Merry Christmas and Happy 2011

Season's Greetings!! What a different experience it has been to get ready for the Holidays this year. But on to Caleb... :)

Over the last few weeks, Caleb has been holding his head better and longer, so hopefully he will be able to start some solid foods soon! He is drinking almost 5 ounces/bottle these days and still continues to increase little by little each week. I think we are about to graduate from the small bottles soon. His most recent cardiologist appt. went well. He weighed in at 11 lbs. 13 oz. The cardiologist removed one of his medicines that he was only taking once a day and the other medicine that he took every 8 hours was reduced to a very little amount to gradually wean him off of it. As of today, he is off of it, and we will get his oxygen checked this week when he goes to the pediatrician for a check up. He can stay off of this medicine as long as his oxygen numbers are still down in the 80s and haven't jumped back up into the 90s again without this particular medicine. So now he is just on Zantac for reflux and one dose of aspirin a day to keep his shunt from developing a clot.

We certainly continue to see him improve little by little. He does have a County therapist come to work with him every other week. She has certainly seen improvement in him just in the first few times she has come. We are hoping he will not have his next heart surgery until Spring to summertime...not until his oxygen number are down into the 70s consistently. Hoping between 9-12 months of age...but it will certainly depend on Caleb and how he does between now and then.

Hope you have had a wonderful Christmas!! We are certainly thankful to have Caleb here with us and not in the hospital. We are so thankful he is off of his feeding tube and never came home with oxygen, etc. He is truly a little miracle!! :)

HAPPY THANKSGIVING!!

Wow, we have made it to the Holidays?! Really? When Caleb was born almost 4 months ago...who would have ever imagined we would have been through so much, in such a short time! We are SO thankful this year for him and how much improvement he has already made. From getting out of the hospital after one month to getting his feeding tube out already, etc...we are certainly counting our blessings this year!

At his cardiology appt. last week he weighed 10 lbs. 15 oz! We are getting there...slowly but surely. :) He has his 4 month check up at the pediatrician on Dec. 8th, so that will certainly be a true test of his weight, as they are the ones who have been keeping a much closer eye on it then the cardiologist. At the cardiologist, his oxygen numbers were down into the 80s now, so he cut his medicine amounts in half. He feels that by next month, we will probably be off of them for good! Oh what a day!! He will still need to take aspirin to keep his shunt from forming a clot and the Zantac for his reflux, but those are certainly manageable and do not have to be given on such a strict schedule. :)

Caleb is eating/drinking more each and every day. To go from having to feed him every three hours and him hardly being interested in it, to now, where he does not like to even stop and burp! We are up to about 3 1/2 ounces, but he certainly seems like he would take more sometimes as he is unhappy when the bottle is done. We are slowly increasing his amount so that we do not aggravate his reflux! We do not want that to creep back into our days. He is eating every three hours during the day and still sleeping in between each bottle. With his heart condition that still needs to be repaired, he just does not have the stamina to stay awake longer then an hour and a half to two hours. He is sleeping good at night - approx. 6-7 hours, so again, very thankful!! :) Now if we could just get mommy to sleep all the way through that time we would be doing good!

There is truly NO way to sum up all that we have learned from Caleb already or what we will continue to learn from him each and every day in the future, but we are truly thankful for him no matter how hard it has been! We will never know why God chose us to be his parents after we thought we could not have any more kids of our own, we were even getting ready to start another adoption process! We are just so glad we did not give in to the pressure of the doctors that all said his outlook was "grim" and that if he did make it into this world his quality of life would be poor. Does that picture resemble a baby with poor quality of life?!

THANK YOU so much for each and every one of your prayers, meals, cards, gifts and most of all love and support over the last 4 months. We appreciate each and every one SO much. I hope to actually get to thank you notes one of these days.
HAPPY THANKSGIVING!!!

Happy Quarter Birthday, Caleb!!

Sorry the last couple weeks have slipped right by me again. Caleb is now 3 months old! A quarter way through his first year. The doctors told us so many times during my pregnancy that his outlook was "SO grim, IF he even will make it to term". Guess we have shown them!! :)

The week before last at his weight check he gained 5 ounces! Of course, this past week...one lonely little ounce. Oh well. He continues to eat pretty well, although he has certainly slowed down from what he was eating. Guess this growing spurt has already passed. Here's hoping the good bottle drinking (even though it is just 3 ounces) continues though...just maybe not as often?! We shall see...just hope we don't backslide, that's for sure.

He seems to have a little break from Drs. appts. Since he gained 5 ounces week before last then the pediatrician did not need to see him on a regular basis anymore, even though we had to go back this week for shots. So I guess we have a couple down weeks until his next cardiologist appt. His services with the County Early Intervention program start this week but they are only sending a DS (developmental specialist) at this point. Now sure what all she will do, but hopefully it will give us some insight into his development and what we can be working on. He is "behind" on a couple things like holding his head, but I do not count the first month of life as much since he did nothing but lay in a hospital bed and sleep. So, hopefully we can get him caught up soon enough. We are working on the neck support and tummy time, but he does not like the tummy time too much as he just ends up putting his face right into the blanket.

On the flip side, he is starting to recognize us and we can usually get him to smile when he is in a good mood (fed and rested). What a joy it is to have him smile back at you and sometimes "talk" back to you as well. It far outweighs any trials of the first couple months. Unfortunately, this also means that he is specifically not recognizing faces he is not familiar with, so we apologize if he screams when not in the best mood.

Thank you so much for your continued prayers on Caleb's behalf. We will show these Drs. yet! I sure wish I could take him back to each of the specialists that gave us bad news on top of bad news during my pregnancy. Wonder what they would think or say?! :)

Caleb and his "big boy bed"

Happy Wednesday! Just wanted to share a couple pics of Caleb taking a nap in his crib. :) Just seems so surreal to have him home and in his "real" bed. He had SO many different cribs at the hospital...it is nice to see him sleeping in his own bed today!! Here's hoping he will start sleeping through the night soon and the reflux will subside enough so he can enjoy many more restful hours like this...

Week 11...and week 12 :)

Ah, week 11 (last week)...what do you have in store for us? Well, at least there is a beautiful, whole-mouth smile tucked away in there. Brings much joy to your mamma to see you smiling more these days!!

