To all of the loving, supportive, and caring family, friends and strangers who we have met through Gus’ World:
Thank you to each and every one of you for all of the wonderful gifts you have blessed our family with during this trying time. Thank you to everyone who sent flowers in honor of Baby Gus. We were so honored to have so many beautiful flower arrangements and plants to surround our son with. Thank you to everyone who has sent a card, made a phone call, left a message, or sent an email. Thank you to everyone who has sent us money on behalf of Gus. We are so truly blessed and appreciate your generosity. Thank you for all of the thoughts, prayers, love, and support that you have shown our family during this difficult time.
And finally, a HUGE thank you to Jamie De Long for creating, updating, and maintaining Gus’ World. Jamie had an excellent idea, worked on it tirelessly, and helped us all stay connected. We thank Jamie and Glynda so much for everything they have done for us and for the people of Gus’ World.
We have been truly amazed at the outpouring of kindness we have witnessed. We could not have made it through this year of pain, struggle, hope, and fear without the support of all of you. Gus has taught us many things but one thing he has opened our eyes to is the tremendous amount of compassion God’s people have for others. We have received words, cards, money, and prayers from people all over the US we have never even met.
We are so blessed and hope to be able to thank all of you in person someday and somehow. One thing we do promise to do is to “pay it forward” the next time we meet someone in need. We have been given so much that we hope to be able to do the same for someone else in their time of need.
Please continue to pray for our family as we still have a very difficult time ahead. God bless all of you.
Love, Griffin and Christie Beck
Proud Parents of Augustus Beck
Songs of Love is a non profit organization that creates original personalized songs, FREE OF CHARGE, for children and teens facing tough medical challenges. I found the brochure in the hospital in January when Gus was sick.
I requested a song, forgot about it, and then received it during our last stay in the "Room above the Clouds." It was amazing! They took unique things I told them about Gus, like his massive amount of blonde hair, our dog Ellie, and his nickname, "chunky monkey," and included them in the song.
If you haven't heard it, it is awesome! I absolutely love it. Yeah, they are normally written for the children but it makes my heart so happy. We played it at Gus' funeral and now Griffin and I listen to it and remember the wonderful times we had with Gus.
It has become my mission as a Music Messenger, to pass on this information to everyone I know. If you know of a sick child who would like their very own song, just go to the website, Songs of Love and request a song for FREE!!!! If you would like to donate to a great cause and help them produce a song for a sick child, you can also make a donation at Songs of Love.
You can also check them out on
youtube by searching songsoflovefdn. If you are out of the area
and would like to hear Gus' song, you can go to the Songs of Love website, click on the Family and Friends song
and ringtone download link, type in Beck and 14383, and listen to Gus' song. However, there is a
small fee to do so. Just remember it goes to a good cause! If you need more information or would like a brochure,
I have some- so just ask!
In memory of Gus: Please pass this information along to anyone and everyone you know!
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But Jesus said, "Let the little children come to Me, and do not forbid them; for of such is the kingdom of heaven." |
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Augustus Young Beck, known to all as Baby Gus, will be turning
10 months old on December 20th. During his short time on earth, he has managed to touch many lives
and will continue to do so each and every day. Gus has shown himself to be a strong fighter and
he has become a source of encouragement to us all. Our family has been blessed by so many loved
ones: friends, family, and strangers too!
Many of you have given so much to us already and we cannot thank you enough. You
have blessed us with such wonderful gifts: money, cards, rides to the doctor/therapy, a freezer
filled with food, and above all, daily thoughts and prayers! Words alone cannot tell you what this
means to us and our family.
Amazingly enough, some have asked to do even more! So by request, we have opened
an account for Gus. All donations will go towards Gus and his continued medical needs. Items include,
but are not limited to: medical and hospital bills, doctor visits and co-pays, prescriptions, medical
equipment, a larger vehicle, possible modifications to car and/or home, etc. Unfortunately, due to
regulations regarding Social Security, Medicaid, and other programs available to Gus, the account could
not be opened in his name. The account is with the investment firm Edward Jones. If you would like to
make a contribution to Gus, please send cash, check, or money order made payable to Edward Jones
to:
Edward Jones
5282 Medical Drive, Ste. 125
San Antonio, TX 78229
Please reference account number 786-10597-1-0 for Augustus Beck.
Donations can be made at anytime; both now and in the months to come. Please do not feel obligated to make a donation; so many of you have given so much already.
Once again, we appreciate your continued support. Most importantly, please continue your thoughts and prayers on behalf of our strong and courageous Baby Gus.
