Gracie 8 months old

Happy 8 month Birthday to my Gracie Girl!! These pictures aren't the greatest but they were all I could get when I was taking my little photo shoot! A picture of Gracie's famous little tongue sticking out, telling us that she is happy and in a playful mood. What a sweetie girl.

Treasures in Gracie's Room

Shelf I bought at Swiss Days for all of Gracie's treasures.

Booties crocheted by my Grandma McBride and the famous silver cup


The blessing dress she never wore.

A fun lamp I found at Finders Keepers

I thought it would be fun to post a few things from Gracie's room. I had searched and searched for a shelf to put all of the wonderful things people had given our Gracie Girl. And I found it a few months ago at Swiss Days. I saw it and knew it would be PERFECT to showcase all of her fun things. There are only two things that are on that shelf that were purchased by me, everything else was a gift. My camera couldn't fit the fun frames and things that are on top of the shelf.

The booties were hand made from my 93year old Grandma McBride!! She made me some of these for Callie and I was looking forward to getting another pair of them for Gracie. And as tradition holds, she sent Gracie her 'silver cup' with her name and date of birth engraved on it. I love having these for all of my children, I think it is such a keepsake for them to have for years and years.

Gracie is doing pretty well. She is still slow with her motor skills though. She is grabbing her foot now which is new. She likes to stick her tongue out and attempt to blow bubbles and smile. We know she is in a good mood when she does this, it is pretty cute. I love that she is happy enough now to play and have some fun with us without crying. She is coughing, gagging and wretching a lot in the night now. She usually is on continuous feeds at night for 8 hours but lately I have been turning them off after 4 hours (then giving her a big dose when she wakes up) because she is not tolerating them. I don't know if she is getting more secretions in her throat and nose at night due to the colder weather and change of seasons or what. During the day, her vomiting has gotten a little better but she is still obviously refluxing. I see her start to cry, then she starts to gag, choke, turn blue and wretch. Throwing up follows depending on whether or not she has a full stomach. My poor little sweetheart. I know that it is just so painful for her. She is on all the reflux meds she can handle and she STILL refluxes. I hope that her second surgery helps her reflux in some way.

The big obstacle that we (and our in home therapy from Kids on the Move) have had with advancing Gracie's motor skills are her feeding issues. She is still feeding for a full hour through her NG tube, every other hour. So this means that we can't jostle her around when she is eating or directly afterwards which leaves us a small window of time to work with her. And half the time, those 'slivers' of time are either inconvenient or she is sleeping. So I think until we can get her feeds farther apart, we are going to be limited in helping her roll around, sit up, etc.

We have settled into a new kind of normal and it isn't so bad. We have our Gracie at home with us which is wonderful. She is now happy for most of the time which I don't think I have ever really had since she has been home. She likes to be held more and played with more. I always say that HLHS is a mean, mean trick. Here is this precious baby with only a scar and feeding tube to show that things inside of her are very, very wrong. Other than what I just mentioned, she feels like our normal, healthy baby. Which is what you start to believe and then you're brought back to reality when you go to a doctor's appointment or remember that you are only a few weeks away from another major heart surgery.

My kids are so attached to her now and are in love with her more than ever. I know that this next surgery is going to be a lot harder than the first one because we know her now. She is our little sweetheart more than ever before. We will just continue hoping that things will turn out for the best. Thanks again for every one's care and concern for our girl, we appreciate it!!

p.s. To all the heart moms out there who have had their babies on continuous feeds at night, I ask this question: Do you ever move them out of your room? Gracie is still in our room at night and I don't think she is sleeping as well in her port-a-crib as she does in the real crib in her room. Also, we are certainly not sleeping very well because she coughs all night long. However, I have just been too nervous to have her in the other room because I feel like she could choke and I wouldn't be there to help her! With a baby monitor, you just can't really tell sometimes how they are doing. Also, she goes to sleep around 8:00p.m. and inevitably my kids go in my room/bathroom and disturb her sleep. Just wondering your thoughts.