Another weight check - up one ounce in one week. :(

Cardiologist appt - he says you are still looking good! :) He put your stats on the actual Down Syndrome height/weight chart and you are 75th percentile! Nice to know our pediatrician office says there IS a growth chart for Downs children, but is not using it. Argh!

Eating - well that has become MUCH better the last few days!! Something just seems to have clicked and you are drinking more and more of your bottles, good to the last drop! We are still only on about 75 mls, but you are certainly drinking more and more of them all gone. It is such a welcome sight!! Funny that your older brother and sister cheer for you when you finish a bottle...guess we have been living bottle to bottle too closely around here. :)

Week 12 - you snuck up on me! Today was another weight check at the pediatrician office. Thankfully your new eating habits have become obvious!! You gained 5 ounces in the last week - up to 10 lbs. 7 ounces!! YEEEE HAW!! With this new eating pattern during the day (barely making it 3 hours till next feeding), you are able to go a good 5-6 hour stretch at night. Now if only daddy and I were ready for bed at the moment you go to sleep...guess we better work on that so we can get at least 5 hours too...

Here's hoping your new found love of eating is here to stay! It is a very welcome sight in this mamma's eyes!! The throwing up has not been as bad, I assume thanks to the Nutramigen formula, but you do still throw up some...usually during a bottle, so that tells me you are just full of air thanks to how quickly you are trying to drink them now. It is amazing how quickly we went from trying to feed you every 3 1/2 hours to you now wanting a bottle every 3 hours or sooner.

Not too much going on this week. We just have a meeting with the County Early Intervention ladies to see what plan of action they have for you...OT, PT, speech?? Wonder what all it will be...

Thank you all for your prayers and support!

Week 10...

Alright, let's see if I can get an update posted today...hmmm...just one goal today...let's see how far I get... :)

Week 10 - It is hard to believe that Caleb is already 10 weeks old, yet on another hand, it is hard to believe that it has only been 10 weeks! With all that he has been through already in his little life and how much we have all been through with his daily care, we are thankful to have made it this far. Hopefully it just gets easier from here!

Our biggest milestone the past few days...the NG tube is G.O.N.E.!!!!! We got to a point where we were not using it as it seemed to make him throw up before a feeding was even complete...it was just overflowing him. So on Saturday, I pulled it! Yes, the pediatrician was fully aware of it, they were the ones last week at his 2 month check up that suggested it. Caleb then decided to go on somewhat of a hunger strike after it was gone. Talk about confusing. Here we thought we were helping him but getting rid of the thing and that drinking his bottles would be SO much easier and more comfortable for him, but no...not Caleb. He decided he was done with his bottles after only taking about half. He has started to drink more the last 24 hours, so here's hoping he is truly "self' regulating" at this point. I took him back yesterday to have his weight re-checked and UGH! He was down two ounces from last week. The pediatrician was not concerned though, so that was a relief. I was so worried they would put the feeding tube back in, not that we were using it though, so it was a very odd situation. Pediatrician really feels with all the changes he has been through lately, he will get it soon enough. Please pray that Caleb will begin to drink all of his bottles (he is still only on 80 mls), so we can start to see some good weight gains. He did pretty good yesterday, drinking at least 2/3 of the bottle, but he also spit up more as well. So hopefully his stomach will start to get comfortable with him doing this all on his own now. We also changed his formula to the hypoallergenic "Nutramigen" to see if it helps him to be more comfortable during a feeding and afterwards. So far it does seem to help, but it is really early to notice any major difference in him. I was surprised he drinks it! The stuff smells awful.

Thank you for keeping up with us along this wild ride. We could really use some extra hours of sleep at night, but hopefully those will come soon enough as he starts to get the hang of drinking more each bottle and being more comfortable going longer periods at night. I feel like I go about this house as a zombie most days.

YEA! I did it...I completed a task today! he he

I love you mommy!

Hi Mommy,
I know I can't do a whole lot on my own right now, but I wanted to find a way to let you know how grateful I am that you are taking care of me. You don't fully understand what is going on inside of me which is very frustrating. I don't cooperate all the time, but it will get better. I really enjoy the time that you spend with me. I can tell that you really love me and want the best for me. I am looking forward to the time that I can fully show you how grateful I am that you are my mom. Thank you for not giving up on me. I love you, mommy.
--Caleb

P.S. I love all the pics. I really am a cutie. :)

Two-month check-up

Just a quick update about Caleb's two-month check-up today...
He weighed in at 10 lbs. 3 oz. Which I thought was going to be a good weight gain, but it was only 1 lb. more then when he was there last month. :( He dropped from the 35th percentile to the 18th! He grew a little over an inch, but again, not as much as they typically see after one month time. Oh well, I see it as a gain, I was thrilled to see him hit 10 lbs. :)

We discussed Caleb's feeding issues with the nurse practitioner at length and basically came to the conclusion that we just need to feed him what he will take, when he will take it. Instead of trying to force a certain amount in every feeding, we are just going to let him drink what he wants and see if he will "self-regulate" over time. I will take him back next Monday to make sure he is still gaining weight and not losing with this new feeding approach. She actually also mentioned taking the tube out for a few days to see how he does, whether it helps his feedings. I am quite nervous about that as he is on 4 medicines that go in much easier by tube vs. mouth! We will see how these feedings go before we decide whether taking the tube out is worth it possibly having to go back in if this new plan doesn't work.

We appreciate your prayers as we are trying to be hopeful that this new feeding pattern will help Caleb gain weight and be able to self-regulate enough to drink all of his bottles, so that the NG tube can go for good. We certainly believe that the tube running down his throat is not helping the drinking comfort level as well as being a nuisance to his reflux issue.

Thanks so much!!

Another day...

I am sorry if my venting yesterday caused any panic or concern for you. Caleb's feedings or lack there of, are stressful, but nothing that will not pass. I am trying to remind myself of this each time we sit down to a bottle. I have basically decided to not 'force' anything extra into him, that when he is done drinking the bottle, he is done. That way, hopefully, what he drinks is comfortable for him and that is all we can do for now. He has his two month check up tomorrow with the pediatrician and you know full well we will be discussing all this in great length. I am also hoping that the pediatrician can get him in to a closer GI doctor a little sooner. Granted, next Tues. is probably pretty good for a pediatric GI doctor, but it is far from the house. The office that is close to our house could not see him until mid-November! That just wouldn't do, so we had to take the one further away that had an earlier appt. So I hope the Dr. tomorrow can pull some strings and get us in to the local office sooner...we shall see.

