Archive | August, 2011

Enjoying Home Life

29 Aug

Well that was a quick weekend and boy oh boy did we enjoy it here are some pics!!! Changing exploding diapers, watching Cam sleep and not getting our own sleep as well as feeding feeding feeding around the clock, we loved every second of it!

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Home Sweet Home

27 Aug

Bandit has escaped the Smokeys… Camdini has successfully completed his most infamous trick… Camformers have saved the day!!!

We were discharged Friday afternoon and homeward bound with Cameron. This morning was the very first time Cam didn’t have a lead sticking on him to monitor his numbers as well as not having an iv line. It was all too exciting holding our son just as if you would expect to in a normal situation, we will have many of our own unique normalties to learn with Cam’s health. Anyway, he did great in the car seat the entire ride home just looking around not fussing at Daddy’s driving like his Momma ‘slow down’ and ‘stop hitting bumps’. Cam realized his new surroundings immediately when we got home and is still getting familiar with the much different atmosphere. We couldn’t wait to get him in one of the many baby toys spoiling him right out the gate and don’t worry much more will be posted to enjoy coming soon!!!

Cameron’s immune system is weak and susceptible to illness due to the trauma of his surgery. We plan to keep his exposure to a minimum as it was on the top of the list of Doctor’s orders sent home with us. On that note it is unfortunate but we cannot have open invitations or unexpected visitors until weeks after his second surgery because Cam’s continued health is our highest concern. We want to share Cameron more than anything as he is a beautiful soul but please be patient and understanding considering his health above all else. We will post more information on his second surgery after our Doctor appointments next week. Until then we will enjoy posting many missed first time this first time that and other funness we run into this wonderful weekend finally home with Baby Mogg.

THANKS for all of the prayers that got us here I can barely finish typing this post with the tears of joy filling my eyes…

Also, we want to graciously thank the staff at Children’s Hospital Nola including the Surgeons, Doctors, NICU, CICU and OT for their passionate care for Cameron as well as the kindness and understanding towards these most concerned and overly involved parents.

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Honey Do List

25 Aug

We have a list of highly important things to gather and do before we can be discharged which we would expect to be soon. The list of required items has dwindled down significantly but there is still so much to do. We have set up appointments with his Pediatric Cardiologist and Pediatrician as well as follow up appointments with his GI Doctor and Speech & Hearing Center. The Home Health Nurses have been assigned to us and the first visit will be the the day after we get discharged hopefully soon. They will come 5 times a week initially and possibly change to 3 times after a while depending on our comfort level. They will monitor Cam continuously until his next surgery and the visits will increase again. Cam’s sats or saturation levels are expected to decline as he gets closer to the next surgery and they will chart his numbers same as we will for the next few months. He will become more and more blue as the next surgery gets closer but this is expected and the home healthcare as well as his cardiologist will be monitoring him along the way.

We have received a do and don’t list from Deb which is extremely helpful for the critical details you should have in emergency situations along with things you should know and understand about his condition and level of care. We also had a few meetings to review these items verbally to weed out any questions. We had to order Cam’s special formula and find a Pharmacy handling compound medications in Covington. Also, we are required to watch a CPR video and practice on a mini baby blow up doll before we can leave. We have received a lot of help and suggestions on getting most of these things handled and we are grateful for the support and assistance.

The echo on Cam’s heart was done and they removed his RA Line this morning!!! Cam is finally free of all the invasive lines. We cannot express how ecstatic we are not only for us as a family but for Cam because ever since birth he has had a line in his little body pumping important fluids into his heart. It’s really going to be emotional to get to hold him without being constricted to the bedside or watching out for lines and wires attached to him. Cam maybe full of battle scars and been through a great ordeal but his personality as a calm and absolutely good baby has not left him. Cameron always has big bright eyes and a smile on his face even after all he has been endured.

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Home Trial

24 Aug

Monday afternoon we packed our things and moved on to the 6th floor, and in this hospital that means your on your way out the door. Cam was literally walked upstairs in the arms of his Daddy which to me was bizarre but I guess the CICU beds are too big and awkward to travel with around the hospital. Normally when you are sent to the 6th floor at Children’s Nola it means you are going to a home trial, they never tell you for how long. A home trial is just like it sounds you act as if you are home taking care of the baby, and you are required to give him all of his meds, feeds etc. The nurse checks all of your meds before giving them to ensure proper dosage and they monitor his vitals from the nurses station. We no longer have the luxury or torture of watching the monitors for his numbers instead we have to know him and what he looks, acts and feels like on his good and bad days. Fortunately, we paid attention in the CICU and were able to get accustom to his schedule before coming here. Sleep is no longer on our schedule just like normal parents but he has critical meds to get and a minimum of fluids/feeds to take in daily for his heart and body to function.

