This weekend

So this weekend the boys and I are without Stephen. It is so sad that our circumstance have to keep us apart during times when we should be together. Stephen's Grandmother Harris passed away this past week. :-( I have added a pic. from our last visit with her. The one time she was able to meet Braden. Makes me happy and sad. I wish she could have met Grayson too.




I have been trying to get a good pic of the boys together. Braden's not a big fan. As you can see in this picture he was trying to get away.






The boys and I are having a decent time. Braden is starting to take steps without assistance or holding on to things. We had rearranged our furniture and it has really made a difference. With more room in the den Braden is able to take two to three steps between pieces of furniture. He is actually starting to want to stand and walk verses crawling. I never realized how tough it would be to carry a toddler and a baby around the house. It isn't easy. So I am glad Braden is taking steps.

Braden will finish his liquid meds tomorrow and I am so glad. With the every 12 hour schedule and the breathing treatments it was really cutting into my sleep. Now we can get up as late as 7 and still be dressed, fed and ready for his early morning therapies. Braden's inhaled meds will end August 12th. I am hoping that we will get a date sometime next week for the biopsy and dental procedure.

Repost of Grayson pics

Ok I am reposting these because they were so small the first time. I don't know what happened but when Paula sent them to my Yahoo!! they got messed up. I also added one that Stephen took with his phone.

Weekend Pics

New Grayson pics and Braden Update

Today I got a call from Braden's ENT Nurse P. Kimberly. She has been awesome in coordinating everything for us. Anyway, she told us that we now have a plan in place for Braden. Braden is on two more meds to try and wipe out this yuck in his lungs. Both of which will be given for 4 weeks. So middle-end of August Braden's pulmonary Dr. Fazili will do a biopsy to make sure the Serratia Marcescens is gone. In addition to the biopsy Braden will also get his dental work done. Please pray the biopsy comes back free of the YUCK as I call it. So that the rest of the plan will fall into place. Which is the trach reversal surgery which we hope to have done before winter. Otherwise we will have to wait till Spring. Which won't be the end of the world but it sure would be nice to get this done and over with...

First Dentist appt..

This morning we had Braden's first Dental appt.. As if he hasn't been thru enough in the past few days. :-) He actually handled it pretty well as you can see in the photos. He got his teeth cleaned and an exam. He really enjoyed the TV on the ceiling and Mommy letting him have her phone. Due to his premature birth and all the meds he's been on he needs a major overhaul on his teeth. It's really not that surprising. I kinda expected that... He will probably have a mouth full of caps and they will have to do the procedure at Vandy since he will have to go under anethesia. :-( The caps will prevent breakage, infection and sensitive teeth. Which I believe his teeth are already sensitive because he is showing some signs of discomfort when chewing solids. We have asked his ENT if the procedure can be done next time Braden has a scope. Braden is feeling much better today. He actually ate twice by mouth and didn't have any choking or coughing. I bought Nutella today to add to his vanilla yogurt. That stuff is YUMMY and full of calories. I also bought him some Stonefield farms Chocolate downunder yogurt it has 180 calories. Ask me how hard it is for Mommy not to get into those ... That's the only problem with trying to diet and having to buy high calorie foods for your kid. Temptation temptation... lol

Trip to the ER

So last nite wasn't fun. Braden started having massive amounts of drainage on Sat., throwing up and just not feeling good. Sat. nite was non-stop and we got concerned because this all happened shortly after his scope on Friday. We contacted his ENT's nurse and she said we should take Braden to the ER. Just as a precaution because he could have aspiration pneumonia. Fortunately, he does not have pneumonia just a virus. It was a long nite since we didn't leave for the ER till 8 pm or so and didn't get back home till 1:30 am. I couldn't believe the kids slept till almost 8:30 am so despite Graysons 2 am and 5 am feeds I am feeling decent this morning. Several things came out of going to the ER. One the reassurance that Braden did not aspirate during his procedure. Two we got a new prescription for his breathing treatments that won't cause his heart rate to go thru the roof. Three we found out early that Braden's trach cultures grew out that same nasty bacteria he had last month. So now he is on two antibiotics for 14 days to knock it out. We see pulmonary again in two weeks. Then after we get this bacterial matter resolved we can get with the ENT on a surgery date.

ENT and Pulmonary visit

So today went pretty good. If y'all remember from our earlier post back in May Braden had an infection in his lungs. He was on antibiotics for 14 days and we have seen a good bit of improvement. Just to be sure the Dr.'s did a throat culture today to see if the infection is indeed gone. We should get the test results end of next week and then if all is good we will schedule Braden's trach reversal surgery. But before everyone jumps up and down this isn't going to be easy. It's a process just like everything else we have been thru with Braden. Much like the NICU and Braden's hips.

