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.