Being Mommy

Since Grace was born other than pumping and storing breast milk and sitting by her side stroking her hair and praying for her there has been very little that I could do for my sweet girl. However, slowly many of Grace's nurses have allowed me to be more 'active' in my interactions with her.

First I was able to suction out her mouth when she had too much spit in it. Then I was able to put lotion on her dry skin. Next I started taking her temperature and changing diapers. Today I even changed two stinky diapers!! Who ever thought that would be an exciting event? And the crowning event was to be able to almost hold her.

Let me explain...because she still has the breathing tube in and her wound on her chest is quite bad we can't hold her and sit in the chair with her. But our wonderful nurse tonight said that she would help us kind of hold Gracie by putting our arms under her and pulling her closer to us. So we put down the side of her little bed, slide one arm under her neck and the other under her bum and just cuddled with her. I was the happiest person alive at that moment--to have my baby in my arms again, words can not describe the joy that I felt. All I can say is that Gracie better like being held because once her tube comes out and I'm given the ok, I'll be holding her for my entire visits!!

As for where Grace is, not much has changed. We still are waiting for Grace to get all of the excess fluid off to allow for easier breathing. Plus her chest wound is not healing as well as it should be, so she is being watched closely to make sure that it is heading in the right direction and not getting worse or infected.

Update

Grace is doing ok today, yesterday she had some spontaneous trials off of the vent--she did well for the first one, however, the second two tired her out too quickly. After following her blood gases, her CO2 levels have been too high, so the rate went up from 12 to 30 (this is how many breathes the vent takes for her) to allow her lungs to expand and contract enough to exhale the excess CO2. Gracie has a lot of edema still and it is believed that the puffiness is placing too much resistance on her lungs for her to take really good breathes.


Other than that she is doing well weening off her heavy drugs and seems to be tolerating her few CCs of breastmilk. However, her wound looks really bad, the plastic surgeons want to look at it tomorrow--currently a possible skin graft is being discussed. Unfortunately I wasn't there to see it for myself so I am hoping that I will be at the hospital when they come to change the wound vac tomorrow.

In all reality, Grace is doing well for her, its a long road and we are traveling it slowly--but at least we are still traveling it!!! Gracie's nurse and I were talking about it this morning and we have seen that we can't push my little one, it is all according to "Gracie time.'

Still moving in the right direction

Grace is still moving forward despite all of her obstacles, she is now on a rate of 16 and oxygen is still at 35%. When we walked in we were surprised to see the wound vac on her chest--we were told that was a possible option to help her chest heal. Hopefully, the wound vac will work properly and quickly and our little Gracie's wounds will get better and look better. Last night when we were visiting her chest did look terrible--almost like the skin was eroding away. Our nurse this morning told us that by using the vac we are hopefully preventing the need for a skin graft.

Gracie is also completely off her dopamine and epinephrine (they are used to help with blood pressure mostly) and maintaining great blood pressure and heart rate numbers for her. She also started her continuous feeds, currently she only gets about 1 ounce over the course of 24 hours. Hopefully she will tolerate the breast milk well enough seeing that its about one of the few things I can do for my sweetie right now :)

All of these steps have worn my baby out, Jason and I were with her for about 4 hours and she slept the entire time. The only chance we had to see her beautiful eyes was when her vitals were being taken and we changed her diaper. She would let us know she wasn't happy by scrunching up her little face and breathing at a higher frequency, then withing minutes she would roll her eyes back into her head, shut them, and be out. But she deserves to just rest and relax.

Who's in charge?

If we have learned anything from Gracie within these last few weeks is that she is completely her own unique and amazing person, that seems to respond and react in ways that are just mind boggling. I don't know if the doctors feel this way, buy from what they tell us and then how Grace responds, I'm left wondering and in awe of my little fighting miracle.

