Sunday, July 26, 2009

who's gaining weight?

I am finding some time today to catch up on the blog (much more important than cleaning the house) and some other things. I have added some photos to all the back blogs in case anyone wants to peek. I was thinking that some pictures are so hard to see that they shouldn't be on but I just realized myself that when you click on them they enlarge.

Jerry is doing pretty well. No pain or discomfort and slowly picking up his eating. His water obsession has decreased since the change in his meds. I will have to way him here at home to get a rough idea of his weight gain (hopefully!).

So, speaking of weight gain, I have buying all sorts of fattening, high calorie food for Jerry. The problem is...he doesn't like ANY of it! The most fattening ice cream at Meijer - nope, Portillo's Chocolate Cake - nope, french toast made with heavy cream - not a bite. Someone has to eat this stuff that we spend money on! By the way, Laura Fu's version of the Portillo's Chocolate Cake is much better! JJ did eat some pizza that I made today. A few pieces of that with several mandarin orange slices.

These pictures are Jerry's first swimming a few weeks ago and a visit from our Cleveland friend Carla. That pool water was freezing right from the hose and I thought JJ would just put his feet in for a few seconds but he plopped down and absolutely loved his outside "bath" as he called it.

Friday, July 24, 2009

A great day!

JJ had a great day! He was pretty happy "eating" for all of his meals. It is progress for him even if he is chewing and spitting out the food and not crying about the prospect of eating. Total today he ate 4 Ritz crackers (maybe 3 after you add up the crumbs he left), 6 or so noodles, couple teaspoons of butter rice, couple bites of yogurt, and pretzels of course. He ate some chicken, hot dog, and peas but mostly spit that out. The really good thing is that he is at 26 1/2 ounces of formula for the day (now at 10 pm)....that is big progress. Maybe he won't wake us up to eat tonight!

He is getting back to a normal schedule and is climbing all over like a crazy hair baby. He is really tired of me telling him not to pull up and not letting him walk around more week of that. He is very silly and funny and his playfulness is contagious. He's picking up the pace with his crawling to keep up with brother and a whole new world will open up in a week when we let him go with the walking.

I had a short but much needed nap today...thanks Molly Madden! The exhaustion has just started catching up with me I think. John is working tomorrow since he took off during the week for the appointment. Hopefully, some respite time on Sunday to catch up on things.

Wednesday, July 22, 2009

Mostly good news!

What a day. We left at 6am for our appointment and thought we were doing so good. When Jerry started crying in the car I looked for the bottles to feed him and we had left them at home! John thought I grabbed the bag and I thought he did. I won't give you the rest of the details on how that conversation played out! Anyways, we were more than 45 minutes into our drive and had to turn around. Otherwise we had no formula and no medications. We were very late for our appointment and Jerry cried a lot of the way back to the house to get the bag we forgot. Stressful.

The appointment went pretty well. Jerry let our sweet nurse, Linda, pick him up from the stroller to "go play." He screamed for getting his blood pressure and laying down to measure length but was really pretty good for the echo and his EKG. Even when he was upset about something he got over it quick and was fairly friendly. It is good to see him leaving some of his anxiety.

OK. The important news. His heart looks a little better and is heading in the right direction. Dr. Gossett showed us film of Jerry's heart before surgery and from today. It was hardly moving before and was really huge. Now his heart is getting smaller and is actually squeezing. It is far from normal but still good news. We are decreasing two of his medications because the doctor thinks he may not need the full dose anymore and maybe he will not be as thirsty for water with these meds cut down.

The bad news Jerry lost weight according to the records. He weighs 15 1/2 pounds. They are giving us 2 more weeks to see if he starts gaining and then we will go from there. We will go to the pediatrician in 2 weeks and back to CCMH on September 4th.

Our appointment was long and exhausting. We headed for lunch and then took the boys to the Lincoln Park Zoo. It was a perfect day. We felt like a normal family and Jerry was so happy and "normal" all day! Besides the fact that he wanted to get a bath in every water habitat he saw! He even ate really well (4-5 big noodles, piece of bread, mostly that he was just happy to join us!) at a dinner. Now I am exhausted and not feeling great...just lack of sleep probably. Hopefully things will keep improving and we can relax more. Adding photos tomorrow.

