Another Update

Grace is doing so well physically, she is tolerating tummy time and holding her head up so much more. She loves playing with her toys and has mastered her hand mouth coordination.

Gracie loves her sister and will always talk with her and smile at her. It is quite cute, every morning Morgan waits anxiously until Grace wakes up, the moment Gracie makes a peep Morgan runs into the bedroom and unwraps Gracie (we swaddle her in a swaddle me) and then gives her a big kiss and says, "good morning Gracie girl, you awake now and you happy."

Gracie's second tooth is beginning to pop through, which has brought a lot more drool and mouthing toys. We are still trying to find a formula she can tolerate, we've tried so many. Just recently we tried Alimentum---Grace developed a terrible diaper rash, so now I will clean her system out of that and try our last hope--Neocate. Oh how I hope this works, we have been blessed to receive breast milk from so many other moms, but we do need to find a formula she can tolerate. Especially because while she is in the hospital they won't give her breast milk that isn't mine or doesn't come from the milk bank.

January 9th Grace will have her third heart catherization. We are still waiting to schedule her sedated echo and once that is performed will know when her next surgery will be. I'm thinking Gracie is getting close, her sats are dropping more requiring more oxygen to keep her in the acceptable range. She will also go in on January 13th to have tubes put in her ears and have another AVR performed to see if the tubes will help with her moderate hearing loss--please pray that it will.

One of those nights

Usually Morgan goes to bed just fine, we pray, read, sing a song and then she goes to sleep. But occasionally she has her nights where she refuses to lay down, screams for an hour or an hour and a half, we let her get up for 10 minutes and then do our routine again and she goes to sleep.

Last night however, this didn't work. So after putting her to bed for the third time she asked if I would take her mattress off the bed and put it on the floor; she's never asked me to do this before. (You may ask where she would get this from, she has a friend whose father would take the mattress off the bed and let the kids jump on it.) So in desperation I did it and after a quick book and refusing to let her jump and play she was asleep within 10 minutes.

Kids are so funny!!!

Santa's Visit

Last week we took Morgan to see Santa at the University mall and she was terrified, she barely even looked at Santa. Granted he wasn't my favorite looking Santa, I thought he was a little scary, so I was happy when Santa came to our home early!!

Morgan was still terrified until she realized that Santa was her favorite uncle Mike. Though hesitant, she sat on his lap and even loved being able to play with him and the gift he brought her.

We never thought we would get a picture of Grace with Santa this year because of how cautious we are with germs, but even that little desire was granted tonight. Thanks Mike and Emily!!!

Random things

I just wanted to post some pictures and videos from the last few days. Oh how I love my girls!!!


Our new Christmas tradition--gingerbread houses.


Mom, I'm kissing my peesheart.



Aren't they just adorable?

This video is just a short cute one of Gracie---I'm trying to get her to talk, but no matter how hard she tried she couldn't get sound to come out.

Happy Birthday Gracie

I love these pictures, some of them you can even see her little tooth.

Today Gracie is 5 months old!! It is so amazing to look at my precious girl and all she has been through and know that she is still here chugging along and fighting all of her obstacles. Grace is still nippling anywhere between 15-25 cc a day, though she drinks the most from her first bottle of the day. We have been trying different formulas and still haven't found one that she can tolerate, but we still our trying.

Gracie loves Morgan---she follows her with her eyes everywhere she goes and just stares and smiles at her. Though Morgan can be a bit overwhelming a lot of the time, Gracie doesn't mind some of the harassment. Today Morgan was playing pretend food and kept giving Grace some,

well Grace was a trooper until Morgan put her fingers in Grace's mouth and down her throat...oh well, it the fate of being the younger sister.

Grace is talking more frequently and seems to try so much harder to talk, she just doesn't know exactly how to make sound come out all the time. But it is coming and sooner than I know it she'll be saying her first word!

Next week we will begin having an occupational therapist come from Kids On the Move come out and work with Grace. I'm excited but know that he has his work cut out for him--every time I try to put Grace on her tummy she flips out and screams to the point that she turns her oh so wonderful shade of purple and has sweat dripping off her forehead. But it will be good for her and with time she will become stronger and hopefully tolerate being on her stomach.

Happy 5 month birthday Gracie!!!

Can't sleep

Have you ever had one of those nights where you just can't fall asleep? Your mind is going and thinking and you just can't turn it off? I've been laying in bed for the past two hours and can't seem to fall asleep, so instead of being left alone with my thoughts (that's never a good thing) I thought I would attempt to update the blog.

Things have been somewhat busy in the Gourley house--I decided to start potty training Morgan. The other day Jason changed a terrible diaper and said to me that we needed to potty train her because her diapers are just terrible. So we bought her some big girl undies and there they sat in her drawer. Finally today I had it and thought now is as good as ever to try so off came the diaper and on goes the undies. Morgan did great today, only one accident! But towards the end of the night she was tired of sitting on the potty so frequently and just cried and whined every time we took her to the potty so we put a pull up on and called it a night. Maybe she will be a breeze to train---I don't think so, she doesn't quite understand that she can hold her pee I think.

As for Grace, she is doing great. She is drinking about 25cc a day, it is a big improvement. I tried some new bottles and she really seems to like Dr. Brown's. She is sleeping a lot better and even has allowed us to set a bedtime with her.

Last night after her bath she cooed for the first time!! I was thrilled and today I even got it on video, I'll post that when I feel like editing and putting it on the computer. Gracie really is a sweetheart, sometimes it is hard for others to see that because she is fussy and irritated most of the time, but those moments where she is content and happy she is just a doll! I can't help but staring at her and think of how much of a miracle she is. To think how remarkable she is to be here living with only half a heart, to have gone through so much and still have so much more to go through. Gracie is truly stronger than anyone I have ever known. Oh how much I love my sweet little baby---in my eyes she will always be perfect, defective heart and all!!

Doctor appointments

Over the course of the last two weeks Grace has had numerous doctor appointments---she has seen the ENT doctor (Ear, Nose,and Throat), the cardiologist, and our family doctor. After all of these appointments we have a very long list of things that need to happen within the next two months in preparation for her next major heart surgery.

