Today was Isaac's pre-op day. There were no surprises. They had to draw blood...which, getting blood from Isaac is a miracle in itself)...and after 2 tries and 2 heel pricks later...they were successful! He weighed in at a whopping 12lbs 9 ozs. I talked again with Dr. Hanley's PA and got a few more questions answered. She said that Isaac shouldn't need his next repair for 6 months (even though the window is 3-6 months). That would be a nice break! I didn't get to snap any pictures today because when we got back....we both took a nap and then Joe flew in this evening. Tomorrow our day will go as follows:
**No formula added to breast milk after 7:00am
**No breast milk after 9:00am
**No clear liquids (pedialite) after 11:00am.
**Meet at the hospital at 1:00pm
**Tenative surgery scheduled for 3:00pm (we are his second case...so, it could be a little sooner, a little later...and if his first case goes too long...we could get bumped all together)
We have plans to snuggle all morning...to give him a good scrub down (even behind those tiny little ears...and to take loads of pictures!)
Now...because I didn't have any pics of Isaac to share...I thought I'd share a funny story with you. (Joe will kill me..but, he doesn't read the blog everyday..so, it'll be too late!). Joe was packing a few things this morning to bring back for us. Like Isaac's feeding pump, a few more outfits, the mail, etc. Now, Isaac is getting a little diaper rash on his bum, and what works great for him is this stuff called "butt paste". So, being the sweet dad that Joe is...he asked if I wanted him to bring it...and I said YES...Thanks! Well, Joe is FLYING back to us today...and he is not checking a bag. So, he goes through security, and they search his bags...and hold up the BUTT PASTE and start waving it around and yelling to each other, "What is this Butt Paste??" Now...Joe is totally red I'm sure...and the airport is packed....and they are already looking at Joe because they are searching him and his bag and now he has to explain to everyone what butt paste is and why he is trying to carry it on! (I'm laughing so hard right now...I wish I could have been there!) So...your picture for today..is butt paste! (Don't try to fly with it..it's not allowed!)
I will carry my laptop and camera to the hospital tomorrow and post often...there's wireless...and I promise to keep you all updated!
Thanks for all the love and prayers you've sent our way! I can feel your hugs from here!
Tuesday, July 31, 2007
Monday, July 30, 2007
Christmas for Isaac!
and his new frog!
As much as my sweet husband gets on my last nerves....I sure do miss him!! Joe flies back here tomorrow (Tuesday) and we can't wait!! Isaac was a bit of a crab muffin today. He has an internal clock that goes off at exactly every 2 hours. At that point...he expects his milk to be warm...and now starts to look at his g-tube bolus waiting to hear it start to drip in. (this boy is not delayed one bit...I can't even believe that he can see that tube..yet, already know that's where I"m putting the milk each time!). I tricked him last night...and got 4 hours straight sleep! I set the pump to feed him 1.5ozs per hour for 3 hours....so, he's use to feeling full, then hungry. So, for 3 hours, he felt full...and the fourth hour he would wake up, give me a little whimper...and I'd change him and set the pump again! (I marvel at my genius mind sometimes!). We'll see if my plan works again tonight! Mom sent a box of goodies for Isaac. I'll ask Joe to attach another pacifier to this new frog and we have a snazzy new outfit to take him out in, a tag blankee, and a backpack to put all the goodies in!!! (It's like Christmas around here!). The boys are having fun in TN. Eli is train happy playing with Caleb and Christopher is glad that he can use the phone all day and play his video games (what a charmed life they lead...they have no idea!). We have our pre-op appt tomorrow morning (Tuesday) at 8:30am...I hope I don't oversleep (yeah right.....if I could get that much sleep, I'd gladly miss the appt for more sleep!). I'll post later tomorrow when we get back to give you the news...but, everything should go smoothly. The nurses gave me some of the numbing cream to put on Isaac's arm before they draw blood (he's so hard to stick...and they just keep trying and trying...like his blood runs free is some spots and is barren in others?!?) My little guy is sleeping in his special place...you know by now...the swing. That was the best $150 I have ever spent...if only we could make time to buy rechargeable batteries for it! (We go through them about every 3 weeks!) I don't think he knows what it's like to actually sit still! ( I know..the hearts on his cheeks are TOO big...but, I didn't have Joe here to make them...and once I put them on...I didn't want to pull his face off!)
