Stitches!

Ellie has managed to stay out of the hospital but has still had her fair share of doctors visits and therapy sessions.

A couple of weeks ago, Ellie fell down the stairs.  I was at the bottom of the stairs and watched her, in what seemed to be like slow motion, tumble down about 10 steps.  By the time I picked her up her head was already gushing with blood.  It was a scary sight.  I was in the middle of getting the boys ready for bed and Mike was away at a caucus meeting when I panicked, and called him home.  I thought I was going to have to take her to the ER to get stitches.  By the time he got home things had settled down and Ellie was cleaned up.  We taped some gauze to her cut and she seemed to be alright.  In the morning I pulled off the gauze to check the site and the blood still seemed fresh.  I guess I kept asking Mike if we should take her to the doctor when he finally suggested that we do just that.  He was the lucky one to take her, and sure enough, the cut was pretty deep.  They first tried to glue it back together but that didn't work so they had to rip the glue off and dig it out of the wound to make sure it was clean and then they stitched it back up with 4 stitches.  The PA did a really good, clean job.  5 days later we took the stitches out and she is still healing.  Ahhh, our first experience with stitches...of course it would happen to Ellie.  Funny that she still has not learned to go down the stairs backwards all of the time.  Silly girl.

A few days after her fall, Ellie had a routine cardiology appointment with an echocardiogram.  The echo turned out good and we are supposed to keep her on the oxygen at night until our next follow up appointment this summer.  It's good that she is doing well enough that we are able to space out her visits now.  Instead of 6-8 weeks she will now be seen in 4 months!  At that point she will have to be sedated for her echo and we will test her oxygen again by turning it off at night for a week.

We also visited with the dietitian who gave us suggestions as to what to do with Ellie's lack of eating.  She helped us turn Ellie's feeding schedule around so that she is getting most of her calories during the day instead of at night when we were using the pump to catch her up on her calories that she missed.  It makes a lot of sense. 

In order to get her calories in during the day,
Ellie has to use the feeding pump which she
carries around in a little backpack on her back.

Last week we had our much anticipated GI appointment.  We waited over two months to get in to the GI clinic at Primary Children's.  It was a long appointment with a lot of information.  They were right on board with the suggestions the dietitian gave us and the goal is to see if we can get her down to having all but 100 mL of her feeds orally in the next month.  The GI doctor wasn't too concerned that she is not eating solids at this point.  He even said that he wouldn't expect her to eat solids for a few more months and he was very encouraged by her with where she is at right now.  We are going to get that tube out of her, but I don't know if I will really be ready to part with it, not until she is done taking medicine which could still be a while.  It will just be nice to not have to use it to feed her.  They cauterized some of the granulation tissue that was forming around her button and she seems like it is less irritating to her although the granulation tissue is still there.  They also suggested that we change out the button to the next bigger size.  Ellie has gained about 10 pounds since they placed the initial one so it is time she gets a bigger one.  They wanted to test her for a C. diff infection which she may have picked up in the hospital.  I have to say that it was not fun trying to get a "clean" stool sample from her, but we did and I was told today that she was positive for the infection which explains a lot - smelly diapers, DECREASED APPETITE, and other things.

I took Ellie in last week to see her pediatrician because she has had an ongoing cold for what seems like the past 2 months.  Other than the runny nose and cough, she has seemed pretty typical and happy.  He ended up diagnosing her with an ear infection and putting her on an antibiotic.  So now we have to wait for her to finish her 10 days of antibiotics before we start the next routine of flagyl for 20 days to treat her C diff, AND THEN we can finally get her new button put in and hopefully get rid of the granulation tissue.

Among all these doctors appointments Ellie has still been seen by the speech therapist and the developmental specialist.  On top of these home visits 3-4 times a month, she will be starting extra speech therapy sessions weekly to help with her eating and speaking.  At this point Ellie says a handful of words including:  hot, duck, da-da, ball, pop, up, hat, and thanks.  In the meantime we are trying to incorporate some more signs for her to communicate with us.