Grace still has a moderate hearing loss and fluid in her ears so the plan is to have tubes put in. The doctors are hoping to get this done within the next month and pair it with a sedated echo and an AVR (a hearing test). The AVR will give us a better idea as to whether or not placing the tubes helped the hearing loss---I'm hoping and praying that it will.

Grace will also need another heart catherization, a procedure that we are all too familiar with. Since she already has two stints in place there really isn't much we can do to prolong when we have the next surgery so in the meantime we are trying to get her bigger and stronger. Gracie weighs 11lbs and is 24 inches long and the bigger we can get her the happier her cardiologist will be.

Its hard to begin to think and plan for our next surgery, we just left the hospital and really don't want to go back. I hope and pray that this next hospital stay will be shorter and easier than our first go around.

I've been tagged

So after two friends tagged me I decided to do the tag. I know I haven't updated much on the family--we are doing fine, slowly adjusting to our new lifestyle. I am waiting until after Monday to update on Grace--she has a cardiology appointment then. But both Grace and Morgan are doing well.

Crazy 8's

Rules
1. Post rules on your blog
2. Answer the six "8" items
3. Let each person know they have been tagged by leaving them a comment

8 Favorite TV Shows
1. Criminal Minds
2. Super Nanny
3. Extreme Makeover Home Edition
4. Desperate House Wives (my guilty pleasure)
5. Law and Order SVU
6. Gilmore Girls
7. Rachel Ray Show
8. ER

8 Things I did Yesterday
1. Went to Mervyns in search for some deals (didn't find any)
2. Changed over 20 diapers--Grace hates her bum to be dirty
3. Sang at the top of my lungs while in the car with Morgan
4. Laundry
5. Made mock Cafe Rio Salads
6. Went to Walmart--can you believe they didn't have any avocados
7. Spent a good two hours with Jason after the girls went to sleep
8. Fell asleep on my knees praying for two hours

8 Things I look forward to
1. Seeing one of Grace's favorite nurses on Monday
2. Hanging out with a friend without kids tomorrow
3. BYU/Utah game
4. My anniversary on December 10
5. Grace getting stronger and reaching major developmental milestones
6. Being able to attend Church as a family
7. Having Grace be tubeless and being able to carry her throughout the apartment without worrying about the oxygen or a feed going
8. Seeing my girls play with one another and be best friends

8 Favorite Restaurants
1. Cafe Rio
2. P.F. Changs
3. Tucanos
4. Macaroni Grill
5. McGraths
6. Olive Garden
7. GoodWood BBQ
8. Jason's Deli

8 Things on my wish list
1. Grace will learn to orally eat
2. Lose my baby weight from 2 babies
3. To buy a home someday
4. Be out of debt
5. Potty train Morgan
6. Regular date nights with Jason
7. Family vacation
8. Grace will be able to hear again

8 People to tag
seeing that many of my friends are in the same circle they have been tagged, but feel free to do this if you want to

Crazy Busy

I am officially a stay at home mom whose only responsibilities are her kids and family. To be honest the thought of being a stay at home mom scares me to death. I don't really know why, maybe its because I've always worked since I was 16 or its because I'm scared I'll fail as a mother, or any of another million reasons...
Life has been very hectic--we packed and moved on Wednesday and Thursday, I officially was terminated from my job on Friday, and we have since been trying to settle in to our new apartment. I'm hoping that within the next few weeks I'll be able to plan out a good schedule where my day is all mapped out so that I will be more productive with Morgan. I'm hoping to start a little preschool type lesson with her daily so she can start working on her numbers and colors more.

As for Grace she is doing well---this week has been quite eventful for her too. She now weighs 10lbs 9oz (a gain of 4oz in a week!) She is finally off of methadone, she got her last dose yesterday morning and though it was such a minute amount she seems to be having withdrawals. And to top it off she cut a tooth!! Yes at four months she cut a tooth, poor thing. Its kind of funny because she was trying to chew on her hand, but other than that there were no other signs--then Jason called me to look in her mouth because he thought he saw a tooth and sure enough she did!

A month

Yesterday marked the one month mark of having Gracie home with us and honestly I would be lying if I said that it has gone by fast. If anything this month seemed longer than the three months we spent in the hospital. Don't get me wrong I love having Grace home with us, but oh how hard it is!!! Luckily she is such a cutie.



Having a new baby in the house who requires constant medical care, working full-time from home, and having a two year old (who has decided to be two) really has taken its toll on me. Most days I wake up after a night of choppy sleep, only to go throughout my day dazed and confused, counting down the hours until my dear husband returns from work to help with the girls. All I can say is thank goodness for caffeine--I know I drink more than my share these days but without it life would be far worse.

But all of it is worth it...other than better sleep, I wouldn't have it any other way. Grace really is a good baby considering the life she has been asked to live. I think she enjoys being home. She sleeps most of the time, will wake up and smile and stare intently at all of us and even takes quite a bit of abuse from Morgan happily. Don't get me wrong she has her moments where she just screams and can't be consoled but it seems to result in an upset tummy, because twenty minutes later and a messy diaper she doses off to sleep peacefully.

This week Gracie caught her first cold and she has been miserable. I took her in for an x-ray and had an interesting x-ray in that she may be developing pockets of pneumonia. Really there is nothing for us to do other than to watch her and keep the humidifier on to help with her cough. She hasn't had a fever, just is really congested, so much so that at night her oxygen goes from 1/2 liter to almost 1 3/4 liters. Hopefully we can get rid of the cough and congestion and continue growing and working on some developmental milestones.

Gracie had about 10 minutes of tummy time again tonight and absolutely hated it, but is gaining some good neck strength. She does favor turning her head to the right more than to the left so we are working on that as well. Other than that she still reminds me much of a newborn with how much she sleeps and rests, but I'm sure it is good for her. I just can't wait till we can get her on a good schedule...one that will hopefully allow for at least a 4-5 hour chunk of uninterrupted sleep!!

Update

This week was a relatively quiet week, not many changes or things to report. Morgan still thinks it is her birthday and loves it, Grace is still being Grace one day she is perfect and the next it seems like I can't please the child, and we found an apartment!

