Our Little Baby Caleb

New Pics...Sorry it's been awhile:-)

2008-10-15T09:25:00.005-05:00

Caleb Food

2008-04-16T14:48:00.001-05:00

Caleb tried tofu yesterday and LOVED it! We mixed it with avocadoes (which he also loves) and bananas. He's going to be a healthy little boy!!!

New Pics

2008-04-14T20:10:00.004-05:00

Caleb is doing great...getting over pneumonia and flu...still doesn't want to crawl, but loves standing like a "big boy" (with help of course). Here's the latest pics.

Caleb is doing great!!!

2008-03-03T20:41:00.005-06:00

OK...sorry I haven't posted for awhile. We have been relaxing a little now that things have calmed down. Here are updates a plenty:

- G-button has been removed (for awhile now). He had the button in for the minimum amount of time. The surgeon came in to show me how to maintain it and I told him it was time to take it out. He didn't believe me, but I said that we hadn't used it in weeks. Great news! And...he is still eating everything!!!

- He is now eating solid foods. He has had squash, carrots, green beans, peas, apples, pears, sweet potatoes, avocados (YES, and he LOVES them!!), peaches and bananas. I am making his food myself. It is a lot of fun!!! I actually use it as a stress reliever;-)

- He is working on sitting by himself. He isn't quite there yet, but can hold himself up for a little while before toppling over.

- Caleb is talking A LOT!!! Friday nights it is just me and Caleb (Bill works). He didn't say much last Friday. I came home from work on Saturday and he was non-stop!!! Da, da, da, da, da, da, da, ba, ba, da. Quite cute!!!

- He started swim lessons on Fridays. We had his first lesson last Friday and he LOVED it! The first 15 minutes we were in the baby pool. He didn't do much there. The class is for 6 month - 4 years, but he is the youngest in the class by 2 months. They tried blowing bubbles and stuff, but he isn't quite there yet, so he just watched mommy make a fool of herself...first time for everything;-) But...when we got in the big pool in the second half, he went crazy! He had so much fun. He was waving his arms in excitement. Grandma C. was there and got some pics. I will post soon. I just want him to get used to the water, which it doesn't appear that it will be an issue.

- And, here is what everyone is waiting for....pictures!!!! Enjoy!

Still Eating...

2008-01-05T08:22:00.001-06:00

Caleb tolerated all feeds yesterday (with the increase to 4 oz. for 2 feeds). It took him a little longer than usual, but he is still eating his bottle within about 30-35 minutes. The first 3 - 3 1/2 oz. goes down in about 15-20 minutes. It's that last ounce that takes awhile.

Still Eating...

2008-01-04T12:12:00.000-06:00

Caleb has continued to eat his bottles during the day. We are increasing 2 feeds today to 4 oz. and taking an ounce off the nighttime feed to see how he tolerates it. So far, so good. He ate the first bottle that was increased to 4 oz. this morning. He did spit up a little bit, but we were probably bouncing him a little too much right after a feed (...but he likes it;-) We haven't used the pump to feed him during the day since 12/28. He has taken everything by mouth, except for a tiny bit that we either just squirt in his mouth or feed through a syringe into his belly. We have also been able to start administering his medicine again by mouth.

Here's a pic that was taken before the tube came out, but it was too adorable not to include.

Making Progress...

2007-12-31T08:10:00.000-06:00

Since having his G-tube placed on 12/21, Caleb has been making tremendous progress with eating!!! He ate his first bottle (all 3 1/2 oz.) on Christmas night. He ate the whole thing!!! That was the first bottle he has eaten in a loooong time, definitely since before heart surgery. On 12/26, he ate all 4 bottles during the day. This is the most he has eaten since August!!! Since then, he has eaten more bottles than we have had to pump him. We think that the tube down his nose was causing so much discomfort, that he just got turned off to eating. Hopefully, he continues with this progress and we can have this G-tube pulled. The surgeon said that the G-tube definitely needs to be in at least 5-6 weeks. (They can't pull the tube before the body heals from the surgery.)

On 12/27, I talked to Caleb's pediatrician about the feeding schedule and trying to get him off a nighttime feed. At that time, he got 4 bottles during the day, 3 1-2 oz. each. Then at night he was on a continuous feed for 10 hours (10 1/2 oz. total). Caleb is still sleeping in our room, because of the continuous feed and his past reflux problems. We are ready (at least Bill is;-) to try to start putting him in his crib at night, but I don't want to do that until he is off his nighttime feed. We are slowly trying to take ounces away from his nighttime feed and add them to the day.

Soooo....we are now feeding him 5 times a day. And then 8 oz. at night. For the most part, he is taking everything, although yesterday, he didn't seem to take as much as he had the past few days. We are focusing on the accomplishments and hoping that Caleb will continue to progress. Our plan is to add 1/2 oz to his feeds every few days and hope that he will tolerate it. Dr. Graham said that the goal is to get him to 30 oz. total.

Since having the G-button, Caleb has not really wanted to be on his belly. Can you blame him? But, the past couple of days, he has started to roll over again. I came downstairs from a nap the other day and he was sleeping on his stomach (with Dad sleeping right next to him) on the floor. I asked Bill if he (Caleb) put himself there. Bill said that he did and that when he first rolled over, Bill ran over to see if he was going to scream, but he just cried a few seconds and then was comfortable and fell asleep. Yesterday, he also was on his belly and lifted his head up again (his preferred position).

The Physical Therapist was excited about his progress. She said that the next thing we should be working on is when he is seated and turning his head. He LOVES to sit like a big boy. He can turn his head fine, but it is kind of shaky. She doesn't seem to be worried about the lack of tummy time that he has had recently.

Pics are coming soon...

Caleb Has Already Had His G-Button Placed

2007-12-14T09:53:00.000-06:00

OK...so...I am so sorry that I haven't posted lately, but it has been a busy past few weeks with appointments and all. (I haven't even done any Christmas shopping yet and it's 12/22!!!) Here is the latest day by day:

Thursday, Dec. 13
We started out the day by having 2 appointments: 1) Speech Pathologist and 2) Dr. Coln (surgeon).

Speech Pathologist
We met with Renee in the morning. We worked solely on feeding issues. There was another Occupational Therapist there to assist. They gave us a new bottle to try called a Haberman bottle. It is a special needs bottle that is often used for kids with cleft palate. You can control the flow as you are feeding. Caleb seems to be taking from this bottle really well! He is even starting to hold the bottle with both hands (although not on his own yet, but that will come). He is starting to cry when we take the bottle out of his mouth. We feel like we are making progress, BUT Renee thought that more progress would be made if we had the NG tube (feeding tube in his nose) removed and a G-button (feeding tube directly in his stomach) placed. Renee is actually the Speech Pathologist who did Caleb's modified barium swallow screening. She said since the results showed that there is nothing wrong anatomically with his upper GI, that this is behavioral and once we get the NG tube pulled, he would probably take from a bottle faster.

Dr. Coln
We went to Dr. Coln's office, but were told that Caleb should see his GI doctor first. (We actually had an appt. the following day.) So, they sent us to see Dr. Brady (GI doctor). We were rescheduled for Dr. Coln.

Dr. Brady
She is wonderful! We discussed what is going on during Caleb's feeds. I went through his history and current feeding schedule and habits with her. She also agreed that the G-button was inevitable and we should proceed with the planning. Initially, she asked if we would be around the week of Christmas. We said we would and that would be great because Bill will be home until 1/7. She recommended doing a pH study on Caleb to see how much reflux he was actually having. He has not had signs of reflux lately (spitting, arching, gagging), but they wanted to see internally what was going on with his pH levels. (More on this later.)

SO...we thought surgery would be the week of Christmas.

Tuesday, December 18
pH Probe
I was in a panic in the AM, because they told me that someone would call with instructions on where to go for the pH probe to be placed. No one called. Finally at 8:00 AM, I got ahold of someone (right before my mom was giving medication) and they told me no Prevacid (medication for reflux) for the study. We didn't give it to him. We went to St. John's to have the probe placed. The probe was on the end of a tube that looked a lot like his NG tube. They placed it down the same nostril that his tube was in. It went down into his stomach and measured the pH levels in the stomach to see how much acid was there. There was a little computer attached to the probe that we had to press the buttons if he was supine or eating. This was a 24 hour test.