Gus arrived on February 20, 2007 at 6:32pm weighing in at 7 pounds 1 ounce and stretching to 20-1/2 inches. Complications at birth called for an emergency C-section and a flight to Methodist Children's Hospital in San Antonio. Gus' condition initially appeared very grave but with many prayers and the wonderful staff in the NICU he has made much progress. Please continue to keep Gus in your prayers and check back for updates as he continues to grow. Also pray for Griffin and Christie as they look forward to taking their new son home.
Updates
2/18/08 - Gus was moved into the Room Above The Clouds today. He is comfortable and is being held by his family. Please continue the prayers for comfort for the whole family.
2/17/08 - Gus was taken back to the hospital last night and is currently in the PICU. He has infections in both ears and his right lung has collapsed. He is being sedated to allow him to breathe easier. Tomorrow he will be moved to the Room Above the Clouds. This room is designed to allow more of the family to stay with him. Please continue to pray for Gus, Christie and Griffin that they will find comfort and peace.
1/29/08 - What an emotional rollercoaster. Sunday night was not a good night for Gus and things looked very critical. All the family was alerted to be prepared for the worst. But after being given a heavy pain reliever Gus was able to relax and began breathing easier. He recovered enough that Griffin and Christie were able to take him home today. One thing you can say for Gus - he makes life interesting.
1/21/08 - My strong little fighter has persevered again! We took him off the ventilator last night and transitioned him to a biPap machine. The bipap is similar to what we use at home providing him with extra O2 and pressure support so he is pretty use to it. I finally got to hold him and it felt GREAT!!!! They even mentioned coming home in a couple of days-if Gus behaves himself! Keep the prayers coming! Love ya'll!
1/19/08 - Our meeting went very well Friday. All the doctors showed up and showed tremendous care and concern for Gus and our family. Unfortunately, there are not any helpful or beneficial options left for our poor Baby Gus and even more unfortunate, according to the medical field, he will not get any better than he is right now. With that said, we know it is all in God's hands. We still have not taken him off the ventilator. His lungs are still pretty weak and we want to give him as much time to get better so he will have a fighting chance to breath on his own with minimal assistance. Our plan is to try Monday morning. I still have not gotten to hold him and we have no idea when we might be coming home. Thanks for all your love, support, and phone calls. I may not be able to answer when you call but I do get your messages and truly appreciate all your thoughts and prayers.
1/14/08 - Gus was admitted to the hospital Thursday to Intermediate care because he had a partially collapsed lung. Things took a turn for the worse and Friday night he was admitted to the ICU and placed back on the vent. He tested positive for RSV which can be very dangerous for children. Luckily, he had been receiving his RSV shots otherwise it could have been a lot worse. Because he had RSV he had been producing more secretions which caused the build up in his lungs.
Griffin and I are having to make some tough desicions regarding future care for Gus. We are hoping to have a meeting with several of his doctors and therapist to make a plan of care for the little guy. It is hard to see your son suffer so much but even harder to imagine life without him. Please keep Gus and all of his family in your prayers. We are so lucky to be surronded by a strong Christian family. "I can do all things through Christ who strengthens me."
6/16/07 - Christie called saying they were on their way home! Gus is doing good and tests reveal that he is not spitting up his food. The cause of the recent distress is the result of the secretions entering his lungs rather than being swallowed. They will be more aggressive in dealing with the secretions. Thank again for all the prayers and good wishes.
6/12/07 - Gus is doing much better. He is still in the ICU because they do not have a regular room available. He is off oxygen. The scope showed that he was not asperating his food but is asperating the secretion that he cannot swallow. They are going to work on that. Christie says that he has found his voice since he is crying quite a bit. They hope to be able to go home by the end of the week.
6/9/07 - Griffin reports that Gus has been taken off the respirator and that they are still waiting for the results of the scope into his lungs. He did have a slight infection in his lungs which is being treated with antibiotics.
Gus has been agitated and is therefore not sleeping well. This may be the result of the irritation caused by the breathing tube and hopefully will subside over time.
Griffin will report more as soon as the results of the test are given and they know what will be the next step.
Finally, today is Christie's birthday. "HAPPY BIRTHDAY!!!!"
6/7/07 - Wednesday morning we took Gus to the ER in New Braunfels because he was struggling to breath, had a heart rate above 200, and a low grade fever. We were transported to Methodist Children's Hospital in San Antonio. We are currently in the Pediatric ICU.
Our doctor is the wife of our doctor in the NICU so we have a wonderful family connection! Gus is back on the ventilator but it is more precautionary than necessary. The major concern right now is whether or not he is aspirating (breathing food/formula into his lungs). They are going to put a tiny camera down Gus' windpipe to determine if there is aspiration occuring.
Once again, please keep Gus and the doctors in your prayers. They say we may be here for a week or so. Many thanks to the Hare's for putting us and Jamie for keeping everyone up to date.
We love all of you!
