I Did It!!!

Sorry there are so many pictures, I took 45 and couldn't pick just one favorite one--which one is your favorite? Personally I think she is beautiful in all of the pictures--her cheeks aren't even torn apart from being taped for 8 weeks.

Gracie did it! She is extubated and is doing well! They pulled the tube out around 11:45am and immediately put her on high flow. Though she tolerated it relatively well she was extremely ticked off and had a hard time keeping her sats up, but her heart rate never went above the high 180s. It seemed as if she hated the high flow, but on top of that she has had a terribly belly ache for the last few days and she was having a hard time coughing up the junk in her chest.

At one point the Attending decided to try and give Grace some kedamine (a sedative) to help her relax, but it helped to much and she stopped breathing unless we were messing with her. Once we got her through the effects of the kedamine, she was still completely agitated that the nurse suggested that I try holding her. I promptly obliged and within a couple minutes she was out and calm. I held her for about three hours straight, bouncing and rocking the entire time almost because the moment I stopped she would get so agitated and fussy that she would freak out and we don't want her doing that.

So it has been about 11 hours and she is doing well. In fact the doctors were kind of surprised at how good she was doing--they began to wonder if they waited too long to extubate. I assured them that I didn't think so, I'd rather have had them wait a little longer to have her do so well as opposed to fail or struggle more.

Gracie is still being watched closely but as of now she has yet to show signs of labored breathing or getting too tired. The plan now is to let her get stronger and on Wednesday go to the OR for her skin graft. She will have to be reintubated for that, but the docs are hoping to extubate while in the OR or soon after she returns to the PICU. It looks like we just may be able to go home in a couple of weeks--wouldn't that just be amazing, especially since Gracie will be 8 weeks old tomorrow.

Thanks again for all of your love and prayers!!

Possible Extubation??

Gracie is doing well today, not as agitated as yesterday and quite restful. Today the doctors decided to increase her spontaneous trial to an hour and a half every 6 hours. She is doing so well through them that they are talking about possibly extubating tomorrow sometime. CRAZY!

Her nurse today thinks that Grace is ready and we need to give her a try, otherwise we'll never know if she is ready. She also said that there is a big chance that they will have to reintubate but it doesn't necessarily mean a step back if it happens.

Please continue praying for Gracie tomorrow, she truly does need the strength and power emulated from all of our friends' and family's prayers.

WARNING--Not for the faint of heart

At the end of this post are a couple of pictures of Gracie's wound without any covering.


Today I went in to see Gracie and to my surprise the wound vac was not on her chest! Apparently the Plastic Surgeon felt that the graft looks good and wants some air to get to it, so all that is on it is an antibiotic ointment. I guess the plan is to reassess it on Wednesday and then we will know when the next surgery is. What will happen is they will take a piece of skin from Grace's upper thigh--not as big as her wound--and then they will run it through this special machine that smooths and stretches it, the they cut it to match the wound. They will then suture it, cover it with the wound vac and let it heal. Quite the process!

It still hasn't been decided when they will actually extubate Grace. They are either going to do it soon so she has a few days before the surgery or just wait until she comes back from the OR. The good thing is that Gracie is handling the spontaneous trials wonderfully--she has one every 6 hours for an hour at a time. She isn't breathing hard or laboring, she even can sleep soundly and peacefully through the trial. I know this might not sound like that big of an accomplishment, but it really is. She is learning to breathe all over again and it is a lot of work, something we take for granted.

The only update is that they have weaned her more off of her methadone and adavan which is causing her to be more agitated and fussy. I have never seen her act the way she did today--she was practically inconsolable unless I continuously was bouncing her bum. While I was holding her, we decided to give her some morphine (normally it does nothing for her) it knocked her out instantly and when she woke up she was just very mellow. Gracie really is amazing!! She has come a long way.