Wednesday, December 19
pH Probe Follow Up
We went back the next day and the study should that he had 2 episodes where his pH showed acidic. The purpose of this probe was to determine if he would need a more extensive surgery: a fundal placation (sp?). This is where they tie off the top of the stomach so that he won't reflux (or be affected by it) as much. They determined that he did not need that, because there was little acid. The only issue with this is that he was supposed to stop taking Prevacid a few days before so that it would be out of his system. They still felt that he did not need the fundal placation though and that the results were accurate enough.

Dr. Coln
We finally met with Dr. Coln (surgeon) on Wednesday and decided that Caleb would definitely need the surgery. He looked him over and also thought that Caleb had a hernia on at least one side. He said that, while he was in putting the G-button in, he would be able to turn the scope the other way to look for the hernia and fix it if he found it. THEN...he starting talking about Friday's surgery. From previous discussions, we thought he meant Dec. 28. So, I said something about a week and a half and he said "No, the surgery is scheduled for Friday - 2 days." We weren't really prepared for that, but then thought it would be best to just get it over with. The surgery for the button would take 10 minutes and, if he had hernias, 20 additional minutes for each side. That was NOTHING compared to the 5 1/2 hours for heart surgery.

Friday, December 21
Surgery Day - The surgery was actually running late. We were an hour past schedule. When they finally came to get Caleb, my mom and I went up to get lunch. We brought it back down to the room and the surgeon came back in shortly afterwards. Caleb was gone for about 45 minutes. Dr. Coln didn't find a hernia (99.9% sure). YAY!!! HE GOT A BREAK!!! I went into the recovery room and he was still pretty out of it. He had to be intubated again, so his voice was pretty raspy. The button is a little bigger than we expected, but everyone keeps saying that this is no big deal and he will be able to do tummy time soon. I hope they are right, because now that Caleb can prop himself up, that is his preferred position. He just sits there and looks around (NOSY BOY!!!). He is doing really well. He has tolerated feedings so far. The mother of his soon-to-be friend (at least in May), Melissa, came to visit in the hospital and was able to feed Caleb. She got him to eat 1 1/2 ounces, which is really good, considering he just had surgery! He gave her a HUGE burp that had us all laughing too;-) We're just giving her good practice!!!

All in all, everything is going really well! I apologize for not notifying anybody about the surgery, but it all happened so fast. We are glad that it is over and look forward to making progress with the feedings. I have some adorable pics that Grandma Caldwell took and will post them soon.

If I don't get back to this before Christmas, HAVE A MERRY CHRISTMAS!!!

Update From Appointments Last Week

2007-12-11T19:57:00.000-06:00

We had numerous appointments last week, so here are the updates:

Cardiologist
Dr. Bromberg said that Caleb looks fantastic! In fact, when he walked in the room, Caleb was on his tummy and lifted his head up and gave Dr. Bromberg a HUGE smile. That was the first time that Dr. Bromberg had seen him with energy and looking great! He was so excited to see that. He said that he looks fantastic, from a cardio standpoint. He did an echo and an EKG and both looked great. He did say that there was moderate leakage in one of the valves, but that it was not enough to do anything about. He said that he usually does not see problems with the leakage unless there is severe leakage. We will just keep an eye on it in the future. We took him off the lasics and, if in a few weeks he still looks good, we will take him off the enalipril. This was very exciting, but even more exciting is the fact that Dr. Bromberg does not need to see him for another year!!! (Not that I don't like him, but not where I want to spend our time:-)

Physical Therapy
Deana said that Caleb looks great! She said that he is getting great head control. We are continuing to work on the mini-push ups. She wants him to use his arms more, because he is using mostly his neck muscles right now. She also said that he is looking to the left a lot. We are supposed to try to put toys and stimulating objects to his right to try to encourage him to look to the right. Otherwise, his neck muscles will get tight and he could have a difficult time turning to the right. Since our visit with Deana, Caleb has rolled over twice!!! The first time we weren't sure if it was really a rollover. He was on his back and then turned to his side, hung out there for awhile and played, and then went to his tummy. The next time that it happened (just like that), his nurse was here. We didn't say anything...she was just watching him and interacting with him and then he did it!!! She made such a big deal about it that we were sure that wss considered a "rollover". The other thing he has done since our visit with the PT is we can pull him up from his back to a seated position. He LOVES this!!! He likes to sit (with support of course) and just talk.

Occupational Therapy
We are still working on feeding issues here. She likes how much Caleb is bringing his hands to the center. He will even hold onto a bottle with both hands (with help).

Modified Barium Swallow Study
They decided that Caleb has nothing wrong with what is happening inside, aside from the reflux. They said that his refusing to eat is behavioral, meaning that he has learned that eating is not fun (from the reflux) and makes him uncomfortable. The Speech Pathologist that did the study wants to work with him some more, so we will be meeting with her this week. She said that he is actually pushing the bottle out of his mouth with his tongue. He is also storing the milk in his mouth and not swallowing. We will be working with her, but she also wants him to get a g-tube and visit with a GI doctor.

ENT
Dr. Forsen said that Caleb's laryngomalacia actually looks better this time that it did the last time, which is good. This is something that kids often grow out of so he is not reccomending surgery right now. He did clean the wax out of his ears because baby's with Down syndrome have very small ear canals and he was afraid that his pediatrician would not be able to do ear exams. Caleb did not like this one bit. This is the most that I have ever seen him cry:-(

We are meeting with the surgeon on Thursday to decide a time to have the g-tube put in. This doesn't sound like a big deal, at least compared to what the little guy has been through. Bill and I are hoping that we can have the surgery right after Christmas because Bill will be off for another week. We are also meeting with the GI doctor on Friday. I will post more when I know more.

Thanks again to everyone keeping tabs on our precious little guy!!! We really appreciate all of the prayers and kind words. Everyone has been so supportive through everything.

Caleb Did a Mini Pushup!!!

2007-12-03T19:10:00.000-06:00

Sunday, we decided to start a new tradition for our family and cut down a Christmas tree. I remember doing this when I was a kid and thought it would be fun to pass on the tradition. So...we decided to invite the family (grandmas, grandpas, aunts, and uncles) along with us and then have everyone over to our place afterwards for some chili dinner. I was vacuuming downstairs and getting the house ready for company and Bill and Caleb were upstairs getting ready. All of the sudden, I heard a loud, "HONEY, GET UP HERE FAST!!!!" I immediately stopped the vacuum cleaner and ran upstairs to Caleb's bedroom, of course thinking that something was wrong. Bill had Caleb on his changing table, face down, and Caleb was doing a MINI PUSHUP!!! He had his arms underneath his chest and was pushing up on them, kind of on his elbows. Every time the physical therapist is at our house, I ask her where he falls short compared to a typical "5-month" old (or whatever age he is). This past time, she told me about the mini pushup. Well, he did it! (I know that I am not supposed to compare, but it's hard not to. It gives me a goal to shoot for.) He held his mini pushup for a loooonng time. He is doing so amazing.

We had a great time chopping down our tree. Of course, when we woke up, it was a beautiful day out. By the time we left, it was raining and the temperature was dropping. When we finally got to the place (Christmas Traditions in Wright City), it had dropped about 20 degrees and was misting. We didn't even get to bring Caleb out of his pumpkin seat because it was so cold. We went inside afterwards for some hot chocolate and a picture with Santa. All in all, it was a great trip and we will definitely do it again next year. Of course, when we got back to the house, Caleb was passed around like a hot potato. He loves being held, so he didn't mind it one bit!

We meet with the physical therapist tomorrow. She is going to be so excited about his progress. I can't wait!!!

