Sunday, October 31, 2010

Rest in Peace Sweetheart

On Friday we did the hardest thing any parent could do, we buried our baby. It was a heart wrenching experience and one I hope no parent has to face. We took great solace in knowing so many people were touched by Grace and offered their support to us.

After the service we requested all the guest leave the cemetery so Holly and I could bury Grace in private. We brought her into this world together and we were going to see it through to the end together. The burial was conducted in a very respectful manner with great consideration to our feelings.

After everything was done and we were left alone we knelt down in front of her grave and prayed for our baby girl. I asked all the other children in the Garden of Angels to welcome Grace into their arms and to look after her. We hope she will become part of their family and their spirits can play together.

As Holly and I knelt there looking at all the flowers around her grave we couldn't help but a notice a single butterfly make his way out of a bouquet of flowers. He sat on top of a rose for a moment and then gently floated-off circling around the flowers upon us. It was a fitting end to a beautiful service.

We're very grateful so many friends and family attended the service and offered their support. It meant so much to Holly and I. Thank you from the bottom of our hearts.

Wednesday, October 27, 2010

Monday, October 25, 2010

Funeral Arrangements

Today was a tough day. Holly and I started the morning off by sitting in Gracie's room talking. It was nice to be able to reflect about Gracie before heading out to make the necessary arrangements.

We had narrowed down the list of cemeteries to two and wanted to visit them before going to the funeral home. The first one is very well known in the area. It's off a busy street and always looked nice driving by. But after going to the area where children are buried we were immediately turned-off. First off, it wasn't serene whatsoever and secondly you could hear the loud traffic going by. Honestly, we felt it was just horrible.

The second cemetery we visited was the Sylvan Cemetery in Citrus Heights. Almost immediately we felt comfortable there. It was established in 1862 and has a very traditional feel to it. Some of those buried there date back to the Spanish American War. We met two caretakers who were very kind and took us to the Garden of Angles. This is a special area for babies that is set upon a ridge overlooking the cemetery. Nearby is a gazebo for services and visiting loved ones. We knew this was the place. After meeting with one of their consultants we went out to the area to choose her plot. At first we were discouraged at our options. But after 10 or so minutes we found a perfect spot for her at the corner of the garden. 

After making our arrangements there, all we had to do was drive across the street to the funeral home. We spent time with the funeral home director going over details. He was very helpful and made the process as easy as possible. Our hardest part was selecting a casket to our liking that met the requirements of the cemetery. We hope to have that finalized tomorrow. In the meantime, we do have the funeral arrangements established and would like to share them here. We would like to invite all those who have followed Gracie's Journey and wish to help celebrate her life. 

Remembrance Service
2:00 p.m. on Friday October 29, 2010
in the Garden of Angles Gazebo
Sylvan Cemetery District
7401 Auburn Boulevard
Citrus Heights, CA 95610

Arrangements Provided By
Reichert's Funeral Service
7320 Auburn Boulevard
Citrus Heights, CA 95610
(916) 729-2229

Sunday, October 24, 2010

Detour to Heaven

It is with great pain and sorrow that I inform you of Grace's passing on Saturday morning. I know for many this will come as a surprise. Unfortunately for us, she started to decline on Thursday.

As shared before, Grace has had many struggles with breathing. On Thursday morning I was awoken by Holly saying that Gracie wasn't breathing. I jumped out of bed, went into her room, laid her down on the changing table and proceeded to give her mouth-to-mouth resuscitation. After a few breaths she started breathing on her own. We called the Hospice nurse who came out and saw her. She checked her lungs which were clear and her overall status seemed ok. The rest of the day was good with no further problem.

On Thursday evening, Gracie and I got in the tub for bath time. As I held her Holly helped wash her. She loves bath time and was enjoying it very much. Afterwards we dressed her and prepared for an out-of-town friend coming to visit. During the visit Gracie was very engaging and enjoying being held by a new friend. After about 30 minutes we laid her down on her play mat and we sat down for dinner. A few minutes later Holly wanted to get a little wedge to put under her so she would be more upright. When she lifted her up she started to choke and spit-up. Almost immediately her color started getting pale and blue. I rushed her into the nursery and put her down on the changing table to start mouth-to-mouth. She was not responding as well as she did earlier in the day.  I had Holly call 911 while I continued to work on her. I'd get a little breath every 5 or so seconds, but not much more. By the time the paramedics arrived, a few minutes later, I got her breathing, albeit faintly. They started hooking her up to monitors and checking her. We informed them of her code status and they called the hospital for further advice. We were told they don't normally transport hospice patients to the ER, but would if we wanted. Since the ER visit last week offered little help we didn't think it would be any different this time. And by now she was breathing well enough to let them go and care for her ourselves.

