Saturday Night

So far Braden has tolerated all of his feeds and we're almost to where he was a few days ago in terms of volume intake. Tomorrow we hope to have more answers to our questions on the situation. We did not get to see Dr. G. today, and she is the one we need to speak to to get all of our questions answered. All we know is that the pylorus muscle at the bottom of his stomach is inflamed....why, we're not sure. They're not sure if it's viral (they're keeping an eye on his temp)or if it's inflamed due to his high caloric diet and the 1/4 tablet of aspirin he is on. Hopefully these questions will be answered tomorrow. As far as this being common in kiddos...I'm not quite sure. If something like this happened in a "typical" baby, they may be able to just ride it out. Because of the situation Braden is in, having simply the sniffles could set him back a day or two or even a week.

Well, we're off to RMH to get some sleep.

Love,
Steph and Rich

Saturday Update

Well, it seems that the mystery is somewhat solved as to why Braden has been having some feeding issues. Dr. G. ordered an X-ray of his belly last night and the film showed signs of "Pyloric Stenosis." This is when the passage between the stomach and small bowel (pylorus) becomes narrower to the point where nothing can pass through the stomach to the intestinal area. Surgery is the only thing that can correct this. An ultrasound was ordered this morning to make sure that this is what it was/wasn't. The ultrasound showed that it was NOT Pyloric Stenosis, but that the pylorus muscle was inflamed. They're not quite sure as to why this occurred, but they're going to keep a close eye on him and see how he tolerates his feeds. They decided to just give him straight breast milk (yes, I'm still vigorously pumping) without any formula fortification, and they've also stopped giving him his daily 1/4 aspirin.....just a few things to give his gut a little relief. He was just fed a little bit ago and he took 42 CCs....they're starting out slow and will work up to the amount he was eating a few days ago. SO, it looks like we'll be here for a few days. Yes, there is relief....it wasn't anything with his heart and there is a "diagnosis." We will be asking many questions though.....could this happen again? what are the possible causes, etc?

We will continue to post over weekend. Thank you for your prayers and positive thoughts.

Love,
Steph

We're Back.....

Unfortunately, we're back at Children's right now. Braden's eating habits have decreased to the point of possible dehyrdration. Right now we're waiting for a room to open up on the 4th floor. Hopefully we'll have some questions answered as to why he's not wanting to eat. It's possible that the ng tube would have to go back in. Please continue to pray for us. We're a little frustrated and discouraged right now (to say the least).

Thanks,
Steph

The Week's Events

Hello all,
First of all, thank you for all of the warm welcome-home wishes. This week started out great with Braden increasing how much he ate and gaining good weight. Then, yesterday we noticed he was sleeping more, not waking up to eat, and not eating as much as he had been in the days prior. We were in constant contact with the cardiac nurse practioner at Children's yesterday, and she told us to bring him into the ER to check him over. Finally, at midnight we were given the good news that all of his lab results and X-rays came back okay. Needless to say, we didn't get home until 2am. We talked to Dr. G. last night as well and she doesn't seem too concerned. She's "chalking" this up as "normal" baby behavior.....he's making his own schedule with new sleeping and eating patterns. The concern we still have though is that Braden needs to take in a certain amount of fluid each day to stay hydrated. We spoke with Dr. G. again today and she said there's still nothing to really worry about. She told us that he's taking in the minimum to stay hydrated, so we shouldn't panic. We hope and continue to pray that Braden keeps up with his eating now that he is home.

We will continue to keep you posted over the weekend.

Thanks for checking in,
Love Steph

Monday Update

Braden is doing pretty good today. He continues to eat like a champ. He has blown his eating goals right out of the water in the last three days. We were given the go ahead today to up the amount of food he takes in each feeding and he is gobbling that up too. He took 85 cc's today, and a week ago 50 was a struggle.

He is still pretty fussy at times which is to be expected with his constant battle with his reflux. I can't imagine this is any worse than a "normal" kid though at this time.

We spent most of the day on the phone with insurance people, our visiting nurse stopped by, and of course changing diapers. Steph and I alternated feedings and naps too.

Anyways, just wanted to drop a quick line,

Thanks for checking in,

Rich

Home Sweet Home

Hello,
Braden has adjusted quite well to his new lifestyle at home. He had a great night last night, and mom and dad are quickly adjusting to middle of the night feedings and diaper changes. We're not sure how Snickers the cat is taking all of this in though....he's quite curious of Braden and not sure what to think of being second in line now.

It's been nice having Gramma Patsy, Auntie Marci, and Great Aunt Shelly here to help out, so we can get a nap in and organize our house a little. We were greeted yesterday with a nice sign in our yard welcoming Braden home....thank you Uncle Bob and Aunt Joy. Grandma Lois and Grandpa Harvey also surprised us with balloons, flowers, and a little house cleaning before our arrival.

Thanks for checking in,
Love Steph

Houston....The Eagle has Landed!!!

We are home.

He made it all the way into town before he started fussing. It was feeding time of course.

I will put some new "home" pics up later on today.

In terms of visitors:

You can't be sick, or have been around someone that has recently been sick. Braden has not and will not receive any immunizations until after his second surgery. Even a common cold will possibly put him back in the hospital if he loses weight or dehydrates.

