RollersInVegas

Oh...I'm sorry about not posting Sunday and being so late with a Monday update. We simply had to rest when we had the chance on Sunday and Monday...my fabulous partner had to return to work. Isaac is still being a little too fussy with his reflux. I called the GI doctor and can't get in any earlier than next week (they did put me on a cancelation waiting list..my fingers are crossed). No new problems to report with Isaac, just trying every new thing possible to make him as comfortable and happy as we possibly can. I'll put pictures up soon!

It's just another Saturday with Isaac and the boys! (Eli and Chris have been such troopers with Isaac. They aren't jealous..they are tremendous helpers, and just angels...what can I say...I make perfect boys!) Now...on to Isaac... He had a pretty good day. Our only day-to-day problem with him is this reflux issue. He's screaming (not crying) more frequently and louder...he turns red, then purple, until he's blue. It breaks my heart. All we can do is walk with him and rub his little head until he settles down. (All of this walking...by the way...has made me lose all but ten pounds of my baby weight. Whoo Hoo!) Isaac really has a great disposition when he's not screaming his head off. It's almost midnight, and poor Joe is off to Walmart in search of something to help Isaac sleep better and help his belly. (Like a wedge or something to incline his bed higher than it already is inclined). The pictures we took today are after we fed Isaac. He gets so pooped! It's sad, but cute.

TGIF...please... This was one of the longest days of my LIFE! Isaac had a rough day with his reflux. It was hard to keep his food down and when it stayed down...he would scream. I'm not sure if it's the reflux, gas, just his temperment (which he got from his father) or some breast milk from when we ate Mexican food. So, I have no pictures for today...just scroll down and look at past pictures. Let's hope we all sleep tonight...and tomorrow goes smoother. That's all I have to say about Friday with Isaac. Good night.

OH....what a Thursday! We started the morning with an 8am appointment to get Isaac's tongue clipped. Before the procedure, I asked the pediatrician if clipping his tongue could cause his tongue to roll back and block his airway...The reason for this question because the plastic surgeon that will repair Isaac's cleft palate noted that he could have Pierre Robin (yet another syndrome...this syndrome is characteristic of a cleft palate, small lower jaw, and a tongue that rolls back and blocks the airway). Isaac has all of the symptoms, except for the blocked airway. His tongue only rolls back and he chokes when he tires from eating. When this happens, we have to lean him forward and if needed, rub his tongue forward. (Crazy..i know!) So...I forgot to mention this possible syndrome to the pediatrician...and this FREAKED him out even more than he already was...he was scared to even touch Isaac today. We talked it over, and decided that we would wait and speak with the plastic surgeon at our next appointment (which is in the middle of May). Then we discussed Isaac's reflux. It's gettng pretty bad. We have to hold him upright to feed him, and then we keep him sitting as upright as possible after feedings...and he'll burp and (hope you're not eating)but, the milk will come out of his mouth and nose. This will cause him to lose his breath...which means he turns the color of a smurf! Oh..the poor little guy. So, I now have a gastroenterlogist to add my little black book! We have an appointment scheduled for 3 weeks..but, i'm going to call again tomorrow and see if they can see us any sooner! Other than all this...we've had a great day! I was able to take an hour nap! (Felt like 12 hours!) Grandpa Dean (Joe's dad) flew in this evening...hope he's ready to entertain our crazy boys!

What a BUSY Wednesday!!! We started our morning with a 9am appointment with Early Interventions of Nevada. This was the appointment where they assessed Isaac for developmental delays that he has (which aren't many yet), but they will also be the team that we work with because he is expected to have many delays in the future. We have already been set up with appointments for feeding specialists, nutritionists, speech therapists, audiologist, and opthamologist...and once we have the heart surgery, they'll help coordinate the physical therapist and occupational therapist....whoooo! We made it out of that appointment by 11:30 to make it home for lunch to then rush to our 2pm appointment with the cardiologist. Here, Isaac had another echocardiogram. His stent looks like it is allowing blood to flow through the pulmonary artery...which is good, because they are hoping that blood flow will help open the artery more. Dr. Mayman (the cardiologist) received word back from Stanford that Isaac should have another heart cath soon...but, he wants to wait two more months (which is fine, because Isaac will have to be put under and on a ventilator). His sats (oxygen levels) were 81...which were a little lower than they have been, but he's not totally blue (only when he cries). We made it home to have dinner...Eli's favorite...breakfast for dinner!!! (French toast, bacon, pancakes...yummy!) I didn't have a chance to take any pictures today...but, check out the scanned picture. This is Isaac's heart...they drew it from the heart cath they did when he was first born. I put a picture of the normal heart beside it so that you could compare the pictures. We're hoping to make it to bed before midnight...because tomorrow we have an 8am appointment with the pediatrician to get Isaac's tongue clipped...he's tongue-tied (did I mention that before)...hopefully, it will be quick, not so painful...and then we're doctor free until next week!

