Saturday, March 27, 2010

It was a Long week...But he is HOME!!!

I know these pix are a lil late but things have been pretty fast paced lately. Have not had much time to take any photos at home yet so here are some from before he left Cinci & some from his couple days home last week...I don't think he has figured out whether he likes his swing or not tho!....

Ayden was trying to figure out Lilly but she didn't want anything to do with it!

So we were in the NICU @ Dayton way longer than we had expected...He finally came home on Friday evening but at least this time he was able to give the correct goodbyes to the people who have watched him grow from an itty-bitty peanut into the big boy he is today!...Although he didn't give the proper goodbyes to his favorite night nurses we are going to make sure to come them (or they come to visit) soon!...I have pictures from his departure that I will post later if I can!....

So since Ayden has finally come home he has not slept much at all. It seems as though his reflux has intensified and he is coughing and gagging when he is laying down. They have upped his dosage of Prevacid since he has gained weight so hopefully things improve soon! He went to his new pediatrician today and he said that he doesn't seem to be grossly delayed so far in spite of all the barriers he has been faced with. It seems as though his sight issue is the biggest problem that is causing him the most delays thus far. Of course this was just a quick assessment from a Doc who has never met him before but I thought it was some good feedback!...We will be getting things set up to attend the developmental clinics and are searching for more early intervention programs as well. As for right now we are prepping for Cinci on Monday and then have lots and lots of appointments set up to get the ball rolling as an outpatient. A new stage of his journey has begun!

p.s: Ayden now weighs 9lb 12oz & we are beginning to retire his newborn clothes!

Monday, March 22, 2010

Weeks 32-33...Going home was just a tease...

So, this week began with lots and lots of good news!....Ayden FINALLY came home on Thursday afternoon (and we got to close on our house this week). He was not too enthusiastic about his car seat or all of the bright lights he saw when he got to go outside... (Sorry no pictures…A.J. decided to pack my cameras and even my phone into the trunk of the car before we left the hospital)…The first day home was filled with lots of adjusting and settling in. In addition to the change of scenery Ayden also was able to meet his Great Grandma and a couple aunts and uncles as well as his little cousin Lilly. He didn’t seem too impressed by anyone but sure was trying to figure out Lilly! I know some fun times are sure to be had with their interactions in the future! The first night with him home was pretty difficult for me to say the least. Although he is a good baby who sleeps most of the night, this was the first time for him to be off of monitors and so I was extremely nervous!...I woke up every 15 minutes to check on him and reassure myself that he was still breathing. A.J. had to work through the weekend and slept in the spare bedroom to ensure that he would get enough sleep, and so I was faced with this experience alone. Boy was I nervous! The first night was filled with discovering the ins and outs of the feeding pump and figuring out the perfect schedule and techniques for administering his meds. Overall, things still went pretty smoothly for it being the first night home.

On Friday Ayden had his first appointment with his pediatrician and he seemed to feel more at home there than he had at home with us! He was cooing and sucking on his hand as he was lying on the exam table. When they tried to weigh him he seemed to be wanting to turn around and climb off the scale though…The pediatrician asked if he could roll over even!...I assured him that he couldn’t and he told me that it shouldn’t be too much longer if he keeps doing what he is doing! The rest of the day Friday was pretty relaxed. And, with the help of my and A.J.’s moms I was able to get a little sleep between his feeds. When A.J. got home that evening I let him try to do some of Ayden’s care but nothing seemed to go smoothly. Ayden was a bit fussy and A.J. tried to come up with anything and everything to satisfy him!...Everything from changing his diaper and outfit to giving him his pacifier and venting his belly but even those things didn’t go as planned. When he tried to vent his tube A.J. used a new syringe and forgot to take the cap off of the bottom of it! Finally he asked to just give him a snack after hearing him fuss for nearly 45 minutes & then we remembered he was on a 3 hour feeding schedule now rather than a 4 hour…The funny thing about it is that Ayden was fussing nearly an hour before he was due to eat… Even after all of that he was still fed right on time!... I think he was just testing us!...