In Like a Chicky, Out Like a Lamb

I borrowed two different costumes from my sister and sister in law for Gracie to wear for Halloween. So on Monday, we had a Halloween party at my dad's house and she was a chicky (an unhappy one I might add), then on Halloween she was a lamb. It was fun to have Gracie in our home this year for Halloween. Gracie hung out at home while the kids went trick or treating.



Halloween was the first day that we had our old Gracie Girl back. She was happy and smiling the whole day and has been that way ever since!! So we have had a happy baby for 5 days now!! It is SO nice. I don't know if she just finally feels better, or if the increased reflux meds are working or if she likes the new formula we have been giving her. Either way, I'll take it!



We went to see Dr. Su in cardiology yesterday for her post-cath follow up visit. Her sats are in the low 80's on room air and Dr. Su seemed really pleased with that. It is obvious that the stent is working because her sats and her color has improved. Because of that, Dr. Su gave us the go ahead to take her off of oxygen at night--YAY--she was pushing it out of her nose throughout the night anyway.



Last Wednesday, GI told me to try the change in her reflux meds first, THEN change her formula so that we could see which change was making the difference with her. Well, I changed (increased) her reflux meds and it didn't seem to make any difference. So a few days later, I changed her formula from Pregestimil to EleCare. I don't know if it is coincidence or what but she seems to be tolerating the EleCare MUCH better. In fact, she has not thrown up in 2 days!! Also, for all you heart moms out there, the vanilla flavored EleCare formula is WONDERFUL!! It smells like vanilla cheesecake or cake batter. GI told me that EleCare if even more broken down and easier to digest than Pregestimil (I'm not sure why they don't offer it from the start!). Gracie has taken some of the vanilla flavored in a syringe better than she ever took her vanilla or strawberry Pediasure. So hopefully this is the beginning of some happy days for Gracie!


I asked Dr. Su about what we would do in January if her second heart cath came back and her pressures had not come down. He said that no one would want to do a Glenn surgery on a baby with pressures that high. But that doesn't mean they wouldn't do the surgery, they would just have to discuss the pros and cons of surgery vs. transplant. If they were to decide that a transplant would be the best option, she would not automatically be put on the list. They have to draw a ton of blood and run all sorts of tests on it to see if she is even a candidate for a transplant. Then even IF she were to be a candidate and then be lucky enough to get a heart, the heart would last about 10 years before she would need another transplant. With a transplant, you have to take medication every day for the rest of your life. Also, the oldest patient they have at Primary's with HLHS (who had the 3 surgeries) is 18 years old and has not had to have a transplant yet.

We went from Primary Children's straight to our pediatrician's office for her RSV and Flu shots. She did well and it was fairly uneventful. Gracie had a busy day, but she was pretty happy so that made all the difference.

For now, we will just enjoy the fact that she is doing well and know that Gracie is in the Lord's hands and that he has a plan for her. Thanks for all of your prayers!!

p.s. Gracie took about 15 spoonfuls of BANANA baby food the other day. It was great until she coughed and threw up 3 times in a row! We will keep trying but she is really improving in her feedings.

p.s.s. Did you notice Gracie's new doctor? Dr. Taylor Gledhill, cute!!

GI Clinic

The GI clinic had a cancellation on Wednesday so I took Gracie in for a consultation. I mostly talked to the nurse and she asked all about Gracie and her history. The nurse left and went to talk to Dr. Jackson and they both came back in. They agreed that her relux medication doses were too low and almost tripled some of them. They want me to try that first and see how she does. If she does not improve then we will try different formulas. (By the way, Gracie cried the ENTIRE 2 hours that I was in the clinic--good times!) So now she is on the following doses of reflux meds:

Zantac .7ml 3 times a day
Reglan .6m. 4 times a day
Prevacid 3.1 ml once a day

So far, it has not made a difference. About 3 weeks ago, I started having to give Gracie half of her food for the day in formula because I was running out of my milk. For the last 1 1/2 weeks or so we have had to give her about 80% of her day's milk in formula. I think this may be the problem. I don't think she is agreeing with all that Pregestimil. I have about 4 bags of milk left in my freezer and I am experimenting today with all fortified freezer milk to see if it makes any difference. I am a little sad that I am not providing her enough milk anymore, but I figure pumping for 7 1/2 months is pretty good.