Yes we will be moving, we don't know when exactly but it will be within a week or two. With the help of Jason's sister we found the best apartment for us at the time. A two bedroom basement apartment at $575 a month, it includes utilities, and has brand new carpet and newly painted walls. And perhaps the best thing about it, only two-four minutes from Jason's parents' house. This apartment literally fell into our laps and we are so fortunate that it did!! Thanks Michelle!

Grace's cough and gag has improved, I think we figured out the culprit--the Elecare formula. I realize that this formula is hypoallergenic and thus shouldn't cause an allergic reaction, but sure seems that way. Maybe it is the vanilla flavoring??? I stopped giving it to her for a week, her cough improved, then I tried doing one feed with breast milk fortified with the elecare and within a couple hours the cough and gag returned and she was miserable. I'm wondering if it might be the artificial flavoring since she is drinking elecare vanilla, because I can't remember if she had such a strong cough while in the PICU. I don't think so, but if we have any of Grace's nurses reading if they remember and want to share their recollections its much appreciated. I know she has always had a cough, but this cough was a painful one that produced a lot of gagging and would wake her up crying. Now her cough, though rather strong isn't nearly as frequent and doesn't seem to wake her up.

We are weaning the methadone again, Gracie is now on the smallest dose and technically I'm suppose to stop giving it to her tomorrow, but I think I'm just going to wait a couple more days--she already is showing signs of having a hard time adapting to the smaller dose. She is more sweaty and is more restless, she was awake for almost 5 hours straight without even dosing, it was only after a dose of methadone and her swing that she allowed herself to sleep---looks like I'll be spending the night in the living room with her.

I took Gracie to the Ear, Nose, and Throat doctor, he put her on an antibiotic. Basically we can't determine what is causing her hearing loss until the fluid in her ear is taken care of. We're hoping that the antibiotic will clear it up, but if not we'll have to consider surgery to put tubes in....I wish we didn't have additional complications.

But we are doing ok, hanging in and continually adjusting. Thankfully I have wonderful friends and family that will take Morgan for me or come and take care of Grace so i can sleep and get some extra rest. It seems like every three days everything catches up to me and I'm ready to crash, but it is all worth it to have our little Grace with us.

Gracie Update

It's been a couple of days since I last posted about Gracie. She is doing well, not as cranky as she has been--I think she is finally feeling more like herself now that she has adjusted to being off the ativan, unfortunately now we need to wean off of the methadone. We've started and other than extreme sweaty spells she is doing ok.

Her chest looks great. The plastic surgeon is pleased with how good it looks. Here are before and after pictures.

Tomorrow we are going to the Ear, Nose, and Throat doctor to check Grace's ears. It seems that there is fluid in her ears, we found this out when she had her sedated echo. Audiology came and did a more in depth hearing test and Gracie showed to have a moderate hearing loss--so I have been hoping and praying that all that is related to the fluid in her ears.

While we were in the PICU, she was so sensitive to sound so I didn't even think her hearing was a problem. Just the move from our private room to out in the open was a hard adjustment because of the increase in noise...

Other than the ENT we don't have another doctor's appointment till November, we go to cardiology on Nov. 24th. I hope that she does well until then. I told the doctors I wanted to be home longer than we were in the PICU before Gracie has to go back in for her next surgery---so that means we have to make it till December 27th--88 days home.

Morgan is 2!!!

It was such a busy weekend---Morgan turned 2!!! I wish I would have had more time and energy to do more for her, but I guess you do what you can do.

Her actually birthday was Saturday, but we didn't celebrate it until Sunday with our family. We did however go to Thanksgiving Point's Scarecrow days. It was fun, Morgan got her face painted, played in the grass, and we even rode on the train!!!

Happy birthday is on one cheek, Elmo on the other.

Sunday's party was quite simple, but grandma found ways to make it special. She bought red helium filled balloons and with construction paper made Elmo faces on them. Grandma also knew that I wanted to make Morgan Elmo cupcakes so she found some online and I tried to copy what was done--I don 't think they came out that bad did they?

Thanks to Aunt Shell and Uncle Chad, Morgan got her favorite gift--a dancing Elmo doll--he does a song and dance similar to the YMCA, but its ELMO. However, she also liked her tea set, hopefully Grace will let me find time to play with Morgan. I can't ever remember playing things like that, growing up with two brothers but I think it would be fun.

It amazing to see how fast time flies. It feels like Morgan was just born the other day. She is a joy to be around, from the time she was a month old she started smiling and hasn't stopped. Now she is constantly chatting and telling us what she wants and doesn't want. Today for dinner she named off all the foods she wanted to eat except for what we were giving her. Oh how I love her. We really are blessed to have her in our family and Gracie is lucky to have her as an older sister!!

Trip to the ER

Early Thursday morning (2am) we made our first trip to the ER for one of our children. Gracie had been desating all day (Wednesday) long, I attributed it to the decrease in her diuretics and just continued to adjust her oxygen flow. Finally around 8:30pm I called the cardiologist because she was sating in the low 60s and sweating profusely and I was concerned. Dr. Jou told us to resume the previous schedule with the diuretics and when we came up the next day we would get an x-ray to see if her lungs were wetter.

Gracie improved after I gave her a dose of bumex but by midnight she began to desat again. I kept increasing her oxygen level but there was no improvement in her sats. We went from 1/2 liter to 2 liters and she was still sating in the high 50s. I gave her another dose of bumex around 12:30am but didn't see much improvement after an hour so I decided to take her up to Primary's to be safe. We loaded into the car at 2:15am and pulled up to Primary's just before 3am.

There was no one at the Emergency room so we got in right away. Blood work was ordered along with an x-ray, unfortunately everything took forever to get because of the weekly test of running on the generator. So finally at 6:30am we were told that Grace's x-ray looked better than it did on Monday and her blood work all was fine. Their conclusion--she was withdrawing from the diuretics but I fixed the problem by giving her the doses of bumex and it just took a longer time than what is expected to improve.