You are welcome to come over, give us a call and let us know, and please use good judgment about his health concerns too.

Thanks,
Rich

An update...

WE ARE COMING HOME TODAY!!!!!!!!!!!!!!!!!!!!

Two days ago they were slating us for mid-week next week or Friday. Now we are going home today, unbelievable. That is how much he has improved in the last couple of days. He just decided that he was going to chug down nearly every bottle he was given and gain that weight.

We are cleaning up our room at RMH right now.

Checking out of the hospital is a long process we probably won't be out of here until 4pm today.

OK gotta get back to work here.

We will update you about visitations to our house soon. There are specific things we have to tell people first. But we will do that later.

Thanks again for all of you prayers and support through chapter 1,

Rich

An addition from Steph:
I'm absolutely overcome with emotion right now. It's hard to write or speak without a grin from ear to ear or tears of joy in our eyes. We can't believe this day has finally come for us. I will leave you with a message I received in a card from a dear family friend of ours:

"One of the most difficult things to do in life is to 'let go.' We think that we have to make all the decisions, and often the right choice is not clear. Prayer is always the answer. As we put our faith in God and trust Him to show us the way, we experience what it means to 'let go' and 'let God.' "

Our faith has helped us get through these last 37 days. We thank you all for reaching out and helping us in your own special way: your prayers, messages, cards, and warm, positive thoughts. Thank you for standing beside us through our first journey as a family. As Rich mentioned, we will continue to post and share our exciting homecoming news.

Love you all,
Steph

Homecoming

Good evening,
Well, Dr. G. (the intensivist who has been following Braden) said the magic word today - "HOME." If Braden takes in enough volume (eats well) over night and gains weight, we can go home TOMORROW!!!! We're holding our breaths, however, because it still all depends on the eating and weight gain. We couldn't be happier to place a bookmark in this chapter of our lives. We can't quite close it yet, but at least we have one surgery and recovery behind us.

Dr. G. also spoke to us about his next surgery. She is suspecting that he will probably have surgery 2 in early December or January. From now until then, he will be closely monitored by scale, pulse ox, weekly "home nursing" visits, and bi-weekly visits to the clinic for check-ups with our cardiologist. It sounds like a lot, but it will just be a part of our daily routine we will quickly get used to.

We will post ASAP tomorrow to let you know if we're heading for home.

We thank you for your unending support through all of this,
Steph

Happy Friday!

Braden had an excellent night with his feeds and took both bottles this morning. He also gained weight - YEAH! Since it's the weekend, they have to take into consideration that the pharmacy here is closed on weekends. What this means for us: we may know today when our target home date will be, so they can figure out when we can go and pick up Braden's medication. They have not done rounds yet, so hopefully we'll get a clearer picture as to when we can bring our lil' man home. I'll post later today when/if I hear some more news.

Love,
Steph

Thursday Night

Good evening (now close to morning),
Braden has had a great night so far. He did great with all of his feeds today. He even sucked his 10pm bottle bone dry (first time). He's been really close to finishing many of his bottles, but this was the first time he didn't have a drop left....yeah...we are so proud of him! I know for many of you, it's hard to imagine how a baby would have difficulty eating. It's been amazing for us just to watch the progress he's made from where he started 2 weeks ago. He's had to completely learn how to coordinate sucking, swallowing, and breathing....the natural instict he lost being intubated and unable to eat for so long. This re-learning process would tucker him out so quickly...it's equivalent to us working out for a couple of hours (8 times a day). Although he still struggles at times, it has become more natural for him to coordinate all of the motions when he eats now. Oh happy days!

Good night,
Steph

Thursday's Progress

Good afternoon,
Braden had his echo this morning and will be getting an EKG this afternoon. We haven't received the official report from the echo, but the cardiologist on staff said that from what he saw it looked great. In order to get the best images during the echo, Braden had to be sedated. This threw the eating schedule off a bit and they warned us that he'd be a little sleepy during the day, causing him to eat less. Well, he has surprised us once again....his eating has been great so far, and the nurse who's working with us is very impressed with his eating today.

During rounds, they discussed where Braden is at with eating, weight gain, etc. The nurse practitioner was very pleased at how much he ate yesterday on his own, but he still needs to keep gaining weight in order for them to put a "going home" date on the calendar. He actually lost a smidge of weight from yesterday to today.....he ate enough to stay hydrated, but not enough to gain weight. Hopefully they'll be able to set a home date for us in the next few days.

I'll try to post later tonight on how the day has progressed.

Much love,
Steph

So long feeding tube!

Hello,
Braden got his feeding tube pulled out just before his 10am feed. He took almost his entire bottle by mouth, and he's hanging out right now with G'ma Lois. He's really alert and very comfortable. We are SO, SO happy about how the morning is going so far. Thank you for continuing to keep Braden in your prayers - like I've said before and will continue to say..."The power of prayer is amazing."

G'ma Patsy and Auntie Marci will be coming to visit this weekend. Auntie Marci hasn't seen Braden since he's been out of the PICU. Heidi and Christian are taking the ferry over Lake Michigan and will get to meet Braden for the first time today :-)

They haven't set a "home" date for us yet, but we know it's getting closer. They will be doing his echo tomorrow....this is one big step before they send us home...they check to make sure everything is a-okay with the heart before he is discharged. We're also learning how to weigh him and how to check is O2 saturation with the pulse ox that we'll be taking home with us.