Tuesday, July 21, 2009

CCMH appt. tomorrow

Tomorrow is our 2nd post op appointment. I am anxious but excited that maybe something has improved. Jerry is sleeping better and eating a little better. That really just means that he is accepting some food .... he gets a few tablespoons of rice or noodles every day for the last 3-4 days. He is drinking about 21 or 22 ounces of formula... 27 calorie. He was throwing up and eating way less on the 30 calorie made with oil. JJ is so ready to walk and is getting pretty annoyed with some of the limits we have to place on him for a few more weeks. I guess that is a really good sign!

I have so many things that I want to write about from the past week or so. After the update about tomorrow hopefully I can get to that and adding some photos.
Thanks again to everyone for your continued concern!

Thursday, July 16, 2009

more sleep..ahhh

I have so much to write and pictures to add...but just not much time. Playing catch up as things start to settle. Jerry is doing much better with sleeping. Still pretty bad with the eating but better with formula and we are on a 30 calorie/oz formula now. Thanks to everyone...every little thought and prayer for Jerry's recovery means so much to us!!

Tuesday, July 14, 2009

Maybe turning a corner...

Jerry definitely slept better last night without any codeine (we have given it to him once every night). He ate less during the night which is good since I think he drank that much more during the day instead. At one point today he drank 2 1/2 oz without stopping!!! That was huge when looking at the last 4-5 days. It still wasn't easy. He refused it at first even though I know he was hungry. He sometimes has to be in just the right position which is often laying across my lap with his feet at my belly and head at my knees. I have no idea why that is. He also ate 7 baby spoons of pastina (alfredo style for calories!). He finished with about 20 oz of formula for the day including 5 from the middle of the night. Not too bad really. We tried the pediasure a little bit into his regular formula. Then we weren't sure if it was making him drink less or if it was bothering his stomach with the milk is so hard to tell and every decision with eating is so tough. So I am reading up on adding calories different ways and I think I will just call the nutritionist at CCMH tomorrow. I found so many options of calorie boosters on line that I just don't know what would be best. At least we do know that the not eating is because of his heart. His heart was functioning a little better at one point in the hospital from the IV meds and that is probably most of why he was eating better then. Doctors expect his heart to improve over time.
Here is a link to an amazing heart story if anyone cares to us great hope for Jerry's heart improving!!

He was back to being really happy most of the day and very active. Better yet, he took a 3 hour nap without waking!! And best of all, (only a mother would probably understand) he is letting me comfort him like he used to. He will lay on me and snuggle. I cannot explain how wonderful that really is.

Pictures are from Sunday when we went to the Morton Arboretum to get away. It was hard to do because we are so behind on stuff around the house...but we needed a break. We had a great time and managed to keep JJ happy and distracted from any discomfort most of the time. Technical difficulty with the pictures. Will try tomorrow.

Monday, July 13, 2009

tough day

Jerry has been a little, or more than a little, fussy the past few days and hardly accepting any food or formula. Yesterday was a grand total of 12 oz. of formula and two bites of pastina (tiny balls of pasta). He refuses and cries at just about all food. He seems hungry because he is chewing on his hands and fussy but just can't or won't eat. Tonight I got him into his chair by giving him sips of a strawberry slushy. Then he started eating almost happily a few bites of looked like he was really going to eat and not be crying. I got interrupted for something with Isaac and walked away leaving John to finish. Jerry just started crying for me. I came back in a few minutes but he would have nothing to do with eating at this point. The whole day has really taken an emotional toll. It's not like he's a regular kid and "he'll eat when he's hungry." John said tonight that maybe the increase in his meds is making him nauseous. We also went to the pediatrician and found that he has not lost weight since Friday so that was good to know. We will have to keep checking that. His post traumatic stress was very evident at the doctor's appointment today!

Saturday, July 11, 2009

A good day...except for that eating problem!

Jerry was so happy all day and took a 3 hour nap. He has been waking with discomfort during naps too but today he only did that once in 3 hours so that was good. His night waking seems better too...a little less often and a little less severe in the screaming sense. We were sad to see Grammy and Nonno leave today...they have been so wonderful. I cleaned up my own dishes for the first time in more than 3 weeks today. It actually feels great!! It feels good to get back to doing more "normal things." I just hope this time we can hold on to it for a little longer.