We were discharged from the emergency room at 7:30am and instructed to wait in the cardiology waiting room for Dr. Jou to come and talk to us, since we had to stay up in SLC for Grace's 10:30am appointment with the Plastic Surgeon. We were all tired, Jason only got a couple of hours of sleep before we left our house and was able to doze while we waited in the emergency room. Me--I was being fueled by my best friend--caffeine--I had more Dr. pepper and diet coke than one person should have in a 24 hour period. Anyways...Dr. Jou found us at 10am and he was baffled--like doctors always are with Grace. He is not sure it was the diuretics causing the reaction, to him it sounded more like withdrawal, but she wasn't coming off of any pain meds and no changes were made to the ones she is taking. So Grace is back on her full doses of diuretics and is still recovering. She slept fairly well last night, hopefully she will continue to get the rest she needs so that Jason and I can get our rest too.

Quietness...isn't it lovely?

I should be preparing for the class I have to teach tomorrow on mediation but I'm taking advantage of having two sleeping kids and being able to vent. I apologize now for the rambling nature of this post.

Have you ever had one of those days that nothing goes right, everything that can go wrong does? That has been my day.

I have been up since 5am--Grace did this weird thing last night where she would wake up every two hours screaming inconsolably for like 10-15 minutes, then she would just all of a sudden calm down and go to sleep. Her sats were fine and heart rate was fine so I don't know what was going on.

Morgan woke up and was actually quite good, she even allowed me to fall asleep for a few minutes while I watched "Super Why" with her. But that didn't last because I was awaken to Grace's pulse ox machine--sound asleep and her sats kept dropping, so I had to keep increasing her oxygen--we went from 1/2 a liter to a little over 1 liter in 40 minutes; but as she woke up she began to over sat and I was able to bring her back down to 1/2 liter.

We met with PEEPs today--a program to help babies and toddlers with development if they have a delay. But once they left everything fell apart. Grace was already late for her 10am meds and was beginning to let me know, since one of the meds were methadone. So I went to get the methadone and there was none left in the bottle. Apparently I didn't put the cap on tight enough and all of the remaining methadone spilled out. I began to freak out, but then I called her doctor to get a prescription only to find that they don't have the proper license to fill it. It is now 12pm, Grace is freaking out and screaming and Morgan decided that it would be fun to get into my baking drawer and throw sprinkles onto the floor. The sad thing is that I let her do it because if I put Grace down she would scream and then Morgan would throw a tantrum once I stopped her, so I let her make the biggest mess she has EVER made.

Back to the methadone--I called the cardiologist office and followed the automated message and left all the information for a refill. But 2o minutes later I decided I better talk to someone to be sure--good thing I did because a mess ensued. The secretary took all the information and said someone would call me back, they did and told me that the refill needed to go through the surgeon so she gave me the number to Linda one of the nurse practitioners. She couldn't help me because the cardiothoraxic team signed off on Grace a long time ago. So she called and spoke to cardiology's nurse and then I was told to call cardiology back because no one could even find the discharge form with the methadone prescription on it. So now almost 2pm, 4 hours later I still don't have any methadone and don't know if I will have some for tonight.

I did however pry off the little inner dispensing lid on the methadone bottle and suctioned every little drop out of it, diluted what was there and gave it to Grace. I figured a little was better than none. I also gave her a dose of benedryl since it was ok to give her some when we first went off the ativan--hence why she is sound asleep.

The afternoon and evening doesn't get much better. I have one to one meetings with my RAs, a mediation to do between two residents and I still have to plan a lesson for tomorrow. In addition to taking care of the girls and trying to give Grace a bath--which takes about an hour with dressing changes and retaping the cannula. I'm really not complaining, just venting. The good thing though is that we are actively looking for an apartment so that I can quit. Our goal is to get to the first week of November, that way we can keep our 2nd insurance for another month.

For those who are still reading my rambling, I'll leave you with an update on Grace. Grace is doing good for the most part, she has grown in the last two weeks. When we came home she weighed 9lbs 15oz and was 21in long. Yesterday she weighed 10lbs 4oz and 22 in long!! She had a sedated echo on Monday and things look good--the biggest news from that is that her blood clot in her atrium is gone, so no more lovenox shots!! We are loving that. We don't go back to the doctors until November provided she continues to do so well.

Blessing Day

We blessed Grace today in church and for the blessing she was a jewel. Jason did a wonderful job and gave her the sweetest and most precious blessing. Here is a picture of Gracie in her dress--it was quite big on her but she didn't seem to mind.

We were thankful for the opportunity to bless her in our ward--so many have prayed and followed Gracie since she was born--it was a little miracle to have her there and blessed. Grace truly is a blessing and a miracle, in her blessing she was blessed to live a healthy and long life. This statement means the most to me because it brought comfort...so often I look at my baby and wonder how long she will be with us. Oh how I hope that my definition of long life is the same as Heavenly Father's.

She sleeps...

Gracie finally tuckered out this morning and fell asleep after almost three days of being awake. She has been asleep for the last three hours--a big change from her 10-15 minute cat naps here and there.

I called the doctor out of desperation yesterday morning to see if I could give Grace anything to help her possibly sleep. She ok'd me giving her some benadryl, it didn't knock her out like I had hoped, but it did relax her enough so she wasn't screaming uncontrollably.

Overall Grace is doing well, other than the side effects of the wean. She goes to the cardiologist on Monday for a sedated echo, oh how I hope all will be ok. I had her hooked up to her pulse ox machine last night and early this morning and it kept reading that her sats were in the 50s and 60s, even though she looked ok. But she did look a little bluer so I tried increasing her oxygen a bit, but it didn't change, so I finally put her back on half a liter and turned off the pulse ox. Now she is fine and her color looks great.

I hate Weaning

Yesterday (Wednesday) Gracie was weaned completely from Ativan according to the weaning schedule we left the hospital with and I hate it!!! I have been so tempted to pull out the bottle and give her some, especially now at 4am and her eyes aren't even heavy. She hasn't really slept at all all day and is super irritable and doesn't really know what she wants. I told Jason that I would "sleep" in the living room with her so he could get some sleep for work but no sleep for me...I'm just hoping that maybe this time around the swing will lull her into a deep enough sleep that she doesn't wake up two minutes later.

We put Gracie in her vibrating chair thinking that would help her relax and sleep because when we held her and bounced her she would begin to dose...it didn't work. But she did love it!

If anyone else has experienced the awful effects of weaning and how they survived I'd appreciate hearing about it. I just don't know if I will be able to survive more days and nights like today. And I know I'm hesitant to continue weaning on the methadone until the affects of not having Ativan have subsided.

