Okay...so here is what you really want to see...

I managed to snap a few pictures in between the old tube coming out and the new one going in, so we could all see what Caleb will look like once the lovely yellow tube is gone! Certainly cannot wait for the day we do not have to work around the apparatus anymore.

Below is an update on what has been going on the last couple weeks...

Home week 4, almost 8 weeks old!

Happy Friday! I am so sorry it has been so long since we have updated Caleb's blog. Life has been crazy the last couple weeks, to say the least. I was having my own medical issues last week, but thankfully it has resolved itself and surgery was not necessary. Thank goodness!

Caleb is doing well. He was seen by his cardiologist last week and he thought he looked good. His oxygen was 94. As crazy as it sounds, it is high for Caleb's heart situation, as the Dr. would like it to be in the 80s, but it will get there. He will eventually grow into this shunt that they put in, so his oxygen number will not be so high and there will not be so much blood flowing from heart to lungs as he grows into the shunt. The shunt is buying us time until he has his "complete repair" sometime next year.

Yesterday, Caleb saw the surgeon for them to check his incision again. The surgeon thought it looked great and he did not need to see him again, unless we have any concerns that arise. YEA! One less Dr. off of the check-up list! He said he could even take a bath now too. Up until this point he has only been able to have spit baths! Can't wait to let the boy splash in his little tub!

He was seen by his home health nurse for the second time today. He is up to 9 lbs. 7 oz. which is not a great increase from last week, as he only gained 3 oz. from last Monday. We are trying to increase his feeds a little bit, so hopefully that will help. Just concerned that the increased feeds will irritate his reflux more. Frustrating to say the least. Although, the nurse did say he was such a different child from last week, much more awake and less irritated when he is awake. He even cooed at her a couple times. So clinically he looks great...just his weight is the concern. I was hoping since he has been so much more awake and alert over the last week, it would count toward the number of calories he has probably spent, leading to a smaller weight gain, but the nurse says not so much. His eating/drinking from a bottle is where he spends most of his calories. We changed his NG tube as it has been a month since it was put in as we were leaving the hospital. Of course, we were given the wrong size by our home health care supply company. The tube is 14" longer then the last one!! So now the home health care company is sending us the proper size, but now I will not have the nurse to help me change it. :( Bleh!! This 36" tube is just crazy long and ridiculous, so there is no way we can live with it like this. So now we will have to change it ourselves. Prayers would be greatly appreciated!! ;) We can't wait for the day that Caleb will not need to finish his bottles via this tube! It is so easy for us and Caleb to get tangled up in it, so we look forward to the day that Caleb can drink his entire bottles consistently and the tube can go!

I am still looking for a routine that works for us. It is overwhelming in the afternoons with trying to figure out how to help Ryan with his 4th grade homework, keeping Sara out of his hair, feeding Caleb, etc. The word "multi-tasking" has taken on a whole new meaning for me! I can't wait for the day that it is not all so overwhelming. We are so thankful for each and every meal that families have brought for us! We would probably not have been fed otherwise. :) From the meals, to the calls and messages of encouragement, to the prayers said by each and every person, we could not have made it this far without each and every one of you!!

Thank you SO very much!
Joanna & John

Home - Week 2

It is hard to believe that Caleb will be 6 weeks old tomorrow. He has only been home 2 weeks, but yet, it feels like months. The demands of his schedule can be overwhelming most days. His feedings can easily take an hour to complete, not to mention his medication schedule and working to get him to sleep and then trying to keep him asleep and then waking him up to feed. He certainly has what I would call "NICU withdrawl". He has not slept near as soundly at home as he used to at the hospital. This leaves mom to not have any time to do anything! Most days I cannot even remember when I last went to the bathroom! The weekends, when John is home, are priceless. It is amazing what I can get done around here when he does a feeding instead (like update this blog! :))

We have not had too many issues with Caleb, despite his medical conditions which we are trying to learn to live with (Down Syndrome and another heart condition that will be fixed closer to when he is a year old) and not let the anxiety of them overtake my days. It is hard! Last Thursday night we hit a wall where Caleb was literally up ALL night in obvious discomfort. When we hit 4 in the morning with no relief, I felt like I had one foot out the door to the ER. Thankfully he finally fell asleep for a few minutes at a time. It was so emotionally and physically draining. I was so anxious as to what the problem could be. He would only sleep if he was held but thankfully around 4 am, he could go in the bouncy seat, as long as I constantly bounced the chair. We headed to the pediatrician to see if he could figure out what might be going on. He pretty much figured it was reflux/heartburn. I was just hoping it was not a more serious issue. I am not sure how they can rule that out so easily with Caleb's conditions, but I was hopeful the Zantac would work. Thankfully he did okay most of the day on Friday, but was told that it might take a couple days of receiving the medicine for it to take full effect. So far it seems to be doing the trick. He has slept much more comfortably the last 24 hours.

