Tuesday, August 28, 2007

TIME TO VOTE!!!

Collin will be getting baby food today!!! What do you think we should give him first?????

1. Green beans
2. Peas
3. Carrots
4. Squash
P.S.
We're going to feed Collin tonight so hurry up and vote!

We went to clinic today!




GREAT NEWS!!!!!!! Collin’s off TPN and lipids!!!! He will now be getting fluids (sodium chloride & water) twelve hours a day. In his feeds (formula) we will have to add baby vitamins and sodium chloride. He’s also getting 3-4, 1oz bottles a day!!! The best news of all is tonight we will be trying to give him BABY FOOD!!!!! We are going to introduce baby food to him by giving him a few bites of vegetables a day!!! Collin will also be going up on his feeds by 5ml a day!!!!! While we were at the appointment I was going to take a picture of Collin and "his team" (drs) but he wet his outfit and I didn’t pack a cute enough backup outfit...sorry, maybe next time! Keep up those prayers!!! He has come soooo far but he still has a long way to go! Love you all!!!!!

We have been very blessed lately and we’re thankful and continue to ask for prayers! Unfortunately, two nights ago a small town I once thought of as home away from home was hit by a disastrous tornado. The tornado was an F-4, everyone in and around the community was effected by this devastating storm. I’ve spoken to several family members and friends, what I’ve heard is the tornado landed in town and literally caused damage to the school, hospital clinic, and EVERY house. Please take a moment out of your day to say a prayer for all of these people who now have to rebuild there community, homes, and lives. Thank You

Sunday, August 26, 2007

SOOOOO CUTE!!!!

Friday, August 24, 2007

Friday, August 24

THEY'RE HOME!!!
Thank you all for your continued prayers for our little family; Collin is doing great! I am sure Erin will update the blog with more pictures and more detailed information when they get unpacked!


Also, little Haleigh is recovering from her surgery well. Please pray that she "relearns" how to eat very quickly!

Love and blessings to all!

Wednesday, August 22, 2007

Baby Collin's getting food!

Guess who got a promotion!!! Congratulations Daddy! Matty got a call the day of Collin’s surgery letting him know he made Staff Sgt!!!! Collin tried on Daddy’s stripes! Isn’t he cute :)


Great news today, Collin’s feeds have started! He’s going to get 5ml an hour today and tomorrow they may start going up 5ml every 8hrs until he reaches his full feeds (as long as he doesn’t vomit)! We may also be going home tomorrow. One of the Drs said ok, and another wants to wait until he’s about half way through his feeds (about 26ml). Collin’s also getting a bottle four times a day and only 5ml. :) We’re hoping he’ll get to his full feeds soon so we can go home! Please continue to pray! Thank you and we love you!


Tuesday, August 21, 2007











Thank you for all of your thoughts and prayers! Collin is doing amazing!!!!! Please make sure to say an extra prayer today for Lora and Sophia as the travel back to Tucson! Also, Matty and I would like to thank Lora and Sophia for coming out and helping us this past week! (9days!)
The round thing is where his G/J tube is now draining. After surgery the bow slows down and if they don’t let it drain Collin will puke. Tomorrow he’s going to have an Upper GI ( which is where they put a barium contrast into his G tube and follow it through the intestinal track to make sure there aren’t leaks or obstructions.)if the test shows that all is well they will start feeds and eventually take the "round thing" out and replace it with a mic-key button.

Monday, August 20, 2007































Collin's doing great! We are soo happy that he's getting back to norm FAST! Here are a couple pics! Love you all :)





Friday, August 17, 2007

Friday, August 17

Today was a lot easier; Collin's catheter was taken out, as well as his nasal cannula. (Did I mention he pulled the drainage tube out of his mouth...the one that went down past his esophagus, into his stomach? Yeah, that one. That was late Wednesday night.) All I can think is, "His poor mother if he ever has to get braces!"

He was moved from the PICU into the Pediatric unit today. The nurse packed all of Collin's things onto his crib because he wasn't in it, he was being held at the time; it also made sense to move everything at once, in that big rolling bed. It was a little scary at first, but the surgeons wanted him to be held and carried. Apparently it helps the patient heal faster to get the blood flow moving, it is also not good for him to just lay in one place. Also, being the snuggler that Collin is, it is calming and comforting for him to be held when he isn't feeling well.

It was awesome and amazing to watch his daddy pick him up from grandma's arms and carry him to the new room on the next floor; mostly because no one wants to hurt Collin, but also because his dad did it with such confidence and care. Collin did not let out a peep the entire way.