Thanks again for keeping us in your thoughts and prayers everyday.

Love,
Steph

Evening Update

Phew....another day come and gone. I'm just heading out and wanted to quick update. Braden had a great day. He took almost every bottle on his own. He is truly a fighter....even with battling the painful reflux, he managed to eat almost everything he was given without giving any of it back - HURRAY! Tomorrow morning the feeding tube will be pulled again. We have faith and confidence that he will continue to eat well and keep that feeding tube out (for good). With the feeding tube out, we hope that it will take care of some of the reflux pain. Thank you for your prayers and positive thoughts.

Good night,
Steph

Tuesday's Progress

Hello,
Our little man had a rough night last night with the darn reflux. You can tell he is in pain and it's difficult for him to get comfortable after he eats. He has managed to keep everything down, but is having a hard time tolerating the reflux. Dr. G. came in and wanted to pull the feeding tube today. We know that this will help with the reflux, but I want to leave it in one more day just to make sure he's ready. We know what happened the last time they pulled it...we don't want to go there again. The speech path. we've been working with feels more comfortable leaving it in one more day as well. She wants to see if he can endure two days in a row taking everything by mouth. Sometimes they can do it one day and then they poop out the next.

I'll try and post later today/tonight to update on how the day has gone.

Please keep us in your prayers as Braden tries to eat on his own while battling the icky reflux.

Thanks,
Steph
PS.....I'm trying really hard to find some LaCombe in this kid.....I carried him for 9+ months and then he comes out looking every bit like Rich :-)

New Pictures

Older Pic with the nose canula still in. It is hard to tell from this angle but that is a mohawk on his head. It stands up like that all the time.











New Pic from the weekend. Fresh off his bath.
You can see his scar. The bottom of the picture you can see the part of the scar that is healing where they had to reopen it to let some extra fluid out. It is healing nicely. The scar seriously looks like a fingernail scratch. It will get bigger and wider with the following two surgeries.

Thanks keeping us in your thoughts,

Rich

Monday's Update

Hello,
Braden had a great night last night, and has had an excellent day today. He took his entire bottle by mouth today at 11am and took 56 out of 70CCs at his 2pm feeding. He's still managing to keep everything down...phew...we are so happy!

Our little boy just keeps growing. He's up to about 9lbs 2 oz. It's hard for us to see the growth, but we've had two people comment today...they haven't seem him lately and commented on how chubby his cheeks are getting. Rich has the camera and I think he'll download some more pics of our lil' cutie pie tonight.

As for the "H" word (home). We heard whispers of it today. If he keeps up the excellent work this week, they mentioned early next week. Yes, that's one more week here, but we're just so happy he's making progress. It's hard to believe that we've been here 4 weeks today. When the doctors mentioned the 3-5 week recovery, they weren't kidding!

Thanks for continuing to keep us in your thoughts and prayers,
Love,
Steph

One Month Old

Hello,
Today marks Braden's one month birthday...one of his nurses even made a cute little sign and hung it from his crib :-) So far, he's doing great with his feeds. We've fed him 3 times today, and he has taken down a little over an ounce each time on his own.....without one urp! He also seems much more comfortable after he eats. He's taking about an ounce much quicker than he has ever before, so we're hoping that in the next few days he'll build enough endurance to take much more on his own. Rich and I are going to go have some dinner before he leaves for the night.

I'll post tomorrow sometime.
Love,
Steph

Morning Update

Braden has done well this morning. The doctors made the call during rounds this morning to start feeding him with his bottle again.

He took 45 cc's in 10 minutes or so! It was the fastest that he has ever drank his bottle. There was only 50 cc's in the bottle and we are going to build back to 70 cc's today over the course of the next couple of feeds. He got a little fussy after chugging so fast but he calmed down after ten minutes. There was no throwing up this time which was a huge relief. If he continues to eat without spitting up mass quantities like before that would be a huge step in the right direction today. It also would mean that the reflux meds are doing their job.

Thanks,
Rich

p.s. Braden said that he wishes his team the Chicago Bears good luck today as the play the much improved Detroit Lions. The only two Lions fans he knows are "Uncle" Joe Benson and Dennis Eisele. He said he is in for $100 bet and will give you 3 1/2 points. I don't know where he learns this stuff...

Another Rough Night

Last night the "significant reflux" continued. It was getting to the point last night that everything that we put into him he shot back at us. Being that he wasn't keeping anything down they had to up the amount of the IV going into him to keep his fluid levels up. They also had to put a machine back on that continuously feeds him his milk too. So now for the time being he doesn't even drink out of the bottle. They keep telling us that these aren't steps back, but sideways....I still haven't bought into that theory personally.

It is going to take a day or two for the new heavy duty dose of acid reflux med (prevacid, not prilosec) to start to work. Then we can go back to the bottle and start with that again. You can tell the reflux is painful the way that he fights and kicks and screams for 20 minutes at a time. The horrible thing about it all is that you can't do anything to settle him down. The only thing that you can do is to prop him up and let gravity do the work. It is so frustrating to see him throw up continuously like this, and see him be in pain, and then to top it off you can't do anything to help him.

