Monday, May 30

Well, Collin is now taking 9 mL an hour. He is in the 4th pod, which is the quietest wing. He is getting so big and so cute! He is also very alert and loves to watch his mobile. His parents haven't heard anything new about their transfer to Omaha, but we are hopeful the paperwork will go through soon.

Friday, April 27

Apologies for not updating the blog more often, I know many of you are anxious for any piece of news. Collin does GREAT with his feedings, he drains his bottles in no time flat. He is receiving 8 mL of feeds an hour now (but translated into 16 mL via bottle every two hours). The surgeon has decided to decrease the amount of breast milk and supplement it with a predigested formula. The reasoning is the predigested formula goes through the system slower (it's harder for the body to digest) so he will not have so many bowel movements and it will help him retain the wonderful nutrients in his mother's milk.

He is now wearing cast number three (cast number two is being saved for posterity!) and you can really see a difference when the casts first come off. The foot looks really straight and "normal", after awhile it slowly relaxes back into the "club" position. We're hopeful that the cast therapy will be all that he needs to correct the foot.

Dad's pcs to Omaha is in the works. Mom and dad are currently waiting for one piece of paperwork to be finished (hopefully today) so they can fax/email the entire EFMP package to Randall AFB for consideration. Once Dad gets the ok, UNMC can register Collin within 24 hours. We are praying for this to happen quickly as the waiting gets to be draining, emotionally. Once Collin arrives in Omaha, he will be evaluated for two weeks and then the medical team will present their care plan to his parents. Dad went back to work yesterday, (he works three days on and then has three days off) so they have had another transition to go through.

Today the NICU was bustling with activity; as one Physician's Assistant quipped, "When it rains, it pours!" Collin's nurse approached to apologize for not being around to "help out" then said, "It's so great to have him mom here, she is so capable and has his cares under control." It really is amazing; not only is she doing the feeding and diaper changes, but cleaning out his mic-key tube, taking his temperature every hour and all of the cares the nurses do. The one thing I haven't seen her do is updates on the computer system, but I am sure she would do a great job at that, as well.

I will update with pictures, soon. You will be amazed at how much he grows every day!

Tuesday, April 24

Breaking news! The doctors have decided to halt Collin's feeds for two hours today in order to FEED HIM THE BREASTMILK WITH A BOTTLE!! WOOO HOOO! This is wonderful because up until now the physicians have been concerned with oral feeds (being able to control how much he gets and how quickly, etc.) If this goes well, hopefully they can begin to give him food orally in addition to enteral (directly into the tube in his stomach.)

Good news! Collin's breastmilk was increased to 7 mL an hour yesterday! With every increase (no matter how small), the percentage of breastmilk to TPN changes in Collin's favor. We are so pleased that Collin's Mommy is able to provide the healing, nurturing and life sustaining nutrients to keep him growing!

Also, Collin weighed in (not counting the cast!) at 7 lbs 1.9 oz! At this rate, we are pretty sure he's the biggest baby in the NICU right now.

His mom and dad are still working dilligently to get him accepted at UNMC and dad's pcs to Omaha. Our family in Omaha is thrilled and excited to get the opportunity to meet precious Baby Collin and his dad. They haven't lived in the same city with Collin's mom since she was a newborn herself! Lots of adventures in Omaha await the trio and their extended family. Great Grandparents N are celebrating their 45th wedding anniversary and Collin's uncle M will be graduating at the end of June...we pray that Collin and his folks are in Nebraska to celebrate these milestones with all of us.

Sunday, April 22

Today is Collin's due date! lol Because he is so much like his mom in so many ways, we figure that his coming early was just him being impatient.

Collin has a new apparatus! It is called a "Mic-Key Button" (or sometimes a "gastronomy button") and it is used instead of the gastronomy tube (or g-tube) that Collin had previously. It works like a nipple on a beach ball where you can close the lid and then push it down below the surface of the ball; in Collin's case, the "mic-key button" can sit at his skin level which will eventually allow him to crawl and lay on his stomach. It is easier to clean and more convenient for mom and dad, as well. Placing it did not take a surgery or any special procedure, the doctor merely pulled out the g-tube and inserted the "mic-key button".

