Anderson's 1st Birthday Parties

While my mom, Zach, and Blayne were here in July for Everett's heart catheterization we had an early 1st birthday party for Anderson so that they could be here for his celebration.  We had his cakes made to match his 1st birthday theme.  His big cake was a #1 and his smash cake was made to match it. He had a cold and wasn't very impressed with his cake.  He had a little bit of icing, but spent most of his time rubbing his itchy nose.

Then, when Grampy, Chinah, and Grace came at the beginning of August we decided to have another party so that they could celebrate his 1st birthday as well.  We had it at a local park and also invited the children from the playgroup the boys are in.  Since we had already done a cake this time we did cupcakes.  We don't have pictures from his second party yet since Aunt Chinah graciously took them and hasn't had time to send them to us yet.  Grams and Memaw and Pepaw both sent Anders cards with a gift enclosed.  Anderson received lots of wonderful gifts at both parties and we are so grateful we had family and friends here to celebrate his 1st birthday!

All About Anderson

 My sweet baby boy will be one tomorrow!  I can't believe it!!  Anderson is such a sweet baby.  He looks so much like Everett did at this age, but he has beautiful blue eyes and Everett had brown very early on.  Anders LOVES his big brother and is completely enraptured with watching Everett any time he is in the room.  He is such a mama's boy, but is crazy about his daddy.  He said "mama" first on July 23rd , then on the 27th said "dada".  He said both of these previously, but we didn't count them as words until he said them consistently and associated them with a person.  He started pulling up and cruising months ago, but hasn't taken his first steps yet.  He does stand without holding on to anything sometimes.  Anderson is a monkey!  He climbs on everything-the ottoman, the dishwasher, the bookshelf, the dining room chairs, basically anything that he can get his hands on.  Ander loves to be held.  Sometimes he'll follow me all through the house saying "mama" and pulling up on my legs anytime I stop.  It makes it awfully hard to get anything done!  I'm still nursing him which means we have almost officially made it an entire year nursing!!  We have started giving him cow's milk in his sippy, but he's not wild about it.  He is a great eater.  His favorites are probably beans, chicken, apples, cheerios, and french fries.  He ate baby food for a very short time because he prefers table food.  He is such a smiley guy, and will "talk" to and smile at anyone who pays attention to him(as long as they don't try to take him from his mama).  He is still not sleeping through the night which means I am one exhausted mama.  Everett started sleeping through the night in his own room in his own bed at six months old.  Anderson's crib is still in our bedroom.  The plan is for Everett and Anders to share a room and with Anders not sleeping through the night we don't want his night waking to wake up Everett.  Sometimes he wakes up just to make sure I'm there and goes back to sleep once I pat him on the back.  He still takes his pacifier, but we are limiting it to naps, bedtime, and when he's in the car in hope that when we are ready to take it away it won't be too traumatic.  He loves to splash in the bath, and has been caught splashing in the toilet more times than I want to admit.  He adores Bella and chases after her and terrorizes her.  She is quite protective on him and is very tolerant of the hair/tail pulling and any other terrible things he does to her.  He is wearing size 3 diapers, and mostly 9 month clothes.  He has eight teeth and is cutting his left top molar.  It's barely peeking through.  I'm not exactly sure how much he weighs or how long he is these days; he has a check-up on Friday and we'll find out then.