Steph and I were bouncing off rock-bottom last night when we left about 1 am to be honest. The last couple of days have been a huge roller coaster and test of strength. Today is a new day though, and he seems better. He is awake and alert and not fussing. I got to give him a bath today. That was fun and he really liked it. So Snickers the scuba kitty will definitely have a bath buddy when we get home. (for those of you that don't know, our cat loves the tub, well and the toilet too)

Today is going to be a better day. We can tell already.
This picture is from 2 days ago before the tube went back in and the IV. This pic is courtesy of G'ma Patsy.

Thanks,
Rich

Friday's News

Hello,
Well, it looks as if Braden will be getting a room now all to himself. We just said good-bye to his neighbor that shared a room with us this past week. Although we are very happy for Samuel and his parents that they are at home now, it was a little sad to see them leave. We were finally able to connect with a family that was in a similar situation as us. It was so nice to be able to share our story as well as understanding their frustrations, worries, and progress each day.

As Rich mentioned in the last blog, Braden has significant reflux now. It's such a catch 22. Obviously anyone would gag and reflux if a tube kept that sphincter muscle open at the end of your esophagus. BUT, without the feeding tube, Braden wouldn't get enought fluid, etc. Yesterday, I hit a wall....there were so many people in and out, offering advice, trying to tell us how to better feed Braden, etc. Just when you think there's not one more person you could possibly meet, three more people come in and introduce themselves. Names? I can't even remember his nurse's name half of the time. Would this be considered maxed out? I still have very positive thoughts about everything, but some days are a little more frustrating than others. Rich and I took a break tonight and we're going to go fetch some Chinese food (and maybe even a beer)....some of the smallest things can be the greatest treasures :-)

We will probably post sometime tomorrow to update you all on the feeding scenario. During his last feed, he didn't puke at all....we're hoping he's handling everything better now.

Much love,
Steph

Rough night

Braden had a trouble keeping his milk down last night and kept throwing up. This means that he was getting even less fluid than before. So now the doctors have put an IV back into him to get him back where he should be.

They think that all the problems are because of acid reflux right now. They are switching him from Zantac to a higher dose of Prilosec to combat the reflux. We also have to make sure to keep him vertical after feedings for 45 minutes so gravity can help keep the reflux down.

They really don't know why so many of their heart patients go through this, but it is normal and expected. So now we will keep the IV and the feeding tube in until Monday or Tuesday and see how he does.

Last night was long and stressful. Today will be too, I am glad I am here today, to be here with my family. We were supposed to be getting training for things to do at home during the day today. As long as he continues to take 2 steps forward and only 1 back, we are still making progress, I guess.

Thanks,
Rich

The feeding tube is back

Unfortunately the feeding tube had to be run back into his nose and down into his tummy today just as I got here after work. We are trying real hard not to view this as a setback, but as a strengthening precaution. It is kind of similar to when he had to have the breathing tube put back in for a couple of days to get strong enough to come off of it.

So the plan now is to keep giving him his bottle like we have been doing and then what he doesn't eat gets poured into the tube. The big problem, like Steph mentioned before, is that if he doesn't eat enough he will get dehydrated. Dehydration leads to thicker blood and possible clotting of the gortex tubing in his heart and then death. So it goes without say, they want to be as careful as possible. These precautions make them the best at what they do, we totally understand and trust them.

Braden is nowhere close to being in danger. He is still way ahead of schedule and doing great. They have certain goals for the eating program and he was very close to meeting the minimum standards to keep the tube out. He just came up a little short.

So with a couple more days of getting stronger and rehydrated they will pull the tube out and we will try again. The second that someone mentions home we take a step back, that's the way it goes though right? This time when the feeding tube comes out he will surge forward and do well, just like when the breathing tube came out for the last time.

We are so lucky we are where we are at and to be surrounded by the competent professionals that are the best at what they do.

Thanks,
Rich

Thursday's Update

Four weeks old today....phew, where has the time gone? Well, he's being a little stinker again with his eating today. It looks like we'll have to retry the feeding tube to beef him up for a second go around without it. The intensivist who's been following Braden's progress pulled a few strings to let him try ONE MORE feed on his own to see if he improves. The doctor and nurse practioner are not at all discouraged by possibly having to put the feeding tube back in. He's actually doing much better than most kids at this point with his eating. If he does get the feeding tube back in today, we can retry without it this weekend. That still leaves us the early part of next week (MAYBE) to go home. I'm still very optimistic about all of this....although it is disappointing that he may have to get the feeding tube back in for a bit. They're also looking at beefing up his calorie intake per feed, so he'd have to take in less volume each time. Breast milk only has 20 calories, so right now they're fortifying it with formula so he gets 24 calories....they're looking at beefing it up to 27 calories.

I'll post later today to see what the verdict is on the feeding tube. Please keep praying for his strength and endurance during this feeding process.

Thanks,
Love Steph
PS.. JJHS staff, I got your card yesterday...thank you for all of your warm and positive thoughts....I do miss you! I even miss Bruce's good morning messages :-)

Eating Update

Keep sending those prayers....they're working. He started out eating only 20 CCs this morning....then 30....then 45.....now, with his last feed, he chugged down 65CCs (just over two ounces). We're VERY happy with this and we're hoping that he keeps up the good work!