The Poor Little Guy Has Been Sick

2007-11-28T19:47:00.001-06:00

I hope everyone had a great Thanksgiving!!! We sure did!!! We had a great time with family. Caleb's Aunt Jessie got to see him a lot over the weekend, since we spent the whole weekend over at my parent's. On Saturday, he woke up with a bit of a cough, nothing big though. We were thinking about walking around Main Street in St. Charles, since they have the old time Santas walking around. As the day went on, though, Caleb's cough got a little worse. We decided it wouldn't be a good idea to take him out in the cold, so we stayed in. It got even worse on Sunday, so Monday morning I took him in to see Dr. Graham. He was breathing pretty heavy and coughing a lot (both signs of RSV and pneumonia). I, of course, am paranoid and Bill thinks we don't need to take him to the doctor for anything. I asked Dr. Graham and the nurse if I was just being a paranoid first-time mom, and they said "not at all". Both said that we should be very cautious with this little guy. In fact, Dr. Graham said that she has 2 patients that she gets worried about and 1 of them is Caleb. They did a rapid screen for RSV which came back negative and then sent us over to St. John's for a chest x-ray. They said no pneumonia, that it was just a nasty virus and that he may be cranky and tired most of the week. He has been pretty sleepy. One day he took a 3 hour nap! But, for the most part, he has been OK.

When we were at Dr. Graham's, she asked how the feeding was going. I told her it isn't. Caleb was not gaining weight for awhile because the reflux was getting real bad. We have figured out the right rate and timings to feed him where he is least likely to spit it all back up. Unfortunately, though, this means that he is being tube-fed for the most part. He SOMETIMES (although not since he has been sick) takes and ounce and a half first thing in the morning. But, besides that, he is being tube fed. We have to give him his feedings over a 2 hour period. Any faster than that and he spits up A LOT. I guess we feel right now that at least he is getting his nutrition and will hopefully gain weight until we figure out what is going to happen about the feeding.

About the barium swallow study...they did the wrong test. Evidently there was some miscommunication somewhere and he was supposed to have the MODIFIED barium swallow which is completely different. This is the one that we thought he was going to have in the first place. He is scheduled to have the correct one done next Thursday (12/6).

When we were talking about Caleb's feeding, Dr. Graham asked me to ask our Occupational Therapist if she realistically thought Caleb would be able to eat on his own within a month. She did not. SO...... We are probably going to have a G-button put in, which is just another form of a feeding tube that goes directly into his stomach. They do have to do surgery to put it in, but evidently it is not a big deal. I guess nothing is compared to heart surgery! With the NG tube that he has in now (goes in his nose down to his stomach), there is a chance of aspiration (fluid getting into the lungs). There is much less risk with a G-button. We are scared of course to do this, but Caleb's OT said that she would do it in a heartbeat if it was her child. She said she has seen little ones progress so fast once they get this put in. She explained that the NG tube (that he has now) is very irritating to have and that it irritates the kids. Every time he swallows or coughs, he feels it going up and down and it can cause scar tissue, which makes for uncomfortable eating. We don't have a date yet (or even a doctor for that matter). We will decide what to do after our modified barium swallow on Thursday. We also meet with the cardiologist Thursday and his ENT on Friday. By the end of next week, we should hopefully have a game plan.

Aside from medically, Caleb is coming along AWESOME!!! He is holding his head up so good and actually lifting it and turning to look to his side. He loves being on his belly and constantly lifts his head. I think he is starting to do the mini push-ups, where he is starting to use his arms a bit. He continues to fill our lives with joy with all of the smiles that he gives us daily. Here's a pic of our pre-Thanksgiving celebration at our house where Caleb got his new toy from Aunt Mary and Uncle John. He loves this dog! It is really funny...he starts crying when the dog stops singing and then instantly stops crying as soon as you play the song again. Who says you can't spoil a baby?!?!?!?

Diagnosis...Caleb Has Reflux

2007-11-21T07:08:00.000-06:00

Well we had the barium swallow screening done and the radiologist said that Caleb has reflux. No kidding?!?!?! I told them they could come to our house any given evening and witness, firsthand, the reflux. But, the good news is, that I guess they were actually looking for something more, and didn't see it. The screening took no time at all. They gave Caleb a bottle that had the barium in it. He actually drank a little bit (not much though). I watched the x-ray as the substance was going down. It was amazing! You could see him swallowing and the barium going down his esophagus and then into the stomach and small intestines. Pretty cool if you are interested in anatomy, like me! When Caleb came up, the poor guy had the stuff all over his face!!! He didn't seem to mind though. He was so good through the whole thing...didn't even cry a peep! He, of course, made friends with everyone we came into contact with at the hospital. He just looks at people with those big blue eyes and they all melt!!!

We actually thought that there was going to be a speech therapist performing the screening. I guess there are 2 different screenings: barium swallow (done by a radiologist) and modified barium swallow (done by a speech therapist). I am going to call Caleb's ENT to make sure that he had the right one done.

We also took Caleb out to dinner last night!!! This has been our first outing (aside from going to grandparents house) since surgery. We went to Concetta's, where Bill works on Fridays. He was so good there also. He just looked around like, WOW, I had no idea there was all of this cool stuff in the world;-)

Caleb has a fun-filled weekend planned with his Aunt JESSIE. (Again, she HATES it when we call her that...so of course we need to torment her;-) I will post some pics soon. We have them on the computer, I just need to sit down and actually post them. I hope everyone has a HAPPY THANKSGIVING!!!

ENT Appointment

2007-11-17T09:24:00.000-06:00

Well, we went to the Ear, Nose and Throat doctor on Friday. They said that Caleb has laryngomalacia, which means he has floppy tissue in his airway. This is what is causing his noisy breathing. They don't think this was from the intubation at surgery; they think he was born with it. The doctor said that it is not real bad though...not bad enough for surgery. That's great news! His doctor is having him do a barium swallow screen, which will be done at St. John's in the radiology department next week. Here is a link on what the study is, because I don't understand it all that well. http://www.stjohnsmercy.org/healthinfo/test/gastro/TP046.asp This will hopefully tell us what is going on with the feedings inside his body and why he is not tolerating his feeds. We will meet with the ENT again in 2 weeks.

Cardiology update - Dr. Bromberg said that his recent x-ray looked like there was a little fluid in the lungs, which is fairly common after this surgery. He changed his medication around a little to try to fix this, but he said that it should fix itself within a few months. Otherwise, he thinks he is doing pretty good. The next cardiologist appointment is in 3 weeks.

Physical Therapy update - Deanna, Caleb's PT, said that he is doing a great job with holding his head up. We are very impressed with how he is doing! He is also bringing his hands to the center and looking at his hands A LOT!!! Bill actually took a video of Caleb doing his new tricks to show Deanna, which was good because she could say, "I like the way he did this...next time he does it, try to get him to do..." She said the next thing we need to work on is to get him to hold his head and take a toy to try to get him to turn his head from right to left. We feel like Caleb is working so hard!!! You can tell when he gets frusterated and really wants to do something!

Cardiologist Appointment - Video Included

2007-11-10T07:55:00.000-06:00

Well, we had a Cardiologist appointment on Thursday. Initially, Dr. Bromberg walked in and looked at him and said right away, "He looks like he's breathing heavy." We thought we were in for a good appointment, but to hear this right away crushed me. He also heard how "congested" he sounded and commented. After doing an exam on Caleb, he said that his heart sounds great! He commented on how good the x-ray results from the previous week looked from down at Children's. (We are supposed to have another one on Monday.) He wasn't happy to hear that Caleb isn't eating yet. Dr. Bromberg said that he thought this would have gone away by now and that Caleb would be eating better. I asked about having him see a GI doctor to see about doing something more for the reflux, but Dr. Bromberg thinks that there is something more going on. He suspects that, due to the Down syndrome (more comments later on this), Caleb may have "floppier" airways, epiglottis, or enlarged tonsils/adenoids. He thinks this may be why he sounds like he is snoring all of the time. The sounds and appearance of breathing heavy went away when Bill held him in different positions. He said that he thought these symptoms (breathing heavy, not eating, sounding congested) would go away post-surgery. He is going to talk to Caleb's pediatrician and recommend that Caleb see an Ear, Nose, Throat doctor. It sounds like, worst case scenario, he would need to get his tonsils/adenoids removed. I told Caleb that tonsils/adenoids are overrated...mommy doesn't have them either!