In January, Anderson was diagnosed with GERD.  He was put on Zantac, and when that wasn't controlling his reflux well enough he was put on Prevacid.  At birth, he failed the newborn hearing screen.  Ever since we have been going to the audiologist/ENT for testing.  He continually failed OAE(Otoacoustic emission) testing, so in February he had ABR(Auditory Brainstem Response) testing.  The ABR is more detailed and has a smaller margin of error.  He had normal results on the ABR, so we thought we weren't dealing with hearing loss.  He started getting ear infections.  He got one that didn't respond to Amoxicillin so we tried Omnicef.  When that didn't work he was given Rocephin injections which cleared up the infection, but not the fluid.  Then, when I was brushing his teeth one night I realized he had a severe frenulum(the connection between the top lip and gums) tie.  It suddenly clicked for me that he had had a shallow latch when breastfeeding the entire time, and that it was because of the frenulum tie.  At our next appointment, the pediatrician sent us to a different ENT for a consultation about the frenulum tie, the persistent fluid on his ears, and the failed OAE's.  Dr. Ostrower said that he most definitely needed tubes put in his ears to get rid of the fluid and that he would do the frenectomy at the same time.  On May 23 he had the surgery.  He wasn't in the OR long, and we had him home by the afternoon.  Breastfeeding immediately became easier for him, and his latch was much better.  He also started going longer in between nursings because he was getting fuller because of the proper latch.  After we got back from Texas we had a follow-up visit with the ENT and audiologist.  All of us (the doctors included) thought that he would pass the OAE testing with the tubes in place,  but he didn't.  Because of this, we were told he would need another ABR test done and that he would need to be sedated.  Last Thursday I took him for his sedated ABR.  It revealed that he has mild-moderate mixed (both sensorineural and conductive)  in his R ear and mild hearing loss in his L ear.  He will need a hearing aid for the R ear, and most likely will need speech therapy to ensure that his speech and language develop normally.  We have an appointment with his regular audiologist and Dr. Ostrower on the 27th and will know more about what we need to do from here.  As of right now we have no idea why he has the hearing loss.  We are heartbroken, but are determined to do all that we can to advocate for him and get him whatever he needs to excel in life. 

Anderson has been the perfect addition to our family, and we can not imagine life without him.  I am so very blessed to be his mommy.  Happy Birthday, my darling boy! I love you through and through.

Texas Trip

Uncle Zach and his boys

At the end of May we made the trip to Texas because both of my brother's were graduating (Zach from HS and Blayne from MS), and my s-i-l, Chinah, was getting married.  The boys were both wonderful on the flight to Texas even though we ended up having to circle in the air for an extended period of time because of storms on the ground.  It made me air sick, but Everett and Anders were quite content.  We went to both boys' graduations, and were so very proud of them.  We planned to make a trip to Little Rock in the middle of our trip, but Anderson came down with some sort of virus and was projectile vomiting and couldn't keep anything down.  He got to the point where he was limp in my arms, so instead of going to Little Rock we went to the ER at Children's Medical in Plano.  They gave him Zofran for the nausea, and he was able to hold down pedialyte and breastmilk after that so we went home.  After he got over the stomach sickness he became super congested and couldn't breathe well enough to eat.  We were suctioning him, using a humidifier, and doing everything else you can do for a 9 month old that can't breathe and we couldn't get his nose cleared out enough for him to be able to nurse.  A few days after our first trip to the ER we took him back because he wasn't drinking anything and hadn't had a wet diaper in almost 24 hours and we were worried about dehydration.  They deep suctioned him, made sure he took in some fluids, and sent us on our way again.  After that he finally started feeling better, thankfully.

The beautiful Miss Mariyah

While we were in town I was able to go to my niece, Mariyah's, dance recital.  She did such a good job and looked so cute.  Anders being sick cut in to a lot of our visiting time because we didn't want to spread his germs, but I think we got to see almost everyone at least once.

 

A lot of the family was able to come in for Chinah's wedding so we were able to visit with them if only for a little bit.  Everett was the ring bearer and he was absolutely adorable!  He did a great job even if he did melt down during the pictures beforehand.  He stood on the stage before the wedding started and held on to his little suspenders and talked to all of the guests telling them jokes. One of his lines was "Who knows what a wedding is?  Anyone?".  He was also saying "Man, it's HOT out here!!"  I thought about pulling him from the stage then decided that he was pretty good entertainment while we waited for everything to get started.  Chinah was absolutely stunning, and we are so very happy for her and Carl!  We had a great trip, and can't wait to go back again!

