Update and Birthday Surprise

Gracie is doing well, still in the PICU and slowly progressing. She is having a hard time maintaining high sats as we wean her off the high flow, but she is at 4 liters of flow and 50% oxygen--we may bring her down to three liters tomorrow, it just depends on how she does. We are optimistically hoping to be home by the first part of next week--cross your fingers!!!

I'm actually pushing to be discharged from the PICU, but we just can't get off of the IV doses of Bumex (diuretic). I've told them that they can send us home on it and I would even bring Gracie up every day for blood gases to be drawn and x-rays done, but I don't think its possible, so we are talking about different things to do to get Gracie transitioned to oral Bumex.

It's just so nice to see Gracie acting like herself, she is so playful now and content. Today we read book, played, and even got down on a mat on the floor and played and did some baby exercises!! Oh how I want to go home so Grace can start developing again, we have lost so many of the skills she had before the hospitalization.

As for my Birthday surprise...I came up to the hospital to see Gracie on Saturday afternoon after spending the morning trying to pack up all that I could since Jason and I were planning on moving the first part of this week. Normally Jason wants me to come home early, but on Saturday he told me to stay as long as I wanted, I didn't think anything of it and stayed until he called me to come home.

Well, I picked him and Morgan up at his parents' house and when we went to our apartment, to my utter surprise it was empty and almost completely cleaned!! Jason said that his wonderful sisters wanted to help us and thought it would be a great idea to move us while I was at the hospital. So I left at 11am, and at 11:30am Jason's dad was at our apartment and started loading up the truck with the rest of his siblings and mother joining shortly afterwards. Jason came right after he finished working and all this was done while they watched Morgan as well!! How crazy and amazing! They even unpacked most of our boxes for us.

Talk about an instant stress reliever...words can't express how grateful I am for all of Jason's family. I truly am blessed to have married into such a loving and caring family, each and every one of Jason's siblings, their spouses, and his parents would do anything they can to help one another and make their burdens seem lighter. I love you guys!!!

Thank you Jason, you are amazing and I love you so much. Thank you for your patience and love despite my lack of attention towards you. Thank you for making my birthday the best it could be, considering all that is going on.

Pink...my new favorite color

I know that they say a picture is worth a million words, well what do these pictures tell you?

March 25th

March 27th

Yes, Gracie is now pink!!! She has never been pink a day of her life, but look at her now, she loved the cath lab and having all the coils placed. I'm loving it too! When I got to the hospital today, Grace had been extubated for 15 minutes and I couldn't believe how good she looked. She was sound asleep, woke up, played and then fell asleep in my arms. The whole time maintaining a beautiful pink tone and being as happy as can be. But when she did get mad she didn't turn her normal purple color, she turned a beautiful shade of RED!! It made me so happy, I could barely resist making her upset just to see her turn red and look more like a "normal baby."

It was the best day ever...a year ago we were mourning the fact that our unborn baby would have a life-threatening heart condition, but today I am rejoicing in her strength, accomplishment, and existence...could I ask for a better birthday gift (on Sunday)?

I'm sure I was annoying the nurses, I couldn't help but urge everyone to come and take a look at my pink little Gracie. Given the opportunity I would have paraded her around the unit stopping to tell everyone who would listen Gracie's journey and how far she has come. I realize we still have many ups and downs, its just the course for these little heart babies, but how wonderful it feels and is to see Gracie look the way she was suppose to look after her Glenn surgery on February 2nd.

Gracie, Gracie, Gracie

Where do I start, today was a very long day---Gracie spent almost 5 1/2 hours down in the Cath lab! As we waited we were anxious and concerned about the length of time it was taking, but we couldn't help but joke about how this is typical Grace "behavior." It took two hours alone for the cardiologist to gain access to Gracie's veins and once inside, additional hours coiling and finding all the things that needed to be fixed. In all, Gracie had 15 coils placed and her pulmonary arteries were ballooned in an attempt to enlarge it and after all that we are hoping that Grace does great and will be home soon.

While sitting in the waiting room we saw various doctors that are following Grace walk to the Cath lab to check things out, as they walked back from the lab and saw us they would shake their heads and smile, instantly we all were thinking the same thing...Grace will be Grace! Perhaps the funniest was when Dr. Kouretas (her surgeon) came out and had a look on his face that seemed to say, "I'm glad I'm not the one doing the cath, I've done my time this time around."