One of Ellie's favorite things is going down (or up) the slide.
She loves to be outside probably because she's been
 couped up for the past 19 months!

18 months!

We enjoyed a nice 10 days with Ellie off her oxygen completely.  But at the conclusion of her cardiology appointment a couple weeks ago, it was determined by her echo that her right pulmonary pressures are slightly elevated again.  Not that much, but enough for her to need the oxygen at night.  We will try again in a few months.  It's not that much of a hassle and there is still hope that her pulmonary hypertension will completely resolve; it just might take a long time.  I'm still learning how to have patience, and will need to learn to have even more.
After Ellie's cardiology appointment was finished, we took a trip down to the general surgery clinic so someone could check her g-tube.  It had fallen out at the beginning of the year and we replaced it but it hasn't seemed to be the same since.  It was Ellie's lucky day because the nurse said that it looked great and the fit was good so nothing needed to be done.  It seems like it is leaking but that is because the hole is still trying to close itself up, and will continue to for another year or so.  The tube is also looser than it was before probably because some of the scar tissue fell off with the previous button.  All is good and we are glad.

We have had quite a few visits with therapists since the beginning of the year because they had decided to step up their frequency in coming to visit and evaluate Ellie.  A speech therapist, Gayleen,  and a developmental specialist, Angie, both come to our house twice a month.  Gayleen has been working more with her eating, but now that Ellie is showing a delay in speech, one visit will be geared towards getting her to speak, or at least communicate with us.  Ellie is pretty vocal but we have yet to hear her say "Dada" or "Mama", but she has said one word.  Guess what her first (and only) word was?  She says "atch" for "Thanks".  Everytime we hand her something she will say "atch". I think it speaks of her character, knowing that she has been blessed so much already, that she has a thankful heart.  So we have started sign language with Ellie and she has picked it up really quick!  We started out with "want" and "eat" and once she learned those it seems like that is all she is doing - leading us to the kitchen pantry or refrigerator to tell us that she wants something to eat.  If she could live off of yogurt and Gerber cheezies, she would.  So we taught her signs for yogurt (we just use the sign for "sweet") and "cracker" to let us know she wants her favorite snacks.  Hopefully with this new-found way of communicating with Ellie, she will eat more because she can tell us what she wants.  It's still a struggle, but she is slowly improving.  There are times when we give her something to eat and find an empty highchair tray and think, "Wow! She really liked that!", only to find it thrown on to the floor, or discover it in her chair when we take her out. 

With the therapy appointments becoming more regular, we were happy to slow down the home health nurse visits.  The nurse usually only comes about once a month now just to check her weight and give Ellie her "liquid gold medicine" aka: synagis shot.  The shot costs us about $3500 per dose so we are already close to meeting our deductible with that (sad that it's not already met with that high amount!).  This will probably be the last year that she qualifies for synagis.  I'm sure that it has helped her fight off RSV and with every cold and virus that she gets, she fights it off even better than she has before.  I can't believe that the slightest cold would send her to the hospital last year.  A few months ago, we would have been able to deal with it at home with extra oxygen and some doses of diuretics.  And now, with this last virus, she has been able to fight it off all on her own!

Because of Ellie's g-tube and her eating issues, I have always wondered if she needed to be followed by the GI (gastrointestinal) doctors. The surgeon who placed her g-tube moved to a different location and since then I felt like we were just dropped. I wasn't sure what the GI people would do for Ellie, but I guess they are the ones to take over the care of the tube and hopefully we can get some advice on her nutrition. Unfortunately, they are really booked out and we won't be seen until the end of March. Ellie is still on a high calorie formula and I am just waiting for the day that she refuses it. I've never known an 18-month old still on formula. Maybe that is why she is only drinking half of what she needs.

It's hard to believe that Ellie will be 18 months this month.  She seems too small to be able to start going to nursery at church (although she will probably never go to nursery because of her susceptiblity of catching something that will make her sick).  We have finally been able to take down our makeshift gate because Ellie finally got the knack of going down the stairs the proper way.  She loves following Rhome and Rhett all over the house to check up on them and see what they are doing. 