I am sort of comfortable with the meds because I can give them before meals but he may spit them out due to the horrible taste like the aspirin. The aspirin is THE MOST CRITICAL med Cam requires daily for his heart at a dose of a 0.25 tablet every 12 hours. There is no redose if he spits it out so you really want to make sure he gets it all the first try. The meds are all in syringes and in a liquid form even the aspirin is chopped up and dissolved in water. The aspirin has the worst flavor and he actually projectile spit it in my face when using the syringe so we will try to put it in a empty nipple next time to get it past his taste buds.

The biggest stress to me now is this minimum fluid or feed requirement because if he doesn’t want for the bottle then you can’t reach the goal. They changed his daily requirement to the 520ml or 65ml over the 8 feeds every 3 hours. It’s terrifying for me to think about how much he needs to take each sitting and when he doesn’t how much we will have to catch up on next turn. Cam normally doesn’t finish a full 65ml for the scheduled sittings unless Daddy does it but he has been taking extra feeds randomly in the middle of the night with Mommy. I had literally just finished adding up today’s total to see where we stand now. Please keep us in your prayers as this run will determine when we can go home.

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Now you see it… Now you DON’T

22 Aug

I apologize for no story telling I’m sure Nick will give me something to work with later; but for now here is an update on our little man I just couldn’t hold back these pictures!!!

Cameron has been progressing on his feeds and reached an acceptable consistency to where they have taken the NG tube out his nose. Cam no longer gets his feeds or medicine pushed into his stomach, he now has to take everything by mouth. Cam is currently on a few meds by mouth: aspirin for his heart, captopril for blood pressure, zantac for reflux, and gabapentin for stomach pain. Cam has done so well this weekend with his feeds, we as parents as well as the amazing CICU Nursing and OT staff are most proud of Cameron. There are reports we are going to the home trial soon which means the road home is in our sights!!!

They will continue to monitor his feeds until he shows that he is able to reach the minimum requirement for his daily intake of fluids. The required minimum is 450ml from 7am-pm he has scheduled feeds every 3 hours so 9, 12, 3 and 6 at a half hour for each sitting. Nick and I have been present for all his feeds, they say Cam senses who is feeding him and will eat better when he feels most comfortable. We hope he takes at least 58ml each sitting to make the full amount for the day. He just needs to reach the daily total any way he can over one feeding under another feeding is ok, and he is on his own schedule even though we will attempt to have the one set above. Cam sometimes wants to eat early which is ok but it may have his next feed fall further from the schedule and we really don’t want him snacking burning more energy. We try to let him sleep right up to the next feed when they take his vitals and assess him, he’s usually hungry again which is wonderful . Please continue those prayers and thank you for the hundreds already in action!!!

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And The Winner Is…

20 Aug

Drum roll… And the Nippling Champion is (tatter tatter tatter tat) Daddy Mogg!!!

The very patient OT staff has tried several combinations and techniques on Cam to get him trained to take a bottle, which he still ended up with a slow flow nipple and the enfaport formula. However, he should eventually get to a regular flow nipple once his coordination is better. Cam started getting the gabapentin and seems less fussy after the full feed is done so it would seem to have worked. Now they say he has to get the experience with each feed to build up his endurance. The main issue is getting him to stay awake for the full feed because he was taking enough to stop the hunger and going to sleep. He maybe getting too comfortable while in our arms or he just doesn’t have the endurance to take the full feed. Again, he must take the full feed so his heart can function properly in his situation and he needs it to grow.

Today at the 6:00pm feed Cameron took an entire bottle at the full 65ml it was incredible!!! It was not the easiest or most scheduled feed because Cam was fussing for his bottle for an hour before wearing himself out, unconscious when it was time to start nippling. However, after he pooped a gigantic blowout diaper not 10 minutes after making room for more, he took right to it possibly could have taken more than the 65ml! Mommy’s little piggy   Daddy was of course gloating about the 65ml feed he got Cam to take. I have accepted defeat and have never been happier to do so. Cameron will need to start taking the full 65ml ever 3 hours before considering the trip home. The power of prayer has reached Cameron please continue them for him, we certainly appreciate the extra help.

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Camzilla Feeding Frenzy

17 Aug

So… Nick saw my boring ole post yesterday and came up with the idea Camzilla enjoy!!!

Camzilla is terrorizing a small Cardiac Unit in the deepest part of town in New Orleans, Louisiana known as the CICU.  Camzilla has been spotted gulping down formula after formula and charging through Recovery Road ( Reeeeaaa Reeeaaa). Past news coverage has him tearing down buildings such as the Norwood Tower  and Ventilator Villa . He was also recorded ripping out the IV power lines as he stomps through Primacor Park  and past Versed Central . He is currently rampaging on the Baby Bottling Company  breathing out extreme flames of atomic proportion and blowing away every nurse with his gorgeous laser beam eyes . The Occupational Therapists in the CICU are working frantically to find the appropriate formula and means to dispense it to tame the beast. Reports state they have tried several combinations of attacks but they are still searching… slow flow, regular flow or fast flow missiles containing enfaport, enfamil or rice mix laced with gabapentin. Lookout Covington reports are he’s heading your way next, prayers will be needed so please keep them up !

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