As I mentioned in yesterday's blog, Gracie had gone to the Cath lab and the doctors initially couldn't find anything wrong, so they were having other cardiologists and surgeons look at the images to see if someone could find the reason for Grace's ever fluctuating oxygenation levels. So though I was taken back this morning I wasn't too surprised when Grace's nurse told me that the doctors thought that they found a place that could be stinted open a little more and perhaps this would help with her oxygen levels. The plan was that she would hopefully go back to the Cath lab on Monday if they could get her on the schedule.

But when we got to the hospital today we astonished to find out that she had been weened down drastically on the ventilator. Apparently Grace's surgeon poked his head into her room this morning and told the nurse to try coming down on the vent because he didn't think it would change her stats much. Gracie went from a rate of 34 breathes to 20 and from 80 percent oxygen to 35 percent!!! This is a great step forward, especially because her oxygenation levels continued to stay above the cutoff point!! So it seems as if she was getting too much oxygen possibly and that is why her levels were going up and down.

It sounds as if for now they won't be doing the procedure on Monday. I think they just want to watch her and see how she continues to do and if she can continue to maintain the numbers she has been having on her blood gases. But it definitely seems as if she has turned a corner and has made up her mind that she isn't going to give in! There are still a lot of obstacles that she has to conquer but Gracie is certainly moving in the right direction.

Thank you all for your many prayers, I know that they have been heard and answered.

Scratching their heads

Grace went down to the Cath Lab today around 12:30pm--like many of the other procedures she has had I and has had to leave her room I was able to walk down with her. Though I have done this several times, it doesn't get easier.

Around 3:30pm Grace's nurse called and told me that they were done, but her voice sounded different and my heart sank, I thought for sure something had happened. But she quickly assured me that Gracie was ok and came through the procedure wonderfully. We were then allowed back into the lab to look at the pictures that were taken and to speak with the cardiologist about the findings.

Basically everything looks ok, the SANO isn't compressed or obstructed, her lungs are expanding and contracting fine and seem to be receiving enough blood flow. The only thing that they found was that her pulmonary arteries are rather small, but that shouldn't be affecting her oxygenation levels. So we went into the procedure thinking that we would get answers even if it meant the worse and that they would have to open her chest again, but the cardiologists don't know what is going on because this isn't something that they would normally see. Which means now we just sit tight and wait on Gracie to progress more in her recovery--perhaps as she gets stronger she will be able to maintain consistent oxygenation levels, nobody really knows.

Tonight will be the first night that Jason and I can actually sleep more comfortably then we have in the last three weeks. We realize that our sweet Gracie is still really sick, but tonight she will hopefully be stable and be able to rest.

A busy day

Tomorrow will be a busy day for our little Gracie, she didn't end up getting the PIC line put in today because of the holiday, so that will be done tomorrow as well as the heart cath. We hope that everything goes as smoothly as they can go with very little bumps and setbacks. After speaking with Grace's nurse we realized even more how necessary the cath procedure is but also how frightening and risky of a procedure it is. The good news is that if there is anything wrong with the placement of her sano and they can repair it in the lab they will--the doctors and surgeons, like us are trying to avoid another heart surgery at this time. We don't know what time she will be heading to the lab, but please keep her in your thoughts and prayers.

It has been a long hard road for our girl and we hope and pray that it will get better for her. When I am with her I can't help but sit by her bedside and stare at her and into her eyes when they are open, I see so much fire and strength. I know that Grace isn't done fighting, but it is so hard. There are so many times where I just want to scream and rant and rave how unfair it is for my baby and others who have suffered and are suffering with the same condition. Sometimes it is so easy to lose faith and hope but then I remember to see all the progress and good things our Gracie has going for her.

Please continue to pray for our little girl that she will make it and one day we can look back at this time with gratitude for all that it taught us. There are so many that want and NEED this little one to make it.

Poor Gracie

I was hoping that today was going to be as quiet and restful of a day for Gracie as yesterday, but unfortunately it was not. The doctors and surgeons decided that that it was time that the line in Grace's neck come out to eliminate possible infection from the sight since it has been in for over two weeks. So she needed to have a PIC line put in--these are lines that are inserted for more long term care--but they couldn't get the line in at her bed, which meant that they were going to have to transport her to the 1st floor and have it done by the lab down there were they can use ink inserted into her veins and an x-ray type machine to guide the line in.