Now that he is 6 weeks, two days old, Collin has longer periods of activity and longer periods of sleep. (Last night he slept for 5 hours straight; if you have been a parent of a newborn, you recognize that's a LONG time!) He continues to assert his personality and vocalize his pleasure or displeasure. He is definitely a well-loved baby and one of the favorites in the NICU.

Thank you all for continuing to read, pray and send love to Collin and his family!

Friday, April 20

Not much news to report; Collin is doing well on 6mL an hour (which is the equivalent of a teaspoon). The percentage of breast milk to TPN is about 40/60 right now. We need that to continue in a positive direction.

Things seem to be moving along with the transfer to Omaha. We will write again as soon as we know anything new.

Wednesday, April 18

*Collin's FIRST Bath*
(Tuesday, April 17)

Tuesday, April 17

Update: Collin got his FIRST bath tonight! Unfortunately because of the broviac catheter and his #2 cast they couldn't stick him in the spa bath...he got a sponge bath instead. (We asked if he "LOVED IT"; apparently not so much! lol) Although mom said he was very relaxed afterwards. Life is good!

The gift of YOUR prayers and good wishes have kept this family (Collin and his parents as well as the large extended family) safe and protected like a soft, security blanket made up of every kind thought, caring gesture, heartfelt prayer or encouraging word you offer. We are grateful for these gifts and so would like to share with you some photos of some "cherished security blankets" that keep our Baby Collin snug and warm.

The first two were made for Collin's mommy when she was a newborn, twenty-something years ago!

The first one shown was made by our treasured friend, Tammy P, who has known Grandpa N since he was a freshman in high school.

The second was made for Collin's mommy by her paternal grandma, Great Granny N.

Great Granny N. made the third blanket for her first great grandchild, Collin.

The last blanket shown was made for Baby Collin by his dad's Auntie Pat.

Made by different hands, at different points in time, with different materials and decorations; each of these was made with love and intended to provide comfort to their recipient. Thank you all for your beautiful gifts, we cherish them and you!


**Collin now weighs 6 lbs 13.8 oz. Recent blood tests came back that showed a small amount of damage to Collin's liver so the doctors are going to cycle his TPN in such a way that he'll be off it for 4 hours each day. In addition, they are giving him some medicines that will help protect his liver from further damage. This is something we have been expecting, yet it is still a little alarming. Thankfully the doctors are being proactive as far as giving his liver a break. In answer to several email questions, Collin and his parents will probably be going to Omaha in about a month, give or take a week. We'll write more on that later!**

MONDAY APRIL 16, 2007

Update: In addition to Dr. Greenfield supporting the move to UNMC 100%, Collin's breastmilk intake will be upped again tonight around midnight, to 5 mL per hour. Collin's dad will be applying for a different program than the Humanitarian PCS, which is very smart on his part. It's called "Exceptional Family Member Program" and we'll write more about it later.

We are keeping all of the people affected by the tragic murders at Virginia Tech in our prayers. God bless you all, as well.

GREAT NEWS!

Surgeon has okayed Collins' move to UNMC!

Will share more later, as you can imagine, words cannot express our emotions now.

Thank You All for your prayers!
They worked!

Oh Happy Day. :)

Saturday, April 14

Talked to Collin's Mama earlier...he now weighs 6 lbs 10.7 oz!! He has also been elevated to 4 mL of breastmilk an hour! Woo hoo!

The surgeons and NICU staff have scheduled a meeting to go over Collin's care and prognosis for this coming Monday. God willing, they will give Collin a referral to UNMC in Omaha. As always, your prayers and good wishes are appreciated!

*Special prayers* going out to some special angels who have been praying for Baby Collin and now need our help. Our beloved friend "L" has a sister who has been diagnosed with cancer and will have HER patient meeting with her doctors on Tuesday and beautiful Jasmine, a little girl surviving cancer who has just completed yet another round of radiation. God bless you all and your families!

Thursday, April 12

Collin is still on 3 mL of breastmilk and doing great. His Nana V sent him some wonderful books, which we read to him this afternoon. He smiled the entire time, loving the bright pictures.

Here are some fabulous pictures that were taken on Baby Collin's first Easter. Enjoy!

Tuesday, April 10

Today Collin began receiving .5 mL an hour more breastmilk and if everything goes as planned, they will up that another .5 mL this evening. (This will bring him to 3 mL an hour!)