JJ was eating so good in the hospital at the end. Since we got home, he has continued to eat less and less. I can't tell you how much stress it adds to the day to try to feed him. It is like a constant chore. The nurse practitioner at the appointment told me all these great fattening things to feed him but the problem is when he doesn't want to eat he really doesn't want anything. When he was eating in the hospital he ate EVERYTHING I gave him. He is also craving water like crazy. He has this word/sound he makes for water (the same word Isaac used and there is no way to spell it) and he is doing it constantly and will drink as much as I let him at one time. The doctors said that could be bad for him because if depleting his sodium (or was it potassium?) so I should give him pedialyte instead. I try not to give him too much so that he will drink his formula. Now I am actually really wondering WHY he is like this. To boost calories and because he may like it better than his formula, we may try pediasure tomorrow. Better get some sleep now while I can.

Friday, July 10, 2009

post op check up...good news

Just a quick note from the hospital. JJ's echo was the same as the last one. It is good that it is not getting worse and we are allowed to leave!! Concerns for his weight. I thought he was gaining but he actually lost. Another appointment in 1 1/2 weeks. More later w/ photos.

As you can see, Isaac eased Jerry into his check up. It was very helpful to have him around. Jerry was screaming during his echo test and Isaac sang to him and he calmed right down. He doesn't usually cry for the echos but I am sure he was afraid that he was starting over with everything he had been through.

Jerry is eating better than he used to but not as good as in the hospital. He unfortunately is back to an ounce here and an ounce there of formula. It was so nice when, at the end of the hospital stay, he would drink 5-6 ounces at a time and be done for a while. Hopefully, he will just improve as our house gets back to normal but we will be trying higher calorie formula and feeding him lots of fattening things that we all love to eat.
He is waking and crying a lot (I mean a lot....every 20 to 30 minutes for long spurts, maybe a few 1 to 2 hour spurts) during sleep...naps and at night. That could be several different things but we are mostly thinking it is stomach pain from his aspirin. At about midnight I usually can tell if it is going to be the same and I give him a does of Tylenol with codeine. Next week we can hopefully start to figure that out more if he has not improved.

Mostly, Jerry is so back to normal. It is pretty amazing...he is climbing all over (we really have to watch that) and being silly and playful. He is somewhat attached to me right now but getting better at being with his "Grammy and Nonno."

I don't think I emphasized enough how happy we are that all was ok today. We have been so anxious just knowing that time off the IV meds could have made it his heart worse and they might tell us he needs more of them. John's parents have been so great and even stayed today to make sure we would be coming home. So now all is well and good results expected at the appointment on the 22nd. Thanks to everyone for worrying and celebrating with us!

Friday, July 3, 2009

Home Sweet Home

I just started having fun and now we have to leave?
I don't think I'll be needing these anymore...and yes, I know I need a haircut.
I missed my toys...oh, that scar on my chest...I have no idea where that came from...all I remember is pretty nurses and the play room!
We were relieved to find out that Jerry's echo showed his heart to be stable. The concern is that it would continue to get worse after switching from IV meds to oral meds, but it stayed the same. We couldn't believe we were really going home!! Jerry slept through most of the over 2 hour ride home and was just about his old self when we got home. It was a little hectic with new meds and new dosages but so good to be home. It was also pretty emotional. I am just realizing more and more how fortunate we are that Jerry is here and understanding how much danger we were in before. Even though there is less worry now, I feel like I am responding to how afraid I should have been before. Kind of hard to explain. I put Jerry to bed when he was very sleepy so that he would just not climb around in his bed and would fall asleep. Of course he got very playful after I put him in and I stood just watching him. But then he waved and said "bye." So, as hard as it was, I walked out of his room keeping his door open a crack so I could check on him with out disturbing him. After all, we had spent weeks on monitors that assured us everything was fine and now we had nothing. Jerry was playful and happy most of the time, even when he was very sick, so there is no sure way to know what condition he is in until we have his next echo. We go for that next Friday and there will be a post for sure. He is eating better than ever because of his heart improving either from surgery or from the hefty meds he is now on.