Anyway, while we were waiting for the lab to be able to fit us in, Grace's ART line stopped working. This is the line that continually monitors her heart rate and blood pressure. So the doctor attempted to fix the one in her arm to avoid inserting a new one in her foot, but was not successful. Unfortunately he wasn't successful in either of her feet or her groin, so the surgeon had to come in and use his 'x-ray glasses' to see exactly what he was doing and right a way got the line in place. The whole ordeal took four hours!!

It was so hard sitting there watching my baby go through so much and be in pain, even though she was given extra pain meds. We were so happy that when we left for the night she was able to rest and we hope she will be able to rest the entire night with little or no complications since in the morning she will be going down and getting the PIC line in since she couldn't get that done today.

Gracie's condition

I'm sorry for the delay in updating the blog, but yesterday was a very hard, trying, and long day. They took Grace around 2:30pm to take the wires out and close everything up completely, and weren't done until 4:30pm, but we weren't allowed to see her until around 5:30pm. When we finally went back, we found several doctors around her trying to stabilize her and find out why she wasn't oxygenating well enough.

After doing an echo and not finding anything, the attending mentioned that there was a chance that they would have to do a heart cath on her to see if the sano that they put in her heart was compressed. If it came down to having a heart cath done, it would be a risk just to get her down to the lab because they would have to transport her and all of her meds and vent. Plus she would be exposed to more germs which possibly could affect her infection. Then we were informed that if the sano was indeed compressed the only way to fix it would be opening her chest again and basically starting over (at least that's how we were feeling at the time).

Our nurse however informed us that sometimes this happens after surgery so maybe with time Gracie would improve. So we left for shift change at 7pm and found a place to plead with God in Grace's behalf. When we went back to the room an hour later things were improving slowly, but improving none the less. By 10pm she seemed to be steadily moving forward (slowly) and we made the hard decision to come home, having the assurance that if anything went wrong we would be called immediately. Though the surgeon told us it was going to be a long and rocky night, each time we called Gracie was doing ok. And to our delight she continued to do alright throughout today, that even our surgeon said he was pleased with where she was at and that she was doing good!!!

It was such a blessing to see her finally have a good day. Grace came off of the paralytic and I was able to see my sweet baby come back to life...have eye movement, try taking her own breathes, and eve begin to pout when things were being done that she didn't like. Grace is no why out of the woods and is still considered critically stable. but it is so nice to see her improve and rest. The biggest things she is struggling with is holding on to her oxygen levels and holding on to CO2. So we are hoping and praying for a great night, with nothing too eventfully happening.

Thank You All

We just want to let you all know how grateful we are for all of your many thoughts and prayers in our behalf---especially for our little Grace. I know that we are being blessed with the strength of your prayers. Gracie is doing ok, her stats are slowly progressing forward, today her blood pressure seemed to like the 50s which is really good for her. It did drop below the minimum 4o level a couple of times, but came back up. Her heart rate stayed in the 160s and 170s for most of the time were there and only started going up when we were leaving but it never reached the 190s!
Her cultures came back with a growth, which means that she does have an infection. She has been on several antibiotics and is starting another one today. Hopefully they have the infection under control.
Thank you all again for all of your love and support!

yesterday's surgery update

They took Grace back for surgery at 3:30pm and didn't update us until 6:oopm---again these three hours seemed like an eternity, but we got through it. Both the surgeon and the plastic surgeon came out to talk to us about how things went.



Grace did well in the operating room, she didn't need and extra blood or fluids, but because her chest is so small, there still wasn't much room to close her chest comfortably--so what the surgeons decided to do was cut some of the muscle in her ribs to "let it out" a little and then they wrapped wires around the breast bone and attached medical scissors to the wires and then thread the scissors up with a wire elastic tube that was connected to the top of the heater above her little bassinet. Confused yet? We were, until we actually saw what the doctors were describing. It was a very overwhelming sight that no one should see their 12 day old daughter go through. This was done to stretch out the sternum and relieve pressure on her heart.