It was funny...when Dr. Bromberg said "Well, because of the Down syndrome, he may have floppier airways, etc."...I thought to myself, "Oh yeah, I forgot. He does have Down syndrome." It doesn't even phase me anymore. I just love my baby for who he is, and if that is the package that he came in, then so be it. He brings so much joy to our lives, it doesn't even matter.

We asked him about the G-button possibility and Dr. Bromberg said (just like Dr. Graham) that he isn't ready to do that yet. I was very glad to hear that!

We meet with Dr. Graham (pediatrician) on Tuesday. Hopefully we will find out more about the ENT suggestion.

Caleb has been working soooo hard to lift his head. He is very persistent. Bill commented the other day how Caleb actually got him teary-eyed because he was so proud at how hard he was working to lift his head. We are trying to work with him as much as possible. Before, he would lift his head and slam it right back down. Now, he is lifting it and holding it and slowly lowering it. We are so proud to see him working so hard at this!!!

Caleb is talking all the time now! He is a very vocal little boy! He is also starting to hold the binky in his mouth with his hand (which is making our job a little easier;-)

Here is a short clip of some smiles we got last night. Enjoy!!!

Caleb Won't Eat!

2007-11-07T05:52:00.001-06:00

I am sorry that I have not updated in awhile. We had kind of a busy weekend and, well, the weeks are always crazy! Caleb's most recent issue is the fact that he won't eat, which is kind of a necessity! He still has the feeding tube in. That will most likely remain in until he either a) decides it is time to eat from a bottle, or b) gets a g-button in (I will explain later). He has been very congested lately, which I am sure is not making matters any better. We have had several people listen to him, including about 5 doctors and 3 nurses, and all of them say that his lungs sound great! But, for those of you that have heard him, you would think he is the sickest baby ever! We think that this may be part of the reason that he won't eat. We do have speech therapy and occupational therapy working with him. We are trying different nipples, positioning, teasing him with a binky, basically anything that we can.

He is also starting to reflux again. I am not producing as much breast milk as before, so we are having to give him formula sometimes. This is not going over well! Monday was the first day that we had to give him strictly formula at a feeding and he threw it all back up. He had breast milk (BM) for his 9 AM feeding and was fine; 12 PM and 3 PM he had formula only and threw it all back up. Joan and Ralph (Bill's mom and dad) came over and watched him while Bill and I went to dinner. Caleb was supposed to eat at 6 PM and we had BM. They said he threw up 4 times while we were gone. When we got home, I picked him up. Shortly after, he started throwing up again, but it had yellow in it, which was bile. I called his pediatrician and she told us to look for dehydration. We got some Pedialyte to replace the feedings if he kept throwing up, so he would at least get some fluids. She told us that if he continued to throw up, we would need to take him to Children's. We didn't end up needing that. He tolerated the rest of the evenings feedings (all BM). His pediatrician did change his formula to soy, which has been a little better, but he is still refluxing.

Tuesday, he had a combination of BM and formula. He was still refluxing a little, but not as bad as Monday. Of course, he is tolerating the BM more than formula, but I am not producing what I used to. I am taking supplements (Fenugreek), that the lactation consultant at St. John's recommended. It is stressing me out that I am not producing, which is making matters worse as far as the production goes. I just want what is best for my baby!

The next step for the feeding is a g-button. This is another form of feeding tube, but more permanent. It is surgically placed right into his stomach and has a valve that would connect to a tube. It would mean another surgery and he would need to be put under anesthesia again, which I am not too fond of. We are trying to do everything that we can to prevent that from happening. I asked his pediatrician about the possibility of this and she said it is the next step, but she hadn't really gone there yet in her mind. His nurse says that she is surprised that they let the feeding tube in his nose (NG tube) stay in that long. Usually, it is on a very temporary basis. The last time the nurse took his weight, he actually went down, which of course isn't a good thing (at least when you are a baby;-)

We have a cardiologist appointment tomorrow. So far, the cardiologist has been prescribing his feedings because it is related to heart failure, etc. So, I am not sure what he will recommend. I will try to post on Friday after the appointment, but when we met the surgeon last week, they said that he looks like he is healing great from surgery! He is almost completely healed! It is amazing that he had open heart surgery 3 weeks ago tomorrow!

All of that said, Caleb has continued to give us smiles and coos. He is such a strong little boy! He has been through more in his first 4 months than I think most of us have been through in our lives so far. Last night, I thought he was sleeping. (He sleeps in our room still.) All of the sudden, I noticed that the little mobile over him was moving. I looked down and he was wide awake and reaching out to touch the mobile and hitting it! Up to this point, he would just lay there in amazement staring at it. He is also holding his head up a lot better. Bill is working with him quite a bit, since he is home with him during the days right now. We get so excited when we see little things like this!!!

Good and Bad...But Caleb Ate 75 CCs!!!

2007-10-31T18:25:00.000-05:00

After a wonderful Monday with lots of visitors, Caleb had a rough day/night yesterday (Tuesday). He was very fussy all day long. Bill was home with him. (Bill is staying home with him until after Thanksgiving.) He didn't eat anything all day long and was very irritable. When I got home, he continued to be fussy. He went one period of SCREAMING for at least an hour straight. Nothing would soothe him, including a binky, which always does the trick. (BTW, we are still searching for that Personal Binky Holder;-) He was also sweating really bad but not running a fever, he was retracting (pulling in on his stomach when he breathes), and started refluxing again. These were all signs of heart failure, which they told us to look for before surgery. So I immediately thought something serious was going on. I called his pediatrician and she wanted me to take him to Children's Hospital to have a doctor look at him. They did an exam, EKG and X-ray. Everything looked great, except for him sounding extremely congested. They said the heart looked great, but that he had the early signs of a virus. They ran a nose swab, which will take 24 hours for the results. We are hoping it is not RSV. He is supposed to be getting the Synergis shot for RSV on Saturday. This shot costs $2000 for each shot and he will be getting it once a month. Insurance is covering it because he is considered high risk. When we got home, he started refluxing pretty bad and actually coughed up a lot of mucus. He ended up sleeping great through the night and has had a great day today (Wednesday). We are hoping that he just had some really yucky stuff that couldn't come out and he was irritated.

We had occupational therapy over on Monday to work on feeding issues. She gave us some pointers. They didn't work at all yesterday. But...today he ate75 CCs in one feeding and 60 CCs in the next. That is the most he has eaten in a looooooong time.

He also was doing tummy time the other day and held his head up for an extended amount of time. He has been lifting it for awhile, but this was actually slow and controlled movement, which means that his muscles are getting stronger (of course, mom likes that;-)

Caleb Is Doing Great

2007-10-27T06:57:00.000-05:00

Well, our first few days at home have gone pretty good. But, boy were we spoiled with the continuous feedings at night!!! Prior to surgery, Caleb was being fed from 8:00 PM to 6:00 AM (10 hours) at night through his feeding tube on a slow drip. So, he never got hungry and slept the entire time. WELL...that has all changed! We feel like we have a newborn again;-) The past few nights, he has woken up several times with either a wet diaper or hungry. And, of course, he wants his binky. That seems to be the only thing that soothes him at times. He can't hold it in his mouth by himself, so either Bill or I have to hold the binky in his mouth or else he cries (silly little baby).

Which brings me to my next subject...

We are now taking resumes for a Personal Binky Holder.

Job Requirements: Must be available at all times, meaning 24 hours a day; Must act quickly and respond to the snapping fingers of a 3 1/2 month old; Must be dependable and have one available finger at all times to secure binky; Pay is on a bonus-basis on how happy you make him and is given in smiles and coos. Please be aware, your future employer is very demanding and will let you know if your job satisfactory levels are low. Please respond in Comments section if you are interested.