A bunch of random things

Grace is doing ok today--she had a few bumps in the middle of the night. Yesterday the doctors decided to try and wean Grace off of her millirone (sp?) and started giving her a new drug--analipril (sp?), both drugs have the same purpose--help the heart not work as hard--but millirone is only given intravenous while analipril is given orally. Three weeks ago they tried to give Gracie analipril, but that was also the day that she ran a high fever and they did a major clean out of her chest and her blood pressure dropped and we couldn't get it up again (the last major scare). Apparently it was the analipril because her blood pressure started dropping again yesterday and throughout the night. Luckily we had a nurse that knows Gracie and remembered the previous episode and withheld the analipril and spoke to the doctors. Today she was still recuperating and her numbers were still getting stable...but she is doing ok.

Because of the analipril she didn't do too well on her 2nd spontaneous trial and they needed to increase the rates on her vent. This morning the nurse worked on getting Grace back to the vent settings she was at yesterday morning--a rate of 12 and oxygen at 40%. Once she got there and her blood gas came back good, they tried another spontaneous trial off, but only for 30 minutes--she did good! They will do another 30 minute trial in the morning and continue them to strengthen her and prepare for extubation.

Today going to the hospital was quite hard, all I could do was cry as I looked at my beautiful baby and wonder if we are ever going to get out of there. It seems like we are stuck while others around us are improving and moving on up to the floor. Its hard because we are constantly getting nurses that have never had Grace before, the excuse is because there are sicker babies. I'm sure that is the case and I'm glad that there are nurses with such excellent levels of skill--but it makes me feel like we are getting the 'leftovers' and that Grace isn't as important as other patients. It is so hard to leave our baby in the hands of strangers and with Grace's history it is even harder--who knows what would have happened had Grace been given another dose of analipril?

This is the end of the update on Grace--please stop reading now if you don't want to hear my unedited ranting.

Twice this week we were told we would have the same nurse we had the day before and we call only to find out that we were given a completely new nurse--it isn't an easy thing to take. Its like leaving your child with a babysitter you have grown to trust and feel 100% comfortable with only to find out that she was replaced with a complete stranger that you have never even met. We are told that all the nurses are great and very capable, and we believe that but like any mother I want the best for my baby and when she doesn't get it I worry. I feel that because Gracie is starting to be weaned off her vent, she is in a very critical and terrifying place (emotionally for me and for her since she has been on the vent for 7 1/2 weeks straight) and almost by not getting a nurse that is familiar with her is putting Gracie in a risky position.
I realize that because she was so sick for so long we have had some of the best--and they are needed with others but it isn't easy and it doesn't help when no one really prepares us for the shock each time her nurse is changed. Today I was expecting the same nurse she had for the two previous nights, so I waited to call until later, when I found out she had a nurse that never had her I was so upset that I hung up the phone and wanted to throw it in frustration....

I guess I'm done rambling and ranting--I just wish that I could be up there more with my baby and look out for her and her well-being because I know she isn't getting the same care she had even a couple of weeks ago.

I've been hesitant to write until Gracie actually had the skin graft--it went fairly well yesterday. I guess the plastic surgeon said that her wound improved and looked good--he cut away some tissue and skin so that there would be viable skin to graft the cadaver skin. The surgeon then cut the skin to match the size of Grace's wound and then sutured around the area and replaced the wound vac. The plan is too let it be until Friday, then they will look at the graft and if it took, early next week its back to the OR to remove the cadaver skin and replace it from skin from Grace's upper thigh.

In the mean time Gracie is being weaned off the vent--her rate has been dropped significantly and she is handling it well. Today the doctors did a spontaneous trial off the vent, though Grace's blood gas didn't look that good, she tolerated it well. The purpose of the trials are mostly to condition her and we are still moving slow; but if she does well the goal is to extubate on Friday.

Grace is resting well and seems to be doing well. Despite all that she has been through she really is a sweetheart, she only seems to cry and get mad when she has dirty pants, needs to be suctioned, or is being bugged by the assessment the nurses have to do. Usually though she calms right down and falls back asleep or just intently stares at her mobile or the lights on her heater or even our eyes if we are there.

We love her so much and are so proud of her and all she has come through. Thank you for your prayers and thoughts in her behalf, I know that they have strengthened her and helped her endure her long and rocky journey.

Limbo

Judy one of her night nurses did Grace's nails, aren't they so pretty?