The doctor also removed his first cast and is expected to put a new one on tomorrow. He seems to be doing great!

Monday, April 9

Update: We spent an hour with Collin as he slept this afternoon. The transfusion was a success, his blood count is now normal. Apparently every newborn gets anemic, their bodies aren't able to produce new red blood cells until they are about 6-8 weeks. It is normal for a pre-term baby like Collin (who has lots of blood drawn) to become even more anemic and the red blood cell transfusion gives their blood a little "boost" until they are able to manufacture the new red blood cells. Every little thing from rashes to blisters to diaper rash are reason for concern and worry for all of us. Bigger issues (like blood transfusions) that sound so serious really throw our family into a tailspin.

On a positive note, the feeds were increased to 2 mL an hour yesterday and may increase again today. So far he's tolerating them just fine!

Last evening it was determined that Collin's red blood cell count was low, so he was given a blood transfusion during the night. As soon as we know the cause of the low count or any other updates, we will let you know. As always, we ask for your prayers.

Also, today one of Collin's special angels, Tiffany Naylor, deploys for Afghanistan. She is with the 355th Maintenance Squadron from Davis Monthan AFB and will be gone for a few months. Please keep Tiffany and the Naylor family in your prayers. She is bringing her laptop computer with her and hopes to still read here and comment occasionally. God bless you, Tiffany, and Godspeed.

Easter Sunday, April 8

Let the resurrection joy lift us from loneliness and weakness and despair to strength and beauty and happiness.
Floyd W. Tomkins

Easter blessings, everyone! Collin's Mom told her Dad last night before we went to bed that Collin now weighs 6 lbs 4 oz! Nana V mentioned that soon Collin would meet his Mommy's birthweight and it looks like it will be sooner than later.

Today, after Mass, we will bring Collin's parents an Easter dinner. We will have all of our traditional foods and Collin's Mommy will prepare a delicious dessert. Although we will not be celebrating our most Holy day in the way we wish we could; we will give thanks for all of God's blessings and especially our precious and beloved Collin. We know that Collin's parents miss all of their far away family and wish we could all be together today. We will be together in spirit.

Holy Saturday, April 7

Today, when we arrived for our visit we were thrilled and touched to see Collin's mobile playing a piece by Beethoven. He was wide awake so his wonderful nurse, Sherry, made sure he wasn't bored. Small gestures like this make it so much easier to leave Baby Collin at the end of our hour, because we are assured that Collin will be lovingly cared for when his parents or other family members aren't there.

We brought him a little friend for Easter, you might see him in one of the pictures. As always the time went by so fast; Collin's multitude of facial expressions and appropriate-seeming responses to the things we say entertains us beyond description. Most of the photos we took today did not turn out because we could not control the camera being shook by our laughter.

Please enjoy!




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Good Friday, April 6

Collin is four weeks old today!

Update: Collin's Mom just called to let us know that Collin now weighs 6 lbs 2 oz! Keep on growing, big boy! We love you!!
Today the feeds resume! Woo hoo! They are starting nice and slow...1 mL an hour, we're hoping the brief rest allowed Collin's small intestine to heal more and he'll be able to digest the fluids properly.

In celebration of his 4 week mark, his mom asked his nurse if Collin could move into a crib. His wonderful nurse complied and it's pretty neat. His mom and dad went home (after dressing the crib) and brought back Collin's mobile. It has a rainforest theme and it plays classical music. The animals on the mobile are brightly colored, with big eyes (babies like that) and they are all hung at a slant so he can get a good look at them. Highly educational and quite entertaining!

Today a new neighbor moved into the NICU and there was alot of commotion. The soothing sounds of Bach and Beethoven from his mobile lulled Collin back to dreamland and possibly helped calm the nerves of the nurses as well.

It's hard to believe that he's only been a part of our family for a month, yet it has gone by so fast. Having Collin in our lives has brought so much joy to us...thank you, Collin's Mommy and Daddy, for bringing him into the world. We love you!