A long overdue update

So the last time I fully wrote a blog post was in September of last year.  I did find a partially written post from January that I published even though it wasn't finished.  Why has it been so long since I posted?  Because I simply don't have the time!!  So now for an update on Everett:

I'll start with cardiology stuff since it's always the most pressing.  We found a wonderful new cardiologist here-Dr. Skimming.  He is my favorite cardiologist that Everett has had which is surprising because we LOVED his cardiologists in Dallas.  Dr. Skimming has his own private practice which means no long waits like at the hospitals and fewer germs.  Our first appointment he spent a very long time with us discussing Everett's past, how he was currently doing, etc.  He has never made us feel rushed at an appointment and takes as much time as we need to discuss, ask questions, etc.  That is something found so rarely with doctors these days.  Everett's first appointment was in January.  I assume that the info from that appointment was something that I was going to put in that post, but alas I never got around to it.  Basically, everything looked good, but his cardiologist in Arkansas had him on the wrong dose of heart medication for his weight, and that at some point it might become necessary to close the fenestration left from his last open heart surgery.  Fast forward a few months and we began to see a noticeable change in Everett's energy level.  He became fatigued more easily, was sleeping more, and was needing lots and lots of breaks when riding his bike. We also noticed that he was having sudden oxygen level dips where his skin color would go gray and his lips would turn blue, and this was happening when he was at rest and not doing any kind of activity..  We have a home pulse ox and sometime these dips were as low as in the high 60's. Of course this was concerning, so when I called Dr. Skimming's office they said to just keep a close eye on him and that they assumed his fenestration was causing the problem.  Then he began getting really bad leg pain that was keeping him up at night and sometimes waking him up after he was asleep.  Not too long after the leg pain started he began periodically getting really bad headaches that led to projectile vomiting.  Of course both of these could be diagnosed as something totally unrelated to his heart condition like growing pains or migraines (it's possible they were/are growing pains and migraines), but when you're a parent of a child with serious heart defects you think that everything is related to heart stuff and it sends you in a panic when new stuff like this shows up.

Dr. Skimming got Everett in for another appointment even though he was due to see him for quite some time and decided that we should get some opinions from other cardiologists about closing his fenestration and possibly coiling collateral vessels(clicking on the word will take you to a link explaining what collateral vessels are).  The cardiology team at Joe DiMaggio Children's met and discussed his case and were pretty split on whether or not the catheterization to intervene was a good idea.  While the fenestration did serve the purpose of allowing his heart to have a way to decompress instead of having all of the blood flow through one set path it was causing lower oxygen levels overall, and it was causing the oxygen dips whenever the blood would shunt through it instead of all going to the lungs.  In some kids these fenestrations close on their own, but Everett's didn't and with as long as it had been since he had the Fontan procedure (he was 18 months) they didn't think it would ever close on its own.   Dr. Skimming thought that perhaps his headaches were migraines that were a product of low oxygen levels, and that perhaps closing the fenestration and raising his oxygen levels would eliminate the headaches.

We made an appointment to meet with Dr. Latson, the Director of Pediatric Interventional Cardiology at JDCH. Everett had a full work-up done and then we discussed whether or not we should move forward with the catheterization.  Dr. Latson wanted to know what his oxygen levels did with exercise so they hooked him up to the pulse ox and had him step onto a step and back down three times.  During this very light exercise his oxygen level dropped to 70%.  If you know Everett you know that he is MUCH more active than this pretty much 100% of the time.  Dr. Latson said that is was his opinion that we definitely needed to move forward with the catheterization.  We discussed all of the risks associated with what would be done in the cath lab, and it was horrible, scary stuff like death, stroke, his body rejecting the new blood flow after closing the fenestration leading to him going back into the lab to take it back out or even worse having an open heart to open it back up, etc.  But--closing the fenestration meant higher oxygen levels, more energy, possibly no more headache, and a higher quality of life.  We scheduled his catheterization for July 10th.  We were super anxious about everything that could go wrong, and of course the fact that he was now old enough to be scared.  We have been so blessed that he has not had to have any intervention since his Fontan procedure in March of '09, but dealing with a surgery and hospital stay with an older child was a whole different ball game.  My mom and brothers drove down for the surgery and came almost a week earlier, so that was a much needed distraction, and Everett had a blast with them.  It was their first time here, and we miss them so much since we're so far away from them.  We most definitely could not have made it through everything without them here.  Pa had to stay home and work, so we missed him. 