Due to the highly contagious nature of his c. diff, he is in "isolation", which is the silver lining to the dark cloud of having a serious infection. He always gets his own room; his current room is a "double", so there is his crib AND a single hospital bed, plus the chair that pulls into a bed (the one his mom lived on the first month or two they were in Omaha). Now mommy and daddy can BOTH have a place to rest rather than having to "sneak" quick naps in the waiting room, in shifts.

The rooms all have clouds painted on the ceilings; Collin got a bunch of balloons from his Great Grandma R., (Grandma N's mom), and with the toys his mama brought from home, his room is very cheery and very colorful. He has Saint cards, from various family members, standing guard at the head of his crib and a unit of stuffed animals (from aunties, nanas and grandmas) guarding the low end.

Mommy brought a small (10 books strong) sampling from his home library and she even brought a cd of music from home. Everything is in it's place and mommy has made sure the room is clean, neat and cozy in their new, temporary little home.

It was wonderful to see bits and pieces of "the real Collin" shine through, finally, today. For instance, after being held for a short time, he was being laid down and he turned red with anger and howled. As soon as he was picked up again he settled down and begin to nonchalantly investigate his surroundings.

He would also spit out his pacifier and wail until it was dipped into water and placed back into his mouth, where he would suck the water off then spit it out again for a repeat.

The light reflecting off his Mylar balloons caught his eye and he turned his head, looked at them and grunted loudly as if giving his approval!

An image of his parents, both physically & personality wise; Collin is so full of "vim and vigor" that we miss it when he is lethargic and silent. Today we were able to glimpse the personality we all know and love!

I will never be adequately able to express our love and gratefulness for all of the prayers and caring you all give baby Collin and our family. Thank you; thank you; thank you!!! From the bottom of our hearts, THANK YOU!!!

Thursday, August 16, 2007

Thursday, August 16

Yesterday was a roller coaster of emotion. Collin was wheeled into surgery around 9:00 am and at 9:30 the operating room nurse called with an update; Collin was sleeping soundly and under the care of the anesthesiologist. Around 10:00, Tricia ("Operating Room Coordinator") introduced herself and explained that she would be giving us updates as the surgery progressed. She gave us all some reassuring information and put us at ease. We barely had time to eat an early lunch and start discussing the long day ahead of us when Erin was called to the waiting room phone. It was the operating room; Collin's S.T.E.P. was done and they were just waiting to get him into a recovery room!

We all looked at the clock at the same time; the operation that was to possibly have taken between 4-6 hours had only taken 2 1/2! The minutes we waited for Dr. Sudan to come out of the surgery seemed like hours. Unable to contain herself, Collin's mommy paced the length of the surgery waiting room, a stuffed animal held tightly in her arms. Suddenly she yelled across the room to Matt and I, "I think I see her!" then, "I DID see her!" and she took off to accost the poor doctor. We all met in a conference room where she gave us the amazing news...Collin's small intestine had grown to 63 cm (up from the 20 cm that were saved on the day he was born) and, through the S.T.E.P., she was able to increase it to 126 cm!! She said (with confidence) that she suspects he will lead a normal, active life with this procedure. She also expects him to be weaned off the tpn by the time he is discharged from the hospital (in 2-3 weeks) so she will take his broviac line then. We all were teary eyed and thrilled!

The euphoria lasted an hour or two, during which we had to physically hold Collin's mama so she wouldn't float off the couch. Always as cool as a cucumber, dad read a book. We waited until Tricia came out and announced Collin was in recovery and mom could go back and see him. Mommy went back and as soon as she started talking to him, Collin opened his eyes and looked at her. Then he fell back into his fuzzy wonderland. Eventually Collin was moved up to his temporary home, in the Pediatric Intensive Care Unit (PICU). This is where the roller coaster went from chugging up the hill slowly and thrillingly into suddenly spiraling down into that low part; the one where you swallow your heart and sometimes are too scared to scream.

Collin's PICU nurse, Kim, had given Collin a dose of morphine. Sometimes the morphine relaxes the respiratory system and the patient might not take a breath for a second or two, which is (literally) alarming. This has happened several times since he made it to the PICU; all we do is put a hand on his chest and call his name loudly. He usually responds with a wail, the alarm quits beeping and all is well with the world.

This particular time, a few minutes after Kim had given Collin the dose of morphine, she suctioned his throat to help him breath better. She noticed his breaths were really shallow, so she sat him up and started rubbing his back while calling his name. His mama was holding his hand, calling his name and trying to get him to take the breath when his hand went limp and he turned blue. The RN quickly grabbed a respiration bag and began to breathe for him. She instructed a technician to get a doctor and instructed another nurse to grab a medicine called "Narcan". (Narcan is the antidote to morphine.)