The Ronald McDonald House address is:
520 Sand Hill Road
Palo Alto, CA 94304
But, really...we're hoping to be out of here early next week!
**On a side note: I've met a lot of people on the internet and here at Stanford who have children with the same heart defect and other problems...and I am so thankful that Isaac chose us to be his parents. That he waited for this time to come to earth. That he knew our lives would be in order in such a way to give him the love and care that he deserves. I am so thankful for Joe's job and the support that he receives daily. I am thankful for such loving friends and family that give generously to help us and support us. I have seen so many famlies here this week that don't appear to have the love of a spouse that rivals mine...that support you need at such a stressful time. It breaks my heart to see families here that can't afford to fly home to visit their other children(I want to pull out my credit card and give them all a ticket!). I have truly been humbled these last few weeks and will never take another moment with my husband and children for granted again. I will listen to Christopher's ramblings about the latest video game and talk all night with Eli about the newest Thomas the tank engine...and I will not forget to kiss all my guys each night and let them know how thankful I am to have them in my life. (Now that I've made you cry...I'll still yell at the boys for not cleaning their room, for missing the toilet, for leaving their wet pool towels on the floor, and I'm sure that I'll kiss Joe goodnight..but, still be mad at something he did that day....but....I'm still thankful to have them!)
Sunday, July 29, 2007
I had Isaac all to myself today!!! I spent the majority of his waking hours munching on his fat neck rolls and singing silly songs to him. He has the cutest little giggle. I have tried a number of times to record it on my cell phone....but, there's no more space available...and I can't find another video that I'd be willing to delete...so, you'll have to take my word for it...his giggle is adorable! Joe made it back to Las Vegas this morning. He talked with our Bishop last night, and he fasted today for Isaac. Our ward at church will do a fast on Tuesday...(if I wasn't Isaac's milk cow...I'd fast along with them). We are so thankful for all the prayers that come our way...we have never felt so much genuine love from others (it's fabulous!!). I was able to get my little man in the bumbo chair today...he did a great job...he had the side slant, the back slant, and the "almost lost my head" slant going on...it's was GREAT! I was able to get a few pics of him snoozing in the stroller...then, the flash woke him up! (sorry Isaac). And nothing is cuter than a naked baby belly....with the little mickey button showing (I keep the gauze under it so that his skin doesn't get irritated). I had a blast playing with him today...if he didn't have that darn oxygen canula up his nose...we could have played dress up! We miss Joe and the boys...maybe we can get home next week!!!
Saturday, July 28, 2007
Isaac fell asleep while I was changing him...
That is a baseball sticker on his face...on the other side is a baseball...
Not much to report on this lovely Saturday. We're up all night with Isaac....so, we don't go down for breakfast until almost lunch time! We spent the afternoon walking around outside with the stroller (and all of our medical equipment)....I still can't get over how beautiful it is here!!! Joe is flying home tomorrow morning to check on the house and get a few days of work in...he'll fly back on Tuesday night....for surgery on Wednesday. Thanks to all my "heart mom" friends who have told me repeatedly not worry and it's not as bad as I think! If we could take Isaac to church tomorrow...we would...but, too many germs. Everyone needs to start their prayers early...for Tuesday's pre-op appointment and the big day on Wednesday. Even though he has to wear the oxygen all the time now, and eats only through the tube....you can't look at him and tell that he's so close to this heart surgery....I'm so thankful that they found the defect when they did and that we have had so much time to prepare for this day. I didn't get him in the bumbo chair today...so, I hope these quick pics will do! Thanks for checking on us!
Friday, July 27, 2007
Issac in his bouncy seat at the hospital.
Joe made the heart sticker on his face.
and notice the arrow sticker that points to the heart....