Gracie is still quite fussy. She has a fairly good day once and a while but on the whole, she is a bit of a crabby patty. We all say that we would be too if we had her life!! So we make sure to enjoy the good times and the bad times with her and to try and just be grateful that we are all home as a family together.

Since my last post we have discovered a few new things that Gracie likes. When she is fussy, I can just dance around with her to ABBA's greatest hits--yep, that's right, ABBA (I love them and I loved the movie Mama Mia!!) and she quiets right down and sometimes falls asleep.....pretty funny!! When you give her her lip gloss she absolutely goes crazy like she is a drug addict trying to eat it. So my friend had the idea to twist it all the way down and let her just put it in her mouth and lick it.....another one of her favorite past times. Also lately, she has acted like she is thirsty so we give her water through a syringe and she drinks it.....it is pretty cute. However, if you try to put some formula or PediaSure in there, she does not like it, so I am trying to think of what I can do to get something with calories in there that she likes.

I will post some Halloween pictures of her soon!! (Gracie's FIRST Halloween!!)

Happy Halloween everybody!!

New Surgery Goal

I talked to Dr. Su, Gracie's cardiologist, today to confirm that we are NOT going to do her surgery on November 5th. The goal right now is to push her out until January or even February if her saturation levels stay between 75-85. They are hoping that this extra time will allow the pressures in her heart to go down. Right now they are double than where they should be. I took her sat levels today and they were in the low 80's on room air which is good. We won't know if her pressures have changed until they do ANOTHER heart cath in probably January. If her pressures are still high at that point then it is not good news and they will have to discuss as a cardiology/surgery team what they would like to do for her.

She has been approved for the Synagis (RSV vaccination) shot and will start those at the beginning of November. She will get this shot once a month. Any guess as to what it costs? $1200-$1600 PER SHOT!!!!! Isn't that incredible? They have also advised our little family to get the flu shot. So I will be scheduling that in the next couple of days.

So, we will hopefully stay as healthy as possible for the next couple of months and enjoy the holiday season with our sweet girl. Thanks again to everybody for all of your concern and support!!

Happy 7 Month Birthday Gracie Girl

I took this photo of my GG today on her 7 month birthday. I was so happy to catch a smile. We have felt Gracie's personality has been gone since she has been home from her cath. She whimpered for about 4 days straight. Yesterday she cracked out a couple smiles, and today a few more. We are slowly getting her back. Cath's are pretty brutal. It is disappointing to think she will have another one before her surgery. I haven't heard the final word from cardiology but I am almost positive that her surgery has been officially canceled. They called today and scheduled a follow up visit for November 3rd, so we will most likely not be headed for surgery two days later like originally planned. I hope to talk to cardiology tomorrow and get a better outlook as to what the plan is for her. For now, we will just enjoy her being in our home a little bit longer and HOPEFULLY we can have the holidays to ourselves at home and have her surgery after Christmas sometime.

Happy Birthday to my sweet baby girl!

Home, But Still Working The Kinks Out

We were able to check out of the hospital this morning around 10:45a.m. Gracie seemed to have a little bit of a rough night because she threw up 4 times. They decided to turn off her food because of it around 6:00a.m. This short experience in the hospital proved to be a little more frustrating than when we were there for 2 1/2 months. I told the nurse that during our last stay, in a way it was like she was kind of their baby and that this time around, she was MY baby. I know her now, know what she likes, how much food she can tolerate, when she should get her meds etc. So it was hard to not be the one in charge of her care. To sit back when you know something should be being done for your baby is very challenging. It took them until 10:00 p.m. last night to get everything organized to finally start her on food even though we had the go ahead at 6:30 p.m.. By 10:00p.m. it had been 16 1/2 hours since she had last had food in her stomach. They gave her sugar water through an IV but no milk. Don't get me wrong, we think Primary Children's is wonderful. It was just really difficult to sit back while certain things like getting her food and meds were delayed, and delayed again.

Since we've been home, Gracie seems to be hurting. Some of Gracie's side effects are:

1. Raspy cough and cry. I'm sure my poor baby has a sore throat from that breathing tube being down her throat for about 5 hours.