Caleb's Aunt Jessie (she hates it when I call her that, so those of you that know us well know that she will be called Aunt Jessie by both Caleb and myself;-) bought him a pumpkin Halloween costume. Here are some pics that we took last night. It is REALLY difficult to get a (almost) 4-month old to pose and smile. He seems to be full of smiles unless there is a camera in his face.

Also, please make sure to read my mother's Thank You message posted on 10/26. We could not have gotten through these past few weeks without the support and prayers that everyone has given.

A Message From Grandma Spahn

2007-10-26T14:46:00.000-05:00

Our family has witnessed the love, caring and goodness of people through one little baby boy. So many of you have offered prayers, be it first graders at religion classes, by putting Caleb’s name on prayer lists or making your own personal petitions; you’ve expressed your concern through e-mails and phone calls, and brought snacks and meals. From the countless hours of a dedicated surgeon named Dr. Gandhi, to an angel named Faith, who, having experienced a similar ordeal, was there to offer her presence in the surgery waiting room, the gestures were appreciated.

Caleb, thanks for opening our eyes to these acts of kindness; and hopefully in some way we’ll be able to pass on those acts to others. Quite possibly through Caleb’s eyes and with his mended heart, he’ll continue to teach us all something about life.

WE'RE HOME!!!

2007-10-24T22:41:00.000-05:00

Well, Caleb had a great night last night (aside from a little fussiness) and we were discharged this morning. They taught me how to change the dressing, which needs to be changed twice a day. It is a lot easier than I anticipated. I will be home this week with him and then Bill is taking off through Thanksgiving.

He is still having feeding issues, so he still has his feeding tube. We are trying to feed him by bottle a couple of times a day. He will also be evaluated soon through First Steps by a Speech Therapist. Hopefully we will get them to come weekly until he starts feeding better. All of the doctors say that he will start eating again. Everyone comments on how great his suck is. Sometimes it just takes these little guys a little while after surgery to get back into the groove. (Although Caleb has had a feeding tube since the end of August.)

For those of you who don't know what First Steps is, it is a state run program for little ones with special needs. When Caleb was born and diagnosed with Down syndrome, they automatically enrolled us in the program. He had evaluations by Physical Therapy and Occupational Therapy and then we all sat down and made a plan for him. Through First Steps, he has Physical Therapy and Occupational Therapy on alternating weeks. They come to the house and work with him. Speech Therapy is also included in this program. At the time of his evaluation, he was eating great so there was no need for Speech Therapy, but since he is now having feeding issues, we are going to have it added. He will be enrolled in the program until he is 3 years old; then he will go to the Hazelwood Early Childhood Center for preschool where there are "typically developing" children as well as those with special needs.

As for starting up therapy again, Dr. Gandhi said that Caleb has no restrictions. He is able to start his Physical and Occupational Therapies right away. One of the things the Physical Therapist works with is tummy time. Dr. Gandhi also said that Caleb can continue tummy time as much as he will tolerate. This was amazing to us!

Post Surgery Day 6 - Going Home???

2007-10-23T19:48:00.000-05:00

Well, rumor has it that we may be going home tomorrow!!! We don't want to get too excited...BUT...of course, we can't wait to bring our baby boy home. As long as things go well tonight, we will be heading home. Caleb is continuing with the smiling and cooing. We had speech therapy come by today to work on feeding issues. He was able to take 20 mL by mouth, but that was it. For a comparison, there are 30 mL in 1 oz. We will keep working with him. They said it may take time, since he was on the feeding tube for so long. We are going to have Speech Therapy added to our First Steps program, so they will come to the house, hopefully once a week until we can get him eating.

Bill and I were talking about how amazing Dr. Gandhi is and the fact that he saved our son's life. How do you thank someone for that? Words can't express that enough. We can tell him all we want, but it feels like it is not enough.

We will continue to keep everyone posted on things. Hopefully we will be able to get some more "footage" of Caleb's adorable antics;-) I will post more pics and video as soon as I can.

Post Surgery Day 5 - WOW!!!

2007-10-22T19:35:00.000-05:00

Caleb is looking fantastic today!!! I worked the earlier part of the day and got to the hospital around 1:00 PM. WOW!!! He looked AMAZING!!! His color looked completely different! He was full of smiles and cooing like crazy...way more than before surgery!!! He is like a completely different baby! He is still adorable like Caleb, but not so tuckered out all the time. He seems full of energy, bright eyed and VERY talkative. It is amazing how different he is. A few days ago, I was talking with Dr. Bromberg (cardiologist) and was telling him how, when I hold Caleb's hand, he seems to be gripping tighter than before the surgery. Dr. Bromberg told me "Kristen, you have no idea how much energy that poor baby was using just to breathe." Wait until he hears this!

He is off oxygen. They took it off last night and since I have been here, he hasn't dropped below 95 percent. He has been about 100 most of the time.

Caleb has nothing attached internally anymore, except for the pacemaker wires. He is still not connected to the pacemaker, but they kept them in...just in case, since he was in JET rhythm.

He has moved out of CICU and into the 7th floor Cardiac Unit. They said to be prepared for him to come home Wednesday or Thursday.

I was pretty scared to hold him at first, because of the big suture, not to mention the pacemaker wires still attached. But, I was able to hold him after all. A little scary at first, but I definitely got over it once I had my baby back in my arms. (I haven't held him since Thursday morning!)

I am trying to get him to talk on camera, but I think, like his Mom, he is camera-shy. Every time I put it up to his face, he just stares at it. I'll keep trying...it will be worth the wait!!!

Post Surgery Day 4

2007-10-21T20:07:00.000-05:00

Caleb managed to stay off the pacemaker and ammio and is no longer in JET rhythm. He is now in sinus (normal) rhythm, which is wonderful!!! He got a bath and his dressing changed, so he doesn't look so bloody anymore. He also got his chest tube and his right arterial line out. He did end up needing a little more oxygen yesterday and today. They have him on constant oxygen right now because his oxygen saturation levels were dropping whenever he was off it. He has been getting oxygen here and there, but not continuous, so they decided to keep him in the CICU for more observation. They said that he could probably go on the floor, but since he is requiring the oxygen right now and they have plenty of beds, they are going to keep him in CICU so they can watch him closer. No big deal, as long as my baby is being taken care of;-) Hopefully he wil get moved to the floor tomorrow.

We also thought we saw him retracting a little, so they did another x-ray, but they decided that the fluid on the lungs was better off today than yesterday. That is a relief!

Caleb looked so good today to Bill and me. Here's a short video of his cute antics whenever Bill gets in his face. It is absolutely adorable!

Post Surgery Day 3 - Stayed Off Pacemaker/Ammio/Heart Meds

2007-10-21T00:45:00.000-05:00

Caleb managed to stay off the pacemaker, ammio, and heart medications all day! He is still in the JET rhythm, but the doctors are saying this will definitely go away, it just may take some time.

We have not heard anything back on the staph results yet, which is a good thing. In this case, no news is good news. Our nurse told us that typically something would show up in the first 24 hours, but that it could show up as many as 5 days later.

When we were getting ready to leave tonight, Bill noticed that Caleb was retracting a little. This is where he pulls his stomach in when breathing. We mentioned it to the nurse, so she listened to hims heart and then had the doctors listen. They decided to do an x-ray and found excess fluid in his lungs. As a result they ordered more diuretics. They said this is all normal and he may need to come home on a diuretic (which he was on pre-surgery anyway). That daddy of his sure is keeping a keen eye out for him;-)

There is talk of taking the chest tube that is draining the fluids and the pacemaker wires out tomorrow. There is also TALK of moving out of the CICU onto the cardiac floor tomorrow. We hope this is the case, but of course want what is best for the boy.

He looked really good today, however the doctors still recommend visitors be limited to us and grandparents. We welcome friends/family to the hospital, but just keep in mind that, for Caleb's sake, any guests will need to see him from outside his door. I will try to post some pics soon.