Saturday it was just me and Ayden at home all day….He slept an awful lot and when he was awake he only wanted food and cuddle time. I wasn’t complaining because it allowed time for me to take a shower and get some house chores done (which all moms have told me is a big feat when you have an infant at home)… As the day progressed he became much more irritable and took less and less of his bottles. He had been coughing and gagging for several days before he was even released from the hospital and we were told that his stomach just needed to be stretched back out…By Saturday things had not improved in that department and he was acting as though he had a stomach ache and he was having large loose stools that were soaking through his diaper. By the time A.J got home from work and we ate dinner, Ayden was inconsolable and was struggling (and retracting) with his breathing. We immediately drove to Dayton Children’s to the ER. They hooked him up to the monitors, ran some tests, did an x-ray and everything looked fine aside from his respiratory distress. They put him on some oxygen and let me hold him to calm him for a while. His respiratory rate dropped back down to a comfortable rate until I attempted to lay him back on the bed to change his diaper. It seemed as though he was only comfortable when his belly and chest was up against me. Once again, I held him to calm him and waited for them to run more tests or tell us what the plan was. When they returned they said they were just going to send us home with Pedialyte and Tylenol and to just watch him closely but when he was taken off the oxygen and we went to put him in his car seat he desated and they said we would need to stay overnight to be monitored.

He was readmitted into the NICU and remained on a half a liter of flow until today(Monday) at noon. When they would come to his bedside he would be sating good and his cannula would be either between his eyes or in his mouth and so they realized the o2 wasn’t doing much for him. Aside from the o2 the only additional regiment they were giving him that was different from home was a dose of Tylenol here and there to calm him down. Although, they did change him to 26cal formula to see if his diarrhea would clear up things still seem the same. It has now been 2 full days of being back in the NICU and literally nothing has been discovered as to the reason behind his little episode and his is back off of his oxygen. The pulmonologist came to evaluate him today and once again assured us that there was nothing he could do for him. And so, as long as he continues to do well without oxygen overnight tonight he will more than likely be going home with us tomorrow since his follow-up appointment in Cincinnati will be on the 29th. It still makes me nervous to not know what his problem was but being in the hospital is not helping him either! Hopefully his next stay at home is a little less eventful and we are finally able to enjoy every moment with our little man! Wish us luck for his coming home and his next trip to Cincinnati!

p.s: Ill add some pictures of my cutie between my next update!...Maybe this next week will bring some happy times and some more precious pictures of my handsome 'lil’ man!

Ayden's Weekly Growth Update: Length: 22in Weight: 9lb 6.5oz

Monday, March 15, 2010

Still Waiting!..Coming Home?

So, we are still unsure as to whether or not Ayden will be coming home this week but he is still doing well. He had his 2nd hearing test this week and he actually passed!... They said his hearing is within a normal range & he will not need hearing aids or anything of the sort!...It kind of upsets me thinking of the audiologist at Dayton refusing to do another test knowing how worked up he had gotten... He is still off oxygen and his feeds will be transitioned to bottle/bolus feeds during the day and continuous at night. Tomorrow he has his ml&b to get rid of more lesions and to determine how often he will need to come back for treatments. How he does during this surgery and how well he re coups afterwards is the determining factor as to whether he will come home this week or not...We are patiently waiting to find out!

Meanwhile, this week Ayden has been a lot more active than he has ever been before....He found out how much he likes his hands!...He is a binkie fanatic & when his binkie isn't around he goes a bit crazy!....

I know I'm biased but I just think its the cutest thing!


Here are some bare faced pix of my lil cutie too!

I love him sooo much!

Friday, March 12, 2010

Week 31....Improvements!

I know I was late on posting the last blog entry so this one is coming a bit earlier. The day after my last post Ayden was taken off of oxygen & has remained off since. During Ayden's last trip to the OR things went very well. He didn't even need to be intubated for the surgery itself!...Mr. Man is very happy to finally have a clean/bare face but seems to be trying to rub his nose off now. He has been transitioned to continuous feeds to help with weight issues and he has slowly began to gain some of his weight back...He is now up to 8lb 8.5oz... They try to bottle feed 4 times a day but he does not eat well for anyone but me. They said we can start trying to PO all feeds during the day tomorrow and will just use the g-tube for the amount he doesn't take. He will still be on continuous feeds at night but hopefully this will be a reasonable schedule that works for him. Finally having a sense of normality will help us all!