Holly and I changed her and put her on oxygen in her crib. She seemed to be breathing ok for a little while. After a few hours we could hear some moisture obstructing her airway. We suctioned her out but it still continued. It was at this time we decided to put her on her side. Almost immediately her breathing was clear and unobstructed. It was around this time she fell asleep and never really woke-up again.

Holly and I slept on the floor in her room that night. She slept all night with no incidents. We continued to feed her but cut the volume back considerably. We also only gave the essential medications. On Friday morning we called and requested a Chaplin to visit us and say a prayer for Grace. Later that day the Hospice nurse came back out to see her. She felt Grace's condition had deteriorated and prepared us for her end of life. As you can image this was very hard to hear. She stayed a couple of hours and helped us with some other things including doing a memory mold of her hand and foot. Our dear friend Jamie had given us the memory mold kit when Grace was first hospitalized. We never got around to completing the project. We thought we had time.

That evening Holly and I called our friends Russ and Audrey and asked them to help us. We also asked if they would like to come over and see Grace. Without hesitation they said yes and were on their way. Grace was not doing well. Even though she was breathing ok on her side and tolerating her feedings and meds, whenever we rolled her over for a couple minutes to change her diaper her breathing became obstructed. I think it was at this time it really began to set in with Holly and I her time was coming to an end. Even though we had each other, we were scared to be alone. So we asked them to stay over that night. We also called some other close friends to come over and be with us. They were all great. They did everything for us allowing Holly and I to stay with Grace.

On Friday night Holly and I slept in Grace's room. She did pretty good over night with only a little fussiness early in the morning. Holly fed her and stayed up with her. I got up shortly thereafter and we talked about her current condition. Holly noticed her breathing was more shallow and infrequent. Around 8:30 am Holly and I were trying to decide if we should feed her at 9 and if so how much. We were both sitting in chairs next to her crib so we could caress her and talk to her. I wrapped her right hand around my index finger and we were both looking at her. At 8:44 she squeezed my finger and the most beautiful smile we had ever seen came across her face. Her grip lightened and within seconds the color in her face began to fade. Holly and I looked at each other as if to say, did you just see that. It was the most beautiful thing I have ever seen in my life. We believe that Grace saw something so beautiful and peaceful enough to let her know it was okay to let go.  What that was, we will never know. What we do know is that she did this for us and it was the greatest gift. We were so grateful she went peacefully without any discomfort.

Because of her fragile state for the last 36 hours we didn't dare move or hold her. So after she passed I picked her up and placed her into Holly's arms so she could sit and hold her. We called our friends into her room and we all knelt in front of Holly with Grace and cried. It was such an emotional time for all of us. We were so grateful to have our close friends nearby and able to share this precious time with us.

Emotions ran high for several hours afterwards. The culmination was when I wrapped Gracie up in her blanket and we all walked outside to the funeral home's hearse. I gently laid her down on the gurney and held Holly tightly in my arms. As they slowly drove away our friends embraced us as we all cried helplessly. We felt so empty and sad at our loss. We lost our precious baby who was so innocent and pure and who brought so much love to others.

I know our loss pains us greatly. But we also have great solace in knowing we gave Gracie every ounce of our love. We took the best care of her we could. I know she felt our love as we felt hers. It will take us a long time to get over the pain of our loss. But we will never forget Gracie and all she has brought us.  Our Grace was truly amazing and we are going to do everything in our power to make sure the wonderful memories of Grace live on forever.

Monday, October 18, 2010

The fork in the road

It seems like as time goes by things get harder as opposed to easier. Not so much in caring for Grace, but more so in the decisions we're having to make.