It's Tuesday!!! Isaac is still feeding like a champ!! We didn't have any appointments to run to today. Joe went out and bought a freezer for me...the milk I'm saving for our little guy is filling up the freezer in the kitchen. We gave Isaac a bath....he didn't scream too terribly loud...but, he sure was cute all cleaned up! Tonight Joe got a call from Dr. Sirsey, the pediatrician. He said that Isaac's lab work came back and his potassium levels were too low and that he was dehydrated and that we should take him immediately to the emergency room. (Now, this is the man that look terrified to have us as patients!). Joe called our cardiologist and he said the results sounded skewed and they were draw more blood at our appointment tomorrow. This will probably be the story of our lives...running to the hospital unexpectedly! For all those that we haven't told...when they discharged us from the hospital, they told us that Isaac is extremely immune compromised (because of his heart and the DiGeorge). They specifically told us to only take him out of the house for his doctor appointments (no grocery stores, no shopping malls, no church, etc.)...and they said to really limit the people we have in the house. If Isaac gets even a small cold...we will be back in the hospital with him. (and if he has an infection within a month of his scheduled heart surgery, they would have to postpone it). So...we love everyone and know everyone wants to see him and pinch his fat little cheeks...but, you'll have to wait until he's bigger, healthier, and stronger. (Just admire his pictures and just know they don't do him justice)! Eli has to take a snack to preschool tomorrow (that starts with the letter "Y")...so, the pics attached are of us making sugar cookies (not from scratch), we cut them into "Y's" and then iced them with yellow icing. We have a morning appointment tomorrow with the early developmental specialists and an afternoon appointment with the cardiologists...so, be prepared for no pics tomorrow...but, i'll try! And Brooke..I got your box....the outfits were ADORABLE and Cindy...we got your box...and Eli stole the blanket you made....it was too SOFT!!!

What a busy Monday. We had an 8:30 appointment with the pediatrician. That poor man...once he looked over Isaac's hospital discharge papers, and reviewed all of his medical problems...I think he was scared to have us as patients. He had to spend close to an hour with us reviewing his file and problems that we've had with him thus far. We finally made it out of that office about 10am, and had to drive to labcorp for blood work. Because Isaac is still on lasix..they need to check his electrolyte levels, co2 levels...and I think the pediatrician was being a little cautious because he ordered a complete panel (where they check every level). Isaac weighed in today at 7lbs 12 ozs (just 2 ounces under his birth weight). We're trying to beef him up!!! I didn't get a chance to take any pictures today...but, we have no appointments tomorrow...so, i'll make sure we have many kodak moments! As far as the other boys go...Chris bumped his head into Eli's mouth this morning...and now Eli's front tooth is loose! (He's worried that he won't be handsome anymore if that tooth falls out!). I went to the grocery store today. I took my sweet time strolling down every aisle. It was like a much needed retreat (that's so sad...i know...but, that's what my life has now resorted to...retreats to Von's). We're all surviving...we only wish there were more hours in the day to complete everything on the to-do list and a few extra zzz's wouldn't hurt either!

Sorry I didn't post yesterday...but, Isaac had a tummy ache all day...and you can't let a heart baby cry...so, we spent the day holding him, rocking him, and feeding him. Today was a much better day! Isaac is still eating like a champ...we've gotten the hang of this squeeze bottle..and that takes a lot of the stress out of bringing him home. We have his first pediatrician's appointment tomorrow morning. I'll let you know what he weighs in at ( i hope we're squeezing in enough food for him!). I took some pretty cute pictures today...I'll work on getting some pictures with all three boys together...but, good luck getting Chris and Eli off the video games long enough to smile for a picture (and good luck getting Chris to brush his shaggy hair). On the subject of Christopher's hair...he's scheduled to go on a scouting trip to Catalina Island in June...and they just told him today that he'll have to cut his hair before the trip because it will be in the way when he snorkeling!!! (and we just had it trimmed)..I guess I'll just give Eli the electric razor and let him cut it! Tristen took the boys to the movies yesterday and she took Chris to church today. Tomorrow she flies out...I don't know what Eli will do now that his buddy will leave! So, everyone will have to call and talk to Eli and make sure he's ok!