2. A sore where they took the IV out and two other sites where they obviously attempted an IV and failed.

3. A big bruise on the outside of her right leg. They are not sure how she got it. They think it may have been from the restraints they put on her while in her cath.

4. Four pretty good scratch marks across the back of her head. We think she scratched her head on the cords coming off the blood pressure cuff that was on her upper arm.

5. And of course the sore in her groin area where they went in with the catheter.

It breaks my heart to see her in pain. Gracie cries or whimpers every moment when she is awake. Hopefully we will have our little smiley girl back in a few days. I am grateful for modern medicine and the abilities of the wonderful doctors who have the knowledge to attempt to fix what is wrong with our Gracie Girl. With the reality of her condition on the forefront of our minds the last couple of days, I could not help but think that she should not be alive. For how severe her condition is and what she has been through, she truly should not be here. We are grateful for every minute Gracie is in our life. We appreciate all of you who are praying for her. Your prayers are working!

Echo Looks OK

We talked to the cardiologist working today here in the PICU and based on her Echo this afternoon, he said there is a little bit of tricuspid valve leakage (which he said is pretty normal) but no stenosis or blockage. So from what we can tell, that is good news and we won't have to worry about any repair of that valve or a heart transplant. Whew!!

We're BAAAAAAAACK

Here we are, back in our favorite luxury hotel.......the PICU. Dr. Cowley said that putting the stent in was a challenge. He had a hard time getting the stent into the right spot but he did it and it seems to be working well. He admitted Gracie to the PICU and wants her to be observed overnight.

We came in to see her and she was pretty feisty. She was kicking her legs all around and turning her head side to side. She was REALLY bugged that the breathing tube was still in. They sedated her and did an extensive echo of her heart. Dr. Cowley is in another procedure but he will look at it when he gets out and come talk to us about what they find.

He mentioned that they think the reason for her high pressures could be that the tricuspid valve might not be working properly. He said "Can we fix it? I don't know. Will she need a heart transplant? Maybe." We will have to wait and see what they find out from the echo.

Once Gracie woke up from being drugged, they extubated her and gave her to me to hold. (I am holding her right now in my arms, she is sleeping and looks very peaceful.)

It has been nice to see so many familiar faces here in the PICU. It makes being here not as scary as the first time. This is after all, our home away from home. So for now, we are just hanging out. Thank you so much for all of your prayers!!!!

Troubles with Gracie's Heart

Our Gracie Girl and her daddy, pre-op, waiting for her cath

We came in this morning for Gracie's heart catheterization at 8:00. They took all her vitals and we changed her in her hospital jammies. She pulled her feeding tube out on our drive up so to calm her down before the procedure they gave her some Versed (through a shot up her nose)and Calo-something under her tongue. She was a little glassy eyed when we passed her off. This made it a lot easier than passing her off crying or whining for me.

The cardiologist Dr. Cowley, paged us at about 11:30 and told us that her pressures were too high. The connection of her SANO tube from her right ventricle is tight and through the x-rays it was showing little blood passing through it, almost looking like it was kinked. He called Dr. Su in and they discussed the options and thought it would be best to put a stent in to open it up. They are in there right now doing that and said it would take about an hour. We paged Dr. Su and met him in person to see if he could explain it better to us.

He said the pressures in her right atrium are around 16. A normal babies pressures are between 4-5 and for a Hypoplast they want them around 10-12. They are hoping by putting the stent in, it will improve her sats and buy them more time to see if her heart will get better. If her sats go up after this procedure, they talked about maybe pushing her surgery possibly another 3 months. If not, they would be forced to choose between two evils. They would most likely have to go in and do her Glenn as scheduled in a few weeks, but she would have a complicated recovery and possible long term complications.

I really thought our Gracie Girl was going to give us a break this time and let at least ONE thing be easy but I was mistaken. Dr. Su said they are all aware that Gracie is NOT an easy case and is really high maintenance. Tom told him that she was a lot like me that way, very funny!!