Grace is still going well--just hanging tight right now waiting for a final decision on what they are going to do about her chest wound. The plastic surgeon called me yesterday afternoon and told me that they would do the graft on Monday and leave it on for 5 days and then reevaluate to see if Grace's skin took to it. If it did, then they would take her into the OR and take skin from her upper thigh and graft that in--then cross their fingers that it would work.

When we got up to the hospital last night we weren't expecting any surprises--but we got them anyway. First off their is a new Attending on and our nurse informed us that during rounds his intentions were to start moving Gracie forward by really trying to wean her off the vent. Luckily we had a nurse that knows Grace and told him--hey you need to take it slow with her and not rush things. So no changes were made to her vent settings until around 6pm--

The plastic surgeon stopped by Grace's room and informed us that he wasn't sure about doing the skin graft. He said that he is not it will take and that he would hate for them to take her own skin and not have the graft work. But he feels that she is healing so slowly and that they need to speed the process up. So he wanted to send her to the hyperbaric oxygen chambers--basically a chamber where patients sit and breathe in highly concentrated amounts of oxygen. I think this treatment is mostly used for those suffering from carbon monoxide poisoning. But Primary Children's does not have a hyperbaric chamber in their facility, the closest one is at LDS hospital. So if Gracie did go to have the treatments, she would have to be transported every other day by the Life Flight team via ambulance back and forth. Her nurse would go with her and monitor everything but it would be a process and frankly just too much for me to even wrap my mind around doing.

The surgeon also told us that in order to undergo the treatment he thought she had to be extubated--so the Attending (who was also in the room) said alright lets start weaning her and see how she does. Me, I'm freaking out as so many questions fill my mind--the biggest is my fear that it would be too much oxygen for her to be getting. I asked if they have ever done it with Hyperplast babies and the doctors didn't know--so they were going to talk to the cardiac surgeons and see what they thought and do some of their own research as well. Our nurse gave us some information on hyperbaric oxygen treatment for us to do our own educating on the process as well. After reading the first 5 pages of the document, I was already convinced that this procedure might not be the best thing for Gracie. The article stated that there was increased complications for those that have had chest surgery and it could have adverse effects on her lungs because it could increase the risk of "pulmonary oxygen toxicity" (whatever that is, though it doesn't sound good). All I could do was pray that Jason and I would be guided to know what to do for Gracie, that the surgeons would all do the same, and together we would do what was best for Grace.

After talking to the nurse this morning, during rounds the Attending said that the cardiac surgeons do not feel that the hyperbaric oxygen treatment is something they want to do right now. Apparently there wasn't any specific reason why, just that they didn't feel comfortable with it. Whether it is the transporting her back and forth or the actual treatment I don't know yet. So currently know one knows if she will still have the skin graft on Monday or what is going to happen. But they are still working on weaning the vent--please pray for Gracie. Part of me is excited that we are working to get her extubated but a bigger part of me is scared to death--its a long road!!

Skin Graft update

I've been waiting to update on what is going on with Grace's skin graft because nothing has really been clear this week concerning the whole issue. Monday when I got to the hospital I was informed that the Plastic Surgeon came by to look at the picture of Grace's wound and he felt that it had narrowed quite a bit and that the need for a skin graft was no more. He however wanted to wait until seeing it in person on Wednesday to know for sure. So though nothing was definite I was still thrilled to hear that this was a possibility.

On Wednesday, the plastic surgeon was able to be present for the wound change and realized that the picture he had seen was deceiving and Gracie indeed would need a skin graft. His concern is that there is still so much granulation tissue that they still need to debris it and give it some more time because he isn't sure the edges are ready to accept a graft. So the tentative plan is to look at the wound today and if it looks ready she may be going back to the OR on Monday or Tuesday.

The doctors don't want to extubate her before she goes to the OR--that just seems pointless, so we are still just sitting and letting our sweet girl rest. The are, however, trying to strengthen Grace's lungs by coming down on the rate settings of the vent--she seems to be tolerating it well. So the plan is to just sit tight and wait for the skin graft, if all goes well they will immediately start the weaning process.

So we will just enjoy being able to hold her more while we are at the hospital and hope that things will go well when the time comes to have Gracie start working more.