Grandma Patsy made it down here safe & sound and got to finally hold her grandson......a very precious sight.

We'll either post later tonight or tomorrow morning on how the feeding progress is going.

Love,
Steph

Eating Assistance

Good morning,
Our little champ is struggling this morning with his eating. He's barely taken an ounce for both of his morning feeds. He HAS to eat much more than this at each feeding in order to keep that feeding tube out. If he doesn't get enough fluids in, he'll dehyrdate.....less fluids in the body means less blood flow through the heart..... this can then cause his shunt to close. This is why it is SO important that he takes in enough fluids daily. Getting the ng tube back in means that he'll have to keep it in for a few days. Then, once it's pulled, it'll take a few more days to see what he eats on his own. In so many words, this is what will keep us from going home. Please pray for Braden's strength today. Please pray that with God's guidance, Braden will be able to eat enough in these next few days to prove to us and the doctors that he can be a good, independent eater!

Thanks,
Love Steph

Busy Day.....

Hello,
It's been a busy, but good, day for us here. Braden got his feeding tube out this morning, so hopefully he can keep up with the amount he needs to eat each day on his own. We're so excited to see that tube gone :-) The doctors are so impressed with his weight and size. Heart babies, on average, usually don't come in Braden's size . He's about 8lbs 12oz now. Our new little neighbor boy is in the 6-7 pound range. It's amazing that just two pounds can make Braden look like a moose compared to his little peanut roommate. He just keeps getting cuter by the day. He's already throwing his little charm around, making the nurses fuss over him all day. He got to go on his first walk today. I was able to just carry him around the 4th floor....no wires or tubes attached!

Last night, he got his big IV taken out (the PICC line), so that was the last attachment detached. We're starting to learn how to take care of him when we go home (they still haven't told us a target "going home" date). We're going to be trained on how to use his scale tonight. We will have to weigh him everyday when we go home. His weight will be the deciding factor on when surgery 2 will be. Supposedly, when the weight gain starts to taper off is when his body is letting us know that he's ready for surgery two (this means he's outgrowing the shunt that was just placed in his heart). This could be anywhere from 3-4 months of age.

I witnessed his first smile yesterday...too sweet. These are the moments we're definitely enjoying.

Love,
Steph

Our Journey

It seems like eons ago when I was pregnant with Braden.....needing help tying my shoes; yelling at Rich for walking too fast; "rolling" out of bed to pee for the 6th time; anticipating the day we would be blessed with a healthy baby. I loved being pregnant - I would do it all over again in a heartbeat! Although I completely underestimated the pain involved, labor was nothing compared to the heartache we encountered on the day the words, "Your baby's heart didn't fully develop," echoed in our minds. I will finally admit that it was the most gut wrenching pain I ever felt. I never knew I could shed that many tears for someone I had just met, yet loved more than anything else in this world. Time had literally stopped and nothing else mattered. The first few days were definitely difficult as we had to swallow the fact that our baby needed multiple surgeries to correct his heart defect; become very educated on everything involved with the heart and how Braden's was so different; meet people you never knew existed in the medical field; become the strongest you've ever been to fight for your baby.

After we decided there was nothing we could do but fight for our son, we decided to reach out to all of you through the blog (thank you again Katie for setting up this wonderful site). The blog was not only a way for us to document our daily thoughts and update everyone on Braden's progress, but it served as an even more special purpose. Your comments, e-mails, cards, caring letters, and knowing you read about us has in so many ways lifted our spirits and warmed our hearts. You have helped us get through the toughest of days, strengthening our spirits so we could endure another day of hospital chaos.

Braden wouldn't be where he is today if all of you didn't help pray for his strength and courage to fight daily. We were witnesses to the amazing power of prayer. I will never forget the beautiful morning of his surgery when the bright, rising sun warmed his face while the Chaplain was giving her blessing. Right then we knew that with God's guidance Braden would get through all of this. We have learned so much in these last few weeks: the value of patience; the true meaning of "for better or for worse"; the importance of close family and strong friendships; the generosity of strangers; the wisdom of the medical staff; the power of faith and prayer; the amount of love one's heart can really hold.

Through all of this, it's amazing to think that Rich and I are parents.....very proud parents of a beautiful little boy who is truly our miracle, the strongest person we know, and one who has a "heart of gold."

Thanks again for all you have done to help us. We are truly, truly blessed to be loved, thought of, and cared about by so many people.

Much love,
Steph

Monday's Update

Hello,
It's so hard to believe that we've been here 3 weeks already. Although the pregnancy and birth feels like eons ago, it doesn't seem like 3 weeks has passed us already.

Braden just had his hearing screening....something that's usually done right after birth, but given the circumstances, other things took precident over his newborn screens. He did pass...yeah! I listened in when the doctors did their rounds. It sounds like his red blood cell count was a smidge lower than where they'd like it to be, so they're going to give him a little bit of blood. We were reassured that this is "typical" and "normal." After the blood is given, he'll get his PICC line out of his leg and he'll be free (somewhat). He'll only be hooked up to a heart monitor and his pulsox (sp?). The pulsox measures the oxygen saturation in his body. The only medication he'll be on now (and when he goes home) is a blood pressure medication, aspirin, and a diaretic. He is continuing to do well on his oral feeds. If he continues to do this well, they're looking at pulling out his feeding tube tomorrow or Wednesday.......hopefully tomorrow. They haven't given us a timeline yet, but it sounds like maybe by this weekend or early next week we could look at going home. Home........where we belong....it's so nice to finally be able to see the light at the end of the tunnel.