So we are waiting for her procedure to be done. I am not sure how many people are even reading her blog still but I plan to continue to update whoever is interested in her little story! Thanks so much for all of your support, I will post later!

p.s. I tried to load a picture of her and it is not working in the hospital, I will add it to this or a future post later.

p.s.s. I forgot to mention that they said they only do about 6-7 stents in a year during heart cath's. So not very common!

Surgery Date

Well, we have a date. Gracie's Glenn surgery will be Wednesday, November 5th. She will have her heart cath on Tuesday October 14th. We would like to have a special fast in her behalf on
Fast Sunday, November 2nd. Thanks to everybody for all of their love, care and concern for our Gracie Girl!

p.s. I took Gracie in to her pediatrician yesterday for 4 immunizations and a check up. He is really concerned about her reflux. He thinks she may need to have the G-tube/Nissin (sp?) surgery. They have contacted GI up at Primarys and we are waiting to hear back. So we may have a little more on our plate than just dealing with her Glenn.....we will see.

Back on Oxygen, Surgery to Come

Yesterday, we took Gracie in to her cardiologist, Dr. Su, for a check up. She weighed 12 lbs. 8 oz. and her sat's were around 75. We talked with Dr. Su about all of our concerns about feedings etc. He noticed that her fingers and toes looked a bit bluer than last time and said that it was time to go back on some oxygen. He ordered her to go on a 1/4 liter at night and periodically during the day if we were just hanging out. If we go somewhere then she does not have to be on it. Kind of a bummer but we knew that she would have to go back on before her next surgery.

We discussed surgery and decided that she should go in the first part of November. That is only in about 5 weeks!! She has to have a heart catheterization before surgery, that will be in 2-3 weeks.

For those of you wondering what a 'cath' is, here you go:

1. The doctor inserts a small flexible tube, called a catheter, through the femoral vein and/or artery in your child's groin. The catheter is then passed into various vessels and chambers of the heart.

2. As the catheter goes through different areas, the doctor obtains pressure measurements and takes very small blood samples to see how much oxygen is in the blood.

3. The doctor injects a dye that can be seen with x-ray through the catheter. Using very low-dose radiation, the doctor takes pictures of your child's heart. These pictures, together with the pressure and oxygen level measurements, will tell the doctor more about the defects of your child's heart and how they are affecting the child.

Gracie will be watched for about 6 hours after the cath to make sure everything is ok with her. If she is seen in the afternoon, she may have to stay overnight for observation.

Dr. Su said that this next surgery is supposed to be a lot better than the first. We are praying for that. I'm hoping that all the time Gracie spent in the 'pen' the first time will count for something the second time around!! Maybe they'll let her out early for good behavior!!

p.s. I wanted to add that I just tried to feed Gracie her rice cereal mixed with apple juice and she took about 15 spoonfuls!!! She did not cry and actually opened her mouth for the next bite!! It was by far the best she has ever done. Every one's prayers must be working AGAIN, thank you!!

Video of Gracie trying to eat some rice cereal

I thought I would post a video of me attempting to feed Gracie some rice cereal (with some encouragement from Callie). I originally mixed her cereal with her Pregestimil formula and she did NOT like it. The Kids On The Move speech therapist told me that I could try mixing it with apple juice so that's what I did. She liked it a little more but as you can see, she still does not love it. She usually starts to whimper and cry when she figures out it is 'eating time'. Sometimes she will gag and throw up. It is pretty frustrating because she is really not improving at all. I don't know what that means for her exactly. I wonder how long they will let her go with an NG tube before ordering G-tube surgery. I know my cardiologist doesn't want her to have a G-tube so we'll have to see.

Gracie was 6 months old on 9-20-08. Here is my last ditch attempt at night to get a quick photo of her before the day was over. I can't believe it's been 6 months. It feels like 6 years. We love having her in our home. The kids are having so much fun with her. She is getting more and more playful and really lights up around them.