But really Gracie is doing well, she is still intubated, we felt it was the best thing for her, to give her a chance to rest and recover (this way she got the good stuff, versed and phentanyl). Hopefully she will be extubated without much problems tomorrow and do just great.

Road trip

Gracie took another "road trip" today down to the cath lab. She has been fever free for two days with a decreased CRP level all the way down to 1.1---so the Attending wanted to get her in as soon as possible before the fevers came back. Hopefully this is what Gracie needs and she will be a whole different baby.

She has been in the cath for the last hour and half, we haven't heard anything yet, but hopefully they will be done soon. The doctors are optimistic that Grace will do great, and after watching her through the weekend, she could potentially be moved to the floor on Monday or Tuesday. I know you all are probably as shocked as I am.

Though we are excited for this move and progression towards home, it couldn't come at the worse possible time---we are moving next week. So I will be a busy mama packing and getting everything ready just in case I end up taking up residence on the third floor with little Miss Gracie.

Thank you

I should have waited before I posted the last post, I let my emotions and irrational thoughts get away from me and thought that Gracie was boycotting me--thank you for all of your comments reminding me that this certainly wasn't the case. Even Gracie must have realized that I was having a hard time because about an hour or two after I posted, Gracie woke up and decided that she was going to grant me some of the most precious smiles and coos I've been privileged to receive in weeks from her. We played for a good hour, she watched some tv and then allowed me to hold her while snuggling in for a nice long nap. Its so interesting that even though these little heart babies are so sick, so often Gracie is finding ways to "heal" my "broken" heart.

She is still doing well and is fever free...I'm hoping her CRP will be low again tomorrow and who knows maybe early next week we can go to the cath lab and we can work on going home.

Frustrated

My father-in-law is constantly asking me how I am doing it (juggling everything with Grace being in the hospital and the frequent ups and downs she has been experiencing these last few weeks) I always respond by telling him that I just do, I have no other choice. But today at the hospital I just don't know anymore, coming up to the hospital I have always been able to comfort Gracie, I have always been able to make her smile and help her feel comforted and lately all she wants is to be left alone and to be in her swing. I know that she is still sick and just had a central line placed through her groin, but this is still so so hard. I feel like she doesn't need me any more, that it doesn't matter any more whether I come or not. The nurse today said that she thinks that her swing is her safe place because nothing bad ever happens in it, but my arms use to be that safe place and I feel like now she just fights it when I hold her...I always thought that the thing about Grace that was the best is that she wasn't like so many of the other heart babies that hate to be held, but perhaps being in the hospital this time around she has developed that nasty characteristic.

I know I'm probably over reacting but it sure is hard, I just want my baby back, I want her eyes to light up the moment she sees me and a big smile to cross her lips. I want her to want me to hold her and comfort her and cry because I put her down, not because I am holding her. I just want Gracie to come home and to be allowed to care for her again.

From a medical stand point Grace is doing ok, no fevers since yesterday and her CRP levels dropped from 17 to 5.5 overnight. Though the doctors say she seems to be acting better, I'm not buying it (besides they are only in the room for 5-10 minutes) she is sleeping so much, not really smiling and has no desire to play. I just have to remember that we are moving in baby steps---Gracie baby steps.

Trip to the OR

After much deliberations among the various doctors following Gracie it was decided that the best move right now would be to place another central line--that way IV team wouldn't have to come every day to replace an IV and she is more equip to have a long term regimen of antibiotics if needed. Gracie is back in the OR right now and she wasn't too happy about going, she literally was kicking and screaming, oh how I love that she likes to tell us all what she thinks of all that she has to go through!!

We are fever free for two days!!! It seems that the antibiotics Grace was started on two days ago really seem to be helping, even though her CRP levels were elevated again today. The PICU Attending and the Infectious disease doctor are kind of in disagreement of what more needs to be done---the Infectious doctor thinks that Grace needs a nuclear bone scan and another MRI of her head to look for infection and the Attending thinks we should just hold tight and see what happens on antibiotics, if she breaks through them and still has fevers and elevated levels than we will continue "the hunt." I kind of agree with the Attending, yes, I do want to know what is going on, but not at the cost of having to continuously intubate and sedate to have these tests done because we all know that Grace can't just have some simple sedatives like most kiddos and be ok....I guess time will tell.

So the course of action is to watch Gracie and hope that she continues to respond well to the antibiotics. If she does then after a week of no fevers, no growth on blood cultures, and CRP levels below 4 she will go to Cath lab. The earliest she could go would be Friday, but most likely Monday. The good news is that she will be staying in the PICU while we wait. The Attending thinks it is pointless to move her to the floor for a day or two and frankly so do I, not to mention it is easier on us if she is in the PICU, because then I don't feel like I have to take up residence on the third floor with Grace.