That hardest part about Caleb's demanding schedule is not feeling like I can or do spend any time with R & S. I have only made it to the school path to pick up Ryan twice on the first week of school. I have never had that much trouble getting there before. I really like to be there to greet him when he gets out of school and see how his day went. I truly hope that somehow all of this will fall into a routine soon.

Up this week...a visit with the cardiologist and the surgeon. He has not seen the cardiologist since he left the hospital, so here's hoping he does not find any issues. The surgeon will hopefully like what he sees in Caleb's incision and we will not have to go back in the near future. One less Dr. visit would be helpful. :)

We appreciate your prayers and support during this journey...we certainly hope to see some light at the end of this long tunnel soon. Light in the way of a 'normal' routine. :)

One week later...

Wow, are you sure it has only been one week since Caleb came home?! Feels like at least a month! Last week we visited the pediatrician here in town (boy was it nice to only have to go across town to visit a doctor!) and the surgeon (back in Falls Church). The pediatrician did not have much to say, I think he was just trying to get all of Caleb's information started in their system and have a 'baseline' from which to work with in the future. We go back this week to have his weight re-checked, etc. Hopefully he will somehow have gained some weight as his feeding schedule is demanding, I hope it has paid off. Granted, Caleb's entire schedule is a lot of work, so hopefully some things will start to become more routine soon, but the feedings are the most time consuming and are suppose to occur every 3 hours!!

We also had a post-op appt. with the surgeon last week. We waited over an hour to be seen and of course, as it would be with most surgeons, he spent less then 10 minutes with us! They took a quick peek at Caleb's incision and especially the areas we are cleaning each day. Thankfully they were pleased with what they saw and I don't have to take him back for another two weeks this time.

In the last couple days, Caleb has started to become more awake. This can be a nice thing and it can also be very hard. He tends to spend the first half of his awake time eating, although even when he is awake for a bottle, he still does not drink all of it. The hard part about his newly found awake stretches is the fast that he is then really hard to get back to sleep. Thankfully he has not had one of these awake stretches during the night, but I am sure it is coming as he starts to 'wake up' and figure out which is day and which is night. Here's hoping the feedings will improve if he is starting to be more awake. More awake = more hungry?

This week will certainly be a test for all of us. Ryan starts back to school tomorrow, John has to go back to the office (he was working part-time from home last week), so I will be on my own for the first time since we brought Caleb home. Thankfully this week we only have the pediatrician appt. to deal with. Hopefully I can get Sara back to her speech therapy this week as well. She has missed several weeks amongst all this chaos. In this first week I have felt like I am taking care of 6 kids, not just 3. I can't imagine how challenging this week is going to be now that I am flying solo during the day! Prayers for keeping Caleb on schedule while trying to keep Sara entertained, all before Ryan gets home from school, would be greatly appreciated.

hmmm...not too sure about this place?? ;)

Can you tell he is home?

So sorry for the long delay in updating...obviously Caleb is home. :) We are working hard to keep up with the every 3 hour feedings (which can take up to an hour to complete when the feeding tube/machine is involved), wound care, medicine schedule (one medicine is every 8 hours, one is twice a day and another is once a day!) and so on. Not to mention trying to entertain/care for a 9-year-old who is seriously dreading the start of school next week and a 4-year-old. Oh, wait, there are all the follow-up doctor's appts. too...pediatrician, surgeon and cardiologist. The first follow-up appt. went well with the pediatrician on Monday. It took forever to be seen, but I guess that is the price to pay when you go in on a Monday afternoon. Caleb did not gain any weight, but he didn't lose any either, guess that is good. He weighs in at 8 lbs. 9 oz. Just a few ounces up from his birth weight, but with everything he has been through in the last month, we will take it! :)

Tomorrow we have a follow-up with the surgeon to check his incision and here's hoping they do not see anything suspicious. We follow a very strict wound cleaning process every night. Hopefully we have done a good job with it. Caleb has literal tear-shaped holes in the top and bottom of his incision where they had to reopen it because it was starting to get infected back at the hospital. I really hope it is still looking good to them and we will not have to keep going all the way back to Falls Church to see the surgeon.

All in all, Caleb is doing great. He still loves his sleep more than anything. He is certainly adjusting to a quieter environment as the hospital was always SO noisy with the other babies crying, monitors beeping, etc. Who would ever imagine a halfway quiet house would cause him to not sleep as well. He does not drink an entire bottle yet (just 75 mls), thus why he still has the NG tube to complete his feedings, but hopefully that will all come together soon. Life will be much easier once we can get rid of this last tube!

We could never make it through all this without the wonderful meals people have been providing and the countless hours that friends and family have provided in babysitting R&S! THANK YOU!!