when we returned home. We did have one episode of 2 days without a #2, and that caused a bit of trauma, but the bathtub potty time solved the problem for us. I would not say that he is done (far from it!) but we are VERY encouraged. I am hoping that Travis will go relatively easy because I know that Justin has the potential to be a bit tougher. I have heard from other DS parents that the girls are only a bit delayed with potty training, but the boys tend to be significantly longer (maybe up to age 7-8 and even then maybe not at night). Of course, Justin may be earlier, but I am not thinking about the bridge yet.

When Justin wakes up from nap, sometimes he and Travis will play a bit in the crib. Yesterday I would say that they had their first wrestling match. Travis was very squirmy and he rolled all over and Justin was smiling and laughing. It was so funny! I tried to get a picture, but it doesn't do it justice! It looks like Travis is sticking his finger in Justin's mouth, but really it's not that bad. And I always stand close by, so no worries!

Wednesday, September 3, 2008

Play it Again, Sam

Well, we are going to try again. We are back in surgery mode for the third time, and I feel a bit like we are crying wolf. We believe it just as much as everyone else, and it is difficult to be so prepared and then to be put off. This time I think it will happen. I cry and talk to God every night at Justin's crib, looking at my sweet baby and wishing that I could take this from him, knowing that I can't and that that is part of the teaching and molding that God is doing in me. I want to hold him every minute of the day and look in his eyes and tell him how much I love him. He sits on my lap and watches Travis play and then he turns his head up to look at me, as if to check to see if I am still there. I am, and so is God.

Tuesday, September 2, 2008

What do you Think?

I spoke with another DS mom today about sleep. Justin has learned to roll front to back very easily (although he only goes one direction) and it seems to be affecting his sleep. He rolls himself over during his nap and wakes himself up and won't go back to sleep. When Travis did this, it was during the night and one night he woke himself up (and thus ME) about 12 times. So that next day I determined to teach him to roll back to front, which he did, and the next night was fine. But that has not happened with Justin. I know things will take him longer, and I am okay with that. I was just wondering if this was going to be a long phase. She couldn't quite remember, which gives me hope that the memories didn't burn into her brain. Travis still isn't a good sleeper, and I wonder, do you think that God has given me 2 poor sleepers so that I never wander too far away? I pray for sleep daily, and maybe if they sleep, I will think I can do it on my own. If I stay bleary-eyed and without focus, I will be forced to lean on God to make it through each day. If there EVER was a fear of that!