Fevers continue

One sick baby!!


Gracie has continued to suffer from fevers almost every day this week, so after Tuesday's tests didn't reveal much concerning infection it was decided to call the Infectious Disease team. The first visit they gathered all of Grace's history from this stay and order what seemed like every blood test under the sun. Since we still hadn't received a positive growth, today we took a field trip down to CT scan and got scans of Gracie's head, chest, and abdomen. Guess what??? Still nothing!?!?


Today Grace was started on two different antibiotics since her CRP level (a blood test that shows there is an infection) doubled, so we are just treating what hopefully we will find soon. Its just so hard because looking at Grace you can tell she is sick, she is sleeping continuously and when she is awake she stares with very little emotion. Oh how I hope that these antibiotics will work and Grace will be fever free for a week, so she can go to cath lab and then come home.

Busy day

Gracie had a big and busy day today, at 11am Grace was intubated and then her chest tube was pulled. We then went down to MRI heavily sedated and even getting a continuous drip of precidex she needed more Rock and kedamine by the time she got down stairs and was lifted on the MRI table--what a little drug addicted baby she is! We then came back had her TEE, and then an ultrasound of her entire chest searching for clots, we then allowed for the sedatives to wear off and extubated her, what a day!

So the results, there is no vegetation (infection) in her heart and no blood clots, therefore there is still no explanation for her fevers and none of her cultures have come back positive yet. Who knows maybe her fevers and increased agitation are results of teething or a cold, though I think there really is something more going on, we may never know.

The MRI showed that Gracie has some veins running along her spine that slightly more enlarged and taking more oxygen away from her heart because blood flows in the path of least resistance, so the plan is to plug these veins with titanium coils in a hope that she will better oxygenate and be able to be successfully weaned off of the high flow. As of right now the plan is to go to cath lab to have this done on Friday, provided nothing grows out of her cultures and/or she has more fevers. Hopefully this solves the problem and hopefully she does wonderfully through the cath and there are no complications, there is actually hope that Grace can be home within two to three weeks.

Thanks for checking in and keeping Gracie in your thoughts and prayers.

where do I start?

After my last post on Friday, Gracie had numerous desating spells, but eventually calmed down enough and was able to rest comfortably. Throughout the weekend Gracie spiked many fevers, so cultures were sent and we are awaiting any growths. Today was a good day, where her highest temp was only 38.5, though she was more cranky and agitated today then yesterday.

The Attending on this week is remarkable and has made it her personal duty to investigate and find out what is really going on with Gracie. Yesterday, the Attending asked one of the cardiologist on duty to go through all of her echos since her Glenn to see if anything was being missed--this cardiologist thinks it is beneficial to do either an MRI or Heart cath to see what is going on with the blood flow in her heart. It was decided that an MRI would be safer than a cath, especially since we would have to wait for the cath because of fevers.

Unfortunately Gracie will need to be intubated for the MRI since she needs to be sedated and well, she needs more than a boat load of sedatives to do the job. The MRI is scheduled for 12pm tomorrow afternoon, so she will be sedated in the PICU and then taken down for the MRI. After the MRI she will be brought back to her bed and they will most likely do a TEE---its an echo where a probe is placed down the esophagus to get closer pictures of her heart, to look for possible infection. I'm not looking forward to being intubated, but I'm grateful that we will hopefully have answers to what is going on with my sweet little girl. Lets just hope that after the sedatives have worn off, we will be able to extubate without a problem.

Close call

I walked into the PICU after giving them an hour to place the chest tube to see about 10 people around her bed, looking like they were getting ready to intubate. My heart jumped into my throat and all I could see was the images from Tuesday running through my mind. Though Gracie wasn't coding I couldn't help but fear that she was heading in that direction.

Grace came within inches of needing to be intubated, but luckily didn't have to. Apparently what happened is that the chest tube placement went fine, but as they were getting an x-ray to make sure it was in a good place, Gracie's sats dropped and she wasn't breathing. When the RT bagged, no air was entering her lungs, she clamped down so hard that nothing could get through, eventually they opened her airway with this plastic piece and that seemed to help. She is doing well now---thankfully.