Grace is asleep, I'm going to try and get some sleep too before Morgan wakes up or she startles herself awake.

Update

Things are going well here at home--just really busy and I'm about to become even busier. I will be going back to work full time tomorrow and frankly don't know how I'm going to do it. Thankfully Jason has a great family that helps us a lot, but its not going to be enough if I'm going to continue working for another month or two. So we are toying with the idea of hiring some help to come in a couple hours in the afternoon and night to help with everything. I haven't decided how I really feel about this yet--I know I can't do it all alone, but the thought of having someone come and take care of my girls just because I need to work doesn't settle well for me.

Grace is doing ok, still having a really difficult time with eating. She loved to suck on the bottle but hasn't yet been able to coordinate enough to keep from chocking and gagging on the milk. We will be completely off the Ativan tomorrow night and in another week we'll be off of methadone. She seems to be doing well with the wean---but I'm still kind of wishing we weren't giving up the "good stuff."

Morgan seems to be adjusting well to having Grace around. Today I left them alone for just a couple of minutes before Morgan came and got me and told me that Gracie was drawing...this is what I found.




(Notice the paper and pen on Grace's lap.)

Dr.'s appointment

Yesterday was Grace's first appointment with our family doctor and she did great. It was kind of fun to take her in since many at the office have been following my little Gracie. She even behaved herself and didn't scream as loud as I thought she would and even tolerated her assessment better than she would while in the hospital.

Gracie is quite tiny, weighing in at 9lbs 15 oz and 21 in long---she doesn't even make the charts for a three month old. But its ok, she is still doing great and hopefully will gain weight fast. She really seems to like eating from a bottle, she shows signs of hunger and then even gulps down her milk. Tonight she drank her normal 20 cc and still wanted more; she wasn't working too hard so we gave her another 20 cc and she drank it all! I was so proud of her until about 15 minutes after when the 40cc in her tummy over the course of 25 minutes actually caught up to her--she was miserable for two hours until she finally got her methadone (what will I do when she is off of it completely?). So next time she still wants more, I'll just have to let her slowly work her way up to a higher volume in a short time.

The last few nights have been good, just really hard. Early Friday morning Grace had a fever and we thought we were going to have to take her into the emergency room, it scared us so much. But her fever began to drop and eventually break, we had a CBC drawn and all looked normal so it who knows what was going on. I think it was a combination of weaning from the drugs, being over stimulated by a 2 year old and just being in a new environment.

Wow....

I haven't had a chance to sit down since we left the hospital yesterday--Gracie is keeping me busy and then adding Morgan to the mix, I don't know how I will do it, plus work....but I'm sure everything will work out and I only have to do it till December right?

Yesterday I woke up not knowing for sure if we were going to be going home or not, around 11am I finally got the word that we would be going home. Soon after the doctors started working on getting all the paper work done so that we could go home and that took literally hours, we didn't leave the hospital till 6:45pm!!! But we didn't mind too much because we were able to carry Grace down to the PICU and see some of our favorite people there. The PICU is a funny place--no one wants to be there, especially for as long as we were, but there are some wonderful nurses and doctors there (I think the best in the whole hospital). I think the good ones end up loving those long timers almost as much as us parents love them.

I'm rambling...sorry...can you tell I'm tired? We didn't get to bed until 12:30am because the Home Health Care nurse had to come and set up the feeding pump (2 1/2 hours after she was due for a feed, luckily I was taught how to gavage feed). Then the oxygen people...who knew that someone so little could need so much.

Anyway I'm getting the hang of this I think, Grace has meds due every other hour and then adding feeds every three hours, I don't know how I will be able to ever leave the house. But I read that another Heart mom draws out all of her sons meds the night before and I've adopted that method. I don't have nearly as many meds as she has for her little one, but its still a lot and it assures that those middle of the night doses are accurate and not drawn up while I'm half asleep.

I think Grace is liking being home, it is an adjustment for us all, but we couldn't be happier. As we drove down Foothill Dr. all I could do was cry. I cried because I honestly didn't know if this day was ever going to come. I cried because I couldn't wait to get home so that my family could finally be together all under one roof. I cried because I have been given a miracle--Grace is truly a miracle and will always be such. I could go on, but I think you all know how wonderful it is to have Grace home.

The night before we left the hospital, I had to learn how to put in Grace's feeding tube, so I took advantage of Gracie's tubeless face...hope you enjoy.

We're going home TODAY!!!

The orders haven't been written yet but we are going home today!!! I can't believe this day has finally come, we are so excited and not so scared as we were yesterday (though we still are scared and nervous). It is 12:30pm and it will take a while to get everything coordinated between all the different teams so we are looking at leaving hopefully no later than 4pm.

Not today

We won't be going home today, nothing major is going on its just that Grace has had too really sleepless and fussy nights. The doctors don't know what is causing her to be so fussy, it could either be a terrible bout of colic or withdrawal, or a combination of the two. But they want to get a better feel for what is going on with her and see if they can help it any before they send us home with an inconsolable baby.

Right now she is finally asleep in her swing--though she has woken up several times she has fallen back asleep---this is the most rest she has had at one time in two days (1 1/2 hours). Last night the nurse and tech her so kind they took Grace out of the room at midnight and walked the halls with her so I could get some sleep since I hadn't slept the night before. I was so grateful, I woke up at 6am to Grace screaming in the hall (she has a good set of lungs) and then resumed the walking the halls with her.

We finally tried a dose of morphine, she had her normal response--slept for 20 minutes and then woke up calm. But an hour later the inconsolable crying began. It is so hard because normally she calms easy and is content if in your arms, but not these last few days. So the plan today is to stop the gavage feedings and feed her via the pump over 1 1/2. Hopefully this will help or at least give the doctors a better understanding as to what is going on with her.

I'm hoping to go home tomorrow, I'm tempted to just tell them that we will take our colicky baby home and deal with the hardship that brings to just have her home finally. We have been in the hospital for a total of 86 days, 80 of which spent in the PICU--its time to go home. My goal is to spend more time at home than we did in the hospital before its time to have her second open heart surgery.

PS--if any of you have had colicky babies, I would love to hear what worked for you to help them get some sleep.