It was a WONDERFUL Friday!!! Last night was HEAVENLY being out of the hospital!! Even though Isaac still woke up every 2 hours...it was nice that THAT was the only thing waking us up! Yes...you heard right...my little guy is still eating every 2 hours. They told us not to work with bottle feedings until after surgery so that he doesn't aspirate into his lungs...so, we are feeding him solely through the g-tube. But, I do feed him (the pump feeds him 3oz over 30 mintues) and I wait for him to get hungry and fussy...which is usually every 2-3 hours...and then I plug him back up! I don't want him to forget what feeling hungry feels like...so, that in a few weeks we can work on solid foods and try the bottle again. I did give him a taste of my chocolate milk shake today...I think he liked it!!! We spent the day outside today. We loaded the stroller up with: his oxygen tank, feeding pump, cooler of bottles, baby bag, and toys....and walked outside all afternoon. (There's a mall across the street....I wish I wasn't saving to pay for hospital bills...because...the stores were calling my name!!!) Isaac is now snoozing in his favorite swing...which his legs are starting to hang over...so, I hope he'll sleep in the crib soon! We got a call from Dr. Hanley's office and they said for us to be at the hospital Tuesday morning at 8:30am for his pre-op physical. I'm sooo glad that they are doing the surgery...but, really...I'll be a basket case next week! This surgery is going to be a shorter sugery than we expected. They are going to go in and attach the pulmonary artery to the aorta (pa window)...this will allow the pulmonary artery to grow--we're hoping. They said that this surgery should take 3-4 hours and the recovery should be only about a week! But, he will have to come back in 3-6 months to have a conduit graph put in place of the pulmonary artery and valve. (I think that's what it's replacing)....this graph is what will have to always be replaced...they said the average is every 3 years...but, it could be in 4 months....he could go 10 years...each case is diffferent! We're praying that they can fix his little heart in as few surgeries as possible so that he can enjoy being our little butterball!!! Joe brought the bumbo chair...and he is SO cute trying to sit up in it...I'll snap a picture tomorrow. He still can't hold his head up...and tomorrow he'll be 4 months old!!! His little belly is finally healed from the g-tube surgery...and now we'll have the heart surgery....I don't know if we'll ever be able to get him to lay on his tummy! He'll be one of those kiddos that goes from sitting up to running around!!! (and I'll take that!!) I miss Chris and Eli SO much!!! They would LOVE this children's hospital and the Ronald McDonald House...I'm still hoping that this time next year...all the boys will be well and we can take one GIANT vacation!!!! Thanks for all the comments...I read them everyday! We can't wait to show off our little guy when we get home!!! It's absolutely amazing how fast you can fall in love with such a little person...but, he wraps me around that little finger a little tighter each and everyday!
Thursday, July 26, 2007
We made it to the Ronald McDonald House....and there is no wireless. I'm updating this blog on my cell....so, more details will come tomorrow when I can use the laptop. We are all fine and isaac is snoozing in his swing as we speak.
Wednesday, July 25, 2007
Ok Readers,
This is Joe, and I'm not certain how this whole "Blog" thing works, but I know my job is to update it tonight. Most of you already know everything, but you're reading this only to see what kind of cute things Kathy typed - too bad for you (I certainly don't know how to load pictures either, so it's just words from here)...Kathy will be on-line tomorrow, and she can edit this whole thing then, so feel free to stop reading now, and catch back up on Thursday.
Here are the facts as I am aware: We're pretty sure Isaac has a heart problem.
Everything else is hypotheses, asumptions, suppositions, speculations, conjecture and general best guesses.
What we do NOT know:
1 When is surgery
2 What exact procedure they are going to do (they always go in with a plan, but who really knows)
3 When we are coming home
4 When they are going to have the supplies we need to allow us to be discharged
5 How long I can take driving the mini van regardless of how loud I turn up the radio
What we DO know:
1 We are going to have surgery before 8/15 - hopefully as soon as 8/1
2 That surgery will not be the big Unifocalization - Instead, they are going to create an "aortopulmonary window" (Google is your friend here) to increase blood flow, and hopefully grow those PAs in preparation for the unifocalization in 3-6 months- Again, Kathy can drop more knowledge on you tomorrow.
3 We DO have a room at the Ronald McDonald House tomorrow after 3pm for as long as we are in CA
4 Kathy is in a nice room at a decent hotel getting some much needed rest tonight
5 The people we've come in contact with during our experience here are outstanding
6 We miss Chris and Eli a ton
7 We love every one of you. We feel your thoughts and prayers, and thank Heavenly Father every day for such wonderful friends and family.