Can you tell how comfy she is in her mama's arms? Before I held her she was wide awake and content, within two minutes of being placed in my arms she fell sound asleep!

busy week

As many of you know I am a Hall Advisor at BYU and as such this week is one of our busiest weeks of the year. We are preparing for students to move in next week and in so doing, we spend the entire week training our RAs (resident assistants). So needless to say this week has been something I have been dreading since March. I knew that trying to juggle work, Morgan, and Grace would be difficult to say the least, and it has been. Fortunately though my wonderful co-workers and managers have allowed me to take a back seat to presenting and just be present.

Anyway, though this week is crazy, hectic, and exhausting it started out with a wonderful gift and surprise. Sunday afternoon when Jason and I got to the hospital our nurse told us (with a huge smile) that she had a surprise for us---immediately I asked if we could hold Grace. Yes, indeed, our nurse asked the Attending if we could hold her (since I had been hinting at it for the last couple of days) and she didn't see any reason why not. So Jason got to hold Grace first because he knew that once Grace was put into my arms she wouldn't leave them until we had to leave. So after an hour, Jason allowed me to hold our sweet baby and I was in heaven. Grace just absolutely loved it, she slept peacefully once she settled in. After holding Gracie for two hours I had to put her back in her bed... each moment she is in my arms I am comforted and gain strength, I only hope she does too.

This morning when I got to the hospital I asked when it was possible to put her in some clothes, Grace's nurse said she didn't see why I couldn't do it now as long as the clothes had buttons and allowed for all the wires and tubes to be free. I was pleased to hear this because I brought a little shirt with me to the hospital and immediately pulled it out and had the nurse help me put it on my little sweetheart. Next time I just have to bring in something that isn't purple, though it wasn't much, the purple on the color made Gracie look bluer than she really is. It will be hard not being able to put her in purple, because I just love little girls in purple--Morgan's wardrobe was mostly purple at this age--o'well.

Getting so Big

I just wanted to post about Morgan. She is growing up so fast and getting so big. The other night she crawled out of her bed and came into our room, after sleeping with us for an hour I carried her back to her bed, before I laid her down I just held her and didn't want to put her down. I don't think anything will ever feel better and be more comforting than being able to hold my babies whether they are only weeks old or two years old!!

Staying with Grandma, Morgan has grown so much. Though she has always had a pretty good vocabulary she is just talking up a storm and sings all the time. I really can't tell you what she is singing most of time but either way it is one of the sweetest things to hear.

Today Jason's parents and I went to the zoo with Morgan and then went to the hospital to see Grace. Morgan went back but was still very hesitant and scared to touch Gracie, she doesn't understand why we can't hold her like we hold her 9 week old baby cousin. One day though Grace will be able to come home and Morgan can have her "come here" and be able to love on her more.

"Stolen Moments"

Today was a good day--Grace's diarrhea seems to have improved and subsided. Her numbers all were good throughout the day and she got a lot of rest. It really is nice to have quiet days and know that she is currently at a good place.

I don't know if many of you know much about how the PICU works, but most of the time there is one nurse to one baby. The nurse usually is in the room the entire time just leaving for breaks, meds, etc. So for the most part no matter what we are never alone with Gracie. This is hard at times because for me it is hard to really talk with Grace when it isn't just between us. So whenever the nurse leaves the room I cherish those moments because it allows me to be with my baby almost like I would be if she was home with me. I lean over and whisper to her my fears and how proud I am of her, etc. These are my "stolen moments."

Yesterday I was able to spend much of the day with Gracie--probably the last time I can do that for a while--and when her nurse went to lunch I was in Heaven. I had finally got Grace to sleep and because her room is a noisy place, the nurse closed all three doors and left Gracie and I all alone. Of course there was a nurse listening for problems, and I could grab her at any time, but to have a whole half hour to myself with Grace was just wonderful!!!

Here's a picture of Grace from today just before we were leaving for home. I just got done changing her "blowout" diaper and you can tell how good she felt when I was all done.

Skin Graft and more

I finally was able to be at the hospital to see Grace's wound while the wound vac was being changed--it looked a lot better! It is now measuring about three fingers wide (at the widest part) and about a palm size in length--sorry that isn't exact measurements, I just am estimating.