The Plan

Grace is still doing well though last night and today she has been extremely cranky and fussy. We have been weaning her methadone and though they have only cut the dose a little bit it is still very noticeable by Grace.

In addition to this we have worked our way up to feeds every 3 hours, which means she is getting 69cc (that's a little more than two ounces) an hour. The doctors wanted to do gravage feeds, which is basically not putting the syringe on a pump and letting gravity work so she can get the feeling of filling her stomach gradually, but before they do this I think she needs to work up to it so that is what we are doing. Once Gracie seems to tolerate getting the 69cc in a half an hour on the pump then we will try the gravage feeding. She doesn't throw up much just about 5-10cc but whenever her stomach is full she starts coughing and chocking retching---it is actually quite scary to watch.

So I think we are still aiming to go home either Tuesday or Wednesday--there is a small chance we could go home on Monday but I hope not, I'm just not ready. To be perfectly honest I'm scared to death to go home. It's not that I don't feel confident in providing her care, like giving meds, her shots, etc. (though I haven't learned how to put in the feeding tube yet), it's more that I'm afraid of what could happen. We have made it so far and yes she is stable and doing great, but forever our lives will always rest upon how long Gracie's heart will last. All we can do is trust in God and know that He is in charge and hope and pray that she will live a long life, full of joy and happiness.

sisters

Morgan came up again on Friday and spent the day with us in the hospital room--no wagon trips around the floor today, but I did let Morgan get into Gracie's crib to "help" me change Grace's diaper. So I had to take some pictures of the girls together; I've waited a long time to have them be in the same room and begin bonding.

car seat

One of the things that Gracie needs to do before we can go home is a car seat trial--she has to be able to sit in her car seat for the duration of the drive home (1 hour and 15 minutes) without dropping her sats. She did really well at the onset, she seemed to like the new perspective and even enjoyed being closer to her mobile, so how could I resist taking pictures.

But after about 15 minutes she let me know she had enough and no amount of rocking, patting, or rubbing was going to change that. I had no other choice but to take her out, hopefully she'll do better the next time we try.

wagon

Thursday Morgan came up to see Gracie in her new room and just absolutely loved it. She went to the playroom and painted, she rode in the elevator a couple of times and even went for a wagon ride with Gracie.

Gracie's nurse helped load Grace and her feeding pump and a portable monitor into a wagon, Jason pushed the oxygen and off we went around the unit. Grace slept through the whole walk but Morgan loved it!

Yummy

Today has been a really good day for Grace. She rested extremely well, in fact she has only been awake for maybe two hours all day. I hope that doesn't mean she'll be awake all night.

Gracie's big accomplishment today was drinking from a bottle!! At 11:30am the speech therapist came to work with us on how to feed her, but Grace didn't want anything to do with the bottle. So we left her alone and planned on trying it again later; but before we tried, we turned her feeds off for an hour to hopefully make her hungry and then the gave her a flavored formula. Its the same formula she has been on--ellacare, just vanilla flavored, it smells like cake batter. Though it was some work for both Gracie and I she drank 16cc!! What an accomplishment!!! As she finally latched on and drank I was so happy tears filled my eyes, 12 1/2 weeks after birth and she is finally experiencing eating for the first time. Every day she does more and more baby things instead of spending all her energy on healing and growing.

Eating is really hard for all heart babies--it takes so much energy and coordination, so the plan is to have Grace on every two hour feeds. So she'll get 46cc every two hours over the course of an hour tonight. Then in the morning we will give her a bottle again and she will have the opportunity to drink as much of the 46cc she can in 10-15 minutes (depending on how tired she seems) and whatever she doesn't finish goes through her feeding tube. Then the next two feeding she'll just be fed through her tube and then we'll try the bottle again. We're just hoping that her belly can handle having so much volume at once.

Other milestones for today--Grace wore her first dress today and looked absolutely adorable. Its a dress Jason picked out and bought and all Grace's were impressed with how well he did on the purchase :) Morgan also came to visit and loved seeing Gracie, she even got to go for a ride with her in the wagon. We loaded Gracie in with a portable monitor and walked around the unit--though Grace was asleep she liked it because whenever we stopped she would start to cry. What can I say the girl knows what she likes and knows how to get others to accommodate her.

We're here!!!

We were discharged from the PICU at 11am this morning! I can hardly believe that we actually were able to leave the PICU. Gracie is doing great. She seems to be enjoying the quietness of having our own room again and I am enjoying being with her all the time and taking care of her. But I must admit that it is hard not to have a nurse with her 24/7---really unless needed the nurse only comes in to do vitals---every four hours. So needless to say I feel the need to stay with her every night--I'm afraid she'd be left alone crying for too long and she'll of worked herself up too much.

Gracie has some major goals:
1. she needs to gradually be weaned off the adavan and methadone (this will be a long process)
2. We need to see if she can come off of continuous feeds and do bolice feeds. Currently she is getting 23cc an hour, so they want her to be able to tolerate 46cc every two hours and then watch her for a day or two and then see if Grace can handle 69cc every three hours. All along we will be trying to get her to learn how to drink from a bottle. This is the goal that is going to determine when she comes home---if things go the way that is hoped by the doctors Gracie could be home in a week.
3. I need to learn how to care for her and how to manage her meds. She needs to do a car seat test

I know she will be able to accomplish these goals its just a matter of when she does it---everything is on Gracie time---I'm hoping that her time frame has sped up. But in the mean time I am enjoying watching her sleep, caring for her, and just being with her.

Moving on up...

Sorry I can't help but post pictures of Gracie, she's so cute and as a reader of other's blogs I enjoy it better if their are pictures!! Hope you don't get tired of seeing this cute little face.

Today was a good day for our little Gracie. She had her swallow study (a test done to see if she can protect her airway so that she won't aspirate into her lungs) and she passed!!! She did have some reflux that caused the drink they give to come back into her nasal cavity, but it didn't come out of her nose--it just came up and then went back down her throat. So they have moved the feeding tube from her intestines to her stomach and will now be helping her learn how to drink from a bottle. Gracie will only start off with 5 or 10 cc a day by mouth but hopefully with practice she'll do great and even start gaining weight so I can try nursing her.