It was a great FRIDAY!!! Isaac is eating like a big boy (well, still only 2-2 1/2 ounces---but, drinking it every 3 hours as he should). We didn't do anything great today..just hung out at the house. Tristen took Chris and Eli to the movies tonight...they were getting a little stir-crazy in the house today. Nothing new to report with Isaac's health....next week starts our many doctor's appointments. Monday we see the pediatrician and Wednesday we see the cardiologist. So...let's hope we have an uneventful weekend!

I didn't pull the camera out today...SORRY!!! We're running on no sleep...and just trying to keep Eli and Chris to talk with inside voices, trying to keep Katie from barking at the wind blowing outside, and constantly looking at Isaac to see if his shade of blue is more blue or less blue than the last time we looked at him. We are so EXCITED to be home with Isaac! He is still eating from his bottle like a champ..and he is quick to let us know what he likes and dislikes. He doesn't like his new cradle that we keep downstairs...but, prefers to swing side to side in his fish swing. He likes his new crib, but only because of the mobile..we took it to the hospital and he already loves listening to Bach and Mozart play him to sleep. I promise to add pictures tomorrow. Wish us all sweet dreams (well, as sweet as they can get in our 2 hour sleep blocks!).

Isaac is 3 weeks old today...and to celebrate...we were able to take him HOME!!!! There were last minute blood tests to confirm his calcium and potassium levels were in normal range...and they were. They did another ultrasound scan of his kidneys...and they are not as full...so, all is well with the kidneys! We were sent home giving him only aspirin every other day and lasix every 12 hours. We were taken very good care of by all of the doctors and nurses in the NICU...but, we did not shed a tear when we pulled out of the parking lot!!! Isaac has been an angel since we have been home. We got home around 4pm today. He's had two feedings...and slept like a champ. We are so proud of the progress that he's made...and hopeful that he's going to keep surprising us and the doctors! Tristen and Chris went to the mall tonight (prom dress shopping)...Joe and Eli did the grocery shopping....and I took a breather on my couch! Grandma Sue flies in tomorrow night. We're still feeding Isaac on the same schedule they had him on in the NICU...every three hours (12-3-6-9)...so, as much as it breaks my heart to wake a sleeping baby, we'll be up all night!!! (You normally try to get your baby to hurry and sleep through the night...but, in Isaac's case, he needs all the weight we can put on him before his surgery...so, it's all day and night feedings for him!). Thanks for all your calls...and here's hoping we have a great night!

It's Tuesday...and all is well in the NICU! Joe called me this morning...and told me that they were going to discharge Isaac on Wednesday!! WHOO HOO!!!! Isaac had a great day...taking all his bottles like a champ. Joe had to give me another training lesson in the bottle feeding area...but, I took great notes, and he only choked once. (Joe's still the best bottle feeder!) We attended an infant CPR class tonight...it was one LONG day! Let's keep our fingers crossed that we make it home tomorrow with our baby! It'll be a long night tonight...trying to get the house clean, the crib put together, and I have a list of supplies I'll need to get tomorrow sometime! So...i'll keep this update nice and sweet...we love you all!

What a way to start the week off....Isaac drank all of his Sunday night feedings with his bottle, so they took his feeding tube out today! He looks like a totally different baby without the tube in his nose and the tape off of his face. Joe was successful with his morning and noon feedings! Then, I go in for the afternoon and evening feeds...and he chokes and de-sats on my watch!!! If this keeps up...I will have to go back to work and let Joe be the stay-at-home dad!!! (just add it to his list...he changes diapers faster, swaddles Isaac tighter in the blankets, and gets him to drink all of his bottle without choking him.....he's starting to make me look bad!) Don't worry...i'm still taking notes from the master! They did start the evening feed tonight by adding a high calorie supplement to his bottle (so that he can put on some weight). He isn't losing that much...but, he also isn't gaining any..he's still about 7lbs3ozs. I was able to give Isaac a bath this afternoon...which he did not like at ALL! I attributed this stressful undertaking to our unsuccessful afternoon feeding....(or at least that's what i'd like to think). Tristen is scheduled to fly out tomorrow...we're trying to talk her into staying with us...she's been quite helpful. Before I left the hospital today...I was talking to the attending doctor about when we could take Isaac home. He said that they don't like to let babies go home on Lasix..so, they would have to talk to the cardiologist in the morning. He also said that they'd like to see some weight gain in him before he can leave (that's why we're giving him the high calorie supplement). I just called the night nurse, and she did get him to drink his entire bottle (only one choking episode--so, it's not only me!). It seems that his tongue falls back and cuts off his airway--just one more thing to put on his list to check out! (that list sure is getting long!) I wouldn't trade my three crazy boys for anything...even though they will make me gray before long!