That's it. Good night.
Tuesday, July 24, 2007
What's today???? ummmm...Tuesday..yes indeed! Well, we had a cranky baby on our hands! All we could do was to give him gas drops and tylenol. Don't worry...I rocked him ALL day long!!! He just likes to be held alot now...and it's good for him that I'm ga ga over him and will do whatEVER he wants! He didn't desat at all last night...my, what a blood transfusion and double doses of valium will do for you!!! (I asked for some myself!) But...we did reach a milestone today....Isaac LAUGHED!!! Joe was in the room and he was able to hear it! It was just perfect...among all this craziness and stress...my butterball decided to FINALLY laugh!! (I was so happy, I almost cried!)... We have a really good nurse tonight, so maybe I'll catch a few zzzz's. Dr. Perry came by today and checked on Isaac while Joe was on the phone with Dr. Mayman...so, Dr. Mayman made Joe hand the phone off...and the two docs chatted. The conference is tomorrow morning...that will determine what and when surgery will be for Isaac. We hope that they can squeeze us in...our fingers are crossed. Our roommate goes in tomorrow for her third repair...(say a little prayer for Callie...)her parents have been wonderful to us. I can't tell you guys how much we appreciate everyone's help and support. I won't get all mushy and gushy...just know we love everyone of you...(or we wouldn't have invited you to view this blog). Enjoy the pics...and let's hope for a great Wednesday!!!
Monday, July 23, 2007
Today we had our heart cath. It was scheduled for 11:00...but, we didn't get in until 2:00. The procedure itself only took about 90 minutes and the renowned Dr. Perry performed the cath. He said it went as expected. They did note that there has been significant narrowing of the collaterals since last months cath. The desat spells that Isaac is experiencing are tet spells. He isn't considered a true TET, because he has the collateral arteries (that send extra blood to his lungs), but, he also isn't considered a true Tet with Mapcas because the stent is placed in his valve, causing it not to function...thus, giving us a baby that has tet spells and is at rick for too much blood flow to the lungs (wow....we'll be ready for med school soon!!!). He made it off the vent great...well..he was CRANKY and his heart rate wouldn't get below 200 (it's usually 150)...so, nothing that a double dose of valium can't cure!!! It's 9pm and he's just finishing up his first feed of milk (let's hope he tolerates it well)...he had horrible wretching after waking up from the cath...and they gave him zofram to settle his stomach. He's sleeping now...with orders to get tylenol every 4 hours. We have a new roommate...and it's actually another heart mom that I email. What a CRAZY world!!! I was able to get sleep last night in the motel (yes...MOtel...not the luxorious HOtel that we've been so accustomed to...it looks as though some priorites may need to change if we're going to be here for a while!) The boys sounded excited to be headed on vacation. They take off close to midnight..I hope they behave!!! Mandy sent me a video of Katie and Maggie...they look like they are having a blast...I wish I was there! Joe gets to spend the night in the motel tonight. When I checked in with the Ronald McDonald House,....we were number 8 on the list...but, they said they were hoping to get us a room by the end of the week! That would be great and a huge relief!!!
Sunday, July 22, 2007
What a night we had last night....NO SLEEP...well, maybe 2 hours total...you should see the bags under my eyes. Isaac's sat monitor hasn't been working correctly, so they hooked up a portable one .... and it has the loudest alarm on it! (the whole third floor knows when he de-sats)~! Our roommates asked to be put in a private room...so, they are gone!!! YIPPIE...they were VERY loud! We already asked to be put in a private room, but if a kiddo comes out of surgery and needs isolation, they can make us move back to this room...so, really...we're fine...toughing it out!!! (ha ha ha). Isaac didn't de-sat as much today...but, he's still showing off! They did a morning xray and his IV finally blew. So...they had to bring in a guy from the CVICU...he's suppose to be the best...but, after two tries...he left with his head hanging! They decided to wait until tomorrow when he goes in for the cath...they'll give him a little gas...and put it in then! (thank goodness!) Joe should be here anytime..I can't wait to give him a BIG FAT HUG!!! The boys sound excited to be headed out on another vacation! I hope they give us one night without moving someone in the empty bed!!!