I will try and post later tonight. If not, be assured that no news is good news :-) As for pictures, we can't download here at the hospital, so we're going to have to wait on sending them. We can't wait to share him though.....he looks great....you would never know that he just spent the first month of his life going through one of the biggest surgies anyone could endure.

Thanks for thinking of us, praying for us, and keeping us strong.

Much love,
Steph

No more O2.....

....Braden is now breathing room air only....yeah! They took out the nose cannula this morning and he's doing great. AND, to think, he was still on the ventilator a week ago. Also, he took 45 CCs this morning (there's 30 CCs in one ounce) for Rich. We switched his bottle again, so hopefully we can stay consistant with that amount.

We're absolutley in love with this little man. He cracks us up with all of the funny little facial expressions he makes. It's amazing to know that we created this little human being. He puts our minds at ease now to fall asleep to his precious little face and the echo of his cries instead of the excessive beeping of monitors and machines. He is truly our little blessing and miracle. We thank God each day for this special gift He blessed us with.

Thank you for continuing to keep us in your prayers.

Love always,
Steph

chug-a-lug!

Braden continues to impress all with his eating. I fed him 3 times today and he took 25, 18, and 22 cc's by bottle. He is supposed to take 70 cc's ( 2 ounces) every 3 hours as Steph said earlier.

It is really amazing to watch his little personality come out too. The faces he makes, his reactions to things that happen is pretty cool to see. You can see him becoming a little person.

We had lots of good father/son time today too, while mom was snoozing. We watched Notre Dame pound Penn State today, for our first football game together. In all honesty I did most of the watching and he slept a lot, but I filled him in on what he missed. He definitely has been paying more attention to Texas/OSU tonight though.

Other father/son fun time also included the changing of my first 3 nasty diapers today. I did pretty well I must say, I didn't even gag once. (the cats litter pan is another story of course)

I seriously think this is the best day we have had here in terms of his stability and progress, and undoubtedly the bonding for us with him as a family. He has hardly been in his bed all day, Steph and I just hold him for hours on end some times.

On a side note, I just checked the numbers on this blog and 1,626 different people have looked at our blog in less than 1 month! That is not the number of hits on this site because I know some of you have checked it 1,600 times on your own. I find this to be just absolutely amazing. To think that this many people, a vast majority of which have seen two pictures of him, are pulling for him, praying for him, and are in his corner is truly a special thing. Thank you for constant watchfulness over our little boy.

The doctor's we spoke with today said that if he continues to eat the way he is and improve through next week they would start to discuss a target date to come home. Now we aren't marking the calendars just yet or trying to get ahead of ourselves by any means. However, you can't help but get excited when you hear the mention of home and the possibilities that it involves. Steph and I know that there could be setbacks still and we are sticking with our day at a time philosophy. What he has done in the last week is truly amazing though. A week ago I was worried sick about all the issues with the breathing tube and the potentially horrible consequences he faced if he failed to get off of it in a timely manner. Now we look at him and he is a totally new kid...and it feels so good, it really does.

Our little man with half a heart is going to have a lot of hugs to give to his fan club someday, to pay you back for all of your help.

Good night,
Rich

ps I will get some more pictures up tomorrow I promise.

Oh by the way, he will be rooting for the BEARS for his first time tomorrow too.......

Saturday's Update

Hello,
Not much is new today...which is good....no news is good news :-) So far, mom and dad haven't been as successful as the night nurses with feeding. He took about 1.5 ounces at two different feedings last night, but has only eaten 1/2 ounce - 1 ounce each time for us today. I guess we'll have to ask the night shift what kind of tricks they have up their sleeves. Braden's roommate got to go home today, so he has his room all to himself which is nice. Rich got his first diaper changing today.....a nice, ripe one too :-) It's so wonderful to finally be able to do more hands-on parenting with Braden instead of only being able to look at him and always having to get the nurse to help out.

We'll update again tomorrow unless there's any changes tonight. Thanks for reading.

Much love,
Steph

Friday Evening

Hello,
Braden is resting comfortably before his 7:00 feeding. He took a little over an ounce at his 4:00 feeding. The plan for us is this: if Braden continues to progress with his eating, they're looking at pulling his ng tube as early as the beginning of next week. He needs to eat at least 1/2 of his daily intake orally before they will take out the feeding tube. He's been eating half at times, but not consistantly. Once they take out the feeding tube, he needs to eat on his own for 2-3 days before they discuss letting us take him home. They monitor this entire weening process pretty closely, measuring and documenting everything he eats and weighing him everyday to make sure he's gaining weight. We could look at going home in a week or maybe longer....it all depends on Braden :-) With the whole extubation process, we've definitely learned the value of patience. We are pleased at how well he's doing so far with his feedings, and so are his caretakers. We know he will continue to amaze us with his progress.

He's only on a titch of oxygen through his little nose canula. They did try him on just room air, but he's not quite ready for that yet. They will continue to try each day. They will pull the heart lines that are attached to his heart (these were placed in after surgery just in case they needed to "jump" start his heart) tonight or tomorrow. They will also look at pulling out his PICC (sp?) line on Monday. Little by little we see less and less wires.....this makes us VERY happy!!!!!!