I also got to talk to a doctor from Plastics and he said that the plan is to take Gracie into surgery some time mid-week and do the cadaver graft. After waiting a week or so they will know if her own skin is ready to be grafted in, if it is then she goes back to the OR to have the cadaver skin removed and her skin grafted in. The Dr. said that they would take it from her back or possibly her thigh (if he could get a big enough piece of skin). He assured me that the operation isn't too risky because they just lay the skin on top of the wound and then sew it into place, then they would put the wound vac back on.

From what I understand they don't intend on doing anything else until her chest is better--they don't want to compromise her oxygen levels and impede her healing. So other than letting her rest, they are trying to tweak her feeds or whatever is causing her to have diarrhea--she put out 163 cc of stool yesterday in 12 hours alone! So then we face the constant see saw affect of trying to get her fluid negative even though we are giving her replacement fluid for all the stool she is putting out so that she doesn't get dehydrated. Gracie was on 22 cc on hour feeds but the doctors brought it down to 20 cc (hesitantly) to try and manage her output.

I think that is all for now--we are blessed to be in the resting point right now, because who knows how rocky the road may be when they start asking Gracie to do more. But we will cross that road when it comes.

Today

Today's procedure went well, Grace did great--luckily it was a quick and fairly easy procedure compared to all that Gracie has experienced so far. Literally, after Grace was sedated, the wound vac and dressing was removed, the area cleaned and three of the wires were snipped and pulled out with only minimal bleeding. How wonderful it is for things to go well and for her wound to be healing finally!!!

Though I still haven't had a chance to talk with the plastic surgeon, I have found out more about the skin graft. Like I mentioned yesterday, Monday the plan is to take some skin from a cadaver and see if Grace's wound is ready to accept a skin graft. If it "takes" then some time later that week they will take some of Grace's skin (probably from her upper thigh) and do a "permanent graft." Unfortunately all this has to happen one of my busiest weeks of the year (RA training).

The cardiac surgeon came in and spoke with me for quite some time and he feels that Gracie is moving in the right direction. Though I had several questions about the future and other things he reminded me that our focus needs to just be on the present--getting Grace's chest better and weaning her off the vent and getting her HOME to us. I am glad that he shares the same goal as I do and is reminding me to take things one day at a time and they will deal with complications as they come and become necessary.

It is so hard to walk the PICU floor and continually see so many babies and children suffering. For any of you that have had the opportunity to enter the PICU, I'm sure you have felt the uniqueness of it. The Spirit is there in ways I have never felt it any where else. I choose not to visit with others and enter their rooms, so all I can do is speak for Grace and her room. When you enter the Spirit is so strong and inviting, it has to be for her to be where she is after all that she has experienced.

Some Pictures

Here are some pictures of our sweet baby from today.


Gracie just sprawled out starring at her mobile that is hanging over her head.

Here she is looking at me--she wouldn't take her eyes off of me. I loved every bit of it!

I just think that this one is very sweet.

Today during my afternoon meetings at work, the Cardiac Nurse Practitioner called and informed me that they will be removing the wires in her chest that were holding her sternum together. Because the anesthesiologist will be there, it is considered surgery. They feel that by removing them they will eliminate even more risk of infection (since they are still visible from her wound) and allow for better healing. This isn't a "big procedure" but for a baby like Grace every procedure is big.

Next week then the Surgeons will reevaluate the wound and make a final decision on the skin graft. If they do do a skin graft, they will use skin from a cadaver--they don't want to cause any more wounds on Gracie that will impede her progress forward.

Also today we were moved--not very far, just to the room next door. It is still a private room and this room has two windows!!!

Update

Grace is still doing well--her wound seems to be healing and looking better every day. As of today the plan is to probably do a skin graft on Friday. I'm not quite sure how I feel about this yet--maybe after I get a chance to talk with the plastic surgeon I will not only have a better understanding of what is going on but also feel good about the operation. This will be number 7 in almost 6 weeks.

We value your thoughts and prayers and ask you to please continue them--we gain so much strength from all of you!!

Gracie Time

Sorry I haven't posted in a couple days, things are fine--I've just been preoccupied with several things and haven't had much time or energy to really devote to blogging.