Saturday, July 21, 2007
It's Saturday....and so LONELY! At least I have Isaac to keep me company!!! I've been keeping notes each day so that I don't leave out anything that happened each day! Isaac weighed in this morning at...11lbs 9ozs. They did a chest x ray this morning...I am assuming that it was clear because I haven't heard otherwise. They had to draw labs again this morning...but, I found the secret weapon---there's a cream that they can put on the babies that numbs the skin...but, it has to be done 30 minutes prior to the blood draw. I asked for the cream..they were sweet and put it on Isaac...and he screamed with the stick, but while they were fishing for the vein, he just laid there....so, maybe it works a little! He started wretching last night and today, so I lowered his feeds from 90cc's every 2 hours to 80cc's every 2 hours--that may not seem like a lot...but, like any baby, if they take one extra sip and need to spit up...they will, and because of Isaac's stomach wrap, he can't spit up and does the wretch. (is everyone clear on that??....ok...moving on). His oxygen has been on 1.5 liters all day...and he's had a de-sat spell about every 2 hours...this last one lasted for about an hour....it's soooo sad...his little heart races, his sats get low, and then he can't take it anymore and just passes out (goes to sleep....but, it looks like he passes out). (I know...you don't need me to add any more drama to this already dramatic situation!). He did have a spell this morning where he went into the 40's...I'm so glad that the nurse was here to see it...I don't think they would have believed me! Thanks Mandy for taking Katie back to AZ with you...don't let her kiss Magpie in the face! Thanks Sue for watching the boys and taking them back with you. Thanks Christy for watching the boys all week. Thanks Mom for getting the tickets to bring the boys back....and Thanks Joe...for giving me the three best boys a mom could ask for!!!
Friday, July 20, 2007
I tried to get Isaac to take a bit of my cookie...he doesn't know what he's missing!
As for our Friday...here's what's going on: Joe flew out EARLY this morning--back to Vegas. His mom flew in this morning also. Christy went back to Utah, Mandy is now in Vegas, she is going to take Katie to her house FOREVER! (I wish!) Isaac had a lung profusion scan this morning..they put some radioactive liquid in his iv and then took images over 30 minutes. After a small fit where he desated to 60, scared the nurses to death where they called in about 3 docs....he was so tired that he fell asleep and did a great job! He's been really lathargic today...sleeping all afternoon...which, if you've read even one of my previous posts...my baby doesn't sleep! I thought this was my day to get a nap...WRONG...we're still sharing rooms and they keep discharging and admitting new babies...so, the minute I laid down...a screaming baby came in...just my luck!!! At least they are feeding me good...I'm going to gain 20 pounds while I'm here...Isaac and I are going to need to start making laps around this place to work off some of these snacks! Thanks to our moms and sisters and friends for helping us with all of this craziness...we couldn't do it without you! We love you! (I guess this means I'll have to save up for big xmas presents!)
Thursday, July 19, 2007
Thursday evening update****It's been a good day. Isaac has been lowered to only 1 liter of oxygen...he's still having the desat spells....but, we're here!!! They drew his blood (after 4 attempts), and they came back good--he doesn't need a transfusion. His chest xrays came back fine, but I believe they said he has a lung profusion test tomorrow (maybe that checks fluids also??). Joe will be flying back to Vegas in the morning. He's got to give the boys some loving, visit with his mom (who flies in tonight), and PACK, PACK, PACK! Sweet Joseph is going to DRIVE the van back up to Stanford on Sunday, so that if they discharge us next week after the cath, but make us stay in town...we're not renting a car for weeks. It's 11pm now...and both Isaac and Joe are snoozing...soo sweet! (I just woke up from a nap--I can't believe that I can sleep in this place...but, when you're tired..you can sleep anywhere!) There's a heart mom who's carepage site I follow...and they just arrived at Stanford last night. I might try to call her tomorrow to meet her...I think her little one is having surgery next week (with Dr. Hanley also). Here's hoping we have a good night and nothing crazy happens tomorrow!