Griffin, Christie, and Gus
4/17/07 - We had our first eye doctor's appointment today. They dilated and looked at Gus' eyes. The doctor said that the structure of Gus' eyes look good right now. It is difficult at this stage to tell what all he is seeing. "Wait and See." The biggest concern now is whether or not the brain can process what it sees. We, as parents have been encouraged by the improvements we see in his eyes. We pray that these improvements will continue.
The Occupational therapist will come by tomorrow to evaluate Gus and see what kind of services he will need. Thursday we go back to the surgeon's office to get his "button" placed on his stomach instead of the long feeding tube he has right now. This is not a surgical procedure, the nurse will actually insert it into the hole he already has.
Gus is weighing in at 9 pounds 10 ounces. We have attached some more pictures. Thanks again for all the thoughts and prayers. Keep them coming!
Love, Griffin, Christie, and Gus
3/30/07 - Well, Gus has been home for almost a week now and we are slowly starting to get the hang of it. We sleep, eat, and play according to his schedule but we are loving every minute of it. Having him home has been great-much better than having to drive to the hospital!
Gus is doing very well but we are still not out of the woods yet. We have several follow up doctors appointments, therapy sessions, and test to be run. We are still very concerned about the long term effects that Gus will have - mainly hearing, vision, and swallowing. Please continue to keep him and our family in your prayers.
We will not be keeping up with the website much anymore but you are more than welcome to call, write, and visit. A HUGE thank you to everyone for all the thoughts and prayers, cards and gifts, money, food, and messages. We are so thankful to have such a wonderful support group during this difficult time. Words can not express how truly appreciative we are of all of you. We are so lucky to have so many special people in our lives. Another HUGE thank you to Jamie DeLong for keeping this website up and running. It has been a great source of communication.
Gus has many fans out there and he can't wait to meet them all! We love each and every one of you! Thanks again for everything! God Bless you all!
Love,
Griffin, Christie, and Baby Gus
3/26/2007 - Christie reports that they are getting settled in and that Gus is doing his job of keeping them up all night. WAY TO GO GUS!! They have a doctor's appointment tomorrow so look for the final update and more pictures to be posted afterward.
3/24/2007 - The doctor was not going to be in on Sunday so he gave them a choice: go home today or wait until Monday. Who would want to wait until Monday??? They are going home TODAY!!. It will probably be one to two months before they venture out with Gus but Christie says visitors are welcome. She asks that you call first to avoid everyone going at once. Also if you are sick please wait until you are well before you visit. Also no children at this time please. Again let us rejoice that God continues to look after Gus and pray for Gus' continued growth and progress.
3/22/2007 - The developmental pediatrician examined Gus today and still has some concerns. Two hearing tests did not go well. There was no brain activity related to noises made. Additionally, Gus' eyes do not move or track together and he still does not have a gag reflex or sucking ability. The good news is that Griffin and Christie will spend Friday and Saturday nights at the hospital in preparation for bringing Gus home on Sunday. They will have excercises to do with Gus to help him in his continued development. Let's rejoice and continue our prayers that Gus will continue to improve in His time.
3/21/2007 - Christie reports that Gus is having a good day. He is off oxygen and breathing wholly on his own. He is now up to 60 ml of food every 3 hours which is where he should be. His eyes are open and he is moving a lot. He seems to respond to his mother's voice and his grandmother's humming. He still has the large blood build-up (cone head) but it does seem to be shrinking. Keep the prayers and good thoughts going.
3/19/2007 - Gus is looking really good today. He had
a great workout with the physical therapist and the respiratory therapist.
The doctor is increasing his feedings, decreasing his IV's, and decreasing
his dependency on the oxygen. They also keep mentioning the word "home"
which is great news for us! Tomorrow will be our 3 year wedding
anniversary and Gus' 1 month birthday! Lots of celebrating!
Love, Griffin and Christie
3/16/2007 - Griffin reports that Gus is healing well following his surgery. He was given a small amount of nourishment through the gastric tube to see if he can tolerate it. If he does they will increase the amount. Griffin also said he has seen more movement and eye reaction including eyeball movement. It is too early to determine what this may indicate. CPR classes and other social entities (home health care, etc.) are being arranged in preparation for going home. Please continue your prayers and positive thoughts on behalf of Gus, Christie and Griffin.
PS - Griffin says that Gus definitely has a cleft chin. Hope to get some pictures soon.
3/14/2007 - Gus' surgery began at 9:30am and was completed by 10:45am. The surgeon reported that all went as expected. Along with the feeding tube they also performed a procedure to help with the reflux. Recovery is expected to take 1 - 2 weeks.
3/13/2007 - Quick update. Gus' surgery has been rescheduled for 8:00am tomorrow.