During the agonizing wait for a doctor (one was needed to actually "prescribe" the Narcan, because it is a narcotic) the PICU respiratory therapist, David, arrived. He took over the "bagging" and Kim continued to articulate to her co-workers the importance of getting a doctor in our room "NOW!" When she finally told the tech to "run down the hall and yell for a doctor!" I knew time was of the essence. Suddenly she reached out, hit the "Code Blue" button and then administered the Narcan. Within seconds, two very noisy things happened. The first was Collin reacted to the antidote. He began thrashing violently and screaming loudly. He was obviously VERY scared and VERY mad! (I think I can speak for everyone in the room when I say we were all VERY relieved!!)

The second thing that occurred was the response to the
"Code Blue". In hospital jargon, this means, "all hands!" and anyone available must respond to the "emergency". In less than 30 seconds there were 7 people in the room assisting Kim and Dave. Over the next few minutes, the crowd inside and outside the room grew by about 20 more staffers. The staff physicians all agreed that Kim did exactly the right thing; they also lamented the fact that a nurse (with over 21 years of experience) couldn't feel comfortable giving her patient the emergency medicine he needed. To me, Kim and Dave are heroes. There was never a moment of panic or fear in their actions or voices; consummate professionals, they calmly saved my grand baby's life and then went on with the rest of their shifts.

As I got off the roller coaster and left for the night, I again said a prayer of thanks for all of the blessings bestowed upon us. Thank God Dave was on the wing at the right time; thank God Kim was our nurse and not someone prone to panic and freak out. Thank God our little family is in the right place right now and Collin is healing so well. (And thank God they figured out the dosage so they can manage Collin's pain WITHOUT having him turn blue again!)


Our little family had a rough first night. After the excitement earlier in the day, every one's nerves were shot. In addition, the PICU is extremely busy right now, so it was very noisy all night long. No one slept very well (if at all). This morning mommy and daddy went home for a bit to rest and shower, while Grandma stayed to watch over her little angel. During that time Collin had a blood transfusion (he had none during his surgery, even though they expected he might), had his sutures checked (everything looks perfect)and did very well with all his meds. Hopefully he will be moved into his new temporary home in the pediatric unit in the next few days. Then his mommy can make her special magic and make into a bright and welcome room for Collin to heal!
Collin Angel

Wednesday, August 15, 2007

Wednesday, August 15

Lord, protect your son, Collin. Amen



Such a comfort to have so many loved ones surround all of us during stressful times such as today. I know that all of Collin's grandmas and grandpas (even the "great" ones!) and his Nana and Papa V; his aunties and uncles, and mostly precious Collin are being carried today through all of your love and prayers!

I know someday in the future we will all read back on the comments left during this time and smile at the love and care showered on our little family as they begin the next leg of this journey. Grandpa N told me last night that he is so excited for the potential of this surgery for our grandbaby and he can't wait to see how this procedure takes Collin to the next stage in his life.

As always, thank you for taking the time out of your busy day to spend time with Collin and his family. Your prayers, love and healing thoughts are felt by each of us!


Please add Baby Haleigh to your prayers; she was born to our good friends, the Hinkles, on Saturday and she is having some medical issues as well!

Tuesday, August 14, 2007

Tuesday, August 14

Today our sweet little family is busy with doctor's and laboratory appointments in preparation for the Big Surgery tomorrow morning. Although there is apprehension; how could there NOT be knowing our precious baby Collin will be having major surgery and under anesthesia for several hours? We are all thankful for this opportunity for Collin and hopeful that this is "THE" solution which will enable him to live a long and active life. Dr. Sudan has indicated that the procedure will last between 4-6 hours. Please join us in prayer and good wishes for a perfect procedure and quick, easy recovery for Collin.

The following photos are from a "Baby Collin at 5 months photo shoot" he, his mom and I did yesterday. Enjoy!

Yes, I know I am adorable!
Grandma's props are yummy!
Angel baby
Peek-a-boo!
Who loves baby? We do!

A special treat for Auntie Sophia's daddy can be found here!

Sunday, August 12, 2007

GRANDPA SIMMONS IS HERE!

Collin and his cool glasses


Isn't he cute??!??


Collin and Auntie Mallory Auntie and Collin

Look who can sit

Grandpa and Collin

Grandpa, Grandma, Collin, and Auntie

Collin and hairy arms
Collin and Daddy

Grandma and Collin

How cute!!! :)


The three Simmons men! Grandpa, Daddy, and Collin!