NOON UPDATE****We're staying in the hospital FOR SURE until he has his heart cath on Monday. He should recover by Tuesday...and they conference with Dr. Hanley on Wednesday..... But, that news is great! When they came in last night and were talking about discharge...I was a little on the angry side (just a little!). But, Isaac is now on 1.5 liters of oxygen and will still have "episodes" of desat spells. They did a chest xray this morning to check his lungs for fluid...They need to draw blood. I can't remember if I told you...but, they have tried drawing his blood 4 times already....he is a very hard stick, and they are sending in a really good team. They are actually getting blood to come out...but, it clots too fast and there's one panel that is showing low platelets. The cards said he may need a blood transfusion to help carry the oxygen around in his little body. So...this weekend...we're hanging out and just watching what he does! And that is FINE with me...although, I wish we were in a private room...but, they need those for the kiddos that are just out of surgery...so, I won't push my luck! I will update later tonight and add today's pics!
Wednesday, July 18, 2007
Our latest news is CRAZY!!! Today...Isaac was on room air until about lunch time...his sats were reading in the high 90s to 100...that's really not even possible...but, that's what they showed. Then, this afternoon, they dropped back into the 60s, so he was put back on oxygen. For the majority of the day...his sats (with oxygen) have stayed in the mid 80s...which is good. Now...they think alot of his success today is the lower altitude...it is easier for him to breathe. But, we can't take him back to Vegas...because he can't breathe. Now...before they can decide if they are ready to do the surgery...they said that they need to do a heart cath. They made us stop feeding Isaac last night at 2am in preparation for this cath. They decided at 2pm today that they wouldn't be able to squeeze him in...so he went 12 hours with no food! They can't get him in tomorrow...and they don't do the caths on Friday. So, they want us to wait to do the cath on Monday. But...they actually said they wanted to discharge us from the hospital and for us to stay in town until Monday's cath. I told them that I don't have his oxygen, pulse ox meter, feeding pump, breast pump, crib,....etc... So, I talked with the card resident tonight on the phone and we will talk with the attending in the morning during rounds. They just don't look at Isaac as so emergent now that his sats have settled down...but, told us that we can't take him back to Vegas until he has surgery...which is still up in the air... JUST CRAZY!!! I'll post tomorrow and let you know how the rounding with the cards went!
let's take this update from the top...they gave us a 3 hour warning call last night...We're headed to Stanford. joe brought the boys to kiss bye. We flew out at 8:15. Now...this plane was soooo tiny, only the pilot, 3nurses, myself, and isaac could fit. Everyone knows that i am afraid of heights and do not like confined spaces....well, here goes a 2 hour flight! But, I was going to be brave. I made it about half way before I started throwing up....and tha continued until we landed. Isaac was a champ. I was able to feed him early in the flight via the g-tube and he slept most of the way. Once we landed, we had a 20 minute ride in the ambulance to reach Stanford.....I could see the light!!! Until the ambulance stopped the hospital...they took isaac up while I continued to throw up on the lovely lawn...with the help of my flight nurse, that only lasted another 15 minutes, and we were able to find isaac. Wha a world of difference in the care....and we're only on a peds floor! They got isaac all situated, I met the docs attending, and I spent another 15 minutes in the bathroom throwing up. Thank goodness the nurse is awesome, she kept isaac's feeds coming before he screamed for them and I was able to sleep for a couple of hours. They had to draw blood from my angel...and it has been so hard for him and them...his little veins just collapse. The blood work just came back and his platelets were really low...and to make it sound crazier....his sats are 100...they took him off oxygen! Now...how in the world did he go from satting in the 50s over the weekend to now 100s....which he should not be at considering his heart condition....this could mean TROUBLE! Now...we are in a room with another family....divided only by a curtain....so, don't expect too many calls...i would hate for that family to have to spend their days listening to me blab!!! I will update throughout the day. oh...and they have a heart cath scheduled for this morning..so, he hasn't been able to eat since 2am...he's being such a good baby considering.
Tuesday, July 17, 2007
We are on the 8pm med-vac to stanford....I will post later tonight once we are settled....wish us luck...