So provided Gracie does well tonight we will be moving to the third floor tomorrow--just writing those words brings tears to my eyes. For so long our goal was just to keep her alive from day to day that moving her to the floor wasn't even a consideration. Now our sweet little fighter is doing so well we are even talking about bringing her home next week if things go well. Miracles really do happen and Gracie is living proof--really how could anyone survive what she has gone through if it wasn't for a loving Father in Heaven who strengthened and cradled Gracie during those rough times.

Many people told us that most heart babies don't like to be held or touched because of their experiences but Gracie absolutely loves to be held and cuddled. In fact she demands it, all of her nurses can will tell you that they have had to hold Gracie just to keep her calm and relaxed (not that any of them complained). Anyways I wonder if she loves being held so much because even once she was born, Heavenly Father wrapped his arms around my sweet baby to nurture her through her 10 major procedures and all of her many complications. What an amazing image!!

Thank you all for your help, support, love and prayers. For those of you who have helped with Morgan--thank you--I don't know what I would have done if I didn't have wonderful friends and family to care for her so I didn't have to worry so much about her and who cared for her.

Holding Steady

Today was a quiet and good day for little Gracie. She seems to be tolerating having the milirone off and the "big" change today was lowering her high flow from 4 liters to 3 liters. I spoke to the doctor today, he said that she could go up to the third floor as early as Tuesday!!! Can you believe that after 12 weeks we may finally get out of the PICU? I'm very nervous but excited. Oh how I hope that Gracie does well and continues to progress.

We gave Gracie a nice sponge bath and she absolutely loved it, she didn't even cry once I noticed today that her hair has gotten more red in the back--who would have thought she'd have red hair? I guess that is expected considering her fiestiness and temper.

Still doing good

Gracie is doing well. Her milirone was turned off completely today and the doctors are just watching to see how she will tolerate it. One of the Attendings told me today that it will take a day or two before we really can see if she tolerates it well. Turning her milirone down and off is the only thing that has the doctors have done--they want to take it extremely slow just to be safe and because Gracie has proven to be finicky when more than one thing is done at a time.

The next step is to try and turn the high flow down--optimistically speaking if she tolerates everything well enough, Gracie could move up to the third floor by Thursday at the earliest. Though the thought of being on the floor scares me to death, we are hoping and praying that she will get there soon.

We brought Gracie's swing to the hospital today and she loved it! Hopefully it will help soothe her because right now she demands to be held continuously--the nurses today had to take turns holding her and bouncing her just to keep her calm!!

Everyone's smiling

Today was a very good day! Gracie did great all day long and was extibated this afternoon and did wonderful. She was still mad like she has been the previous times she had her breathing tube removed, but this time I think it was because they put her back on high flow at 6 liters (higher than she has ever been on before, I think). But after her gas came back with some great numbers she was taken down to 4 and almost fell asleep instantly.

I held her about an hour after she was extibated and she loved it. I even was able to hold her up chest to chest--I wasn't sure how she would like it, but she fell right asleep and slept in that position for about 40 minutes. Gracie then woke up and was content just looking around and eventually giving me her first social smile--talk about melting my heart. I walked out of the hospital on cloud nine--she is smiling and feeling good, what more can I ask for aside from having her home?

The doctors think she just might make it to the floor this time and even said as early as a week away!! Of course it all depends on little Miss Grace, sometimes I think she loves the PICU so much that when we mention sending her to the floor she finds ways to stay. She just has to get home and then she'll see how wonderful it is, even if it means leaving all of her favorite nurses and doctors; she'll see them all again soon enough.

I'm posting a little video we took of Gracie tonight--she is working up to smiling and we would have gotten it on film but our memory card was full so it cut us off. We hope you enjoy seeing our little beauty.

A Success...

Let me apologize before hand if this post is somewhat incoherent; I've been up since 4am and just got home from checking cleaning in freshman apartments. I just wanted to post tonight because I know there are many wanting to know how she is doing.

Gracie's heart cath was really successful and she is recovering comfortably. Apparently Gracie just wants to be a pioneer in her recovery first being suspended for several days and now having to have had two stints placed at either end of her sano--something that they say they have never done. At one end a muscle was compressing the sano and at the other end there seemed to be a kink.

The doctors are optimistic that this will help her so much, we can already see an improvement. Gracie's sats have stayed stable in the high 70s and 80s. They have weaned her on her vent and feel she is ready to be extibated, but promised to wait till tomorrow afternoon when Jason and I can be there. We are hoping that this procedure was exactly what Grace needed to get her over the hump and excel now.

I also spoke to the doctor about her heart arrhythmia and they are thinking that the stints are going to help with that so they aren't going to start her on any meds to treat it for now. I'm a little concerned but I trust that the doctors know what they are talking about. We have been in the PICU for so long that I know that many of her care givers love Gracie and want her to excel as much as we do. Since she has been reintubated everyone who walks by stops and asks what happened because it is such a shock to see her reintubated. How wonderful it is to know that she is cared for by so many nurses and staff in the PICU--it makes leaving her there a little bit easier.

Thank you again for all your thoughts, prayers and support.

Heart Cath

Gracie will go in for her 10th major procedure tomorrow morning at 7:30am. Most likely they will stint open her sano and hopefully this will help with her oxygenation levels and everything else.

The doctors are optimistic that this is what Grace needs--they were actually thinking it was time to send her to the cath lab anyways, even before all of this happened. The Attending--Doctor Whitty--also thinks that we should be able to extubate by friday. She feels that Gracie doesn't even need to be intubated, it was more of a precaution and she would need to be intubated anyways.

After studying Grace's heart rhythms from the last two months, the doctors believe that she has a heart arrhythmia--kind of hard to detect since the waves aren't much different from regular heart waves. We're hoping that meds will be able to fix it, in fact one of the meds that they use to treat the heart arrhythmia can also be an after load reducer--which is what the enalapril was intended for.

I'll post tomorrow after the cath lab.

Mother's intuition

Last night as we were getting ready for bed I felt really uneasy about where Gracie was--so uneasy I was literally scared to death for her. Before I layed down I called the hospital and found all to be well--she was resting comfortably, the only change was that her high flow was increased from 4 liters to 5 liters. I felt comforted and went to sleep only to have Morgan join us in bed at 1am because of her teeth and her way of dealing with all that is going on. About 2 hours later, we couldn't handle Morgan being in bed with us so we took her back to her bed--needless to say that when my alarm went off at 4:30am to pump and call the hospital I ignored it and the next thing I knew we were getting a phone call from the hospital.