I wanted to remember a few of Gracie's traits at 6 months:

--finally can hold head up pretty good

--LOVES her swing

--likes to watch TV, especially Dora the Explorer

--likes to chew on her toy rings

--still likes to be put down on her back

--sleeps about 12 hours at night

--latest home sat's have been in the low 80's

--have not had to be re-admitted to PCMC, 3 1/2 months now!!!!!! (knock on wood)

--likes to ride in the car

--likes walks and to be outside

--LOVES her brothers, and sister too on occasion

--starting to look a little more like her dad

--whimpers, laughs, coughs and grunts for attention

--smiles and turns her head in shyness

--throws up 1-3 times a day and is taking 60ml every other hour and 25 ml through the night

--likes being babysat by her grandparents

--cries hysterically when she is tired and wants to be laid down

--tries rice cereal about once a day for 10-15 minutes

--likes her bath and splashing

--is just now starting to kind of roll onto her side

Half way to one year! We love our Gracie Girl!

Surprise in Gracie's Crib

I went in to check on Gracie and found a visitor!! Stinker Taylor had climbed in Gracie's crib with her. She was pretty happy and Taylor was playing with her and making her laugh.

About the next photo.......it seems like every time I download a new set of pictures, I have a few surprise pictures on there taken from, you guessed it, Taylor. This time, there was actually a cute one in the mix of consecutive photos of Gracie in her bouncy chair. I thought I would post it because she is smiling, something she does all the time now. I must say, she has turned into quite the Mama's Girl. Anytime someone holds her she just looks at me with eyes that say 'Save Me!!' It is pretty cute, but not to fun for the people holding her. Gracie is doing really well right now and it's getting harder and harder to imagine going back into the hospital. We'll just take one day at a time.......

Family Photos

I thought I would make a few collages in Picasa so I could fit as many photos on the blog as possible. I think Maggi did a great job with what she was given--a fussy baby! She spent extra time with us because she knew this was a special photo shoot. Over the course of an hour and a half, Gracie cried for all but 20 minutes. I think she got some neat shots. Thanks to Maggi for doing such a great job.

A Record

I just wanted to write a quick update on how Gracie is doing. She has only thrown up once in the last week!!! That is an all time record! It is the strangest thing, ever since we came home from our Cardiology appointment last Monday, she has been improving. Her improvement could be a number of things:
1. She is on Bumex again and is clearing away some of her extra fluid and her heart isn't having to work as hard
2. No more Lovenox shots
3. We increased her feeds from 50 ml to 60 ml every two hours (maybe she was hungry!)
4. She finished cutting her two bottom teeth
5. Her diaper rash went away
Whatever the reason is, I like it. I feel like I have my old baby back. She will at least smile at me again now and she is sleeping through the night again. I got her to laugh again yesterday, it was so cute. It's just a bummer that we got our family photos right in the middle of her crazy fussiness!!! I will post some pictures when I get them back.

Bye, Bye, Bruises

My poor baby. These are all the bruises from her Lovenox shots that I have to give her twice a day. But, as of yesterday, there will be no more shots, therefore, no more bruises!!! Yippee!! We went to Primary Children's for her cardiology visit and I asked them if they ever go back in and do an echo to see if the clots that we are giving her the shots for, are still there. They agreed with me and decided to have an echo done. I had to wait about an hour and a half but finally got in. They did an echo and told me that they did not see the clot anymore!! No more shots, I couldn't have been happier.

The visit went pretty good, she weighed in at 12 lbs. 14 oz. They are concerned that she is not gaining like she should. They told me to increase her milk slowly over the next couple weeks from 50 ml every two hours to 60 mls. Her x-ray showed that her heart was a little enlarged since last month. Dr. Su felt her abdomen and it looks like her liver was also lower than it should be. He said that this was an indicator that she was not tolerating coming off her Bumex (the diuretic that helps with heart function). So we renewed the prescription and she is going to get it once a day again. I will trade two shots for one dose of Bumex any day!

We went to visit Gracie's little boyfriend Teagan on the 3rd floor. He looks really good and seems like a happy little guy. We put them in the crib together and Brytten took a picture. I will post that later when I get it from her. I also took Gracie into the PICU and talked to lots of our nurses, doctors and heart friends there. Grace was there, fresh off a heart transplant and doing well. It is so weird to think we have to go back soon. The five months of Gracie's life feel like five years. We will probably have a better idea next month when her surgery might be.