The day before the surgery we talked to Everett and told him he would be going to the hospital and that he would be staying the night, but that it would be a fun sleepover with just him and Mommy and Daddy and that he could have as much ice cream and popsicles as he wanted.  He was a bit anxious, but overall handled the news much better than we expected.  We made an appointment for him to meet with the Child Life Specialists before they prepped him for surgery so that they could talk to him about everything in a way that he would understand better.  That didn't exactly all pan out as we had hoped because they started working on pre-op stuff before the Child Life Specialist ever talked to him which made me want to go all mama bear on them.  Sonia from Angel's Pediatric Heart House here in South Florida had sent him a "shadow buddy" that has midline incision and a special heart like him, so child life was able to show him where the leads, etc would go on his buddy before they were put on him.  He LOVES his shadow buddy and he deemed him "Little Everett".  They gave him some "happy medicine" that made him loopy, sleepy, and super funny before time to go back to the lab.  We walked him back and stayed with him until they had him completely asleep with the gas.  They waited to place his IV, etc until he was completely asleep which was nice. We left him at 11:25 and grabbed some lunch.  We got an update that everything was going well at around 1:25 and he was out of surgery at 2:30 or so. Dr. Latson came and talked with us and said that everything had gone very well, and seemed a little surprised at how well his body had responded to the closing of the fenestration.  They coiled a couple of larger collateral vessels while they were in there as well.  He said that he had two leaking valves (we already knew about one), but that they weren't necessarily bad as they were allowing his heart to decompress in a similar way to the fenestration, but without lowering his oxygen levels.

Chance, Anderson, and I went to see him in the ICU once they got him all settled and of course he looked pitiful.  He was extubated, but they did have something down his throat to keep his airway open which I've never seen before.  We went and got mom and the boys from the waiting room when we got the go ahead to have all of us in the room.  We were told that he was still under some of the anesthesia and that they started IV sedation (Precedex) even though they usually don't for this procedure because they knew how active he was (after a catheterization you have to lay completely flat and completely still for 8 hours to keep from bleeding out).  We were told that as he came out of the anesthesia he might open his eyes, but that the sedation meds would keep him from totally waking up.  Boy did he prove them wrong!  Not even a half hour after we got to his room he woke completely up, sat up, and started kicking his legs tugging on his IV.  He said he wanted the IV out and that he wanted to sit up.  Mom and the boys left with Anderson hoping that he would be able to settle down with fewer people in the room.  His oxygen levels were higher than we've ever seen them without oxygen!  They stayed between 95-99% and even went up to 100% on occasion!!  Once he wasn't so groggy he was more manageable as far as having to lay down, etc, and was eager to cash in on his unlimited popsicle and ice cream promise.  He wolfed down one popsicle, and we made him wait a bit to have another.  Then he had two more, ice cream, and juice.  Chance held an ipad over his head for him to play games and he was awake for a good hour or so after eating the popsicles and ice cream.  Then he wanted me to snuggle with him in his bed and we all three fell asleep.  The rest of his hospital stay was pretty uneventful other than his requests to have his IV taken out and he wanted to go home.  The next day they did a repeat echo that showed everything was in place and looking good and an x-ray and we were able to take him home.  Once home he was super upset that he had to "take it easy" and that he wasn't allowed to take a bath.  He never took any pain meds until day three post op and he had one dose of Motrin.  He is one of the toughest people I know.  Everything went so much better than we had expected since we knew that there was so much that could go wrong.  I was super anxious about leaving Anderson as well (mom and the boys stayed at our house with him) since I've never left him much at all, especially overnight, but he did great as well!  I pumped and saved up plenty of milk and he took bottles like a champ even though in the past he has rejected them.  Everett went from half a tablet of baby aspirin to a whole tablet since he is still at a higher risk for stroke since the cath.  Other than that his meds stayed the same.  He had a check-up with Dr. Skimming a week post-op and everything looked great on his echocardiogram and he was released for normal activity which he was SUPER excited about!  We most definitely credit God for everything going as smoothly as it did with the surgery and with Anderson doing well without us (God is in the little details, too).

