January 2011

Please forgive me for not updating this blog more often! I know there are many out there who keep checking this to see how Caleb is doing...so sorry!

I (Joanna) have been dealing with miserable post-partum issues ever since Caleb was born and it has just continued to get worse over the last couple months. I am scheduled for surgery on 2/7 and would appreciate prayers as I will be recovering from a hysterectomy at that point. I will not be able to care for Caleb anywhere near the capacity that I am used to and that is going to be SO hard for me!! My mom has been up here helping us out that last couple weeks and we are not even to surgery/recovery yet! Please pray for her strength and health as she continues to stay with us and provide some much needed extra hands...not that other grandparents and sisters have not provided lots of help as well! We could all use prayer for strength and good health the next couple weeks. I am becoming more and more useless around here and am just trying to hang on until surgery.

As for Caleb, he continues to be a bright light in our day around here! He smiles and coos at us all the time. If he is not getting enough attention, he will let you know and as soon as you come up to him and say something/give him attention, he immediately smiles and coos. Little stinker. :) He has us wrapped around his little finger already!!

Caleb is starting to roll over from tummy to back and is strengthening those legs as well. He currently weighs 13 lbs. 5 oz. and continues to do well through all of his check ups, including the cardiologist. His oxygen level remains to stay around the mid-80s, so here's hoping they will stay there for a couple more months. He will need his next heart surgery once his oxygen gets down into the 70s. We do not look forward to that day.

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