After Grace's choking episode last week Holly and I have talked a lot about it. We've been put in the position of having to decide when to prolong life and when to let nature take it's course. This is a very difficult thing for a parent to face. We love Gracie so much it pains us to even think about having to make such decisions. Yet these are the issues we're facing on a daily basis.

Today we had an appointment with her neurologist, Dr. Friederich. As usual we went in with a list of questions and he took his time in answering all of them. However, one question seemed to be more difficult for him to answer then the others. We asked him to write an order for an Apnea monitor so we could be alerted to any changes to her breathing. Surprisingly he was very reluctant to do so. Not because of the cost or any adverse effects to Grace, but more so for us.

He told us a story about another family he knew in which the wife had a seizure disorder. One night she died of SUDEP (Sudden Unexplained Death in Epilepsy) while her husband was asleep next to her. When he later learned of SUDEP he was understandably angry no one ever told him about it. He felt if he would of known he could of kept a better eye on her. It wasn't until later he told Dr. Friederich that in hindsight it was better he didn't know because he would have been constantly worried about her. I think for this reason he was reluctant to order a monitor for us. But after seeing how persistent Holly was he eventually relented and wrote an order for one.

We also talked about starting the ketogenic diet now even though she's still too young for it. We feel it might not be the opportune time to start it, but drastic times call for drastic measures. So if that means starting it a couple months earlier then it's been tested so be it. He was going to have the Kaiser group in Hayward that specializes in that diet get in touch with us to see if it would be appropriate.

Towards the end of our appointment he thought of something else and said he'd be right back. He came back a few minutes later with a handout about another rare seizure disorder called Migrating Partial Epilepsy in Infancy. It's very similar to EMEE and something we might look into further. He knows of a patient who has it in the bay area and will pass along our information to his mother. He said she's done a lot of research on it and she could be a good resource for us.

Shortly after getting home from the doctors appointment the UC Davis Hospice nurse was here. She usually comes on Mondays to check in on Grace and order any medications or supplies we need. On today's agenda was the replacement of her NG tube. We have to do it once a month and last time it took a few tries. She also had with her a medical student and the Social Worker.

Everyone was in Grace's room while we did the procedure. The nurse and I were the ones primarily working on Grace while putting it in. About halfway through the procedure Grace started to choke and stopped breathing. We pulled the tube out and I lifted her head with my hand. Immediately her color started to go pale and I could see blue showing through. I then proceeded to give her a breath of air and a few chest compressions. After a few seconds of no response I gave her another breath and could hear Holly getting upset. I then turned to the RN and said do you want to step in. She moved in picked Grace up and put her over her shoulder and slapped her back a few times. Slowly she started to breath again. We laid her back down, put her oxygen on and monitored her breathing.

After a little while we tried to put the NG tube back in and encountered no further problems. Once we checked the placement we put her back in her crib to rest. Afterwards we all migrated out to the living room to talk. It was at this time that the nurse said she was hesitate at doing the CPR since that's not her role with Hospice. This was rather alarming to us. We assumed being a nurse you're always going to be in life-saving mode, but that wasn't the case. She was very diplomatic in how she explained it, but life-saving is not hospices' role. Even though she knew Grace was choking due to the NG tube she couldn't try to revive her. But at the same time she said she would support us and assist us at reviving Grace but wouldn't be actively involved.

So as you can image this was disturbing to us. We assumed having medical professionals coming into our home to attend to Grace would be doing everything they could to keep her alive. But that doesn't appear to be the case. In a lot of ways choosing to bring Grace home under Hospice care was a death sentence. It appears we have higher expectations for Gracie than her doctors and hospice.

Clearly it's going to be up to Holly and I to decide what's best for Grace in a critical situation. Unless her brain shuts down or she stops breathing due to natural causes we're going to continue to take whatever measures are necessary to revive her. We hope we're not being selfish taking this approach, but we just can't let her die if we don't feel it's her time. It's such a tough time for us. No parent should have to live day-by-day wondering if their child is going to die and what they should do to prevent it. We just love her so much and don't want to lose her. But eventually we're going to have to make the most heart wrenching decision of our lives. I only hope we can have the strength to do what's best for Gracie.

Wednesday, October 13, 2010

Our first call to 911

Today was supposed to be a good day. Grace turned 3-months old and we were looking forward to taking some pictures this evening. The day started out fairly uneventful. Holly was at the office and I was working from home and taking care of Grace.