What a wonderful Sunday!!! Joe started the morning off getting Isaac to drink his entire bottle--62cc's. For his noon feeding, he only drank 27cc's (which is still great!). When I came in for the afternoon shift...Joe stayed with me and showed me his feeding technique...and with the two of us working with Isaac...he drank another entire bottle--62cc's. So, with that training session, Joe left me for the evening feeding. At that evening feeding, Master Isaac drank his entire bottle again!!! Three full bottles for the day feedings...looks like Joe will need to put that crib together sooner than later. Whether it's Isaac deciding he's ready to eat or Joe and I finally perfecting our technique...our baby is EATING!!! (well...we are actually squirting the milk in his mouth...but, he is swallowing it on his own...so, he is eating!) We have Lynn tonight as our nurse, and she is great! She was able to get Isaac to drink 45cc's for her last night! We will have Shannon tomorrow during the day...and she is also another great nurse to help watch our angel. Chris and Eli went to church this morning with Tristen....they looked so handsome. We're hoping to have a successful Monday. Eli will go to preschool, Joe will take the morning shift at the hospital, and Chris and I will work on his school work....whooo, and that's just what's on our plate until lunch time!!! (my baby weight will be off in no time!). I hope you enjoy the pictures today...I took them (Joe is usually the photographer). Joe sewed Isaac's pacifier to the turtle so that it would stay in his mouth...he's such an awesome dad!

Hooray for Saturday!!! Joe started off the morning feeding getting Isaac to drink 22cc's out of his bottle. For his noon feeding, he drank 32cc's from his bottle. For my afternoon feeding...I only got him to drink 17cc's before he fell asleep and the same amount for his dinner feeding. (17 must have been my number today!). Lab results came in today confirming DiGeorge Syndrome...although, his t-cell count is within normal range and his immune system is the part of DiGeorge that we're most concerned about. His calcium levels are also still within normal range and he is no longer on calcium supplements. The meds is on right now is lasix. The neonatologists said that we could keep working with Isaac on his bottle feeding for another month before we would talk about putting in a G-tube (the feeding tube in his belly)...but, the cardiologists want to go ahead and put the g-tube in him so that he can get as strong as possible before his heart surgery. Tristen, Chris, and Eli went to Circus Circus today...needless to say, they are all wiped out tonight!!! Sweet dreams to us all!

Happy Friday!!! Joe took the morning shift with Isaac today....and got him to drink 37cc's from his bottle!!! The lunch feeding wasn't quite as productive because he was tired. I had him for his afternoon feeding...and his sat levels fell to 65, so I gave him a break. That left me with the dinner feeding to beat Joe's numbers....and we only got to 17cc's and he fell asleep while eating! So...for today, Joe was the best bottle feeder! Isaac is staying awake for longer periods of time...and he just gets more precious each day. Chris and Eli were glad to have each of us home with them today...they wore Joe OUT! It was an uneventful day...and i'll take that anytime!

Isaac's nurse last night put him in a "big boy" crib and set his mobile up for him....he looks even smaller in such a big crib! By the way, he now weighs in at 7lbs2ozs. We started off the morning with him drinking only about 10cc's from his bottle...because they came in to do an echo on his heart. They measured his pulmonary artery (among other things) and found it to have grown a little (and that is GOOD news!). At his noon feeding, he drank only 7cc's...he was too tired to drink anymore. By his afternoon feeding...my little guy drank 25cc's...WHOO HOO!!! But, then by his 6pm feeding...he was too tired again, and only drank 10cc's. He's doing great though...we're being as patient as we can...but, we sure do wish this little guy would get the hang of eating so that we could take him home! We haven't received any new lab reports...the ones we're waiting on are a panel showing his t-cell count and his chromosome test results. Chris and Eli are so excited to be back home...and I haven't been so happy to see those stinkers in a long time! Joe and I will start staying with Isaac in shifts on Friday...so that we can spend some time with Eli and Chris and maintain some sanity....sitting in that uncomfortable hospital chair for 12 hours a day can wear on you! Enjoy the pictures from today....and thanks for all your well wishes, flowers, outfits...and love...we love you all!

