Saturday, March 31, 2007
Friday, March 30, 2007
The “Cry Blanket”
When I was in the hospital with my son, Gus, I cried often. The nurses would come running with boxes of tissue. My tears were constant and the tissue didn’t last long so I asked for a blanket. I was brought a crib blanket which was fine…later in the day I found a small pretty blanket left for me to cry into. I’m not sure who left the blanket but it soon became known as the “Cry Blanket”. I loved this blanket and still use it often! I realized , with this blanket, that the tears of a broken-hearted mother are much too precious to fall into a mere tissue…these kind of tears need to fall into something soft and pretty. So, this is your blanket to cry into…..
You’ve kept track of my every toss and turn
Through the sleepless nights,
Each tear entered in your ledger,
Each ache written in your book.
Tuesday, March 27, 2007
Friday, March 23, 2007
- Grayson still has his ear infections but he has gained a pound!!
- Damon returned home from the Children's Hospital of Pittsburgh...for one day only! He and his mom returned due to Damon spiking a high fever. His mom says he seems to be feeling better and a new nutritional regimen has been started. Sometimes the smallest changes can make the biggest differences!
- Izzy had her dental surgery this week and all went well!! Praise God!!
See more WRs over at Judi's!!I Timothy 1:17
Now to the King eternal,
immortal, invisible, to God who alone is wise, be honor and glory forever and
I just got an update that Damon has been back in the hospital. He was home for a day and then he spiked a fever and had to return to Pittsburgh. The docs have decided that they need to take a few steps back as far as Damon's TPN...his nutrition that he gets through his central line. For Short Gut kids, this is their main way of getting calories since the lack of small bowel makes it next to impossible to absorb nutrients. Damon's lipids had been taken out of his TPN and this was wonderful news. Lipids are the fats in TPN that wreak havoc on the liver. The docs have decided to add the lipids back in...it's really a catch-22....Damon needs the lipids but at the same time those lipids are damaging his liver. So, that's what I suggest we all pray about....the lipids....that they will not destroy his liver!~
Thursday, March 22, 2007
Of course we are praising the Lord for Izzy's successful dental surgery!! I read the update her mom posted here...and I tell you, I am learning so much from this amazing mom! This post explains why Izzy had to have the dental surgery...and the post also contains her entry for Slow-Cooker Thursday! lol!! I just love that Annie, Izzy's mom, is so willing to share her family's journey. Thank You Annie!!
Fact sheet about Neurostorming
Tuesday, March 20, 2007
UPDATE~~ Izzy is back at home and doing well. Praise the Lord!!
Damon returned home a few days ago!! His mom will be administering his IV antibiotics at home and he'll continue to get better and gain weight. Continue to pray for Damon to heal and pray for his mom too...I remember when we would have to give IV meds at home and it was not fun. It wasn't terribly hard...it just seemed to mess up Gus' meds schedule and his TPN schedule. It's a lot to juggle but I am certain Damon's mom can handle it well!!
Saturday, March 17, 2007
Thursday, March 15, 2007
See that sweet little boy there standing on the sled with his big brother and mommy?? That's Damon and he is a complete cutie patootie!! Right now, Damon is in the hospital with a nasty infection so we all need to be sending up some extra prayers. Pray that his line does not have to be replaced, that he doesn't lose any more weight, and that his family will feel God's peace in this hectic time. Pray especially for his big brother, Cole. Siblings have a tough time when things like this are going...it's scary for the parents so try to imagine how it feels to someone young.
Damon is on the waiting list for a liver/small bowel/ pancreas transplant at Children's Hospital of Pittsburgh. Pete and I met Damon and his family when we shared a room during transplant evaluation.
Hopefully, tomorrow, I'll have a good news update for you all!!
If you like, you can send a card to Damon (Hiett) through Children's Hospital of Pittsburgh.
This afternoon I got a phone call from a man in Wisconsin named John. John has requested the four cans of Portagen. Great! And now here we go....that lovely grief monster has reared it's lovely head and I am at this moment bawling like a big ol' baby!! But, that's why "grief work" is hard...it sneaks up on you!! I'll be fine...I'll just lean into the pain and, more importantly, lean into God. He has always comforted me and I know He will continue to do so.
I am thankful that we were able to find a formula that Gus was able to absorb through his short little small bowel! I'm thankful that God provided this formula for us. I'm thankful that it didn't smell like Pregestimil!! And now, I'm thankful that John will be able to use these four canisters of formula....
Wednesday, March 14, 2007
"For two days, Dad and Mom stay away. I'm scared and lonely. WillBut then, I love this one,
Evan Early be okay? What if Mom and Dad forget about me?"
"Finally, Mom stumbles in the door on the third day. Her hair isI KNOW you moms out there who have lived the NICU life can relate to that line! lol!! The book ends with Evan still in the NICU. The last two pages are devoted to questions and answers.
flat. She wears the same clothes she did the last time I saw her."
Friday, March 02, 2007
Welcome to Gus' Gang!! My name is Jenny (Jenny-up the hill) and this is a blog that I have started to journal about our family ministry, Gus' Gang. My husband and I started this ministry in memory of our son Gus who passed away May 31, 2006. Gus was waiting on a liver/small bowel transplant which would have taken place in Pittsburgh. His little body just was not able to hold out for organs and he peacefully went to Heaven. We miss him terribly but at the same time we rejoice because he now is living the life he so deserved!
It is our desire to come along side others who are caring for medically fragile children and of course, those families that are grieving the loss of a child. We do this by sending quilts to children, sending out grief packages(containing Heaven by Randy Alcorn and Treasures in Darkness by Sharon Betters, a blanket, journal book and chocolates), crocheting/knitting preemie hats for local NICUs and making "buddy dolls" and quilts for local children's hospitals. Of course, the most important thing we do is pray for these precious children and for the Lord to shower grieving parents with the peace that He has showered on us!
If you know of someone that you would like a "grief package" sent to, please e-mail me with their information. The "grief packages" are free. I will keep all information confidential. Of course, please let me know if there is a child we need to be praying for....I'd love to add them to the "gang"!!