Thank you all so much for your prayers and support. I know I am not the only mother who has ever dealt with reflux, but it sure isn't fun! Esp. on top of Caleb's other health issues. I am watching for signs of dehydration and thankfully he is not showing any signs of it so far. I will certainly let you know how the appt. goes tomorrow...hopefully Caleb has gained a little weight since we were there a month ago. His reflux is not every bottle thank goodness, although he is drinking little bits at a time, but I guess that is better then pushing too much and half of it comes back up! I guess I need to start counting every little blessing I can find. :)

Why? Why? Why does this have to be SO hard?

I have asked John that question many times in the last week. I have been completely overwhelmed lately. Caleb's care and feedings require me to stay home most all day, every day and it feels like it is never ending. Just when I feel like I can get to a place to rest my very weary head, he wakes up! You just never know how he is going to be from one minute to the next, whether he is going to throw up all over the place, etc. So I am really not sure how much of Caleb's daily care is stress or just completely overwhelming me. Not to mention the couple 2-3 hour naps I get each night certainly do not help. The last couple days I have felt lousy, just completely exhausted and I know it is because I am not taking care of myself. I do not get to rest at all in the day because if Caleb is actually asleep then I try to spend time with Sara or help Ryan with homework. Not to mention the dishes, laundry, etc. :) Needless to say, I feel completely inadequate as a wife and mother to Ryan and Sara these days!!

Caleb's feedings the last week have gone from bad to worse. We tried to increase his volume a little bit and it completely backfired on us. It aggravated his reflux to the point that now he is hardly taking 80 mls without issue. Most days at least one feeding comes back up. Caleb is not fed like most newborns where he eats until he is full. He does not have enough endurance from his heart conditions to do that. So some bottles he can drink a good bit (2/3), and some bottles he barely drinks any at all. We have tried giving up on the fact that he needs to eat every 3 hours as we were instructed. He was certainly never hungry enough to eat that often, so we have tried to space it out to 3.5 hours and sometimes he is hungry enough to drink a good bit and then the next feeding he won't hardly drink at all. He is not gaining weight like he should, so this just compounds the stress for me! He does not have the endurance to drink a whole bottle, so that is why we were put on a strict schedule to feed him 24/7. We have slowly increased the amount and tried to spread it out over more time so that he is actually hungry for the next feeding, but most of the time, he could still care less about eating. We are up at night putting his milk/formula into his feeding machine, just to try and spare him a few calories being spent by drinking it from the bottle. So he probably would sleep a really good stretch for us at night, but we do not have the luxury to enjoy it...he needs the feeding, no matter what.

Just today, Caleb is basically throwing up anything that I try to 'push' through his NG tube. I give him about a half hour to drink what he can/wants from the bottle and then we are suppose to push the rest by machine or syringe. Today, anything extra I have tried to push just comes right back up. Couple people have wondered if it is a milk allergy, but he does not seem to be all that uncomfortable. He just literally overflows. He is not really cranky or anything like that. He just overflows and that is it. I would assume if it was a milk allergy then he would be much more miserable??

I am sorry to vent my frustrations here on the blog, but we just really need some prayer as we seek extra doctors advice as to what is going on. Just when I thought we were free of one doctor (the surgeon), and those extra appts...now we have a new one! He has his two-month check up on Wednesday and it will be interesting to learn his weight. Here's hoping he has at least gained a little bit. We have looked into taking him to a GI doctor and have an appt. with them next week. Here's hoping they can help us figure out what is going on and why he is throwing up so often anymore. He never had this problem at the hospital, so it is frustrating to feel that he has gone downhill, so to speak, since he has been home. He was up to taking 90 mls from the bottle and now we struggle to get 80 to stay down. Today we are not even close to getting 80 mls to stay in. And he is suppose to be taking 600 mls in a day! We are not even close!

Hopefully I can post some good and uplifting news soon...sorry again for laying all the frustration out here on the blog.
Joanna

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!!

He's here! He's here! Sir Caleb is here!

Well, we went (John came with me this time) to the hospital yesterday disappointed...and came home...MANY hours later...a whole family! :) We were not at the hospital, in Caleb's room, but a few minutes when his "case manager" came in to see how things were going for his release. We told her for some reason, he was not being released today, but we were not exactly sure why he was not being released. She got on her phone to the cardiologist and found out that he just needed to have his incision checked by a wound care specialist and for her to teach us how to take care of his incision, as well as one last set of lab work to check his electrolites. He passed both of these final two tests and so the paperwork began for his discharge...

Wow, we have never been so overwhelmed (and remember, we have adopted a child too!) with so much paperwork and different people talking to us about Caleb's needs. From how to run the feeding pump, how to take care of his incision, how much he should eat and how, what medications he needs and how they need to be administered and when, and don't forget the home healthcare deliveries for all of his medical supplies! Whew!

We finally pulled in after 8:30 to a wonderful family crowd to welcome him home!! Aunt Diana and Katelin were here with a big sign to welcome him home too...decorated with gauze pads, band aids, etc. :) Ryan made a sign across our front porch that said "He's here! He's here! Sir Caleb is here!" What a wonderful welcome for him.

After a month long journey, traveling 90 miles a day, we are so thankful to have him home. We could never have made it without all your prayers, support, meals, and don't forget our parents who have provided more babysitting hours for Ryan and Sara then would could ever count! THANK YOU all so very much!! He is home thanks to each and every one of you.

Here's to the next chapter...

Here's hoping it is Christmas Eve...

We are truly hoping that tonight is Christmas Eve in our household! The cardiologist actually told the nurse this morning that Caleb will be able to come home in the next day or two. Here's hoping tomorrow is THE day! :) Here's hoping that tomorrow is Christmas for our house!! That is certainly what it feels like...anxiously awaiting Christmas morning...anxiously awaiting the call to say Caleb can come home!

They increased his profusion medicine again today from .45 ml to 1 ml., as he was still high-sating in the upper 90s, even 100 again today. So we truly pray that the major increase will do the trick and bring down his oxygen numbers to where they need to be to make the cardiologist happy in the morning. He can be released over the weekend, but I am sure it will not be with the same amount or quality of information that we could receive on a weekday.