Grandpa came to visit baby Collin for the weekend!!! So far we've had a great time! Here are a few pictures!! Hope you all love them as much as we do!!!

Thursday, August 9, 2007

Thursday, August 9

Happy 5 Months, Big Boy!!


Here I am, cutest baby EVER!!
I'm so cute it's ridiculous!
Cutie with special prayer bear
That Pitt kid and the Cruise kid got nothing on me!
Too cute for words!

Wednesday, August 8, 2007

Wednesday, August 8

Surgery has finally been scheduled for next Wednesday, August 15th, at 8:30 am, CST. During the procedure, Dr. Sudan plans to place a
"GJ-tube" where Collin now has the g-tube. This will allow a back-flow to occur in case his intestines are too inflamed to process the feeds at first; it will hopefully alleviate some of the vomiting that Collin has endured in the past. He will have this in place for about 2-3 weeks, before they revert to the "g-tube".

Also, during the surgery, they will pull the broviac catheter line and put another in a different area of his chest. (See the entry for Monday, March 12 for more information on the "broviac catheter".) Often times patients with broviac lines will develop infections in the lines and will have to have new lines made. In Collin's case, his mom has done such a good job with his cares that they haven't had to deal with an infection there. Collin's broviac line (which he has had for almost 5 months without infection) has developed a sheath-like blood clot at the end. It allows medicines to be administered through the line, but when they try and pull something (blood sample) back out, the sheath-like clot covers the end of the line and they aren't able to draw from it anymore. The new line will ensure he gets his medicines properly AND they'll be able to do their weekly blood-draws, as well.

The doctor predicts that he should be home a week or two after surgery; she says it will take about a month for Baby Collin to get back to where he was as far as no tpn, the level of feeds, etc. We think this sounds great! To illustrate how amazing the S.T.E.P. is, Dr. Sudan previously had a patient with 50 cm of intestine going into the operation come out with 100 cm of intestines. Dr. Sudan has the highest survival rate and has done far more of these procedures than any other surgeon in the country. God surely has blessed Collin to put him in her hands at this perfect time.

Another piece of exciting news is that once Collin is fully recovered and back up to his "high point" with feeds, etc., they are planning to introduce solid food to him! (Grandma better start shopping for some cute dishes and silverware!)

As I close, (and since I don’t have any recent pictures of Baby Collin) I will toss out a belated "Happy Birthday!" to Collin's Uncle R., as well as a photo of his AWESOME, yummy birthday cake.

Cake made by Ry's little sisters

Friday, August 3, 2007

Friday, August 3

Sometime in May, after Mother's Day, Collin contracted a bacterial infection called Clostridium Difficile. Clostridium is a "bad" bacteria that lives in the intestines and is usually kept in check by other "good" intestinal bacteria. However, in patients whose immune system is compromised or are taking certain antibiotics, this bacteria can grow and cause an infection which leads to diarrhea and other intestinal discomforts. It is often called the "hospital infection" because it is easily passed from patient to patient.

At that time, the initial infection subsided; however, since the Clostridium bacteria is always present, the infection can reoccur. When Collin was hospitalized last week, he tested positive for the Clostridium Difficile (or "c. diff"). He has been on an antibiotic to kill the infection and the surgeons are waiting for a negative c. diff test result before they proceed with the S.T.E.P.

We are so thankful that every caution and care is being taken before Dr. Sudan steps into the operating room with our precious boy!

As always, I will post more information as it comes available. Please pray for Collin's Godfather, Uncle R, to have a safe trip back to North Dakota. He began driving today; will celebrate his birthday with our family in Omaha on Saturday (and spend some time with Collin and his parents) before returning to school for the fall. Our home is going to be so quiet without him; his little sisters miss him already!

Thursday, August 2, 2007

Thursday, August 2

Update: The surgery has been postponed pending a blood test. I will update as more information is available.

Today Baby Collin's parents were informed that he will undergo surgery which is scheduled for tomorrow, August 3rd. The surgery is called "STEP" (Serial Transverse Enteroplasty Procedure) and it is performed when the patient with "short gut syndrome" (which Collin has a result of losing parts of his small intestine) suffers from malabsorbtion. A description of the procedure, and an explanation of the causes requiring the procedure can be found at
this link . This diagram shows the procedure.
The Procedure

Please join our family as we pray for Collin's quick recovery and for God's hand to direct Dr. Sudan as she perfectly performs the amazing surgery which will elongate Collin's intestines.