It's been a while since I've updated the blog.  Life has been busy.  Thankfully because that's just life, not because of things with Ellie.

Ellie has been completely off any oxygen (other than the air we breathe) for 3 days now.  We got the "okay" at her last cardiology appointment to take her off the oxygen at night 7-10 days before her next cardiology appointment which will be next Monday.  It's nice to have the house quiet again, without the constant sound of the oxygen concentrator running.  I guess it did drown out a lot of noise though.  And no 50-foot tubing to trip over.  So far Ellie has done okay, although I still notice some grunting here and there.  I think in a few days we will be able to tell whether or not she is tolerating it okay.  This trial period also comes at a difficult time as she is just getting over a bout with roseola.  Last week she had the typical symptoms - 3 days of a high fever, followed by a rash on her head, front, and back.  Unfortunately, any sickness seems to bring Ellie back to square one when it comes to her feeding.  She went from taking most of her feeds, if not all of them, by mouth to nothing.  NIL.  It's so frustrating.  I oftentimes want so badly to have her g-tube removed and hope that everything would be normal.  But I have to remind myself what a blessing it is to have that thing.  Without it she would be withering away, and probably would have been in the hospital numerous times for dehydration (BTW, we've been hospital-free for over 5 months now).  But now, even though she is sick, we can feed her as much as she needs and she doesn't have to do anything and she doesn't seem to mind it.  Ellie is still on viagra three times a day and a daily dose of a prophylactic antiobiotic so it's also been nice to zip her medications straight in to her tummy without her even having a taste which I'm sure would lead to even more oral aversions.

Ellie continues to work with a speech therapist from Kids on the Move who had been dealing with her eating habits, or lack of them.  Because she is now 17 months and still not speaking, she will be coming more often so that she can work on her speech also.  She also has a developmental specialist who will be coming more frequently too.  When she comes we basically just play with her.  At her last evaluation she showed mild delays in thinking and learning, receptive language/communication, and fine motor skills.  She is moderately delayed in expressive language/communication and self help and has no significant delays in gross motor and social-emotional skills.  I am amazed at how many people who receive services from Kids on the Move.  They are wonderful people.

Ellie is so much more aware of everything around her and is definitely attached to me, and Mike if I'm not around.  A couple of weeks we had our first experience with her g-tube falling out because the water had leaked out of the balloon.  Luckily, one of our neighbors who is a NP was here to help us out because I was totally unprepared for something like that to happen.  Ellie cried like she usually does when she is being inspected by someone she doesn't know.  It's never a good sign to her, even though it can be something really simple.  It makes me grateful that we have stayed out of the hospital for so long and that the majority of her hospital stays were while she was such a young baby.  If she were to go through that now, she would never let me leave her side.

Ellie seems like a normal baby, just a little on the small side and she doesn't eat, at least not much.  She's such a great sleeper; maybe it is due to the fact that her tummy is always full with the feeding pump going.  Once she learned to walk right after Thanksgiving, she has not turned back.  She is always close behind me, like my little shadow.   She loves to pull open whatever drawers she can and pull everything out and thinks she is so brave that she won't go down the stairs backwards and has ended up tumbling a few times.  We're working on it.  But I think it might have to do with her stomach tube getting in the way and feeling uncomfortable when she tries to go down backwards.  She loves music and likes to sway back and forth and recently has just started to show some dance moves!  Ellie has already become a pro with the ipad and it's one of her favorite toys - that's one of the reasons why we got it - because some apps can help her out developmentally.  She is always so quick to smile and is so loving and cuddly.

I was at a friend's baby shower yesterday and met a lady who had a friend who's daughter has heterotaxy.  It was so weird.  I started describing some of the symptoms Ellie had and just after mentioning her heart defect and malrotation she asked me if she had heterotaxy.  I didn't think anyone other than the doctors knew what that was.  I was so stunned that she figured it out especially because it is such an uncommon syndrome that it only affects 4 in a million.  Anyway, I started reading her friend's journal online and it is so interesting to learn about what they have experienced.  So many similar experiences brought a flood of emotions back to me.  It was almost hard to read it.  I had the same feelings when I was trying to create Ellie's first year memory book and I had to stop because it was hard to relive everything.  Her first year was a tough one.  Our little girl has definitely endured a lot.  But we are so happy she is doing so well and hope and pray that she continues to do so.