Monday, July 16, 2007
It's Monday night and we are back in the hospital. Isaac's sats were in the 60's again....so Dr. mayman told us to get on in!!! They checked blood work, xrayed his lungs....everything is fine...so, it must be his heart. We are headed to Stanford....we'll find out in the morning if we get air-lifted out tomorrow or Wednesday. I have my cell and charger....so I'll keep the blog updated. Christy is at our house watching the boys until Sue gets there on Thursday night. I'll keep up with isaac....if you guys can call the boys and keep up with them... Thanks!
Saturday, July 14, 2007
What a good night we had. Isaac is still waking up every 3 hours at night for feeds (2 hours during the day)...but, he starts to fuss, I warm the bottle, change him, put him back in his swing, put the milk in the feeding tube, and plug him up with his pacifier...and he rocks off back to sleep! It's only about a 10 minute process...and that's great!!! Today we had a pretty good day...no crazy stories to tell you about. I was able to get out of the hosue and do the grocery shopping...YIPPIE!!! One of these days...I'd like to just sit by the pool for an hour...just one hour... Isaac is being a little cranky now about going to sleep, so I'll keep this post short. Joe will take the boys to church tomorrow...maybe Isaac will be good to me and sleep all morning!!!
Friday, July 13, 2007
Sorry about not posting yesterday...I know many of you don't know that I have 3 boys, and one of them is sick, cries all day, eats every two hours, slimes me with his g-tube, and likes to be held 20 hours a day...It's just been an EXHAUSTING couple of days!!
Dr. Mayman called this morning after talking with Dr. Hanley (in Stanford) and the surgery date is still the same...but, he said if Isaac has any more bad blue spells, he will definately work him in his schedule. Mark, our speech therapist, came this morning and Isaac drank 15cc's from his bottle (half an ounce)...and he did that without choking! We did have to put him on oxygen though..but, it was great! He actually took a really long nap today...but, when he woke up...I checked his sats..and they were in the 60s again (i knew it was too good to be true!)...so, back on the oxygen until Joe came home from work...he then miraculously recovered and jumped into the 80s at some points!(This little guy just likes to keep me jumping!) Chris and Eli do their same old swim, tv, video game schedule...until I can catch them and get some sort of school work out of them (today was one of those days where I just let them run past me...I didn't have the energy to chase them with my workbook!) We're all looking forward to public schools this year...even if they are Las Vegas public schools!
Wednesday, July 11, 2007
Let me tell you how our night went....
I hooked up the feeding pump...and changed his feeds to 2.5 oz every 2 hours to be given over 40 minutes...and he didn't wretch once last night (he did once today). I set my cell phone to vibrate every 2 hours so that I could refill his pump and start it again...he didn't wake up once...not even when I would change his diapers. I know it was good for him to sleep that hard! And, although I had to wake up every 2 hours....it's easier to wake to a vibrating phone than a screaming baby!!! We stayed on that same schedule today and it worked really well. The speech therapist, developmental specialist, and nutritionist came today. Isaac weighed 11lbs 2 ozs. We're working on trying to get him to take a little by mouth...so that he doesn't lose that skill after surgery! It's game night tonight...so, I have to race Eil and Joe soon...Isaac's snoozing in his cradle.
Tuesday, July 10, 2007
Our day started early...well...it started at 1am when Mr. Isaac decided once again to wake up every 2 hours SCREAMING ready to eat again!...(I just can't keep up when I'm half asleep!) We took Brooke and Madison to the airport this morning at 8am. We came home and I TRIED to take a nap...but, by this time, Chris and Eli were awake and Isaac was ready to eat again! So....there was no nap in my future!!! We had our appointment with the cardiologist. Isaac weighs in at 11 pounds!!! Whoo hoo!!!
Dr. Hanley (at Stanford) will be reviewing our heart cath tomorrow and will contact Dr. Mayman by Thursday. (He's going to try to get us into surgery earlier..but, Dr. Hanley is pretty booked!) Dr. Mayman saw Isaac have an "episode" and he told me that was wretching (when he tries to spit up and can't..then gags and cries...it's sooo sad). I'm going to lower his feeds to 2.5 every 2 hours and see if that sits better on his tummy. I just hooked up the feeding pump and will give that a try tonight! (I hope it works)....and gives me an extra 15minutes of sleep tonight!