Off Pacemaker/Ammio

2007-10-20T10:06:00.000-05:00

Caleb was taken off the pacemaker and the ammio (medication for the heart rhythm) this morning. They are hoping that he can stay off them. He is still in JET rhythm, but they think it will work itself out today or tomorrow. I guess the reason they think he is in the rhythm is from swelling from the surgery, which is expected. They think when the swelling goes down, that the rhythm will work itself out.

They did change his antibiotics because of the positive nose swab for staph. This sounds like a precautionary measure, in case it is in his blood. They are also doing medication in his nose to try to get rid of the bacteria, which will take 10 days. They did this same medication the night before surgery, which they do with all cardiac patients going in for surgery. So far, nothing has shown up from the blood, but it usually takes at least 24 hours. I think if it were REALLY bad, something may have shown up by now.

They did insert a feeding tube again. They said we could expect that, since he was on one for so long before. They want to get speech therapy involved, to help out with the eating. He still has a very strong suck.

I will update more later in the day. We haven't even made it down to the hospital yet. I decided to let Bill sleep in a bit. It is 10:15 AM and he is still sleeping;-) Thanks again for all of your thoughts and prayers!

Post Surgery Day 2 - Another Curveball

2007-10-20T00:18:00.000-05:00

Well, everything was going great so we decided to spend some time in the lounge. Bill and I decided it was time to go, so we went back in ICU to say good night to Caleb, only to find the nurses and doctors putting on yellow protective gowns and blue gloves on before they were entering. This wasn't the case before, so we knew something was going on. Come to find out, the test they did the day before surgery by swabbing his nose came back positive for staph. This means that he is a carrier for staph, but not necessarily that he has an infection. They did blood work at 9:30 PM to see if there is staph in the blood. The preliminary test takes 24 hours to come back. So, it is a waiting game now. They did say that a lot of people are carriers for it, without actually having an infection. Most people don't even know that they are carriers; it is only because they did the nose swab that they are looking at it. They also said that his white blood cell counts were normal (15.2) and would most likely be elevated if there was infection. Hopefully this ends up being nothing, but it is still scary!

They temporarily took him off the pacemaker tonight, but ended up having to put him back on it. They are also trying to decrease the medication for the JET rhythm.

He wasn't eating so great at night tonight. They are giving him some nutrients through an IV until he gets the eating going. This is not a surprise to us since he was on a feeding tube for so long before surgery. We weren't expecting him to eat anything this soon, so the little he has still feels like a success.

Looking Even Better!

2007-10-19T16:57:00.000-05:00

Dr. Bromberg (Caleb's cardiologist) came in this afternoon and said he looked great!!! He was very pleased and said that the JET rhythm will work itself out. He said that the only thing keeping him in the CICU right now is the medicine that he is on for the JET rhythm. They are going to try to cut that in half tonight and see what happens. He GUESSED that Caleb would come home Tuesday or Wednesday, but these are only guesses. I keep trying to get a timeline here, but nobody will say anything. But....I keep pressing, of course;-)

Breathing Tube Is Out; Food In (The Champ Is Back!!!)

2007-10-19T15:11:00.001-05:00

Caleb got his breathing tube out this morning, which is great news! He is still on a little bit of oxygen. His fever is on its way down (I think about 100.5). He is still experiencing the abnormal heart rhythm, but I think they expect that to take a few days to fix itself. Because he still has the abnormal heart rhythm, he is still on a pacemaker and medication. They thought for a second that he was in sinus (normal) rhythm, but after doing an EKG, decided he wasn't, so he continues to need the pacemaker.

He has also already eaten a little bit! They tried to give him 1/2 an ounce and he sucked it down VERY quickly. So, they gave him another 1/2 ounce and then another 1 oz. about 2-3 hours later. For now, they are going to give him 50 mL (a little less than 2 oz.) every 3 hours. They are keeping his fluid intake to a minimum, because he hasn't urinated in awhile and need to keep an eye on that.

Seems to be a good day so far! It started off a little rocky, because when they took out the breathing tube, he was extremely fussy. I would be too! But, they had to sedate him a little in the early morning. He was coming out of it when we got here. I will update again a little later. Thanks again to everyone checking on him!!!

Post-Surgery Day 1 Summary

2007-10-18T23:38:00.000-05:00

As Amy said, Caleb had a setback today. Everything seemed to be going really good. They were even getting ready to try to take out his breathing tube. But then his heart rate (which got up to 220) and his fever (which was up to 105.7) increased. They said his heart was in JET (junctional ectopic tachycardia). This means that there was a problem with the conduction of the heart. They treated through medication and got the heart rate and fever to come down a little. Then, they put him on a pacemaker. The conduction in the heart should start at the top and then travel down, but Caleb's started in the middle of the heart. The pacemaker seemed to help put it in the correct rhythm. They are going to keep him on the pacemaker through the night and the hope is that his own heart will get in sync and they will be able to take him off tomorrow.

They are also going to try to take him off the breathing tube tomorrow. They will slowly try to wean him tonight.

When we left the hospital, he looked really good. He was sucking his "imaginary binky" and trying to look around. They are still keeping him pretty sedated, but he definitely knew we were there. The nurses told us to try to stay back a little and to try to keep our voices down because he was responding to us being there and right now, he needs to relax to get through this. They said BEST CASE SCENARIO we are looking at him getting out of the CICU on Sunday, but not to be surprised if it is longer. They are basically just looking for progression, no matter how long it takes. If anyone would like to come to the hospital, please try to call us so that we know you are coming (just to make sure we don't leave for lunch or a walk or something). Visits to see Caleb need to be kept to a minimum, but we would surely welcome the company.

Please keep those prayers coming!

Update on Caleb

2007-10-18T18:22:00.000-05:00

Hi everyone,
This is Amy, writing for Kristen. I just got a phone call from Kristen giving an update on Caleb following surgery. Kristen and Bill wanted everyone to know what is going on with the sweet boy. Unfortunately little Caleb isn't out of the woods yet. He's experiencing some problems including a high fever (103 degrees, down from 105 degrees earlier) and a high heart rate (200-210 beats per minute). I'm sure Kristen will post again soon with more specific information on his condition. Apparently the surgeon has been in to see him and they say that this can be overcome with medication, but of course this setback is hard for Kristen and Bill who have already experienced the roller coaster of emotions these past months. He's currently sedated and has his very own nurse to keep watch over him 24/7. And this will most likely mean that he will be in the Cardiac Intensive Care Unit longer than originally thought. Right now they are at the hospital with the grandparents. Please continue to keep Caleb, Kristen and Bill in your prayers. If you were planning on visiting, call Kristen first since they are taking things moment by moment at this time.

Amy

Surgery Is Over - Went Great!!!

2007-10-18T12:15:00.000-05:00

Caleb's surgery is finished and everything sounds like it went very good. There is still a tiny hole (VSD?), but nothing to worry about. He is on his way up to the Cardiac ICU, but we will still not be able to see him for about an hour. Dr. Gandhi said that everything went really good. He is "oozing" blood a little, but that should be expected. We will keep you all updated. Thank you so much for thinking of us today!!!

Surgery Has Started

2007-10-18T09:24:00.000-05:00

Well, we had to hand Caleb over this morning for surgery and everything happened much faster than I expected. They came in and got him at about 6:45 AM. By about 7:15 AM, he was in their hands. The surgical staff seems to be excellent. They said that he was given anesthesia by gas at first and then given the rest later. They have made the incision and broken the chest bone. Everything is going well so far. They will update us hourly. The next time they should come in as at 10:00 AM. Please continue the prayers! I will keep posting. We really appreciate all of the comments!!!

Surgery Is Still On

2007-10-17T20:13:00.000-05:00

The surgery is scheduled to start tomorrow morning at 7:30 AM. This is going to be the hardest thing to do to hand him over, but I have heard that once parents hand their child over to the surgeon in situations like this, that it feels like a weight is lifted off. We will try to update during the morning tomorrow on his progress. The surgery will last for about 4-5 hours and then for about an hour afterwards, we will not be able to see him. At this time, he will be in the Cardiac ICU. There are nurses that will update us periodically through the surgery, so it is my intention to update this site as the morning goes on.