Grace is doing well, at least as well as she can be doing right now. The last few days the doctors have decided that the best thing to do is not change much in how they are caring for Grace and just let her rest. The main objective is to heal her chest wound and get more fluid off of her. If they have learned anything, it's that they must be willing to follow 'Gracie time."

"All this healing makes me so sleepy."

She is waving her hands around in this one--I love that she is so alert!

Her chest wound looks better and better every day. The wound vac was removed on Wednesday and replace with these special gel-like bandages to encourage healing without causing the edges to be too moist in the process. The idea behind them is to help draw out the dead tissue faster without having to scrap away at it. This approached worked well but today while evaluating the wound, it was decided to put the wound vac back because the edges of the wound were redder than they would like. A couple days ago they sent a tissue sample out for cultures and it came back with a staff infection, but luckily they have already been treating for it.

Yesterday, the blood test that they use to show how well her kidneys are handling all the diuretics she is on came back really high, so they stopped all diuretics. As a result, the last few days she has been fluid positive (retaining too much fluid and becoming more puffy) but today they started one of the diuretics again and it is doing its job--the last time we spoke to the nurse she was only positive 12!

The Attending came in and spoke to us yesterday and reiterated the goals she had for Grace. Hopefully she will achieve these goals and be skinner (lose her puffiness) and have her wound improve enough to be able to begin thinking of coming off the vent.

Though the slowness is overwhelming at times, we are really pleased where Gracie is and hope she doesn't have any major setbacks. This child deserves to have things go well after all she has gone through!! The hardest thing is knowing that I won't be able to spend as much time with my baby as I have been blessed and privileged to do the last month (thanks family) because life must go one, I must work and get back to some type of regularity for Morgan.

Speaking of Morgan--she has been a champ this entire time. Though she loves spending time with Grandma and the rest of the family, it has been hard for her that Jason and I have not been around as much. I can't wait until she can spend more time with Gracie---I know when she can she will bond with her and won't stop asking about her. Now I'm afraid she doesn't really understand that Gracie is our baby--so we made her a little poster of various pictures of Grace and of Morgan and Grace to hang over her bed so that she can see Grace every day and recognize her (we did this with Jason's brother Chris who is on a mission and it worked great).

Hopefully Gracie will be able to come home soon and I can have my girls together at last and we can enjoy being together!!!

4 Weeks Old!!

Our little Gracie is 4 weeks old today!! It has been a very long 4 weeks, with so many ups and downs, but our little girl is pulling through and showing us that she isn't giving up anytime soon. I'm still amazed at how much love and admiration I can feel for this little sweetheart--she truly has changed my life and added to the richness and blessings I already had.

With all of Grace's surgeries and problems it has been hard to really get to know her and learn what she likes and doesn't like, but the last week and a half we have been learning. Her favorite thing is to have her head rubbed, if you're patient it almost always soothes her and her eyes roll into her head and you can tell she is just thrilled and relaxed. She also loves listening to sweet baby lullabies and just starring into your eyes. She is such a sweet and wonderful baby and I can't wait till you all can meet her and feel of her uniqueness and strength.

On a different note, she is pulling through her set back on Friday. Yesterday and today have been good days for Gracie. Her blood pressure is holding steady and she is peeing like crazy, which we need so that all of her excess fluid will come off. She still is quite puffy but looks better. She ended last night's shift at -168 and we were so excited--I don't know who was more excited me or her doctor!!

Her wound vac was changed today and the plastic surgeon and the wound team all agreed that her wound looks better. Unfortunately I wasn't there to see it for myself, but comparing the pictures does show that today it looks a little better.

Right now we are just holding tight where she is, they aren't going to ask much of her because she needs to use all of her strength and energy to heal her wound and gain weight.

Please continue to keep her in your thoughts and prayers, she is stable now but there is no telling what will happen next. Hopefully though, we will be able to see the light at the end of the tunnel and know that we are able to bring her home with us soon (though it is still a long time off).