Somewhere along the way today they increased the amount of each feeding again. Now his goal is to drink 75 mls in a bottle. He actually drank all 60 mls at one of his feedings during the night last night, which totally surprised me. He has not come close to drinking that much at any of his feedings so we have no idea how that nurse got him to drink a whole bottle. Not sure how long it is going to be before he can drink all 75 mls at each feeding. They apparently increased the amount because he has not gained any weight the last couple days.

We certainly appreciate the prayers that his oxygen numbers would come down to a comfortable level overnight and the cardiologist will be pleased with what he/she sees in the morning!!

Merry Christmas! :)
Joanna

The never ending marathon...

Wow, who would have ever imagined that a newborn could handle an MRI without any anesthesia?! Well, Caleb did!! :) We got a call this morning to approve the procedure and the anesthesia being used, and I did ask the anesthesiologist about using as little as possible. He is a very sleepy boy and I figured he would sleep right through the thing, so I asked him to use as little as possible. I have no idea how the stuff works, I probably cracked the guy up with my silly request, but somehow, someway, Caleb did not need any anesthesia to get through the MRI. And, of course, the MRI was inconclusive again. Apparently it showed some areas where they could tell there was not a problem, yet there were a couple other areas that made them wonder if it was 'suspicious' for tethered cord. In the end, the pediatric resident doctor told me that he does not display any of the symptoms of tethered cord, so we just need to monitor this situation with our pediatrician. Hopefully it will not turn into a more serious situation once he gets older and bigger.

The surgeon is fine with Caleb's incision and it is not what is now keeping him at the hospital. Now it is back to the cardiologist because Caleb's oxygen numbers were running high this morning/today, so they have changed the dosage of his medicine. With that, we get to wait another 24-48 hours to see how he responds to this change in medication. Yes, it sounds funny that his oxygen numbers are actually too high, but that is an indication that his heart is working too hard and too much blood is now going into the lungs. The medicine is for profusion. It is helping his blood profuse to his extremities rather then all go into his lungs. Just a side effect to having the BT shunt in there to help get blood flow to this lungs. It is a little big for his size, but something he will grow in to, then he hopefully will not need any of these medicines over time, as he grows in to the shunt.

We are hoping that Caleb can be released before the weekend. Everything at the hospital tends to come to a halt over the weekends as all the specialists and 'real' doctors are not there. So if we do not get him out of there on Friday, I have a feeling we will have to wait until Monday! :( Please pray with us that this medicine change does the trick and we can get him home on Friday at the latest!!

Thanks so much,
Joanna

Day 22 / Post Op Day 8

Oh please tell me we are getting close...

Today was a much better day in regards to Caleb's oxygen numbers. Thank goodness!! Doctor said he just wanted to keep me on my toes yesterday...this momma didn't find it funny. ;)

We had a very quiet afternoon, with one feeding around 3 pm. He still only drank half of his bottle for me, which is what the nurse told me he has been doing since last night - drinking 30 of the 60 mls. We are hopefully looking at bringing him home either tomorrow or Thursday. Certainly hoping it is Thursday at the latest. According to the resident pediatric doctor that I work with on the peds floor, the cardiologist is just checking in on him during their rounds in the morning. I guess they have no other 'orders' for Caleb. The surgeon needs to be happy with his incision issue in order for him to go home. It was not infected, but they are certainly still watching it closely and keeping clean bandages on it. So here's hoping tomorrow it looks perfect enough for him to go home...although I have a strong feeling it is going to be Thursday.

They have an MRI ordered for Caleb tomorrow to check out the "dimple" at the top of his back side. They did a sonogram on this area over a couple weeks ago and the results were inconclusive, so we are praying that the MRI tomorrow shows no deformity and that we are not looking at tethered cord syndrome on top of his other issues. We do not need any more! Please pray for him as they will have to sedate him in order to get the MRI done. Please pray that the MRI does not show any issues, as we could be looking at another surgery for him someday if it does show that he has a tethered spinal cord. So he could use prayers for the results as well as the procedure tomorrow. We are not crazy about them sedating him, but there is no other way to get the MRI done.

Thank you SO much for sharing this journey along with us! Here's hoping he truly can come home in the next couple days!!

Joanna

Happy 3 week birthday, Caleb!

Let's just say, we were truly thinking we were going to be able to bring Caleb home in a day or two...after today's visit...I now feel like it is going to be another 3 weeks. I also wish I could say that today was another holding steady kind of day...but it wasn't. When I went to see Caleb today his oxygen levels were all over the place. For some reason he has been holding steady in the low 90s since surgery, but today, he was only in the mid 80s at best and kept desat-ing into the mid-to low-70s. Very frustrating to say the least and with him being on a peds floor...well, lets just say it is hard to get the attention you feel you need in this situation. No one seemed overly concerned about it since he seemed to recover from the 'desat-ing' quickly, but it is just nerve racking to say the least to see him doing this today. We have not had any oxygen problems since they turned it off last week, so today...ugh! so frustrating! Just have NO idea why this would be occuring after many days of no oxygen problems?!

The nutrition specialist also decided today that he should be eating 60mls at every feeding, not 45 mls. I guess they base this on his age and weight, so it was decided to gradually increase his feeds this evening to 60 mls! We were having a hard enough time getting him to take all 45 mls. from the bottle, so I highly doubt he will be drinking all 60 mls. any time soon.

We pray that the doctors can easily figure out what is causing Caleb's low oxygen numbers today and hope it is a quick fix. We thought we were SO close to bringing him home...

Here's hoping tomorrow is a better day!
Joanna

Post Op - Day 6

It is hard to believe that almost a week has passed since Caleb's heart surgery! Some days certainly longer then others, but so thankful that he has made such huge progress each and every day! We are basically sitting in a holding pattern now and really just need him to drink from a bottle better before he can come home. The nurse today did not think his incision culture results must have been anything serious as he was not put on an antibiotic, so she assumed the preliminary results were negative for infection. I hope to get a doctor to call me tomorrow after their rounds, as we have not spoken with one in a couple days. Another downside to the peds floor vs. an ICU floor! I hope to get a better idea from them as to what Caleb needs to be eating by bottle in order for him to be able to come home.