So, he has another bronchoscopy and airway surgery on Monday or Tuesday and if everything checks out well they say we could go home on Wednesday or Thursday!...We will have to come back every 2-3 weeks for check-ups but at least we will have a little bit of relief!...I am trying to not get my hopes up as each time they tell us he may go home there is more setbacks...But, even if we have him home for Easter we will be ecstatic!

He still hasn't had another hearing screen but they have examined his eyes. They said his eyes are unchanged and the eye doctor here at Cincinnati did not even note a cataract. He will be reexamining to see the progress of glaucoma but we are happy to know his ROP has not progressed. He was finally given his 4 month shots tonight and will get his synergist shot next week sometime. This next week is going to go so fast & I am so anxious & nervous to see how things will go!

Crossing our fingers in hopes of good reports and a homecoming in our near future!

Monday, March 8, 2010

Week 30....In Cinci & feeling feisty!

Sorry it has taken me so long to post...things have just been so hectic!...

This week has been anything but smooth sailing…The transition from Dayton to Cincinnati was rough to say the least. The most difficult part was leaving the nurses and other staff at Dayton that we have grown to love so much. Before we left I made Ayden’s primaries do a photo opp with him!...We <3 them & miss them already!




Although things are so different in Cinci, we have begun to settle in. He even already has 3 nurses who asked to sign up to be his primaries…My ‘lil’ man must just melt the ladies hearts :-D … As for the trip to Cinci, Ayden didn’t mind the ride but was rambunctious when they attempted to get him settled in and calm when he got into the NICU. Part of his attitude came from the lack of medicine he was given. Ayden had been on Fentanyl and Versed drips since his surgery on the 15th but during the transfer Cincinnati refused to use his meds from Dayton and his drips remained off for about an hour and a half. Needless to say, Ayden became a wild man and threw a fit! When they finally got him caught up on his pain and agitation he was still so mad about the tube that he had to be restrained. The second day of being at Cinci the doctors tried to change everything. They attempted to persuade us to allow them to completely stop his drips and begin oral alternatives for the same types of meds. Ayden has built a tolerance to a number of meds and introducing him to new meds just to wean differently is not something I am going to let happen. And so, we avoided another unnecessary change. Ayden has now been weaned off of all of these meds even without the weaning method they had tried to persuade us to follow.

So, when it concerns airway, on Thursday he finally got his ENT/Pulmonology Consult and got a more precise/ hi def scope done. They found that the lesions in his airway are in fact papoloma and they were able to shave of all of the lesions on the left side of his airway. They plan to go in and shave off the lesions on the right side on Wednesday afternoon. We also had the best news ever after this last procedure!...Ayden is not going to need a trach!...His tracheomalasia is mild and the doctor said that it doesnt seem to affect him!... :-D ...So...On Friday they were able to extubate…he started out on 6 liters and is now on 1/4 liter high flow at 21%. They plan to take him off oxygen completely tomorrow to see if he tolerates it. Hopefully he doesn’t need to remain intubated after his next procedure.

Meanwhile, Ayden has been having problems gaining weight again. He has actually lost quite a bit of weight. To see if they could help him grow, the doctors have rearranged his enzymes to the point where he gets it with each feed and they have now placed him on continuous feeds but are allowing him to bottle feed 4 times each day. This all happened so quickly though. This morning they were just giving him tastes of milk on his binkie and a couple drops of milk squirted in alongside it two times a day. But by 2pm they let me try to give him one hour’s worth of milk. And so, now 4 times a day they allow us to stop his feeding pump and give him a bottle. He has been sucking down the 22ccs in only 5 minutes or so! Hopefully this is a sign that he may not need the g-tube forever!

Ayden is also supposed to have hearing and eye exams this week to check up and confirm the previous testing done at Dayton. We are hoping that things are not progressing within his eyes and we are able to find out what exactly is going on with his hearing. Since the previous hearing test at Dayton didn’t go as smoothly as it was supposed to, we are anticipating different results since they are going to give him meds to calm him down. From the way he responds and interacts we do not think his hearing loss is as bad as they had told us and are hoping for confirmation of this soon!

Weekly length/weight update: 8lb 5.5oz & 20.25” long

Ayden & his Daddy!

Ayden & his Daddy!

Hopefully this next week finally brings some good news!...Wish us luck once again & please keep Ayden in your prayers!