There were so very many people praying for us and loving on us and Everett.  Our amazing church family back in Arkansas, Journey Church, covered us in prayer and sent us a gorgeous bouquet of flowers.  First Baptist Church in Honey Grove sent us a postcard saying they were praying for Everett.  Our sweet friends the Graffs gave Everett a courage cape, and a bunch of activities to do while in the hospital.  They also brought us a beautiful, handmade quilt made by a member of their church and prayed over by the prayer warrior group there.  My fabulous friend Janille brought by a bag of frozen meatballs so we wouldn't have to cook and a cute little teddy bear for E.  My best friend Tricia and her family sent Everett the cutest cookie bouquet I have ever seen!  One cookie was decorated like a little doctor bear.  Our wonderful friends the Averitts sent Everett a few toys.  The lovely ladies who live next door gave Everett a bunch of matchbox cars and quiet activities to keep him occupied.  Tons of people called, texted, commented on Facebook, etc and I know that the other churches in HG were praying for our boy as well as other family and friends.  We are so blessed to have so many wonderful people in our lives.

Now on to the next medical update.  Since moving here we have switched to an pediatric ophthamologist here for Everett's eye strabismus.  At our first appointment he told us that Everett's strabismus does not fit into the "box" of most strabismus diagnoses(E never fits in the box.  He's usually a triangle in box of squares :) and to stop using the dilating drops and he increased his glasses prescription.  He said that Everett was borderline for needing surgery, but that he wanted to see if the stronger glasses prescription would push him over the line of not needing a surgery.  Everett picked out a new pair of yellow glasses. We went back a couple of weeks ago to see how he was doing, and they decided that he would need surgery, but that as a last ditch effort we could try bifocals and see if they would improve his strabismus enough to keep him from needing the surgery.  We, of course, wanted to try all non-surgical ventures first so we said yes to the bifocals.  Dr. Miller said that the muscle surgery that he will most likely need will be tricky because he has a v-pattern strabismus that isn't straightforward to operate on, and that it will possibly take a couple of surgeries to "get it right".  If the strabismus isn't corrected he could have problems learning to read, write, etc.  That being said he's already writing his name (and he writes it very neatly!), but that it will likely cause problems as he continues to learn to right and read.  The doctor discussed that the surgery would be outpatient and done at a local surgical center.  We had to remind him that Everett would only be put under anesthesia by a cardiac anesthesiologist to which he replied "I've never had problem getting surgical clearance for this type of surgery on a heart kid before".  We discussed with him the severity of Everett's heart conditions and assured him that he wouldn't be getting surgical clearance from his cardiologist and that he will not be operated on without a cardiac anesthesiologist.  Because of this Dr. Miller will not be able to perform the surgery as he does not have surgical privileges at the children's hospitals, but said that he would refer us to a really good surgeon and personal friend at Miami Children's if he, indeed, needs the surgery.  Everett's bifocal lenses came in quickly and he has been wearing them for a week now.  He doesn't complain about them, but when I ask him if he can see out of them he says no.  We are hoping and praying for this last ditch effort to work so that he can avoid surgery.

In other news, he starts Pre-K on August 20th.  He'll be going half days(9-12) at a local, private preschool, and he is SUPER excited!!  His cardiologist gave us the go ahead, but said that if he ends up getting sick a lot we will have to pull him out.

It is now 1:15 am, and I have been typing forever!!  If you have stuck with me and read my ramblings, bravo to you!  I'll write an update on Anderson sometime soon as he is growing and learning in leaps and bounds.