He did a little better today with some bottles, but not all. So it was still up and down as to how much he could handle drinking by bottle before he tires out. He certainly tires out easily, esp. when trying to coordinate the sucking/swallowing/breathing pieces of drinking from a bottle. Please continue to pray that this will all come together for him soon. We are so anxious to bring him home and care for him ourselves!!

Thanks so much,
Joanna

Post Op - Day 5 - Holding steady

Hello again! We were all able to visit Caleb today as he was moved to the regular "peds floor" overnight. I can already tell a huge difference in nurse care, so here's hoping he gets to come home soon!! I wish I could say that I had a place to stay with him overnight or at least for a longer period of time, but I don't. He is in a double room and he is in the spot by the door. This leaves us with a chair next to his crib and that is it. The spot by the window has a bench seat, etc. to use, but not our side. :( The lack of nurse attention on a regular floor makes it much harder to leave him. He is more awake and alert the last couple days as well, so it is SO hard to leave him like that!! Those eyes just scream "please don't leave me here again"! :( I feel like he just lays there in his bed except for the couple hours that I/we are there to see him, hold him and talk to him. Like I said, getting much harder to walk away!! His blood pressure and oxygen levels continue to be good, so we are truly just dealing with feedings at this point in order to bring him home. He is suppose to get 45 cc every 3 hours. Whatever he does not take by mouth, he gets in his feeding tube. Well, today was not a good feeding day. Last night when they started this bottle process he took 30 cc's in the first two bottles. Unfortunately, today, he has hardly taken anything by bottle. I think the most he took for the nurse today was 20 cc's, but most of the feedings it was just 10 or so. Not sure if he is just not that hungry yet to eat every 3 hours or what the deal is, but he was wide awake for a couple of the feedings, yet he still only took very little. Hopefully it is just a matter of him getting used to being fed this often and maybe he is not feeling that hungry yet?? Not really sure, but hopefully his coordination of sucking and swallowing will kick in soon and he will start to feel hungry enough to eat that often as it will get him home sooner. I am not sure how much he needs to be eating by mouth before they will let him go, but the nurse mentioned it will probably still be a couple days. Here's hoping that is it!!

The surgeon also did not like the looks of his incision this morning so they sent something off to the lab to test it. Please pray he does not have an infection starting...that will certainly delay him coming home as well.

Please pray for his coordination in eating with the bottle and how his body handles it all. We are really hoping he can come home in a couple days, esp. with his new living arrangements! But that will all be determined by how well he is eating...

Thank you so much for sharing in this journey with us!

John & Joanna

Post Op - Day 4

More forward progress today - so much so that he has orders to move out to the regular "peds floor"?! No more ICU's?? YIKES. Fortunately, there were no beds available in the regular peds section so he is still in the PICU for now. It sure makes this momma feel better knowing that he has a nurse doting on him. :)

Today, he had his arterial line removed and so he is down to a regular IV (to receive medicines) and his NG tube (feeding tube). Of course, he still has a lot of patches stuck to his chest that are monitoring his heart rate, respiratory rate and oxygen rate. But those have all been good today. I did try to hold him for a few minutes this afternoon and he got so irritated by something (I think he is starting to get hungry) that his heart rate and oxygen rate started to go way up, so I put him back in bed. He was sucking the life out of a pacifier, I could just tell that he was getting hungry. He was still just receiving 15 cc/hour by feeding tube, so I asked the nurse about increasing his feeds since they had been at this rate for the last 24 hours and he was handling them fine. She asked about it when the doctor made his rounds and after a speech specialist came to check out his suck and swallow function. He passed his test with the speech person, so the doctor was fine with having him take 45 cc/feeding. He can take as much as he can handle by bottle and then the rest through his feeding tube. Nurse said she tried the first one at 5 pm and he took 30 cc by the bottle and tired out, so she gave him the other 15 in his feeding tube. I was just so glad to hear that they were allowing him to have more food at each feeding now. Hopefully he will be more satisfied now.

We are certainly closer to bringing him home!! He needs to continue to not have any oxygen sat. problems as well as continue to eat well for them. Here's hoping! Thank you SO much for each and every one of your prayers, no matter how short or long. :) He has certainly come a LONG way and we continue to pray that he will not have any oxygen problems, esp. as these larger feedings are introduced to his system. We never imagined he would be able to come home without any sort of oxygen, so here's hoping that piece stays 'stable'!!

Thank you ALL so much! I think we can finally see some light at the end of the tunnel...
John & Joanna

Post Op - Day 3

Sorry for the graphic nature of the picture for those who may find it a little "too much"! :) It is actually SO much better then he has been...has a lot less hooked up to him then he used to. Today was another great day of shedding some equipment. He got a couple IVs taken out and had his central line taken out. With that, I could hold him again!! We still had a lot of oxygen equipment and IVs to work around, but we did it. He has spent so much time just laying in a bed, that each moment we can hold him is a gift. We certainly know that when he finally gets home he is probably never going to be put down. Too many grandparents, aunts, etc. who have been waiting for their turn!!

As I was leaving the hospital this afternoon, the doctor was making his rounds with the residents. They increased his feeds a little bit (still by NG tube) and decreased his oxygen flow from 6 liters down to 3! I was certainly nervous about that decrease and wondered how in the world he would do. He had been fine all afternoon when I was there on the 6 liters, oxygen saturation numbers staying right in the perfect range. I called a couple hours later, before the day nurse left to see how he was doing and she said that he was doing well and that his oxygen was OFF! ?!?! WHAT?!?! Apparently, for some reason, his oxygen saturation number was on the high side (at 99), so they turned his oxygen flow off. He was not receiving any extra oxygen through his nasal tube, just air flow. Since he was high sat-ing near 100 they turned it off. They were a little worried it could be too much blood in his lungs or a clot forming in his new shunt, etc. but all of those turned out to be fine. So we wonder what made it jump so high all of a sudden, but here's hoping it comes down into his normal limits (his ideal oxygen saturation number is in the 80s to lower 90s) and stays there!! Certainly a shock how quickly it came down and OFF all in the same afternoon.