So for now we are holding steady and enjoying the summer months where there is not much sickness going around. Thanks for your support, we appreciate you keeping our Gracie Girl in your prayers!

Gracie's Torture Chamber

Okay, so it's really not a torture chamber but that was the first thing that came to mind when I was looking at this picture. Kids on the Move came to the house on Friday and gave me this little get up to put Gracie in everyday. It is supposed to help her with her head control and strengthen her trunk muscles. She is still not holding her head up on her own and continues to dislike being held. This new 'chair' helps her to not arch her head backwards and helps her sit up straight and hold her head up. I put her in it maybe 15 minutes a day. We'll see if it helps her improve.

Remember how I said that Gracie had been acting grumpy for a couple of weeks and that her dirty diapers were a lot more frequent? Well, as mentioned in my post before last, I asked the nurse at cardiology if it could be teething and she said 'no, a lot of things get blamed on teething'. Well, guess what? Gracie cut her first tooth yesterday!! And I'm sure her next one is on it's way! I remember that my babies are sometimes not very fun for their first year because they are constantly teething. Some mom's get lucky with their one year olds only having a couple teeth by their first birthday, my babies have 12 teeth by age one.....I'm not kidding! So add cranky heart baby with constant teething and that is a scary combo!

I gave Gracie her first taste of rice cereal today. I mixed it into her milk to a very thin consistency. While giving her a bath, I dipped her baby toothbrush (the kind that fits your finger like a glove) and scooped a little bit in her mouth. She chews on the toothbrush and gets the residual liquid and kind of swallows it down once enough pools in her mouth. She didn't seem to love it or hate it. I took that as a good sign.

We have a visit with cardiology tomorrow, we will see if they have anything new to say. Other than Gracie's crumpiness, she seems to be doing well still. Every time I check her saturation levels, they are in the high 70's. And they want her to be between 75-85 so I guess we are ok still. Thanks to everyone for all of your support. We are just trying to enjoy our time at home until we go back for round two in a couple months.

Happy 5 Month Birthday Gracie!

Just a quick post to say Happy 5th to my little baby. I would post a picture, but I didn't take any!! However, we had a million pictures taken tonight for our family photo shoot so I will post those later when I get them back in about a week. Gracie behaved just like I thought she would--not very good!! She was fussy almost the entire shoot. I had warned our photographer in advance that she wasn't going to be very cooperative so she got pretty creative in taking some fun and unique pictures. I can't wait to get them back.

No Worries (is that possible?)

I wanted to give a quick update on our Gracie Girl. She is doing pretty good. I did not end up taking her in to the doctor. I stopped fortifying her milk and just gave it to her straight. She seemed to tolerate this better and has decreased her vomiting and the diapers have gotten better too.



She is chewing on her hands constantly now which is great. She puts her thumb in her mouth and does not know how to suck on it, how sad!! She just chews. When we were still in the hospital, the speech therapist at the hospital told us to try flavored chapstick on her lips to give her something positive on her face and to not get use to dipping her binky in sweetie water. Well, she LOVES her lipgloss and tries to eat it every time we give it to her. I will have to post a video of that someday.



A few weeks ago Tom suggested we get a family photo. I thought, well, I would rather wait until the spring when she is done with her Glenn (second surgery), off the feeding tube (hopefully), sitting up and me looking a little less post partum! But then I thought, we can't wait. Waiting is something we really cannot do with our little heart babies because we never know what is around the corner. So on Wednesday, we are getting family photos. I hope we get some good ones!

A Little Concerned

Yesterday morning I laid Gracie down on a blanket and looked over to see Taylor laying next to her, just talking to her. It was so cute, I had to snap a quick photo. Gracie has actually been a bit fussy over the past week and the last few nights have not been so good. She coughs and is throwing up in the middle of the night, as well as more often during the day. Sorry to get detailed but she usually has one poopy diaper during the day and has now gone to about 4-5, which has given her a diaper rash. This is abnormal for her so I called and talked to the nurse of cardiology at PCMC. She said that since I am coming in to see them in 10 days so we will just wait for that appointment and that I should call and talk to my pediatrician. (We also ruled out some other things like if it is related to taking her off her Bumex, if it was related to teething, or if she could have NEC an infection usually within the first couple weeks of life and she said no to all of those) I called Dr. Wilcox and talked to his nurse but he is out of the country until next week. So for now I will just watch her to see how she does today. I am concerned about it because I have always been told that when they go into heart failure that the blood goes to the heart, lungs and brain and that the gut gets it last. So sometimes if they are having feeding issues it can be related to heart failure. Hopefully this is just a little stomach bug that will pass within the next few days.