About an hour after Grace's 1:00 p.m. feeding I brought her into our office/guest room and put her on the bed. I like to do this so I can keep a closer eye on her and she can hear me. About half an hour later I went out to the garage to put laundry in the dryer and start a new load. After a few minutes I returned to our office. The first thing I looked at was Grace. Immediately I could see her coloring wasn't normal. As I approached I could see her face was bluish and there was spit-up on her outfit. You can only imagine the adrenalin that went racing through my veins. I immediately scooped her up and was horrified at how limp her body was. She was blue, not breathing and as limp as a rag doll. I was so fucking scared you can't even imagine.

I brought her up to my shoulder and started slapping her back to get her to start breathing. It didn't work. At this point I was beginning to think she was dead or about to die. I brought her down to my waist and cradled her in my left arm as I began mouth-to-mouth resuscitation. It wasn't working. After several seconds of this I started doing some chest compressions. In the mean time I'm calling 911. I put them on speakerphone so I could continue to work on Grace and talk (yell) to the 911 operator. In between answering her questions I continued to give Gracie mouth-to-mouth and chest compressions. After about 20 seconds she took a slight breath. You have no idea how good that felt to hear. I continued to work on her and 10 or so seconds later she took another breath. It wasn't until about 90-seconds after I started giving her CPR she started coughing, gasping for air and crying. I never heard such a beautiful sound in all my life.

Within minutes the Fire Department arrived and the paramedics were attending to Grace. By that time she was breathing on her own and didn't appear to be in any distress. They checked her out and confirmed her lungs were clear and she was breathing ok. I began to explain to them her condition and her Code status. They were very grateful for that information and said they would be sharing that information with their Captain so he can inform the other shifts. Since that engine would most likely be the one responding again it was good for them to get familiar with Grace. Around this time Holly arrived and was clearly upset. I felt so bad for her and could only image what horrible thoughts she was thinking as she raced across town to get home.

After the Fire Department left we called Kaiser and UCD Hospice. We were advised to take her to the ER so they could do an X-Ray of her lungs and check for any fluid. Sometimes fluid can get into the lungs and not be picked up by just listening.

Our time at the ER was pretty efficient and uneventful. They knew we were coming so they had a chance to review her medical records in advance. The X-Ray showed her lungs to be clear and after the examination we were cleared to go home.

We don't know what caused her to aspirate. We have a foam wedge in her crib to keep her elevated during feedings. It had been about an hour in a half after her last feeding before this happened. We will hold the Clonazepam tonight until we can talk to her neurologist in the morning. There's a chance that med could have effected her respirations. We are also discontinuing the fortifier we were adding to her breast-milk. There might be a correlation to when we started using this new one to her episodes of spitting up.

As for me, I'm taking it really hard. I can't help but think about the what-ifs. What if I took longer doing the laundry, or went to the kitchen afterwards, or any of a dozen other things I could have done before returning to the office. She could of very well died and I would of never known until finding her. Even though we have a video baby monitor and keep her close by we can't watch her every minute. And that's what makes this all so hard. We just never know what's going to happen next. All we can do is continue to love her and take the best care of her we can.

Tuesday, October 12, 2010

The Power of Words

A couple of weeks ago, we received a poem in the mail from Gracie’s Great Aunt Vickie.  She lives in Michigan, thus we haven’t seen her for a long time, but we are so thankful for her kind words and support. She has sent Gracie many gifts, but this poem was really the greatest gift of all.  Aunt Vickie said that when she wakes up in the middle of the night, and things weigh heavily on her mind, it helps her to write about them. Thus, she composed this poem for Grace at 1:45am on 9/29/10.  So, this week, Gracie asks you to write something from you heart and then give it to someone that you love.  It will make you feel all that much better.  


By:  Vickie Gunaca 
I see a beautiful baby in a picture on her site
I wish I was there to hold her, 
Even just for one night.
She’s so precious with her head full of hair
And eyes of deep blue.
All the beautiful outfits
I know that some may be from you.
It seems that one of her favorite times 
Is walking with mom and dad
And, of course, Bodie the doggy too. 
This is when she is never sad. 
You see, Gracie has so much love around her,
Holly and Brien and all the other people too 
And you can see why god has left her here,
To show her all that’s new. 
We love you Grace Elizabeth! 