Thank you for continuing to pray for us and Braden's progress. We will continue to keep you posted over the weekend.

Love,
Steph

Good Morning....

Happy Friday!
It's amazing how fast time flies around here. Braden is continuing to do well on his feeds. He's been taking close to an ounce each time he eats. I just fed him and he only ate about 1/2 an ounce......we contributed it to his sleepiness. He has people in and out of his room all day checking him over, etc.....this morning was pretty busy for him, so he just pooped out a little early. With more and more wires getting detached from Braden, it's getting much easier to pick him up and even change him. Yes, Rich, it's time to start changing the little tyke :-)

Well, one of us will post later this afternoon/evening to fill you in on how things are going.

Love always,
Steph

Great start....

Hello again,
Braden just had a feeding at 6. He took one whole ounce! This made the nurses and me VERY happy!!! I am also wearing home a souvenir from the feeding.....mommy was so excited that Braden was eating that she got carried away and forgot to burp him :-) So far everyone has been very nice and accommodating on the 4th floor.

Well, I'm off to eat and then will be back for the 9:00 feeding.

Love,
Steph

We've moved....again!

Good afternoon,
Braden is officially a resident on floor 4!!!!! He managed the road trip okay and is now settling into his new home. Because the floor is so full, he does have to bunk up with another baby. Although we are very happy he has "graduated" to the 4th floor, we were a little sad to leave all of the wonderful people who took care of us in the PICU.

It was really interesting to meet and work with the speech pathologist who is helping Braden to eat. Something I never knew: there's a nerve that wraps around the aorta that controls our left vocal chord. Sometimes with heart patients (esp. HLHS kids), the nerve can stretch, causing the left vocal chord to swell as well (I'm a little rusty with my medical terminology, but I'm pretty sure I relayed this informaton accurately). This could cause some difficulty with Braden's swallowing. They're not too concerned about that right now, but the speech path. noticed that his cry sounds a little hoarse, so they'll keep an eye on that vocal chord/nerve issue. It's very interesting to see how much coordination it takes to suck, swallow, and breathe. This is a natural instict he has lost and now has to learn. The speech path. said, "Imagine running up a flight of stairs and then trying to chug a bottle of water." That's what it's like right now for Braden to try and eat on his own. He did take 1/2 an ounce on his own at 9 and noon today, so we're very happy that he's making progress.

We continue to pray for Braden's progress each and everyday. We know that God is listening and watching over Braden during this amazing journey. Thanks for continuing to pray for our lil' fighter!

Thanks for reading,
Love,
Steph

Good Morning

Happy Birthday Braden....3 weeks old today :-) I'm just heading over to the hospital for the day. I called the hospital this morning, and he had a really good night. I was able to rock him to sleep last night before I left :-)

Speech services will be coming today at Braden's feeding time to help him eat. I'm very excited to see how they help with this.

That's all for now. I'll post later today to update on how feeding time went with speech services.

Love,
Steph

A picture from a few days ago

What a difference a few days makes. As you know from Steph's posts things have improved quite a bit since Monday when I last saw him. This picture is from the weekend, and when I went up to see him after work today he looked a 100 times better!

I will post some of the new pictures when I go back up Friday after school for the weekend. All the stuff you see here is gone, his color is good, and he actually does something other than sleep for 22 hours a day now. He is so alert and calm when he is awake. He just sits back and watches everything around him.

Thanks for all of your continued support throughout all of this. It really means the world to us. Hopefully things continue to go as well as the last couple of days.

Rich

Braden's "Promotion"

Good Afternoon,
Braden was moved today....he's still in the PICU, but on a different wing. They needed his room for a more "serious" patient, so he was moved to a different room. This is one step closer to moving OUT of the PICU :-) Today was his first day of trying oral feeds. They've started him on a "slow flow" bottle. He swallowed a titch, but not a whole lot. Whatever he doesn't drink from the bottle, they put in his "feed bag" that flows through his feeding tube (in his nose). They will work with him everyday to drink from the bottle. Now that we're onto the feeding part of the recovery, going home depends on how well he does with eating. We'll be here for at least another week, but there's a big chance it could be longer.

They weighed him today and he's up to 8lbs 10oz. I'm not sure what he has to weigh for surgery 2, but everyday they will chart his weight and growth. The timeline for surgery 2 will all depend on how much he grows in the next few months....it could be in 2 months or it could be in 4 months. We hope to get out of here soon, so we can spend as much time at home before he has to come back for round 2.

Rich is up here right now, and he's enjoying every minute of being able to hold his lil' boy. Grandma Lois was up here today and got to hold Braden for the first time :-) Grandma Patsy is next! We're very excited that we're finally able to "share" Braden with others. Thanks to those of you who came to visit us this past weekend....we look forward to many more visits as Braden progresses each and every day. Thank you again for your continued support and prayers.