Baby Face

Gracie pulled her feeding tube out this morning around 7:00 a.m. so I thought I would snap a few photos before putting it back in. Tom had already left for work when I was ready to put it back in, so Max helped me by holding her head steady and keeping the tube in her nose while I put the tape on. Max is a great helper for me when I need him. He is having experiences that most other 10 year olds are not having. I hope they will change him for the good. I think they already have.

Speech Therapy

I took Gracie in to an outpatient Speech Therapy clinic where they did an assessment of her and what was going on. The therapist gave me a couple ideas like dipping my finger in her milk and getting her to taste it, taping a feeding tube to my finger and slowly pump a few drops of milk into her mouth and also trying to dip a spoon in the formula to see if she likes the spoon better. Overall, I didn't feel like I learned anything really new. I guess I continue to hope that I run into the 'baby whisperer' who is going to know exactly what the problem is and fix it!! But I continue to leave any type of speech therapy session feeling like I am supposed to continue to give her 'positive touch on her face and mouth'. I've done that and it is not improving her SWALLOWING. So I will try these new tips and see if the Gracie Girl will improve at all. I have a follow up appointment with her in two weeks. We'll see how she does!

Check Up

I took Gracie in to the pediatrician on Friday. She weighed 11 lbs. 12 oz. (8th percentile) and 24 inches long (37th percentile). She is doing well. We are now on a monthly basis seeing either the cardiologist or the pediatrician once a month, which is wonderful! Thanks for all the advice on giving Gracie a bottle. I have a few problems as to why I don't think she will come off the feeding tube anytime soon. The main one is that she gets about 8 ounces of milk in the night on her continuous feed and I don't think she would take a bolus feed in the night to even come close to that. I can't make up for that during the day either because of her reflux. Also, I know she wouldn't be able to take her meds by mouth, at least until she gets the whole swallowing thing down. So in the meantime, I try a little everyday but she hates it. I think I am going to make an appointment with a Speech Therapist in Sandy and take everyone's ideas with me and see what we can figure out.

p.s. I forgot to say that Gracie got 5 shots for her immunizations!! (the ones she should've gotten at 2 months old) She cried a little but what are 5 shots to her? Nothin!

My Baby Won't Take a Bottle

This is another rare moment when Gracie didn't cry while Callie was holding her. My poor Callie, all she wants is a fun little baby sister. She wants to hold her, take care of her and play with her but Gracie usually wants none of it! Callie loves her so much. We sit together and put Gracie on our laps and read books to her (thanks to those who gave her gifts of books, we use them!) Gracie loves being read to.

Other Gracie news: that little stinker still will not take a bottle!! She starts to fuss the minute I try to put it in her mouth. She will let a little bit of it drip into her mouth and then she reluctantly swallows it, sometimes gagging and coughing it down (or up!). I have had Kids on the Move come out and give me a few tips. I have been trying them but nothing seems to be working. To all of you heart moms out there, do you have any advice? I am thinking now that she may never take a bottle and will be doomed for g-tube surgery in the future. They have told me to give her as much positive stimulation to her face and mouth as possible. I have done this and Gracie herself chews on her fingers all day and it has not made a difference in her wanting to take a bottle. It is pretty frustrating. On a lighter note, I got the first official LAUGH out of her today!!! She kind of gave me one the other day when I was playing with her, but today it was real. I loved it. I hope to get more and more out of her. She is doing better with throwing up. She only throws up once or twice a day now. I have increased her milk to 50 ml every other hour during the day, she has done well with that today so we'll see if she continues. She still sleeps a fair amount (which her cardiologist said is normal) and is fussy when we mess with her, but other than that, she is doing well.