Monday, July 09, 2007
Mr. Isaac had a GREAT day!!! We had an appointment with the pediatric surgeon that put in his g-tube....and she said that he looks great! He has a little oozing from the stomach site and it is a little red, but she said all of that is normal and he looks fine. She ordered his "button" and as soon as that arrives, we can get it put in...which could be as soon as next week!!! This snazzy button will take the place of the long tube that is connected to his belly now. He is still slobbering a lot, but I just suction him before he starts choking! (I'm going to check on an electric suction machine...he LOVED it in the hospital!) He is sleeping right now in his cradle..which is AMAZING...he has NEVER slept in it before...it's a MIRACLE!!! I'd take a picture...but, I'm not taking the chance that he'll wake up. Joe is over at MaryKay's (our neighbor) house...when she saw our washing machine sitting by the road, she came over because hers was leaking. When I told her that Joe did the install in 20 minutes....I offered him to install a new one for her...and like the sweetie that he is...he's over there now installing it for her! Brooke and Madison fly back home tomorrow...we're glad they were able to come for a visit!
Sunday, July 08, 2007
I am so sorry about not calling eveyone this weekend and not posting updates as a good mom should. Mr. Isaac has been in RARE form and tried to break me this weekend. Last night, for instance, he woke up every hour...he was hungry, choking, lost his pacifier, or stinky...you name it..he needed it fixed!!! Today, we took a good afternoon nap together (Isaac, Eli, and myself). He sats got a little low today, so we hooked up the old oxygen machine and put it to good use! He is still eating 3 oz every 2 hours....which seems like he is always eating! He is starting to look plumper...I can't wait for our doctor appointments this week to get weighed in! Our friends Mark and Amy came by this evening...we love them so much and it was so good to see them (Mark is Isaac's speech therapist)....and they brought over cookies...always a welcome treat! We have an appointment tomorrow with the surgeon that did the g-tube and fundo...so, i'll post about that visit tomorrow.
Friday, July 06, 2007
It's finally FRIDAY....not that Friday means anything to me...but, I'm glad for everyone else that is excited for the weekend to begin! Isaac is still eating every 2 hours....He's going to turn into such a BUTTERBALL!! At least he's sleeping at night (oh...he didn't last night...but, maybe that was a fluke...). We're glad to have Joe home for the weekend...I have a "honey do list" with his name written ALL over it! The boys are still being such troopers and Madison is chasing them around the house! We didn't do anything spectacular for the 4th...Chris was popping fireworks with his friends and Joe took Eli to the park to see the fireworks on the strip. Brooke and Madison went to bed early. Isaac and I did our thing...we hold down the couch! (It's a tough job, but someone has to do it!). We hope everyone has a good weekend!!
Thursday, July 05, 2007
Oh....what a Thursday!!! Brooke made it in last night and Madison (her 2 year old) is a red-headed angel!!! (probably what lies ahead for Maggie Moo!). Isaac is sleeping at night like a champ! (I mean a 5 hour stretch...and boy do I need that break!). I'm still working on the feeding pump...hopefully, having nurse Brooke in the house will help me get it connected correctly! Isaac was able to get some good naps in today and he is sitting in his bouncy seat now watching the lights! (with his tube attached so that he can burp at will...which he does). Chris played with the neighborhood kids a lot today (I think they had left-over fireworks,...so, i'm sure they were up to no good!) Eli was so helpful playing with Madison today...he's such a sweet mothering nature about him (don't tell Joe I said that...he'll think i'm callling his son a sissy!). Brooke helped me hold Isaac today...and I was actually able to make dinner...what a surprise for Joe when he came home! Nothing real new to report...just that Isaac is getting a little better each day...and better means, back to his happy self...I'm still monitoring is sat levels and constantly cleaning the site where his g-tube is attached to his little belly. You know, I can almost open my own medical supply store now...we have an oxygen machine, extra tanks, a feeding pump, iv pole, pulse ox, and expensive formula for sweet babies! I'm so happy to have Brooke here and even more happy that all of my boys are home!!
Isaac
Chris
Elias
WP Themes designed byEZwpthemes. Converted to Blogger by Blogger FAQs & Mobi123. Powered by Blogger