Small Blessings

Hi everyone this is Jason, after a little persuasion from Deanna we decided that it was time for me to make a post so here it goes. First let me apologise if this is just a bunch of little random thoughts I will try to keep it some what controlled. Today has been a normal Sunday for Deanna and I except for a few exceptions, this morning I was able to participate in my nephews blessing. It was an amazing experience the spirit was strong and his dad Chad did a wonderful job.
as I sat during the sacrament I couldn't help but get a little tear in my eye wondering if I will have the opportunity to bless Grace when she leaves the hospital, or if it will have to be done here. Deanna and I made the decision before Grace was born that we wanted to wait until she left the hospital to bless her. As we have progressed and Grace has gotten older we are coming to the realization that Grace is in for a long road here and she may not get to go home anytime soon. As I sat there I got the impression that things are in Gods hands and only he knows what is best for us, along with the overwhelming feeling of peace.
I just want to end by thanking everyone who has supported us since Grace was born. We realize that we are being blessed in more ways than we can know. I especially am blessed with an amazing family, we have been staying with my Mom and Dad since we left the hospital about a month ago. They truly have been amazing in caring for us and Morgan. My brothers and sisters have also been amazing and have often dropped things with out question to help us. We also cannot forget the countless friends of Deanna who have been here and supported us. Without the support we have received we truly would not have survived the last couple of weeks.
Please continue to pray for Grace, we know she still has a long road of her but we know that with prayers and faith she will pull through

Hanging tight

We still don't know what is going on with our little Gracie, but today is a quieter day than yesterday. She still has a fever, but the tests she has had done to determine if she has an infection have all come back fine. Grace is more irritable but if we keep her calm she does ok. We are just waiting and watching our very sick but beautiful baby girl.

It's a Rocky Road

I apologize for not posting sooner, I really intended to and tried--but I was so tired last night that the few first sentences didn't even make sense so I thought I would just wait till this morning.

First of all Thursday night we got a special treat, one of the attendings came in and said that she heard we wanted to hold Grace and she didn't see why we couldn't hold her all the way. She told us that this wouldn't be a frequent thing, but that it was about time (3 weeks since we held her) and would be good of us and Gracie. It was quite the process of moving her into our arms and once she was there neither of us wanted to let her go--but unfortunately we had to put her back into her bed.

Because I only got a couple of hours with Grace I headed up to the hospital quite early. When i got here I found out that we were at full feeds on the feeding tube, the nutritional supplement was being weened down and would be off shortly, her methadone was being weened down and she was given an oral heart medicine. In addition to all of this the doctors felt it was necessary to put the wound vac on her chest to help with the healing. It still looks terrible--she is a long way from the tissue and skin repairing and healing.

Anyways, around 11am wound team came and started debring and cleaning the wound. I tried to stay and be at Grace's side, but didn't last very long. So I left to go pump and eat some lunch, when I returned the Attending and Fellow, including both of her nurses were standing around her bed. Grace's blood pressure had dropped and her CO2 levels were really elevated and her PO2 levels were slowly falling. It seemed like they tried everything to help her and nothing really made a difference. They tried giving her some extra fluid, which she normally would respond to, but didn't. They turned her methadone back up and even started her back on dopamine and her blood pressure didn't even budge. They even got a second dopamine to make sure something wasn't wrong with the first one. The only time her blood pressure went up was during the Echo or when one of the doctors would press on her tummy momentarily.

I eventually turned to her nurse and asked her how scared should I be and her response, because I didn't want her to sugar coat it was that she was scared. What a roller coaster ride to think that thinks are going fairly ok and then to hit such a rocky patch.

At around 9:30pm they eventually got her blood pressure to be steady with a mean of 45 (still lower than they want, but better and they were willing to take it). So now we are just watching and waiting. There are many other things they are concerned about--her edema is a big thing, she is so puffy that even her little ear is tripled in size. We are wondering if maybe she just has to pee all the fluid off and she will improve with less pressure on her lungs and heart. But she doesn't pee when her blood pressure is low so it is a very hard place to be at. They've reinserted a catheter to hopefully help her pee better.

She is also developing a fever which could mean another infection so they started her back up on two more antibiotics (she is on 4 again) and they are concerned about one of her heart valves leaking and two blood clots that they have found on her heart that they are watching. My poor Gracie, she is having such a rough time, but is hanging in there and being so strong. Please keep her in your prayers, she needs extra strength and support and just miracles to get her to a better place.