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! :)

On the 4th day since my birth day...

I am truly sleepy! Not much change today. Thankfully, last night his oxygen level needs did not continue to rise as I was worried they would. He was certainly far from the 20% need where he was earlier in the afternoon, but I am thankful they did not creep up and up all night. I think he got back up to 45 or so, but today when we got there to visit he was back down to around 30% going in his hood. Although, his blood oxygen level was only in the upper 70s to low 80s. Guess that is okay. Just not as great as the day before. This evening when I called to check on him, the nurse said he was staying at 25 for most of the afternoon, she could not move it up or down much and that with 25% oxygen in his hood, he was maintaining a blood oxygen level in the 80s, so that was better then during the night. Hopefully he will remain that 'stable' tonight as it seems he tends to need more at night for some reason. The last couple nights he has needed a little more oxygen then during the day. So hopefully tonight he will remain at 25. The next goal will be to remove the oxygen hood and just need the nasal oxygen...but he has to be stable with an oxygen amount to just go with the nasal oxygen probes. Neonatologist quickly stopped by his bed this afternoon when I was there and just mentioned that he was having a little trouble with the bottle feedings, but hopefully with some practice he would get better at it. He sucks so hard on the bottle when he is allowed to drink from it that he tends to breath really hard and has a hard time with the gulping, but again, hopefully with some practice he will master the bottle process.

90% of the time when we go to visit him, he is asleep. He tends to only wake up if you start doing something like trying to feed him or change his diaper, etc. Needless to say, he does not like to be woken up. I am sure he will be good and awake by the time he gets to come home! :) So enjoy today's picture with his eyes open!!

Thank you so much for sharing this journey with us! We could not do it without all the prayers and support.

John & Joanna

Day 3

Wow - what a day! I am exhausted, completely - so this will be short. A very bitter-sweet day to say the least. I joined Caleb in the NICU this morning where his oxygen help was still about 45, which is what it was the night before. So at least it was stable. Over the course of the morning, the nurse was able to turn it down little bits at a time and Caleb was able to keep his own oxygen level within the range they have set for him. The neonatologist also changed his feeding tube orders from 2 ml every hour to 4 ml every hour. He also said to try 10cc's (less then an ounce) of a bottle twice a day. So the nurse mentioned she would like to give him a bath a little later in the morning and then we could try the bottle a couple hours after that. We can't over stress him and the bath was certainly not his favorite thing to do. Not that being soaked with water in your bed would be fun for anyone. So that was enough for that visit. Later when we went back around 4, our last trip in there before I headed home, his oxygen help/hood was only in the 20s! The nurse said that we all walk around with 21% oxygen in the air, so once he was able to handle his oxygen level with only 21% oxygen, they could try to take the helmet off. What a blessing that would be and certainly helped this momma feel better as she was having to head home without him. It was bittersweet to come home without him, yet wonderful to be with Ryan and Sara again.

Oh, he took the 10 cc bottle like a champ - which is very good for a Down Syndrome baby. A lot of DS babies do not know how to suck or have such tongue issues that they can't suck on a bottle, etc. So it was truly wonderful to see him drinking anything out of the bottle, even if it was a tiny amount.

We called this evening to get an update and were kinda discouraged to find out that his oxygen hood has had to be turned back up to 35. We were so close! The nurse mentioned that she had called in a respiratory specialist to make sure all of the leads, etc. were working properly that it wasn't an equipment failure or anything like that, but no - for some reason Caleb is needing more oxygen tonight. We are just praying that it does not continue to go up, otherwise the respiratory specialist will have to be called and who knows what they will end up doing. :( Not fun news as I try to go to sleep and spend our first night at home without him. Here's hoping it will not need to be turned up anymore over 35!

See you tomorrow...

A quick pic without so much 'gear'...

I was able to catch a quick phone pic this evening when I went to see him. He had the hiccups, so they took off the photo therapy lights and took off the eye patch, etc. in order to get him a pacifier to get rid of the hiccups. It worked like a charm, so it was quickly back to all the gear and lights...it was nice to see his eyes, if it was only for a few minutes.

Day 2

Sorry these end up being out of order and you have to start with the one below it to get started...

Day 2 has been up and down. I went down to see Caleb around 8 am as I was not about to wait for anyone to get here to go see him. :) I have been blessed to be able to spend two days/nights here, since I have really not needed the second day, but thankfully they know his situation and did not kick me out of the hospital today.

This morning, Caleb was needing almost 100% oxygen in his helmet in order to keep his O2 level up, so that was hard to see. Otherwise, he was the same in all other areas. Today, he also had to be put under the photo therapy lights for jaundice. It is amazing how many wires and tubes they can fit on such a small body. Now we add some really cool "sunglasses" to protect his eyes from the photo therapy light and we have a really 'cool' spaceman!