In addition to this apparatus, Gracie is on a paralytic to keep her completely still and immobile, she can't blink or even attempt to breathe on her own---they don't want to risk her moving and hurting herself more or disturbing the stretching process. The doctors are optimistic that everything will stretch sufficiently by Monday, when they will attempt to allow the breast bone down and finish replacing her muscles over her bone and closing the skin again.





She is very sick and critical--but she is critically stable. Her numbers are staying within the desired parameters and she is taking small baby steps forward. So we are hoping that she will continue progressing forward and be able to move on with the next steps in her recovery.





Jason and I debated whether we should post pictures of how Grace looks right now and have decided that we will. Please be cautious as the sight is something you might not be able to tolerate as well as you may want.

Closing again

I have developed the habit of calling the hospital every morning at 3:30 while I'm pumping--this morning when I called Grace was stable but her blood pressure was rather low, even for her.



When I got to the hospital this morning I was informed that low blood pressure could be indicitive of an infection, though the test didn't show anything, the doctors don't want to take any chances and decided to close her today, instead of waiting. Normally to close a chest they bring the operating room stuff to the baby's room, but this time they are actually taking Gracie (took) her to the operating room because they are involving the plastic surgeon as well as irrigating her chest even more than what they would normally do. In order to protect her chest bone, the plastic surgeon is going to reposition chest muscles to cover the bone in order to treat and protect it from infection.



She will be very sick after the procedure and extremely critical, so prayers are needed.



I'm posting a couple of pictures of Grace with her eyes open today while she was very content.

Day of Rest

Today the doctors decided that Grace just needed to rest, which meant very limited interaction from us--She seemed so irritable and fussy today. Though we can't hear her cries, she does turn a bright violet and scrunches up her little face, I think that it is worse than hearing her scream and cry.

Luckily though they are keeping her pretty medicated so the pain shouldn't be that bad for her, or at least that is what we hope for. Today during a fussy spell as the nurse was administering some more pain medication that takes about 5 minutes to really begin working, I mentioned that Grace loved the pacifier before her surgery and that perhaps if there was a way she could suck on one, she would be able to soothe herself a little and not work herself up. So the nurse cut a pacifier in a way that allowed it to fit around her breathing tube---now I don't know if it really did help Gracie or if the medicine finally kicked in, but she was able to relax and even sucked on it. (who knows, maybe the nurse was humoring me and took the pacifier out the moment I left the room.) But it was nice thinking that finally i could help do something for my baby other than stand around helplessly as the nurses care for her every moment of every day.

So the nurses feel Grace is doing fine and hopefully will be ready to have her chest closed on Saturday.

For now...

All is well for now, or so it seems. Grace's heart was reopened and almost immediately her stats improved, along with her heart rate, and blood pressure. She looks good and hopefully will sleep all night since she basically underwent two surgeries today.

Our favorite nurse is with her tonight and told us that Grace is doing better tonight then she did the first night after her surgery. So we decided to come home to be with Morgan for her and also for our emotional well-being.

We now wait on Gracie to improve some more and hopefully in a couple days she will be ready to be closed. The good thing is that our nurse said she has never experienced having a patient who had to be reopened a second time.

Thanks again for all your prayers, I know that we have been helped and strengthened by them. We will keep updating on her progress.

Prayers needed

We were sent out of Grace's room at 3:15pm when the doctors prepared to close her chest. We were told that the procedure would take 45 minutes. An hour later, 4:15pm the nurse and then the doctor came out and told us that they were done with the closure and Grace seemed to be tolerating it ok. We were told to wait 30 minutes and then were allowed to go back and see her.