The doctors really don't know what happened, they speculate that the sedation wore off, Gracie woke up and got ticked off to find a chest tube in her side. She got mad, clamped down and possibly coughed up some thick secretions, which got stuck in her airway. About twenty minutes later she got mad, dropped her sats to 40 and the doctors were threatening CPAP. Luckily, an RT who knows Grace well extremely well told the nurses that usually less is more with Grace (meaning leave her alone unless she is in dire need of some attention). Basically Gracie needs to sleep and rest so she doesn't realize what happened. The fellow told them that though it seemed unorthodox, to put Gracie in her swing, since she is so happy in it. She has now been in her swing for almost an hour and her sats haven't dropped past 73.

I worry that when I leave there may be some issues with Gracie again, because even though I have told the nurses what to give Grace to keep her sleepy and happy, they were just talking about how they are going to try not to give her anything else until 5pm when her methadone is due. I'm giving Gracie a few minutes to show them what I have been trying to tell them before I insist that they give her some loratab or benedryl or something.

Such a simple procedure, yet Grace never ceases to surprise the doctors and keep them on their toes. The Attending said to Gracie that she doesn't have many more year to give Gracie, since she has already taken several off of her life :) Though it is frustrating at times, I'm thankful for Gracie's stubbornness and fiestiness, it is what keeps her going even if it adds some complications that we would rather not deal with.

Chest tube placement

When I called the hospital today not much has changed--Grace is doing well apart from her increase need for more oxygen on the high flow. The doctor informed me that they would be placing another chest tube today to tap the increasing fluid on the right side of her lungs. Though there isn't much fluid they feel that this is what could be contributing to Gracie's inability to be weaned down and off of the high flow.

As they were getting ready to do the procedure, I had a really hard time leaving Gracie. I didn't feel completely comfortable leaving her with the nurses that had her today, perhaps it is just because they seemed quite disorganized and not too confident in what was going on. It's just hard because Gracie's nursing bar was placed so high with all of our favorites...I'm sure these nurses are just fine, but I still worry.

Rough afternoon

Before I start, Gracie is fine, in fact other than the infection she is doing quite well. They did try to wean her high flow down to 2 1/2 liters, but she couldn't maintain her sats and eventually went back up to 6 liters of high flow. Grace also had more growth on her blood cultures drawn two days ago, its a different infection than what grew out the other day, but because of the craziness of the PICU I was unable to find out if this infection is treated with the antibiotics she is currently on or if she needs a different one.

As for the roughness of the day---around 4pm it was announced to our nurse that she would be getting a new admit, a newborn baby with HLHS. Supposedly this baby was going to be there at 4pm but didn't arrive until 5pm because of complications. Now it isn't my place to share what was going on and it wasn't like I was trying to ease drop on what was going on, but really there was no way of not knowing. Basically this baby was coding and we were left in our little corner with no where to go and frankly I didn't feel like I could because Grace would have been left alone and I don't know if she wouldn't have gotten lost in the commotion.

Anyways all I could do was sit there and feel like crying for what this poor baby and her family were going through. I watched Gracie sleep and was so grateful for her and where she is but still couldn't help but feel frustrated. I really feel so lost right now, I yearn for faith and the ability to trust Heavenly Father, but it is so hard. I feel if I don't have enough faith, trust, and hope I'm not giving Grace what is needed to receive all the power and strength that comes from our Father in Heaven and His Son. But at the same time, how can I not feel lost and betrayed to see so many babies and children suffer more in their little lives than the majority of adults will ever experience and even lose their fight.

I have always had an awful fear and anxiety about death and dying, I literally have anxiety attacks regularly because of it. But to see these little ones lose their fight even before they know what is going on depresses me so. Now I know that life doesn't end with death, that these little ones are pure and perfect, that loved ones will see them again, but how does one stop from losing their faith and from becoming cynical when they are surrounded by so much sorrow and heartache?

Basically we need to get Gracie home so I can focus on her and not her illness or the illness of so many other precious little ones.

Not going down without a fight

Due to Gracie's infection and continuing fevers the doctors decided that it would be beneficial to do a complete echo to check for an infection in Gracie's heart---they were looking for vegetation, essentially a growth on her valves. Luckily there is no vegetation as of yet, but most likely they will do another echo in a couple of days, especially if she continues to spike fevers and blood cultures come back positive.