Freedom!!!

It has been exactly a year since Ellie got sick and was life-flighted to Primary Children's Hospital.  Wow, what a year.  It's been a long one.  It's been a year since we were introduced to Ellie's cardiologist, Dr. Pinto, who we met with again today.  One year since we learned that Ellie's heart condition was much more complicated than we initially thought and it also seemed like we kept getting bad news to no end.

Today was a different story.  We went to see Dr. Pinto for a regular echocardiogram and check up.  Ellie has been tolerating the echos better the past couple of times and today her pulmonary pressures were slightly elevated, probably due to her recent cold that she is trying to get over.  It was still good news though!  Dr. Pinto allowed us to take Ellie off of her oxygen during the day and she will only have to wear it when she sleeps at night.  Unless you have been to our house and tripped over the 50 foot-long cord, tried to carry Ellie with a tail a mile long along with a tank of oxygen that feels like it weighs 20 pounds, found Ellie awake in her crib with the cord wrapped around her neck, seen and heard the frustration on Ellie's face when the cord gets hung up on something and pulls on her face, you might not understand how big of a deal this is.  Ellie has been on constant oxygen since the day she was born.  We have not experienced this kind of freedom with her!  Now it will be tough to track her down as we just can't follow the end of the cord around the house.  With the winter months coming, hopefully she can stay healthy enough to keep the oxygen off.  With the nasal cannula gone, Ellie's face looks naked and she is like a different person.  It's like a person who normally wears glasses then gets contacts.

Ellie has become really active once she finally learned to crawl at about 12 months.  Now she is experiencing the stairs and standing on her own.  With all of this activity comes the bumps and bruises.  Currently Ellie has a black eye from falling and hitting the bathroom stool and yesterday she fell down the stairs.  Eating is still a struggle some days but Ellie continues to grow.

Ellie-bun is ONE!

Where has the year gone?  Oh yeah, 127 days in the hospital and 365 days of constant worrying if Ellie is going to be alright.  Don't get me wrong, there have been a lot of great days and happy moments and we count our blessings for this sweet spirit that has been sent to live with us and bless our lives.  To some it seems like it has been a quick year, to us it has been the longest year ever but I still can't believe that Ellie is already one.  She is still quite small weighing 17.5 pounds (5th percentile but at least she is now on the chart!) and about 28 inches (25th percentile).

We celebrated Ellie's birthday by going to a cardiology appointment where she had another chest xray and an echo.  Usually if she is not sedated for the echo she is quite fussy and it is almost impossible to get a good reading of anything.  She did amazingly well yesterday and was pretty still and preoccupied watching Toy Story while laying on me for her echo.  The results showed that her heart is doing well and her pulmonary hypertension is normal!!!  That was the best news of the day.  We are going to start weaning her off of her diuretics again and hopefully this time it is for good.  After a couple of weeks she should be completely off of the bumex.  Then we will go in for another check up in a month when we hope to start weaning the oxygen.  It will take a lot of monitoring as we wean her off of that but it will be a marvelous day when we don't have to take oxygen with Ellie wherever she goes.  Things are really looking up. 

I think having the NG tube removed was one of the best decisions because since it has been gone Ellie has been able to eat and drink more.  Yesterday she ate almost 3/4 of her full amount of feedings.  Everyday she seems to slowly increase her intake little by little.  Since having her G-tube placed she has not rolled over but who can blame her for avoiding rolling on to a big button in the middle of her stomach.  She does well to avoid it and it doesn't seem to bother her or get in her way too much.  She is energetic and busy and loves to stand and bop to music.  She has been crawling since the beginning of August but has yet to make it a long distance.  Ellie is constantly smacking her lips, giving kisses, and flashing cheezy smiles which makes us smile right back.