Seeing her was so hard, she looked well, but she was on a paralytic and completely out of it. The most fearful thing is that her heart rate was really high--195. The nurses and doctors were trying and hoping to keep it from reaching the 200s, but unfortunately that is where her heart rate ended up. The doctors kept a close eye on her and thought that there could be several reasons for the high heart rate. Of course one reason is that her heart wasn't ready and was too stressed out, another reason--the medicine they gave her could be attributed to the high rate and once it wore off her rate would come down. Or she was just too dry and needed to receive more fluids before her heart would relax some. At first it was this last reason that seem to be at fault because each time they injected her with more fluid her heart rate would drop back to the 170s or 180s, but the moment they stopped it jumped right back up.

After two hours they decided that it would be safest for our Grace if they reopened her chest and tried again in a couple days. So that is where we are at...we are waiting in the waiting room for them to finish taking the staples out and the shift change to be over so we can go back and see our baby.

Please pray that the grace of God will bless our sweet baby and allow her to pull through this major set back. We know she can't overcome this without the help of God and what better way to receive that then the petition of our friends and family? I hope and pray that Grace's stubbornness and fiestiness will prevail and she will bounce back even stronger than she was before.

Thank you all for your love and support. Jason and I appreciate it all.

Closing Chest tomorrow

I am amazed at how many blessings and miracles we have been able to see this week. Gracie is doing well---in all reality we haven't had any major set backs. She has progressed slowly, but keeps moving forward and tomorrow she is scheduled to have her chest closed.

So what will happen is that the operating team comes to Grace's room along with all the tools and supplies they will need for the procedure. By doing the procedure in Grace's room seems to eliminate added stress and complications. They will close her chest, remove some of the lines that are in her belly button and then insert a feeding tube through her nose that goes to her intestine. Since she hasn't had any food other than vitamins and fats through her I.V, they will start her on a small amount of my breast milk--1cc. So within 24 hours she'll have had almost an ounce. If she tolerates that well, her feeds will increase and eventually her tube will be moved to her stomach. The reason why they do this is because baby's digestive systems are very immature and those that experience major surgeries can have complications.

Though this is the next major step in her recovery, she will be very critical again. We have so many questions and fears, Will the procedure go well? Will she be able to tolerate the pressure on her heart with her chest closed? Will they have to reopen her chest once closed? Will she be able to tolerate the feeding tube? and so on. But we know what is meant to be will be and as long as we trust in Heavenly Father we will be able to get through it.

Thank you all who are praying and hoping for the best with Grace.

Post-Op Update

It has been two days since Gracie had her first surgery and she is doing well. Yesterday was a rough day; she had a hard time regulating her body's stats and oxygen levels. We couldn't talk to her or touch her because it over-stimulated her to the point of using too much energy and the nurses wanted her to use her energy and oxygen to heal. But after tweeking some meds she is doing well.

Today she wasn't as blue and a lot of the swelling went down. We were able to talk with her as much as we wanted. When we first got to the hospital she was kindof awake, though still very drugged up. The surgeons came in and irrigated her wound and talked of closing her chest, but decided to wait.

Family Pictures

Wednesday afternoon Morgan came to visit me and Grace. She had visited Gracie once before, but I wasn't there so I walked over to the PICU to see my girls together for the first time. This was a great gift and blessing because before Grace was born I didn't know when they would be able to meet.




Here baby, let me help you with that.




"oh, babyyyyy!:

"I'm going to teach you all you need to know."


"I know you have a long road ahead of you, but I'll be here for you."


"I have to go now, love you."

pictures

Gracie in the NICU waiting to be transported to Primary Children's.


In her little transporter..she took a detour so we could see her for the first time. 4 hours after she was born.


Our first family picture!



Holding her for one of the first times.

Nice and cozy in mom's arms.

Grace Marie

I'll post more pictures tomorrow. I have some really cute ones of our family and of Morgan.

Surgery day

At 6am Jason and I made the long walk down to Primary Children's PICU from my hospital room in the U of U hospital. We held our precious Gracie for the whole two hours before they came and took her down to the operating room. We have been so blessed to have been able to hold Grace as much as we have been able to, especially since we know don't know how soon we will be able to hold her again.