For the echo Gracie needed to be sedated, the plan was to give her a dose of versed and if that didn't work (no one really thought it would) she would then get some kedamine. Before Gracie got the versed she was squirmy and agitated, with the dose of versed she instantaneously became happy, seriously she was flashing the biggest and brightest smiles I have seen in a long time. Not only that, but her feet were going a mile a minute--Gracie could have powered one of those peddle boat across the Provo river, that is how strong and wild she was kicking. Needless to say she got some kedamine, with each dose she fought and fought against the sedative, it wasn't until she got the 7th dose that she calmed down enough to allow the technician access to her chest and even then she would fuss a bit if she was being bothered too much. It really was quite funny....she really does have such a high resistance, sad isn't it?

The culprit

Blood cultures came back and there was a growth, Gracie has another staph infection, or the one she had is still running rampant either way she gets to start another round of antibiotics. The bad news--- it seems as if her PICC line is the culprit so it got pulled. Normally losing lines is a good thing, but that PICC line was my ticket out of the PICU and hopefully the hospital, skipping the floor and going home. Now if Gracie needs a full round of antibiotics we may have to live on the floor for two weeks since an IVis needed to administer the drugs and Grace has run out of places for PICC lines. Essentially there are other areas for PICC line placement, but I'm not sure we could go home with it. I'll keep you all posted. Oh and Grace is doing marvelously well---happy though sleep deprived :)

Random thoughts

Gracie had a low grade fever yesterday but no one was too concerned, however today she spiked and so out went all the usually cultures. Her nurse today doesn't think she will grow anything especially since she is already on vanco--one of the heavy duty antibiotics. I really don't know what to think, the fever seems to be too high for just teething, but who knows, I can tell she has two just trying to cut through.

She could be agitated, she was moved out of her little private room out to the open area, she is now right next to the nutrition room and the tube system, so needless to say there are so many unpleasant noises all around that she could be bugged by them. Sometimes you just have to hope that the fever is nothing and that it will pass, especially because we want her to come home so badly.

I was driving up to the hospital and couldn't help but cry, I still just can't keep the thought of how fragile she is from being at the surface. I honestly don't know how those who have lost their little ones can keep going, my heart aches for them and the void that they will forever feel. Several times within the last few weeks various hospital personnel have suggested that Gracie's falls should help us be able to think of how far we are willing to go in her care or to help prepare us for the worse---I freak out at the thought of even thinking about those things. I honestly think that I would need to be committed if we lost Grace because my world would come crashing down, but hopefully we will not have to go down that road. We will hold on to hope and faith that our miracle will be that Grace can live a long, relative healthy life.

Tutu

This afternoon we got to the hospital and notices an adorable tutu on the post of Gracie's bed--we wondered who it was from since there was no card and it wasn't Bingo day. Eventually our nurse came in and told us who brought the tutu to Gracie....one of our favorite nurses. I guess she was making some tutu's and had some extra material and thought that Gracie needed one, isn't that sweet!!! I love how so many love my little Gracie.

She doesn't seem to excited at first, but then loved eating it.

It's out...again!!!

Gracie is extubated again and is doing well! Yesterday she had four spontaneous trials off the vent and did remarkably well, so well that she tried several times to take the tube out herself. Its sad how routine it feels to me to be in the room while they extubate, I've seen it so many times that I asked if Gracie could help pull it out this time. It was funny because the Attending even asked just as the RT was pulling the tube out if he was going to let Gracie help. When she realized I was only joking, she said it probably wouldn't have been a good idea....

Gracie is still on high flow of 7, rather high but we don't want to push her, especially since her x-ray looked amazing!!! So now we start the process of getting her to the floor by weaning all the things keeping her in the PICU, I think we will be there till at least this weekend, but you never know.

I am extremely grateful for Gracie and how strong she is. I am grateful that so many care and worry about her, and that they are as anxious as I am to get her home and get us back to 'normalacy'. Here are some pictures from today and even a little video, you can see how puffy she still is, she was almost fluid positive 400!! Poor baby has so much fluid in her face she looks like a chipmunk.

Look mom, no tube!!

The bubbles and secretions we are constantly sucking out of her, yuck!

Just a bit of her playing, quite happy 2 1/2 hours after extubation.

small update

For those of you who are wondering, Gracie is doing well. Though she is still intubated, she is making progress and we will probably try to extibate this week, I think it depends on her x-rays and what they look like after having a couple of spontaneous trials off the vent. I'm grateful that this time around we have a less aggressive Attending on duty, she knows Gracie well enough that she is hesitant to push her too fast.

I'd write more, but I really am having a hard time collecting my emotions and thoughts. Thank you for checking up on my sweet babe.