Please continue to pray for our little trooper! He never ceases to amaze us and the prayers are certainly working! Here's hoping his oxygen levels find a great common ground and stay there, esp. as they increase the amount of his feedings and it puts more strain on his system. We always hit a wall before surgery when it came to the increased amount of his feedings - it obviously put way too much strain on his already taxed heart/system. So it is certainly nerve racking to be approaching that cross road in this journey again. Thank you so much for your prayers in his recovery - here's hoping we are on our way to bringing him home!

Joanna

Post Op - Day 2

Good evening! Day two is under our belt. Caleb had a few tubes removed today, including the breathing tube/ventilator! It was so nice to see that big apparatus gone when I went to see him today, although his breathing sounded terrible. I apparently got there right after they had removed the breathing tube and he was making all kinds of raspy/wheezing sounds. He was back on the nasal oxygen too. I guess I was not expecting him to be able to go from a breathing tube to nothing, but that sure would have been nice. Needless to say, this sent us back down the road of watching the oxygen numbers on his monitor go up and down. He did end up going down for a good bit, so they did a breathing treatment and started him on a steroid to help reduce the inflammation in his throat. It is common to have a lot of irritation and inflammation after having that breathing tube in there, so they are trying to treat that issue so his oxygen flow and numbers can come back into normal ranges. Here's hoping he has a very peaceful night and his oxygen saturation numbers are never an issue! :) Hopefully his body will start to recognize what work it needs to be doing and his breathing will become easier. Please pray that his oxygen numbers are not an issue and he can easily be weaned from oxygen in the upcoming days. We are truly hoping that we can bring him home without oxygen...that was the point of having the surgery done, wasn't it?! And boy would it be a load off our minds!

Thank you so much for checking in on Caleb!
Joanna

Post Op - Day 1

Not much to report tonight. It was wonderful to see Caleb today and so thankful that surgery #1 is behind us. He is doing about the same - still on a ventilator, even though it is not doing too much work for him. Still sedated, but not completely as we did see his eyes open a couple times today. It was sure nice to see those eyes! His blood pressure is still on the low side, but hopefully once some of the swelling goes down, it will start to improve. The nurses reassure me that he is as they would expect 24-hours after surgery. His oxygen level is actually staying in the upper 80s to low 90s, so that is certainly nice to see after the ups and downs he has had with oxygen. Not sure how much of that is the ventilator working for him, but the nurse did say today that the ventilator was not providing him with any extra oxygen, just doing some breathing for him as he heals from the surgery. The incision down his chest was something that shocked me when I saw it today. We were told it would be about an inch to two inches long...HA! It runs practically all the way down to his belly button. Just another reason for his daddy to call him "Iron Man"!!

Thank you so much for your prayers. Keep them coming - Caleb is doing good and we are certainly hoping he continues down this path as they start to take away some of this supportive equipment he has been on and start to introduce food back to his system.

Joanna

Post Op - night 1

Today's nurse said Caleb had an uneventful night. I guess that is a good thing, although he is still under sedation, on the ventilator, etc. So he really is not doing much on his own yet to really test his system. She mentioned that he is very swollen today after all of yesterday's trauma and all the extra fluid they have been giving him to try and raise his blood pressure. So now they are adding a medicine to try and help him get rid of some of this extra fluid. Hopefully once the extra fluid is gone then we can start weaning from ventilator. His blood pressure is still on the low side, so they have him on extra dopamine. Whatever that is. :) All in all, the nurse said he is doing "as expected". Guess we will take that...

Going to get ready to see him and make the lovely trek...again! So I will be back later to let you know how Day 1 has gone. Thank you so much for your support and prayers!

Post Op

Good evening! First, we must thank you for your prayers today on Caleb's behalf. He did fine during surgery, although the surgeon did mention he had a bad spell before they could get started. He was quite blue according to the surgeon...ugh, not what a mom and dad want to hear. Apparently, as soon as they got the shunt in place, he was much better. We are just so thankful that this first surgery is done and are hoping that his recovery is as smooth as possible. He was having trouble keeping his blood pressure up after surgery, so they were keeping a close eye on that and giving him lots of extra fluid to try and get his pressure back up. Here's hoping it worked. There is no way to even describe how many tubes were going into our boy and how many IV bags and other medicines were hanging from the wall...too many to count! Hopefully they will be able to start taking a bunch of them away tomorrow. For tonight, they were going to keep him sedated so he would not get uncomfortable and reassess him in the morning to see which of the medicines they could start taking away...

Please pray for a very smooth night with no complications during his recovery!

Thank you SO much!

Joanna

IT'S TIME...

I received a call from the pediatric cardiologist this morning....it's time for surgery!! Apparently Caleb had a bad "spell" at some point during the night, enough that his oxygen was so low they had to bag him. The cardiologist said he was doing fine at the point he was calling, but that surgery was basically necessary at this point. He was not going to be able to come home with out it!! So, we are waiting for the call from a surgeon to tell us when surgery will be. The cardiologist said it will hopefully be this afternoon sometime. We are certainly hoping so...we are worried their schedule is full and we are going to have to wait another day or two...here's hoping we won't have to! We covet your prayers today for our precious boy!! It is going to be a long day...

Same story, different day...

...well, I guess the one major difference in Caleb's day is that he was visited by his big brother and sister today!! He slept through the entire visit, but hopefully Ryan and Sara enjoyed being able to finally see him with their own eyes. The cardiologist did another echo cardiogram on Caleb today and said there was no change with the small pulmonary artery. That was rather disappointing since we have seen great improvement in him since he started the medicine Friday evening. Although, today he was not near as awake as he was yesterday. He slept the entire time we were there today and the nurse said he had been that way all day/evening too. They basically decided to "postpone" Caleb's surgery that was scheduled for tomorrow morning. In other words, they are not saying that he will not need it, they just did not feel it needed to be done tomorrow. So we now basically wait each day to see if he does need it or whether he can wean off the oxygen to come home. They weaned his oxygen amount from 3 liters to 2 liters while we were there, but he was not having as good a saturation levels on the 2 liters as he was the 3...so they are trying to decide whether to turn him back up to 3 liters with little oxygen flowing through it or whether to leave him at 2 liters on a high amount of oxygen flowing through. He was "desat"ing a lot while we were there once they turned it down to 2 liters, so that was frustrating. He was such a lively, different baby when I was there yesterday. Today seemed like we were right back to tired, sleeping Caleb with oxygen levels all over the place. UGH!! The delay in surgery would be nice if we knew the medicine was going to truly help him get home...not just delay the inevitable. Today just felt like we are going to spend more days going downhill for the doctors to then decide he does need the surgery. Just wish something was clear cut about all this, so we can all be home. The long trip to and from the hospital each day is starting to really wear on all of us...esp. this momma!!!