At 8am we kissed our little angel goodbye and left her in the hands of the surgeons and anesthesiologist and began the long wait of receiving updates and counting down the hours till she will be done. Finally at 2pm we were met by the surgeon, he told us that Gracie was done with the surgery and now in her room getting settled in. The surgery went well, she only had one "episode" where the doctors had to resuscitate her. She came off of the heart and lung machine just fine and her stats were all where they needed to be, other than her oxygen saturation levels. The doctor was very confident that Grace did well and of course told us that the next few days will be the most critical.

We then waited 15 more minutes and were able to go and see her. Jason and I went back and as we were washing our hands one of the cardiologists stopped me and told me again how well she was doing. Talking to him made me lose my focus, I glanced into the room and lost it. I bawled and my knees began to buckle, I couldn't go into the room. I went to the hallway and sat with my father-in-law and mother-in-law for about half an hour trying to calm down. Everything finally caught up to me and I couldn't hold it in anymore. I really didn't know if I was going to be able to go and see her, but eventually I was able to go in and see my precious child. Yes she was the same child we left that morning, but she didn't look the same. Her skin was now pale, her body was becoming more and more swollen and her sweet chest was now covered in bandages that were protecting her "fixed" heart.

It is amazing how quickly we fall in love with our children and how we would gladly walk through fire and suffer every hardship and trial they have to go through if it would be beneficial for them. Unfortunately we can't but we do know that our Savior does know what Gracie is going through and will be there to help her through it. It is my belief that though I can't hold and comfort my baby at this time, that Heavenly Father is showering his love upon her and she feels the comfort of his arms around her at this time.

Please keep our Gracie in your prayers, we have a long road ahead of us.

She's here!!

Sorry for the late post and sorry that we are not posting any pictures right now, we are having computer issues and so all of our pictures that are on our laptop are stuck there until we can pick up the internet server to download them to the blog.

Grace Marie Gourley was born via c-section July 7th at 4:34pm. She weighed 6lb. 11oz. and was almost 18 inches long. She has dark skin coloring like her mama and a head full of jet black hair. She is doing really well with all things considered. She is still breathing on her own and does not not need any oxygen. This is a great blessing because we have been able to hold her and love on her tons before her surgery.

Her surgery is scheduled for tomorrow morning, so please keep her in your prayers and thoughts all day tomorrow. I will post more when we have more time, right now I have spent too much time on my feet and need to get back to my room for more pain meds.

I'm a big girl now!!!

With the move we decided that it was a perfect opportunity to transition Morgan to a toddler bed. I was a little hesitant, especially with all the unexpected hecticness we will be facing in the next couple of months, but decided to do it anyway.

To our surprise she loves the bed and has slept so well in it. Morgan loves to climb into bed and proudly proclaim, "I did it!" At night she prays and then climbs into bed with her baby and Elmo, listens to a bed time song and then blows us a kiss good night and is out within minutes. Granted it has only been three nights but she sleeps longer into the night without waking and even has taken two hour naps instead of the normal one hour nap I was blessed to get her to take. Lets hope I'm not jinxing anything!

Here are a couple of her pictures asleep in her bed.

Our Move

What a busy week it has been for us....about a month ago we decided that we wanted to see if it was possible to switch areas with my job. Many of you know that I am a Hall Advisor at BYU's Heritage halls. We love the area we live in and all the people I get to work with, but for a while we thought that moving down to Wyview would be more beneficial for our family both on a personal and professional level. So we talked to managers and were given the ok that it would be a possibility--needless to say we moved this last week.

Wednesday night we had some help from our ward and got the majority of our belongings moved and today we finished moving odds and ends and cleaned the old apartment. I'm so tired!!! Moving 9 months pregnant is not an easy task!

I am pleased to say that we are now completely moved and settled in, just one more box to empty. We are loving our new place. I love that Morgan actually has a bedroom separate from us and that there is air conditioning (not the muggy and humid swamp cooler system).