At lunchtime, when we checked in on him, he had been given a feeding tube through his nose where they were slowly feeding him to help him feel comfortable as they called it. He is getting very little and it is pumped very slowly in, but it is something! :) So the latest picture of him for today has even more going on then yesterday! How many wires and tubes can they possible fit on such a small body?!

My last visit with him at 8 pm was encouraging. His helmet/hood was down to only providing 45-50% oxygen VS. the 90% he was being given this morning. His O2 level was doing okay staying in the range it needs or is expected to be in. So I was hopeful that meant he was turning the corner so to speak. Of course, when I spoke with the neonatologist he just had to pop this mom's bubble and remind me that his personal O2 level is just part of the puzzle. That we have to wait out the 7-10 days where a newborns body has to regulate their pulmonary and heart rates, where his heart rate could be fine, but the amount of blood flow going in and out of the lungs could be too much or too little, etc. So, I was once again reminded that we still have a long road ahead of us and wonder IF he will need surgery in the weeks to come and WHEN we will ever be able to bring him home. The trip to and from Fairfax Hospital is a long one and once I am released tomorrow it is NOT going to be easy to see him near as much as we would like. Although, we try to hold on to the day that we WILL be able to hold him. This momma has not been able to hold her baby yet...just too many wires and things that could get knocked loose. Not to mention, he has to be under the hood for his oxygen. Oh...one day...what an amazing feeling it will be. His initial cry after he was born was certainly something his daddy and I were holding our breath to hear. Most new parents do...but in Caleb's case, it was crucial for us to hear it!! :)

Thank you so much for the prayers and support. I do not look forward to coming home tomorrow without him and the days ahead where we will be traveling back and forth to see him. We appreciate your prayers in the upcoming days and pray that his little body will continue to grow and function the way it needs to, without surgery!

See you tomorrow. :)

Joanna

A little early and completely unexpected...but hasn't that been the story for the last 8 1/2 months?!

Welcome to the world, Caleb Andrew!!

Day 1: We never imagined we would be updating this blog to let you know that Caleb has arrived...and in true Caleb fashion!! :) As with the entire journey we have been on so far, his arrival into the world was nothing short of a miracle and a complete surprise. We were all prepared to welcome him on the induction date which was set for 8/11 (39 weeks), but of course, he decided he was done waiting and he arrived 10 days earlier then that. I woke up in the night Sunday night to extreme back pain. I tried to do things around the house, rather then lay there and think about being miserable and not being able to sleep. The back pain grew more intense and I realized that it was coming every 2-3 minutes, right from the start. After trying to put it off for an hour or so, I woke John and told him I thought we needed to head to the hospital...something certainly was not right as I was experiencing such pain in my back that I was having a hard time breathing or talking through it at this point. We had NO emergency plan in place, so we called John's parents to see if they could come down to be with the kids. Okay, it was before 4am, so it was basically come and 'sleep' till the kids woke up. After a few minutes, I realized I could NOT wait the hour that it was going to take them to get to our house and so we called our next door neighbor to come in the interim. You know you have wonderful neighbors when you can call them in the wee hours of the morning. THANK YOU, Christy! :)

Off to the hospital we go...my back pain turned into all over insane pain and it was NOT letting up at all. I think I could count 20 seconds of downtime before another episode would begin again. I knew I was in trouble. We had an hour long car ride ahead of us to get to Fairfax Hospital, which is where he needed to be born because of his heart conditions. Half way to Fairfax I told John he needed to hurry up. Things were certainly progressing quickly. After surviving getting through the initial registration people on the main level of the hospital, I had to then endure the triage lady on the labor and delivery floor...I mean really...could they not tell by my body language and look on my face that I was seriously going to have this baby right there on the floor?!? A nurse came out and took us to a room and asked us more questions and finally realized that I was SERIOUS about what was going on. Thankfully, labor was not too stressful on him as he did fine. It was certainly worrying me that he was to be induced just for that reason - to keep him monitored during the labor process. When it was all said and done, the nurse said we had checked in to the hospital at 5:09 and he was born at 5:27!! No epidural, nothing! He weighed 8 lbs. 3 oz. and is 21" long.

He was whisked off to the NICU (neonatal intensive care unit) as soon as he was born to be closely monitored. He will remain there until his oxygen level can remain in the upper 80s/low 90s (we walk around with our oxygen level at 100%) without any extra oxygen help. He did not seem that bad off in the beginning and the cardiologist did a check of his heart and said that it looked as they expected. In other words, it did not look any worse then what they had seen on all my previous sonograms. So far he was holding his own with extra oxygen (which is the piece that looks like a space helmet). By the end of the day he was on a lot of oxygen in order to keep his O2 rate in the upper 80s, we were not sure what this meant. The neonatologist wanted to start him on a heart medication already, at the end of day 1, but thankfully the cardiologist stepped in and said he needs at least 24-48 hours to see how his body starts to regulate things on its own...so they stopped the medicine...