The Dr.'s would like and are going to try and do one surgery instead of two. The hope is this one surgery will be successful enough for the trach to be removed at that time. The area Braden needs surgery for is in front of and possibly in back of the vocal cords. Much of what we were told today is about what they would like to do and what they may have to do. The details of the actual surgery will be determined once in surgery. Reconstructive surgery often produces problems with scar tissue and potential for additional surgeries to correct. It also comes with the possibility of having to put the trach back in if the vocal cords do not work properly. Then obviously we would repeat this whole process again. The vocal cords affect how we speak, breathe and swallow – they close to let us swallow, they narrow to let us speak and open to let us breathe. In Braden's case with the information gathered during his scoping today his swallowing may become an issue. He will most likely aspirate on thin liquids which could cause problems by giving Braden aspiration pneumonia. As for speaking and breathing not sure what may happen we just hope for the best.

Another set back for this surgery is a long hospital stay. Which will cause Braden set backs once again in his development. So guess he won't be walking any time soon. If he does he will have to start over after this... as well as eating issues could get worse. So as always we take the stand that it is what it is and we will deal with whatever IT IS. We are hoping for the best and we know the Dr.'s always give every detail from the best to the worst.

On a happy note Braden did awesome during his throat scope today. We took his Veggietale's video which helped a whole lot and he did exactly what we needed. He is such a trooper and we are so glad he did so well. Grayson was also good. He slept almost the whole time.

We are so blessed to have such a great team of Dr.'s and nurses helping us and taking care of Braden.

What to feed a preemie

Well I battle on a daily basis to find new ways to get calories into Braden and not add oil to his food. With the trach and having been on the vent Braden just won't eat solids without some creative help. So here are the latest ways to feed this preemie now toddler child. I bought Gerber graduate arrow cookies originally for Braden to lick on and maybe bite a little. Hoping that someday he will actually try to eat one. Then discovered that if I put them in something like applesauce they dissolve into practically nothing. So 20 calories a cookie is a good way to boost calories. I just measure out 50 calories worth of applesauce and add a few cookies for a 90 calorie snack. I also bought some regular cream cheese. I add a tablespoon of cream cheese to one stage one chicken and gravy and a 4 oz sweet potato for a 225 to 270 calorie meal. It's 270 if you add two tablespoons. He will usually eat that with no problem. Then today I am opening one of Braden's yogurts thinking it's his high calorie strawberries and cream to find no fruit. I thought they forgot it so I added a tablespoon of simply fruit jelly. Then I thought if those arrow cookies dissolve easily then surely these gerber fruit bars would too. So I added one of those... well the yogurt, jelly and fruit bar added up to 280 calories. So I am thrilled. We also tried peanut butter and stage one bananas recently and Braden enjoys that too. Now the jelly and fruit bar don't dissolve completely however it seems Braden will eat them as long as the pcs are really small. Braden also loves yogurt. We have found that the Chobani Greek yogurt has more calories than regular yogurt and has other benefits too. If you feed it to your child daily you won't ever use Miralax again.:-) Also the soy yogurts tend to be higher in calories as well. Although this may be boring info. for the rest of our readers I'm sure the other preemie mom's who read this will find the info. helpful.

Swallow study

Braden's swallow study is scheduled for this Friday. It's with nervous anticipation that we find out about a date for Braden's trach reversal. If this study goes well, which I can't imagine it won't, then we will get a surgery date. Not sure if it'll be same day or not. Braden has passed all his swallow studies in the past. Not to say stranger things haven't happened where we could be surprised and he not pass. Just hoping he will... since RSV season is around the corner and when he's 3 he will be passed on to the school system. We want him to be free of the trach for his safety being around other kids and illness.

Braden loves being around people. I really hate holding him back but at the same time want the timing to be right. If there is such a time. Floy and John actually got a house around the corner from ours. Now Braden will have a whole other place to explore. They won't be there all the time. Just visit like now but it'll be so nice for Braden to see different walls than the ones of this house. Last summer we couldn't go for walks in the stroller because of Braden's cast. This year we can't go due to the horrible HEAT. Maybe on one of these occassionally cooler days we can go back to the Zoo. I think he will enjoy it more now that he is older.

Braden is now sleeping in a toddler bed. He transitioned really well. I was kind of surprised he wasn't a little scared waking up in a different room and bed, but we planned it for a while. We talked about the new room and spent time in there prior to having him sleep in the new room. Now if we can just get it decorated.

Grayson is doing well. He is now eating more during the day and finally sleeping a little longer during the nite. I don't know if it's helping me or not since this change happened in just the past few days. Grayson is trying to crawl and stretches his legs to stand. He holds his head up fairly well and is so alert. I can't believe he is only 6 weeks old. Last pediatrician visit he did fairly well with his shot. He weighed in at 9 lbs 2 ozs and 21 inches long. Get this he is way low on the growth chart. The pediatrician said not to worry. I was thinking worry why would I. lol I have told her in the past Stephen and I are not tall people and that we were both very skinny as kids. So I won't be surprised if both our kids, preemie or not, are little. As long as they eat good I'm not worried.

Hope everyone enjoys the new pics.