Here's hoping tomorrow is a GOOD day?! Or at least a day where some sort of plan is created.
Just trying to hold on for the day he is well enough to come home because today was one of those days where it feels like it is never going to happen. Caleb is two weeks old tomorrow. :) Crazy how the first two have flown by already!

A picture is worth a thousand words...

...and what a difference a day makes! We were told last night when we called in to the nurse for our last update (before we head to bed) on Caleb that the neonatologist and heart surgeon were going to meet between 10 and 10:30 this morning. I figured one of us should obviously be there as they were going to discuss Caleb's surgery/care. So this morning I got up and headed out of here early to get there in time to meet with them. I called Caleb's nurse on the way to let her know I was coming and she just had to tell me that Caleb was a completely different baby today then he has been the last couple days. Sure enough, when I got there, his oxygen saturation numbers were much better then they have been for the last week. The nurse mentioned that he had been awake for most of the morning, so she was able to give him a bath, etc. He has not been that awake for days. He was truly getting to the point where he was completely lethargic and not waking for much of anything. Apparently, the medication that the cardiologist wanted to try for 24 hours, just to see if it might help him make it to surgery has done a world of good for him. I was so thrilled to see him so much more awake and lively today. With this, his oxygen need has come down from 5 liters and they were able to start feeding him through his nasal tube again today. He was taken off of all feedings a couple days ago as the Dr. was afraid it was putting too much stress on his already overworking system. So with this completely new baby, he was put back on small feedings through his tube. He was much happier after he was finally able to get something in his belly!! He was getting irritable up to that point and sucking the life out of his pacifier - which certainly told me and the nurses that he was feeling SO much better.

Another change came this evening when he was moved to PICU (pediatric intensive care). We were surprised to hear this, but apparently it is a 'step down' in his care and not so intense as the NICU. It will certainly be quieter for him, that's for sure! The NICU room had lots of babies in it and there was always a bunch of alarms, etc. going off. They needed to thin out the NICU and so he got the boot. I guess that is a good sign! :) With this, his big brother and sister are allowed to now visit!! We can't wait to take them in to see him!!

The big test will come in the morning when the cardiologist will do another echo cardiogram of his heart and see how things are looking. If things are much improved with the small pulmonary artery, then he may not need surgery at this point. The medication he is on is some kind of "smooth muscle relaxer" and is hopefully relaxing that tight pulmonary muscle. We know he will need surgery someday, but if the medication has helped him this much already, here's hoping he will not need to endure surgery quite yet. He can come home on this medicine and get a little bigger before they would have to do surgery. We have been down this road before and are certainly hoping for the best, but know that when food was added to his system the last time, his system had a very hard time managing it all. So here's hoping the medicine can help him enough so that feedings, etc. are not going to be a problem again.

Here's hoping we are on the right path!! We would certainly LOVE to avoid surgery right now!

Thank you SO much for your prayers! What a great day he has had today, thank you so much!!

Joanna

Awaiting surgery...

Good evening! First, we have to thank you ALL for your prayers, words of encouragement, meals, gifts, offers to help with the kids...you name it! I am not sure I will ever get to all the thank you notes I need to write, but maybe one day I will catch up on those. So thank you!! We would not be getting through all this without all the help of family and friends, esp. all the babysitting hours that have been needed for Ryan and Sara! I can't wait to be MOM to all three of my beautiful children at the same time and in the same place! :)

We have basically come to the point with Caleb where he needs surgery as nothing else is helping him. He is on a major amount of oxygen, but know that it is not what he needs. It is just flowing like crazy in his nasal tubes just to try and keep him as full of oxygen as they can get him, even though he still has "spells" where his oxygen numbers dip real low. That is why the oxygen is just not making that much of a difference anymore. Also, today, the neonatologist decided that he needs to stop all feedings. They stopped his bottle feedings a couple days ago due to the major amount of oxygen that he is on. He just cannot drink from a bottle and have that much oxygen flowing in his nose at the same time. He has been receiving 60 mls. through his nasal feeding tube, but as of this afternoon, they have suspended that feeding as well. Dr. feels it may be causing added stress to his system to be digesting, etc. so he decided to take that out as well. Caleb is now on just an IV. I just hope he does not become really irritable with not receiving any kind of food now.

My precious boy is becoming more and more frail right before my eyes, each day that I go see him. I pray that his surgery will come in just the right timing, but of course, I really wish it would be sooner, rather then later. We know there are other babies/children that need to have surgery before Caleb, but boy, we would sure love to see that spunk come back into this eyes and pink color to return to his body...

Hang in there, our precious one!

How much can one possibly learn...

It is amazing how one great NICU nurse can make all the difference in our lives right now! I told John that some seem like they could sit and talk to you all day about our son's condition and issues. Others...well, they make you feel like you are taking up way too much of their time when you ask a question or two. Thankfully, today's nurse is amazing and after the last couple of days, it is a welcome change. Caleb seems to be doing better today when it comes to oxygen need. He was down to 3 liters when we went to visit him today, set in the 30s. Hopefully he can get down to 2 liters again soon, as it is then that the bottle feedings will be able to resume. The cardiologist actually told this nurse that it does not do Caleb much good to get such high amounts of oxygen. One of his heart conditions is such that it is not a matter of oxygen vs. the amount of blood flow going between his heart and lungs. That is the "tetralogy of fallot" piece where his pulmonary (lung) artery is smaller then it should be so the amount of blood flow between heart and lungs is limited. So he has these "tet spells" where his stats drop like crazy and he needs something other then major amounts of oxygen. Yes, the oxygen is important, but the best thing to pull him out of one of these tet spells is various things to increase his blood flow. Nurse had a couple things she could try if he had any of these serious spells, but thankfully so far, he has not had any today.