Please continue to keep us in your prayers. It really means a lot to know that so many people are thinking of Caleb.

Caleb's Preliminary Tests Came Back Negative - YAY!!!

2007-10-17T14:59:00.000-05:00

Caleb has experienced some sticking and prodding today. He has had an EKG, another nose swabbing and also got some blood samples taken. That makes the second time since check-in on Monday night since he's had blood drawn. Tonight he'll be bathed in an antibacterial scrub to clean him in order to avoid infection during surgery. As well, he'll get a second scrubbing tomorrow morning to make sure he's squeaky clean!

The preliminary tests checking for infection came back negative, however there is still a slight chance that there is infection. If this is the case surgery could be postponed for up to a few weeks to a few months : - (

The good doctor Gandhi (/a/ like in apple, not Mahatma Gandhi the peace-loving man from India) does not see this to be the case, so that's good news : - ) And as long as Caleb's fever stays down between today and tomorrow then surgery is a go!

On our way down to the Ronald McDonald Family Room we ran into Dr. Gandhi in the hall. He initially passed us by but then backed up and asked us how things were going and if we had any questions. When we tried to enlighten him as to what Caleb's status was, he responded with a simple, "I know." We both feel incredibly fortunate to have such a conscientious surgeon in charge of our son's life. Each staff member, be it a nurse, doctor, or whatever, always has wonderful things to say about Dr. Gandhi, his talents and his love for his patients. We are blessed.

We also want to make sure that all of you know how special it is that you are taking the time to read up on the boy and post comments. The remarks are uplifting and inspiring. They give us a lot of strength to get through what you already know is the most difficult time in our lives. So keep the good vibes coming and keep the prayers going because it means the world to us that everyone is supporting us in our greatest time of need!

Update from the Hospital

2007-10-16T15:35:00.000-05:00

Caleb has been pretty fussy today. He went through a period that nothing, and I mean NOTHING, would help calm him. My mom and I both tried to calm him, but nothing worked. Finally, the nurse got him to calm down. He was running a fever earlier (102) but he was pretty bundled up. We unbundled him and the fever went down. They did do a swab on his nose to check for infection. If that comes back showing infection, they will not be able to operate on Thursday most likely. We are praying that there is no infection and that they will be able to operate. I don't know how we are going to get through more time of waiting for this surgery if need be. His oxygen saturation levels have been kind of lower today, probably average of about 92, but have been dropping for periods of time into the mid and low 80s. Dr. Gandhi came in and said that it was a good thing that he is in the hospital so that they can keep tabs on him and find out what is going on.

I will try to update frequently! Thank you everyone for keeping us in your thoughts!

Caleb Is In The Hospital Until Surgery

2007-10-16T06:07:00.000-05:00

Yesterday, Caleb had a pediatrician appointment to make sure that his ears were cleared up from the ear infection. They were OK and he was cleared for surgery. Dr. Graham (his pediatrician) did say that she wanted his feeding tube changed before surgery, because it was starting to look infected. She said he actually looked pretty good, or at least better than the week before when she saw him.

The home health nurse, Melissa, came over to Grandma Caldwell's to change the tube. Joan (Grandma Caldwell) said Melissa listened to him and was checking his pulse, which she usually doesn't do. Joan said that Melissa thought he was struggling a little to breathe, but it sounded like he was OK. He has episodes where he breathes heavier than others, so nothing abnormal so far.

Later that night, when Bill got there, they were sitting there and Caleb kind of went limp and appeared to stop breathing for a few seconds. He then suddenly gasped for air and appeared fine after that. (He has done this before, but it is still scary.)

When they got home, Bill told me what happened, so we called the cardiologist. He appeared to be breathing more rapidly than usual, but I am not sure if I would have thought so if he didn't have the earlier episode. It is one of those things that I may have convinced myself that he was breathing heavy, because I was paranoid. The cardiologist thought that he was fine, but more for our peace of mind, we all decided it was best to admit him.

He is at Children's Hospital, where the surgery will be. He will stay there until his surgery. They said that if there is an opening for surgery and he is there, they may move the surgery up, since there is no sense in waiting if he is just waiting in the hospital. He is on the 7th floor (which I think is all cardio). Bill said that he has a roomate, which he hasn't had so far. He was up all night crying and wanting his binky. Bill said that he woke up every 5 minutes crying for it. He didn't get any sleep last night, because he can't hold him while he is connected to the machines that check for his pulse and oxygen. When I was talking to him, his pulse was 154 and his oxygen saturation level was 94%. Those numbers are pretty "normal" (whatever that word means anymore) for him.

Bill stayed all night with him last night and is planning on going into work for the second half of the day. I am leaving work at 9:00 AM and planning on being at the hospital, probably until surgery. Please continue to keep us in your thoughts and prayers.

Caleb Is Being Admitted Tonight

2007-10-15T23:20:00.000-05:00

Caleb is being admitted into the hospital tonight after a scare that we had this evening. The doctor's do not think that the episode was anything serious, but just to be safe, we had him admitted. Bill is staying at the hospital with him tonight. I will update tomorrow morning when we know more.

Again, the doctor's don't think it was serious. This was more for our peace of mind I think.

Please keep him in your prayers.

Caleb Ended Up Having a Great Weekend!

2007-10-14T21:31:00.000-05:00

Well after the scare on Friday, we ended up having a great weekend. No need to call the doctor or even the exchange. Great news! Caleb continued to entertain us all with his smiling and increasing activity. He got to hang out with his Grandma and Grandpa Caldwell, Aunt Elizabeth, Uncle Bob and cousins Sarah and Katie on Saturday. I think Caleb really enjoyed himself, since he was held almost the entire night (and boy does he love being held)! No shortage of lovings there!!!

We also got to have our family day at the park on Sunday. We took a nice long walk around Creve Coeur Park and he slept almost the whole time, but it was nice to get out and enjoy the nice day. He sucked on his "imaginary binky", but not the entire time like he did the last time;-)

Caleb is starting to move his legs a lot more. Last Thursday, when the Physical Therapist was here, she said she wanted to see him kicking more with both legs. (He seemed to be kicking mostly with his left.) Well, he is starting to use both legs like she wanted. Hopefully he won't lose that skill after surgery so he can show off his new talent to her! Supposedly, we can start back up with therapy within a few weeks of surgery. That is amazing to me! Well, since he is moving his legs more, he is really enjoying the bouncy seat now. He is able to make it bounce itself and make the music and lights come on, so he is almost always constant smiles when he is in it.

Caleb also got a visit from his friends, Amy and Erik. As usual, he enjoyed that because he was held and cuddled. Amy also helped groom him by cutting his nails. Mom and Dad are scared to do that, so it was time! Thanks Amy!

Well, please keep us in your thoughts this week!

4 days until surgery...

Another Scare Today

2007-10-12T16:22:00.000-05:00

Well, we had another scare today. The day started off with a bunch of smiles and some cuddling! We love those mornings! Caleb had a fever yesterday, so his pediatrician said to call her back today, after treating with Tylenol, if it was up again today. Well, no fever, so we thought we were in the clear. I was laying on the bed with Caleb with my finger in his binky (because that is the only way he will suck it...but boy does he suck the binky!) I realized that he was breathing pretty heavy, but he has been doing that for the past few weeks pretty regularly. Then I realized that he was sweating a lot behind his head and under his chin and his sleeper was pretty sweaty. This is one of the signs of the heart failure getting worse, so I decided to call his cardiologist. Well...when I called and told them what was going on, they told me to bring him in as soon as possible and to go ahead and pack a bag for him (meaning to bring to the hospital). So, needless to say, that got me very worried.