We were told that Gracie wasn't doing too well, her blood pressure and heart rate were extremely high and no one knew why. Apparently after the nurse did her morning assessments, she went to the next bed to assess the other little girl she was caring for and within a minute Grace's alarms were going off--her blood pressure sky rocketed along with her heart rate and the weird thing was that she was sound asleep. So they gave her some fluids and eventually she relaxed and the numbers came down. But a few minutes later, as the attending was sitting watching her, Grace's heart rate went from the 170s to the 210s within 15 seconds and she was still asleep. She started having irregular breathing and they decided to reintubate her to be safe. It took quite some time to calm her down and a lot of sedatives but she seems to be stable now.

The doctors are puzzled--they have no idea what caused the episodes or what to do. They did an echo, all looks fine. They did an ultrasound of her head--and that is normal. So the next step is probably to go back to the catherization lab and possibly stint open her conduit (what was placed in her heart in her first surgery). Hopefully by doing this they will be able to help whatever narrowing may be affecting the squeeze of her heart that is effecting her blood pressure.

We are so grateful for great doctors and nurses that know what they are doing and that are willing to keep us involved in Grace's care. The fellow on, told us that he wouldn't necessarily consider this episode a step backward--if anything it has given us additional information about Gracie. Something needs to be done because her heart can't handle working on its one when she is extubated without some help. Basically he feels that Grace plateaued in her progress and we just need to get over that hump. I kind of think of it like this: some heart babies have a really fast recovery, where everything goes according to plan. Others, however, their road is more curved and whindy, in that it may seem that they are just going in circles, but those circles are just part of that whindy road that eventually will bring them out of the woods. (Have I confused you all with my little analogy?)

Please continue to pray for our Gracie, she needs all the help she can get. She is so strong and I know she is a fighter and wants to survive--looking into her big, beautiful eyes I can see she isn't ready to give up yet. Thank you all for your love and support.

Today...

Where do I start? As I mentioned earlier, today was a rough day for Gracie. Her heart rate has been high all day and even got into the "200 teens," she had a high fever and just seemed inconsolable unless she was in some one's arms being rocked and bounced. The cultures drawn a couple days ago showed that she had a urinary tract infection, so the doctors decided to send another culture to verify it--but started her on antibiotics anyway.

The cardiologist that did the echo last night thought that her leaking valve was leaking more than it was on Tuesday's echo--but he didn't know for sure; this is why her milirone was increased. The also increased her high flow to 5--she has never been on it that high (I think this is what added to her agitation, its like a wind storm in your nostrils). They also increased both her adavan and methadone because of her extreme agitation.

Despite all the changes nothing seemed to take away what has bugging her--she wasn't sleeping soundly and her heart rate was still higher than we would want it. Around 7:30pm, Gracie was still fussy and no matter what way I held her, bounced her, or rocked her nothing helped. I looked down and noticed that her feeding tube had grown...somehow it got pulled out and we suspected it was no longer in her intestines like it should be. The nurse turned off Grace's feeds and waited for the doctor to come by and within 15 minutes of her feeds being off and me patting her belly nonstop she was able to relax. Gracie was so relaxed that she just stared at me for 45 minutes straight--she was so close to smiling, it was as if she was teasing me. The corners of her mouth would turn up just a bit and then she would open her mouth or something...but I think her first social smile is coming.

Anyways the feeding tube was indeed pulled out, the nurse said it probably was in her esophagus. No wonder she was so upset--her tummy isn't use to having food in it, let alone 23cc an hour for who knows how long. Hopefully now she can rest easily and get the rest she needs.

Thank you for your thoughts and prayers.

Two Steps back

When I called and spoke to the nurse early this morning I was told that the cardiologist had to come in and do an echo on Gracie--her heart rate was in the 180s and morphine didn't even seem to help. He didn't say much but increased her milirone to .50cc and put her back on high flow. I haven't been able to talk to the doctors yet so I don't know what he saw or what they are thinking. I'll update later once I know more.

We can see the light...

Last night we were talking to the doctor and he told us that Gracie is so close to leaving the PICU, that he can see the light at the end of the tunnel--she is so close and just needs to keep moving forward!!!

By yesterday afternoon Grace was off of the high flow oxygen and just on a regular cannula and the millirone was off completely. Unfortunately though, Gracie didn't seem to be tolerating it very well--her heart rate sat in the 180s and she began to develop a fever. They turned the millirone back on to .25cc an hour and ran a whole bunch of cultures to see if Grace developed an infection because of her surgery last Friday. Throughout the night her fever broke, but she never really slept (she has been quite cranky with a lot of gas) and her sats were in the 60s, so they thought they would have to put her back on high flow. It seemed that we were hitting a bump that we just couldn't get over; but Grace managed to stay off of high flow today!!

During rounds today the doctors think that taking her off of both high flow and millirone probably was just too much and that they would let Gracie just rest and begin weaning milirone possibly tomorrow. But this time they will go slower than just turning it off from the .25cc.

So while I was there I just held Gracie and she was exactly where she wanted to be, she just slept so soundly that I could actually stroke her head and she wouldn't even budge. I was so happy because she needed some good sleep. Wish us luck that Gracie will decide she is ok with being off the milirone because once she is we should be on the floor as early as Tuesday or Wednesday--its all up to her now!! Gracie can do it, she has come so far!!

Grace's Song

A friend that I met up at the hospital gave me this website called Songs of Love--you fill out a questionaire about your child who is facing a life threatening illness (thanks Hollie) and we just got the song today. Jason and I love it and hope that Gracie will come to love it too. Hear it is for your listening pleasure.

http://www.box.net/shared/03s4skjron

Pictures of Gracie

As I held Gracie today I realized that the simple sponge baths Gracie had been getting wasn't doing the trick--she stunk!! So I gave her a good head to toe bath wetting her down as much as I can without imerging her completely in a bath. These pictures were taken after her bath--though she hated the bath, I think she felt good and was happy that she was clean. One of the pictures even has her smiling a bit. She is such a beauty!!