**Just heard from cardiologist who was waiting to meet with cardiac surgeon today...they have both agreed that Caleb needs to go ahead and have the shunt placed in his pulmonary artery to provide better blood flow. He will probably have this surgery done next Tues. or Wed. Ugh...the wait is not going to be fun. It would have been SO much nicer to get it over with in the next couple days. :( But with surgeons...Fridays and Mondays are quite busy...so we wait!

I do not even know where to find the words for a title tonight. Can't even think of one for this post. Another down day for Caleb and one where the cardiologist is now talking surgery. The cardiologist I saw today met with his colleagues this evening to decide on the best course of action for Caleb. Yes, I know I posted a couple days ago that they did not feel Caleb's increased oxygen need was heart related, but now they are thinking differently. It is not completely heart related, but one of those where his small pulmonary artery is not helping the situation either. They think it is a combination of his Down Syndrome WITH the heart condition, etc. which is causing him a serious increase in oxygen need the last 24 hours. It would certainly be nice if it was a clear cut answer as to what is causing this problem! His oxygen need today was up to 4 liters pumping through his nasal tube and when I left him at 2 pm, he was at a 100% of that - which means he is approaching the 5 liter mark. When I called the nurse this evening she said he was down to 65% on the 4 liters and that he was resting comfortably, so she is hoping he will stay that way. He is not taking anything by mouth now with this much need for oxygen so he is just being fed by his feeding tube now. Hopefully she will not need to do too many labs on him tonight and he will just sleep. He had ALOT done this morning in the way of testing just about everything to see what might be causing such an increase in oxygen need...so they are just letting him sleep ever since. We will get an answer from the cardiologist tomorrow as to the plan that was decided on...more then likely surgery to put in the shunt he needs to open his pulmonary artery. Hopefully it will greatly improve his oxygen numbers so he can come home sooner.

What an emotional day...can't imagine what tomorrow will bring...

Please get me off this roller coaster!!

Today was another down day in our roller coaster ride with Caleb. Just when we don't feel that his oxygen issue could get any worse...it does! Apparently this afternoon sometime, Caleb had a bad "spell" and his oxygen level got down in the 20s. They had to bump him from 1liter of oxygen flowing in his nasal tube to 3 liters! Obviously a big jump. The cardiologist still feels this is a respiratory issue and not a part of his heart condition. They feel that between his floppy airway and small nose, there are times that he is just not getting enough oxygen in, whether it is when he is irritated about something or during a deep sleep. Scary to say the least. When we feel like we are one step forward to bringing him home, we end up taking several steps backwards. The trip to and from the hospital is already making this momma very weary, esp. as I have to leave Ryan and Sara at home and never know what their days are like anymore. Then when I have to leave Caleb I feel like he sits there in his bed all alone the other 23 hours out of the day. A no win situation!

We would certainly appreciate your prayers that Caleb would grow out of his respiratory issue quickly so that he would grow more and more stable each day.

One week later...an update!

Finally spoke with Caleb's nurse, right before she left for the day and found out that the cardiologist had been by. I am sure they are very busy on Monday's, but am thankful that he finally made it to Caleb before today's nurse went home. Apparently, the cardiologist feels that Caleb's flucuating oxygen levels are a part of his Down Syndrome, not his heart defect. He said that if the oxygen issue was a part of his heart condition, then he would not respond to the increase in the oxygen. In other words, if it was the heart causing the oxygen problem, then an increase in oxygen would not make a difference. The heart would still be causing low oxygen, whether he got an increase or not. So, the cardiologists said it is Caleb "hypoventilating". Not hyperventilating, but hypo-. He is taking very small, shallow breaths. This certainly occurs most when he is sound asleep. This means when we bring him home, he will probably come with an oxygen tank as well as an oxygen monitor. Certainly nerve-racking, but helps to know that it is part of his DS, not his heart condition.

Nurse also said that his oxygen need was down to 40 vs. the 75 that it was earlier in the afternoon when I was there. I guess he finally got a good enough nap, that he didn't need to hypoventilate anymore. :)

One week later...

We can hardly believe it has been a week since Caleb was born! He has made great strides in the last week, but today has been very challenging for this momma and Caleb! Caleb's oxygen need has been sitting around 35 the last couple days, but for some reason, today it has gradually gone up and up and up. When I left him earlier this afternoon he was up to 75!! He has not been that high since he was only 24-48 hours old. They have called in the cardiologist who ordered an X-ray to make sure something wasn't brewing in his chest. Nurse told me that looked pretty clear, so not sure if we are looking at a cardiac problem now or whether his body is not handling the increased feedings very well or what is going on. Something is certainly 'stressing' his system today causing him to need a lot more oxygen. :( Will keep you posted if I hear from the cardiologist or nurse this evening about what might be going on...

Day 6 - speechless Saturday

Having a newborn in the Neonatal Intensive Care Unit causes a parent to certainly learn ALOT, each and every day. Today, Caleb was changed to nasal oxygen vs. the oxygen hood! It is SO nice to be able to see his precious face out from under that thing. He was also taken off the warming bed. So when we got there today he was bundled all up in blankets. That was certainly different too. Thankfully he is not having any problems maintaining his body temperature. With all this, we got to HOLD HIM today! :) He still has the central line in his belly, but that will hopefully come out tomorrow if he manages to continue to handle his bottle feedings well. Here are a few pics from today...that truly leave us speechless. They speak for themselves. :)

Day 5...

Hello again! Today has been much like the last couple days...sleeping, eating when they will give him a bottle and more sleeping. His oxygen need today has remained in the upper 20s and his personal oxygen saturation has been in the low- to mid-80s, pretty much the same as he has been the last 24 hours. They are hoping to try nasal oxygen tomorrow and see how he does. It will be SO nice to see him without the big hood of oxygen covering his head!! Here's hoping it works well enough for him at this point. The doctor is also hoping that by Sunday, he will be receiving enough liquids by mouth and feeding tube that they can take out his "central line" which is all the extra IV fluids/lipids, etc. going in to his belly button. We are certainly seeing progress and are so thankful to each and every one of you for your support and prayers!! We never imagined Caleb would be doing this well a few days after birth and are so thankful he has not needed surgery thus far and/or the medicines the cardiologist figured he would need after birth to keep the heart valves open. Here's hoping tomorrow we have a great picture of him with eyes open and NO space helmet! :)