It was a pretty uneventful Wednesday. I got Isaac to drink 22cc's from his squeeze bottle this morning...and the rest was put in the feeding tube. Then, we had kangaroo time (where he lays on my chest)...for TWO hours...that's a little long to sit in one place, but was sweet! Then we started our noon feedings and his heart rate was a little higher than normal, so we skipped the bottle feeding and just put it in the tube. For our afternoon feeding, we pulled out the squeeze bottle...and this time he was too anxious to feed...and he wouldn't take enough breaths...so, then his sats (oxygen levels) went down to 60 (they should be 100--but his are staying in the low 90s)...so, after 10ccs we went again to the feeding tube. Joe made it to the hospital with the boys for the dinner feeding. He got Isaac to drink 20cc's!!! The boys finally got to see their new little brother!!! Eli kept saying how CUTE he was....I'm glad...I was worried that he might not like him because he doesn't like babies. Now the boys are home...and it's juggling time! We have another nice nurse caring for Isaac this evening...maybe she can wave her magic wand and get him to eat for her!

It has been one LONG Tuesday! When we arrived at the hospital...the plastic surgeon was already looking at Isaac. He said that Isaac does have a uvula (it's just small and forked), but he does have a cleft palate in his soft palate (the back of his mouth). He will need surgery to correct this when he is about 8 months old. So...he will not latch on to bottles like other babies...hence the big squeeze bottle you see in the pictures. We're working hard with Isaac and his bottle feeding so that we can get him home. Joe fed him with the squeeze bottle for his 6pm feed...and got him to drink about an ounce!!! We're headed in the right direction. They confirmed that they will keep an eye on his kidneys and do another ultrasound of them soon to see if they still seem full. His feeds were increased to 62ccs every 3 hours...and they are letting us try feeding with the bottle at each feeding and when he gets tired, we put the remaining in the feeding tube. We were then able to take a few pics of Isaac with his easter bunny...hope you enjoy! Joe heads out to Utah to pick up the boys tomorrow. I hope we get to bed early tonight!

Happy Monday! We started our day off with the speech therapist. She is working with Isaac trying to get him to drink from his bottle. We finally decided to try a flexible bottle that you can squeeze (this is usually used for kids with cleft palates) and the standard flow nipple that he likes. The therapist could only get him to drink 20cc's...but, at our 6:00pm feediing, nurse Melissa was able to get him to drink 45cc's!!! Following the speech therapist, Isaac was given a ultrasound that showed that he had two full kidneys. So...the kidneys are on the list for further evaluation..(don't worry...he's on lasix..and pee's like a champ!). A plastic surgeon should come by soon for a consult to check out his mouth...he is missing his uvula, but we need to know if he has a cleft palate farther in the back of his mouth and if this will need further correction. He has a sweet nurse tonight named Jessica..so, I know he's in good hands.

What can we say about today. Happy Easter?? We spent the day at the hospital...Chris and Eli are still with Christy...It will be great to have all three boys in our house reaking havic in one place!!! Isaac's weight is still about 7lbs 1oz. His feeds were increased to 60cc's (2 ounces) every three hours. He was taken off his IV!!! Now, he only has monitor cords attached to him. On Saturday night, nurse Lisa thought she noticed that Isaac was missing his uvula (the dangling thing in the back of your throat). She thought this may be some of the cause of his feeding issues. On Sunday, nurse Carla also couldn't see the uvula and reported it to Dr. Ekpouda (i'll find the correct spelling later). Dr. E came over to check it today....and to his amazement...it was absent. That made his sit back and scratch his head! So, tomorrow, we will have speech therapy come over again to work on other methods to feed him and a plastic surgeon that specializes in cleft palates will come and take a look at him. Although this new finding does not make me happy in any way...it is good to maybe know the problem with his feedings so that we can now work on correcting the issue and getting my butterball home!!! Let's hope we have a great week ahead!

Aunt Mandy came to visit us today. It was a SURPRISE!!! Joe and I got off the elevator and there she was. We let her hold our butterball...but, she looked petrified the entire time! Joe took the afternoon shift today so that Mandy and I could go and buy a crib. Maybe if we build the crib...Isaac will come!!! He was taken off his bottle feeds today...they are giving him a little break. He weighed in today at 7lbs 1oz. He was a little fussy today (he probably got some on my milk after we had Mexican food!! I'll try to stay away from the spicy food!) Let's hope that he gives the night nurse a break!