Love,
Steph

Tuesday's Update

Good morning,
Things are still going well for Mr. Braden and his lil' lungs :-) I feel like I can finally breathe knowing he's made it this far on his own. They started him back on his feeds (through his nose). The nurse was also taking out one of his big IV's (his "art"line). This was in one of his arteries in his wrist. It measured his blood pressure and was used to draw blood for different blood tests, etc. Since he's doing so well, they will only need to draw blood once a day...this they can do through his PICC (sp?) line that's in his thigh/groin area. They're even hinting at shipping us up to the 4th floor, which means no more ICU...whoo-hoo! They're not going to do this today, but we may be finding out sometime soon when this big move will be.

I can't even begin to express the amount of gratitude we feel towards all of you who have been so supportive during this difficult time. You continue to lift our spirits every day. We continue to thank you for your comments, cards, e-mails, and for reading our blog. Thank you for thinking of us often and sending your prayers. We know that God is keeping a careful watch on Braden....our little fighter has been able to move mountains under His guidance.

Love always,
Steph
PS....we have been receiveing angels in the mail through "Angels of Hope." We're not sure who the anonymous donators are, but thank you...they are truly special gifts.

Good Night.....

Good evening,
Braden has had a good day and night so far....he just fell asleep, so it's time for mom to go and crash for the night. Hopefully he'll have a good, restful night....if all goes well and the doctors are happy with his progress he'll get to eat tomorrow morning. They'll start him back on the feeding tube through his nose. We'll find out what's "next" after they start his feeds. We're just so happy to get this far through the day with him breathing on his own.

Love,
Steph

So far, so good.....

Good Afternoon,
So far Braden has tolerated his extubation. He's been resting comfortably all day and so far all of his "numbers" look great. They've even weened his oxygen level down to 35%. He's still on the little nasal canula (sp?) to help with air flow. 35% oxygen isn't too bad considering the oxygen level in room air is at 21%. Thank you, thank you for storming the heavens with all of your prayers for Braden.....God is definitely listening :-) Today is not over, so keep those prayers coming.....

We'll post sometime this evening with his latest progress.

Love,
Steph

The BIG day....

Good morning,
As I write, they should be extubating Braden. We called this morning and he passed his extubation readiness test. The told us that they would be extra cautious this time, making sure that Braden is READY for the breathing tube to be pulled. The morning nurse told us that the lil' stinker got ahold of his feeding tube and pulled it out of his nose....milk went all over Braden and his bed. The feeding tube was pretty well taped up and secured....I think we've got a pretty strong lil' guy on our hands.

Last night we got some nice family time with the 3 of us. The last few nights it seems once 8:00 hits, he's wide awake and very alert. It's amazing that he can just lay there and look around without a fuss while both of his nostrils hold tubes (one for breathing, one for eating). It was so sweet to see Rich play the daddy role as he talked and "played" with Braden during his awake time. We can't wait to share so many more of these sweet, precious moments :-)

Today we pray for Braden's strength and endurance as he tries again to breathe on his own. We pray that his extubation will be a complete success, so he can move on to the next part of his recovery. We continue to thank God for His blessings and for all of the wonderful moments we've been able to share with Braden. Please keep us in your thoughts and prayers during today's big event.

All our love,
Steph, Rich, and Braden

Another day of rest

We have had company all morning, hence the later than usual update. The RMH computer was messed up too this morning before we came over. (Some of you have probably checked 10 times this morning wondering what was going on)

Things are still going extremely well and he continues to eat. They are looking to take his tube out Monday around mid morning. Hopefully this 3rd time really is the charm. I think now that he has been given real food this will be the difference maker to strengthen his lungs and muscles to be able to stay off the breathing tube. It sounds like if he fails that they will just try again. We haven't been given one of those worsecase scenarios or anything, which is always good.

We will update you later in the day, or if anything changes.

Thanks,
Rich

Saturday, September 2.....noon

Hello,
Our lil' guy is resting comfortably and had another good night. They continue to increase his feeds through his ng tube, giving him lots of calories and nutrition. What goes in must come out, however, and he's doing a good job of making his nurses work a little overtime :-) He got a bath this morning and I was actually able to help out with his bath yesterday. They're thinking of extubating on Monday. All of his "numbers" are looking better each day, showing us that his lungs are doing well......his ventalator is set so that he's doing most of the breathing on his own with minimal help. He was also taken off of more meds today, which is great. It was definitely scary to see all of the machines he was wired up to last week after his surgery....it's great to see him hooked up to just 3 now (one being his feeds). It's been wonderful having Rich back for the weekend.

Thank you for continuing to lift our spirits with your wonderful comments, e-mails, and cards we've received. It's amazing to know how many people care about you - people we haven't even met are so touched by our lil' fighter. He continues to amaze us everyday :-) Please continue to keep us in your prayers as Braden gains his strength for round 3 of extubation.

Love,
Steph

Friday's News.......11:00am

Hello,
Braden had a good night and is resting comfortably. He's tolerating his feeds through his ng tube really well, and they keep increasing the amount they feed him. The nurse last night even said he has good bowel sounds (something I never knew you could tell just by giving a listen with the stethoscope (sp?).....interesting)! The doc (one of many we've met) came in and said that Braden's chest X-ray looks great, but they're not going to "yank" the breathing tube just yet. They will probably wait another day....this way he can rest up and beef up before enduring round 3 of extubation.

Things here are going well. Grandma Lois was here yesterday along with Cara and Patty. Rich will be back today around 2:00 for the weekend.
Love,
Steph