Thursday, October 7, 2010

A prayer for Grace

Grace's grandma has requested everyone to say a prayer for Grace on Sunday 10/10/10 at 10:10 a.m. We hope you will join her in praying for Grace and sending those healing wishes.

Wednesday, October 6, 2010

Live action

I shot this video today so Grace's neurologist could take a look at her twitchiness. I figured I'd post it on here as well. I haven't tried uploading video to her Blog before so this is a good test. The convenience of being able to instantaneously capture activity on video and share it with her doctors and researchers has been a godsend. I primarily use YouTube and send them links to particular videos. So far the videos have been very helpful at following her seizures and diagnosing what type of seizure she is having. If this works well I'll post more in the future.

Otherwise, Grace is doing good. We had Physical Therapy at Kaiser on Monday which went well. The Physical Therapist went over some different range of motion exercises and body positioning. But most importantly we worked on Gracie's oral motor skills, which is a priority for us. Because of the NG tube there's a likelihood Grace will lose the instinct to eat. So we're working with her daily on putting her hands in her mouth as well as her bottle and pacifier.

The lack of her oral drive has become an increasing concern for us. When she was born we were instructed not to use a pacifier with her and to only give her the nipple. In hindsight, we feel we were given some bad information by some of the professionals at Kaiser. And now Gracie is suffering the consequences. So we're now trying to reinitiate the whole suck/swallowing instinct and so far it's been challenging. But we'll continue with it and hopefully over time see some improvement.

Sunday, October 3, 2010

Spa Day and a Scare

Yesterday, our friends Sarah and Audrey came over to treat Gracie to a spa day. They brought yummy spa snacks, soothing music, and showered Gracie with much love and pampering. Sarah, a devoted Catholic, prayed the Rosary for Gracie and Audrey used some energy healing practices with her. Audrey worked on opening her Chakras. These are centers of energy, located on the midline of the body. There are seven of them, and they govern our psychological properties. The chakras located on the lower part of our body are our instinctual side, the highest ones our mental side. As you can see, by the look on Gracie’s face in this picture, she very much enjoyed herself!

After her spa treatments, we gave Gracie a bath and then dressed her up for a photo shoot. She opened all of her wonderful gifts from the Children’s Wish Foundation and she was very interested in a few of the toys that played some catchy music. The one that made car noises also intrigued her! It was great to see her awake and alert during all of the days events and we got some great photos.

Later that evening I was thinking what a great day this was with so many blessings to be thankful for, mostly for her loving friends who want do to whatever they can to try help take care of her. I fed Gracie through her NG tube at nine, as usual, and she was peacefully sleeping, wiped out from the day’s events. A few minutes later I went in to check on her and noticed her stomach convulsing so I grabbed the suction expecting she was going to have a little spit up and I would just clear it out with suction. She then spit up but the secretions just kept on flowing this time, I couldn’t keep up with the suction. I yelled to Brien who came running to help lift her up so she could breathe. Her lips turned purple and then she quickly became very floppy, as she couldn’t breathe due to all the secretions that were coming so fast and even out of her nose at this point. Luckily, Brien picked her up and gave her some vigorous pats on the back, her lips returned to pink color, and she started making noises. I don’t know what I would have done if Brien hadn’t been there, I feel like I truly panicked while he stayed amazingly calm.

It’s been a rough evening. She went back to sleep for a while but then was fussy and awake again several times last night. Both Brien and I got up numerous times during the night to try and calm her down with various methods. She is finally resting peacefully now as I type and I am on my third cup of coffee for the morning! After last night’s scare, Brien and I talked about how this was really a test for us as far as figuring out what we are to do in that situation should it happen again. We decided that we both need a refresher course in infant CPR so we are going to put that on the priority list for sure. I pray every day that we won’t need to use those skills but I also know it’s better to be prepared.

So, this week Gracie asks you to do something that you have been putting off doing for a while. For us, it’s the CPR class. For you, it may be just mowing the lawn or returning a friend’s email. Whatever it is, don’t put off today what you can do tomorrow. Gracie wants you to avoid procrastination this week.