3/12/2007 - Gus' surgery has been scheduled for Wednesday at 12:00pm. He will be having the G-tube and fundoplication surgeries to help with feeding and reflux. Just one more step closer to getting Gus home! He will be undergoing general anesthesia and will have several days of recuperation. Please keep the little guy in your prayers. Thanks for all the love and support! Griffin and Christie
3/11/2007 - Gus had an uneventful day. Christie and Griffin may get the schedule for the upcoming surgery tomorrow. New pictures are now available.
3/10/2007 - There is not too much to report today. The doctor placed Gus back on the nasal CPAP to assist in his breathing while they are treating his pneumonia. He really seems to be breathing easier today and I believe that he seems more relaxed. They have adjusted his feeding schedule so that he is refluxing much less today (the pneumonia he has is probably caused by the reflux).
Gus was visited today for the first time by his great-grandmother (Christie's grandmother). We'll send pictures soon.
3/9/2007 - Griffin and Christie met with a team of four doctors this morning to discuss Gus' condition. It has been decided to surgically insert a gastric feeding tube. It could be up to two weeks before the surgery is performed and then another week for recovery. It has also been confirmed that Gus has pnuemonia and will be treated with antibiotics to combat this. No long term prognosis has been made at this point so it is still a "wait and see" situation. Griffin indicated he is encouraged that a whole team of medical experts are concerned with Gus's care. Please continue your prayers on their behalf.
3/7/2007 - Gus has been experiencing some difficulty breathing. The cause of the difficulty has not been determined. He also had another EEG today but the result have not been reported yet. Griffin and Christie will be meeting with the doctor on Friday. Hopefully many of their questions will be answered.
3/6/2007 - Christie reports that Gus is now "peeking" with his eyes starting to open. Hope to have pictures soon. The speech therapist is working with him so that he can begin nursing, however, if improvement is not seen by this Friday they may surgically insert a gastric feeding tube. Continue your prayers and good thoughts.
3/5/2007 - Gus was taken off the seizure medicine today and is beginning to "wake up" more. Physical therapist began working with him to help develop sucking ability and gag reflex so he can nurse.
Please continue your prayers and thoughts and remember that visits and calls are still welcomed. Days can get rather long while waiting for the time when you can take your new child home.
3/4/2007 - Here's what is going on with Gus this weekend. The nurse removed Gus' picc line and IVs so he is getting food and medicine only through his feeding tube. Less wires...Yay! He is up to an ounce and a half of milk at each feeding but he is still having some reflux. The doctor hopes to take him off his seizure medicine tomorrow which will hopefully allow Gus to wake up more. Gus also got moved in to the "white room" because his physical condition is more stable. Great-Grandparents came down for a short visit and got to meet Gus for the first time. Daddy is going back to work tomorrow so pray for him while he is away. Thanks again for all the thoughts, prayers, and messages.
3/2/2007 - The doctor is still increasing the amount of Gus' feedings. He will be up to 30 ml this evening. He is having some reflux after he eats so the doctor requested an upper GI. Results will be given later. He is coughing and showing signs of a gag reflex which is good news. That will help when it comes time for mommy to feed baby Gus. We got to bathe and dress Baby Gus last night too. Grandparents and parents are constantly switching off holding and rocking baby Gus. Thanks to all who have written on the message board. We love you all!
3/1/2007 - Not much to report today. Gus continues to make slight improvements. The next goal is to have the IV's removed and to begin nursing. Physical therapist will begin working with him to aid him in nursing. No more EEGs or MRIs are scheduled in the near future. In a show of solidarity, Griffin has shaved so that all can see that Gus has inherited his cleft chin.
2/28/2007 - Griffin reports that Gus is continuing to do well and that he is feeding well. He has been moved from a "warmer" bed to a crib. He is also making slight noises and movements. Griffin also mentioned that he heard that Gus exhibited some pupil reaction when exposed to a bright light but this is unconfirmed. Please continue your prayers.
2/27/2007 - Gus made it through the night off the ventilator, breathing on his own. They removed the 2nd line from his umbilical cord and began feeding him milk through a feeding tube. Both Griffin and I were able to hold Gus today for a little while, which was great! Gus had an EEG yesterday and we got the results today. The EEG showed no signs of seizures but Gus was still on seizure medicine too. The EEG also showed more brain activity than the one he had on the first day. There is still blood in between his scalp and skull which makes the EEG not 100% accurate. We will just have to wait and see. That is about it for today. Just keep the prayers coming. We are seeing them work! Thank you soooooooooooo much for doing this for us. We really appreciate it! Love, Christie
2/26/2007 - At the time of update, Gus has been breathing on his own for over 13 hours. A second EEG has been done but a full report will not be ready until tomorrow. If all goes well, Christie should be able to hold Gus tomorrow. Let's continue the prayers.