They got us in right away when we got to the cardiologist's office. They hooked him up to check his oxygen saturation levels. This checks how much oxygen is in the blood that is being delivered to his body. They also checked his heart rate. The nurse said his heart rate was running pretty high (I think it was about 165) and his oxygen sat. levels were about 95. They should be about 100, but Caleb's have never been 100%. This is because of the big canal that runs through his heart. What is happening is that in a healthy heart, there is a left and right side. The right side is the deoxygenated blood that is getting pumped from the body, through the heart and to the lungs to get the oxygen. After the blood gets oxygen in the lungs, it is sent back to the left side of the heart and pumped to the rest of the body. Well, Caleb's heart has a big canal in between the right and left sides, so the oxygenated blood and deoxygenated blood are mixing. The blood that is being pumped to his body is not fully oxygenated like it should be. This is why his oxygen saturation levels are never 100%.

While we were in the doctor's office, he had one of his gagging, coughing bouts. The nurse was in there when this happened and got pretty alarmed. His oxygen sat levels dropped down as low as 82%, which I have never seen them that low! His heart rate also went up to about 172. By the time the doctor came in, though, his bout was finished and he was back to "normal".

Dr. Bromberg checked his liver, which he always does. Evidently, the worse the heart failure gets, the liver gets enlarged and moves down. He said from the last time he checked him, it looked better. (Last time they increased some medication, Lasiks, so he thought it was working.) He was asking about the gagging and coughing, so I explained that it was usually around a feed. He concluded that, even though he hasn't been spitting up as much as he used to, that the reflux is what was causing the gagging and coughing.

Sooooooo.......until surgery, Caleb is now on a constant feed, meaning 24 hours. He was getting fed a bottle (90 mL) four times a day and then fed 330 mL over 10 hours at night. NOW....he is getting 30 mL/hr all day and night. He said since it is so close to surgery, he shouldn't lose any sucking skills, which, by the way he sucks his binky, I am not really that worried about it.

They will admit him at any time that we request. He would have done it today if I wanted, but I would like him to be home with us as long as he can. The poor guy has already spent enough time in the hospital, with more to come. The doctor gave me his pager number, since he is not on call this weekend. If we feel like he needs to be admitted, we will just call him and he will call down to admit us. Hopefully we won't have to do any of that!

6 days until surgery...

Becoming More and More Real Everyday

2007-10-11T20:05:00.000-05:00

I talked to the Physician Assistant to Dr. Gandhi today and she filled me in on all of the details of the surgery. Caleb has 2 holes in his heart and one large valve in the middle. In a healthy heart, there are 2 valves, a tricuspid and mitral. He only has one big one in the middle (AV Canal). They will separate this valve to make 2. To repair the holes, they will take some pericardial tissue (the tissue that surrounds the heart) and use it to repair the top hole. The bottom hole will be repaired with synthetic tissue. He may have some residual leakage that may or may not need to be repaired at a later (sounds like much later) time. They will know if this is the case right after surgery.

Because of the location that they will be working on, there is slight risk to the conduction system that makes the heart pump. He may need a pacemaker, but that is very rare.

During surgery, he will be on a heart/blood bypass machine because they have to stop his heart.

During the surgery, they will send a nurse out to update us about hourly. I will try to update this during the surgery so if anyone wants to check on his progress they can. Hopefully this will help to make the time go by faster for us also. I can't imagine just sitting in a room waiting for about 5 hours. When they are finished, Dr. Gandhi will come out and talk to us. During this time, they will take Caleb to the Cardiac ICU on the 7th floor. It will probably be a little while before we can see him though. He will most likely be there for the first few days.

Caleb will have the following after surgery:

Foley catheter - to drain his urine - he will have this for approximately 1-2 days
Monitors for vital signs - for those of you that saw him in the NICU, the same thing - the sticky things on his chest and his ET foot - this will stay on the entire duration in hospital
Chest tube - about the size of a pinky finger - this is a tube to drain the fluid from his chest - he will have this approximately 2-4 days
Blue wires - pacemaker - they may or may not use this but it will definitely be there and will come out when the chest tube comes out
Breathing tube - to help him breathe during and after surgery - he may have this out by the time we see him, but it will most likely still be in - it depends on how he is breathing during and after surgery
Several IVs - one under his collar bone, hands and maybe foot

Caleb may still be under anesthesia when we see him. We will not be able to hold him until the breathing tube and arterial line are out.

After the Cardiac ICU, he will be moved to the Cardiac Floor, which is also the 7th floor. This is just a normal hospital room. We will be able to sleep in the room once he gets into this room. (We must be awake at all times when we are in the ICU.)

I was told originally that he would be in the hospital for 7-10 days, but when I asked the PA, she said that sounded like a long estimate and it could be as little as 5, maybe even 4 (best case scenario) days.

He will probably be on a feeding tube when he comes home still. There will be a dressing on his chest that will need to be changed daily and wiped with an alcohol swab. We will have to do that for several weeks. It takes bone and skin about 4-6 weeks to heal.

On Wednesday, we are going to the hospital for a Pre-surgery Appointment. They will do a chest x-ray, echo, EKG, blood work, swab his nose (to check for infection) and give us a scrub to bathe him in that evening. We will meet with Dr. Gandhi again on Wednesday to see if we have anymore questions.

His surgery will be at about 7:30 AM on Thursday morning. This is all making the surgery very real now. In the past it was just a date that I knew was coming, but now it is actually real. We really appreciate all of your thoughts and prayers. That is what is helping us get through everything. That and the constant smiles that Caleb is giving us;-)

7 more days until surgery...

Surgery Feels Like It Is Quickly Approaching

2007-10-10T17:07:00.000-05:00

Well, today it really hit me that surgery is really right around the corner. We continue to thank everyone for your thoughts and prayers.

8 days until surgery...

Occupational Therapy Day

2007-10-09T21:34:00.000-05:00

Caleb was with Grandma Spahn while Mom and Dad were working. He gave her lots of smiles she said!!! Those smiles keep coming more and more every day.

The Occupational Therapist came today and said that he was doing REALLY well. She was happy to see that since she last saw him (only two weeks ago) he has really become a chunker. That's a good thing for surgery! We want him fattened up as much as possible. She was happy to hear that he is eating from a bottle (even if it is only occasionally), holding his head up better when she pulls him up with his arms, and bringing his hands to the midline. She did some tummy time with him, which he tolerated for a little bit, but he got pretty worn out from it. Afterwards he was working pretty hard to breathe and his coloring even changed a little. I CAN'T WAIT UNTIL SURGERY IS OVER!!! She said that after surgery, he could start therapy again in only a few weeks! It sounds like these little ones can recuperate pretty fast.

Caleb also had some cousins (Jennifer and Jesse) come visit him. He was full of smiles for them as well. By the end of the day, he completely crashed out.

Only 9 more days until surgery...

Countdown to surgery!!!

2007-10-08T19:23:00.000-05:00

Only 10 days until surgery!!! Caleb's weekend was great in some ways and OK in others. He kept Bill and me up ALL night on Wednesday and Thursday. He was screaming all night, which is very unlike him. Usually if we hold a binky in his mouth for a few minutes, he will calm down. Not last week!!! Nothing would calm him. He was running a fever on Friday, so I took him to the pedicatrician. Well, we found out the reason behind those cries! He has an ear infection in both ears! Caleb has been very congested lately and evidently it backed up into his ears. Children with Down syndrome have smaller ear canals and so they get infected easier. He is now on ANOTHER medication (that would make 5 total now) for his ear infection. Just one more thing the poor guy has to deal with!

On Saturday, Grandma and Grandpa Caldwell were over and boy did we get a show! Caleb was ALL SMILES!!! This was the first time that we were definitely sure that the smiles were associated with us and not gas, like everyone says. He sure did keep us all laughing! Thanks for the show, Buddy!!!

Today is Monday and Caleb was with Grandma Caldwell all day. He drank almost 2 whole bottles!!! BUT...I guess he thought with his successes with the bottles, he didn't need that feeding tube anymore. SOOOOO......he decided to yank it out! Bill had to take him in to the emergency room to get it replaced. That is never fun, because it takes so long for something that takes our home health nurse about 10 minutes to do.