Happy Birthday to our sweet Bun Bun!  We love you!

Home Again

Ellie did extremely well with her surgery last Wednesday.  The surgeon had predicted that Ellie would be in the hospital for about a week but it would all depend on how fast she started eating and digesting things again. 

Friday was a big day as Ellie finally had a bowel movement which meant that her digestive system was up and running again.  I had never been so anxious for a baby to poop.  They were able to start feeding her with pedialyte at 10mL every hour which is barely anything.  Mike and I attended a special class to learn how to take care of the G-tube.  We always come away from the hospital with so much more information than we anticipate learning.  After giving her a few feedings and medications through the tube, we learned that it is not much different than her NG tube which we are already pros at.
 
Before her surgery, Ellie was only taking 20-60mL by bottle and the rest had to be tube fed.  On Saturday they started feeding her with formula, 73mL  every 3 hours.  At first she pursed her lips and wasn't going to drink anything from the bottle until we switched it to her regular bottle from home and then she chugged the whole feeding which was unheard of prior to her surgery.  After 2 feedings they increased her volume to 110mL and she took all of one and most of the other.  Then after 2 more feedings they increased her volume to 145mL and again, she took all of one and most of the others.  Having her NG tube out has made all the difference so far and we have started to wonder if we even needed to go so far as to having the G-tube placed because she has been doing so well. We know that this could just be Ellie having a good day, and there might be days when she doesn't want to eat anything and we will be thankful for that G-tube.  We hope that she can quickly work up to eating all her calories by herself so we can get rid of more tubes.

Being at the hospital will probably never be a happy experience for Ellie, although we hope it will.  She is very leery of ANYONE who comes in to her room, just looks at her, or comes close to her. Either Mike, mom, or I were with her at all times to comfort and assure her that everything was alright.  We are really starting to rotate through the hospital staff and often get a nurse or tech who we've had before.  Today we had lunch with Dr. Downey, Ellie's surgeon.  Makes me start to feel like the hospital staff is becoming family. :)

We brought Ellie home this afternoon after 4 days in the hospital and she is sleeping soundly in her bedroom.  The surgeons were really impressed by how well she handled both procedures - better than a normal, healthy baby without all the complications and strange anatomy that Ellie has. 

Malrotation surgery day

We got the call yesterday evening that Ellie's malrotation corrective surgery would be scheduled for today.  It was kind of a relief to know that it was finally going to happen.  Mike was able to take the day off of work and skip going to court for a patient to be there with Ellie and me.

Things at the hospital are becoming too familiar and routine for us.  Here we go again with check in at same day surgery, vitals and pre-op, meeting with the surgeon and anesthesiologist and then handing our precious little girl over so they could take her to the operating room.  Ellie put her head on my shoulder and snuggled for a few seconds before the anesthsiologist took her away.  We didn't hear any crying as we turned our backs and walked in separate directions.  I guess it was a different case when they got her to the room.  It was still difficult because we never know what we are in for or how Ellie will do with the recovery process, especially knowing what she went through after her heart surgery.

Mike and I waited in the waiting room.  She was scheduled to be in the OR for 3 hours but I think it was less than 2 hours when we saw Dr. Downey come around the corner to report to us.  Everything went well and actually, better than expected.  The G-tube was placed, they manipulated her bowels into the correct area, and inverted her appendix into her colon so that it would die on it's own.  Interesting.  At first we were told that Ellie would have to go to the PICU for at least a day because she has had such a complex history but they decided that she was doing well enough to recover on the regular floor.  We were told to expect her to be a little fussy and uncomfortable for a few days until the incision site heals a bit but with a little tylenol and morphine Ellie has been handling things pretty well. 

We will wait a few days until her gut "wakes up" and she can start digesting things again.  Then it is just a matter of her tolerating her feedings.  The G-tube is different and more complicated than the NG tube.  I'm not sure I like it much at this point but at least it will get her fed and I'm sure we will see more positive things about it once we get used to it.  We were told that Ellie would be here for about a week.  Fingers are crossed that it won't be any longer.