Holy Thursday, April 5

Update: We visited Baby Collin for a little bit in the evening. Mom and Dad left to get a special surprise (we'll have pictures later today!) and it was time for the nurse to change some tubing on Collin's broviac catheter. We held his hand as she worked, it didn't hurt him to have the tubing changed because the pieces she moved were away from his skin, but he does NOT like to have his gown opened! lol Collin is very definitely a "warm, snuggly" baby and we are relieved to note, he will most likely NOT grow up to be a nudist. We noticed a small blister on his right chest, under the tape that holds his broviac catheter. We mentioned it to the nurse who had seen it earlier in the day before it was clearly a "blister". The NICU nurse practioner (who is practically a doctor) and the NICU physician both looked at it and decided that they'll watch it to see if it gets bigger. If it does, they will pop it and culture the puss inside to see if there is a bacterial infection. They actually circled it with a pen which I thought was pretty clever although "low tech". Grandpa N suggested they draw another circle on the other side of his chest and create a smiley face. He also laughed at me because I "scan" Baby Collin every time we come to visit...I open his gown and check him out from bottom to top which is how I noticed the blister. Call me obsessed, but I just ADORE this little grandson of ours!

Day three of no feeds...Collin's temperament is good, we even coaxed some smiles out of him this afternoon! Joanna, a friend of Collin's grandparents and a nursing student, even captured a beautiful, crooked smile on camera for us.

Having him on the tpn only is probably harder on his family members than it is on Collin, he is still getting all of his nutritional needs met. We, on the other hand, feel as though we are in a race against time and we are losing. Sometimes feelings of desperation and despair overcome us and it's times like those when we need to reach out to one another and to God.

Collin's Mom, ever the trooper, continues to pump breast milk and freeze it. Baby Collin has accumulated quite a food store, which we wish he was able to enjoy! We are so proud of her, many women who have full term healthy babies don't choose to nurse even though it is the absolute best thing for their child. While Collin's Mom isn't able to nurse her precious son, she spends an hour or more every day providing Collin with the magic elixir that can sustain his life. It's probably difficult to remain dedicated to pumping when he is unable to use it right now, but she remains steadfast and faithful to her mission.

Baby Collin will be four weeks old tomorrow! We took the obligatory picture of him with his special prayer teddy bear...compare it to pictures of him taken a few weeks ago and you can really see how he has grown. In answer to a question sent to us by email, yes, Collin is now wearing clothes. It's hard to see in the photos because he is usually swaddled well; in today's pictures his gown is almost the same color as the blanket he is wrapped in. Enjoy!

Tuesday, April 3

Update: There are few things in the world that tug our heartstrings more than seeing a daddy hold his son, lovingly. When we arrived at the NICU tonight, we were greeted with that wonderful sight. It is adorable how intently Baby Collin watches his dad's face and listens when his dad speaks. It's a little different than how he is with his mommy...Collin's look and demeanor show that there is nowhere he'd rather be than snuggled in him mommy's arms when she holds him and he wears a look of pure adoration when she talks to him. We could sit and watch our little family for hours it seems. Tonight we captured several of Collin's plethora of facial expressions. Enjoy!

We have received so many private emails and phone calls asking questions about things written in the entries or inquiring about more detail, that we set up a special email account for you to use to contact us about the blog: collinshope@mail.com. Feel free to email us anytime!

Collin is still doing well. The doctors gave him a barium enema today and the preliminary results showed everything as it should be in his lower (or large) intestines. Tomorrow (Wednesday), they will do the procedure again, but instead of an enema, they will send the barium through his g-tube. This will allow them to view his small intestines on an x-ray. The surgeon had warned us previously that babies with gastroschisis always have swollen intestines, Collin's have been just a little more swollen than usual which is probably what has caused him to throw up. We think it's good that the doctors continue to be cautious with his care, and hold off on the feedings for a day or two.

His parents started the "ball rolling" as far as applying for the transplant program at UNMC. Once they receive his medical records, a board of surgeons will look them over and make a determination of whether they can accommodate Collin's needs, whether they currently have space for him and some other criteria including references from his current doctors. We pray that Collin's application is expedited and accepted. (Collin may NOT need a small intestine or liver transplant, however they are being proactive in seeking a space at the transplant center in the event he does need one.)

The next step for Collin's parents will be to have Collin's dad's military orders changed to the Offutt Air Force Base in Omaha, Nebraska. This will be achieved through what is called a "Humanitarian PCS" (permanent change of station). After Collin's dad applies for the humanitarian pcs, which is given due to medical hardships of family members of service people, a board of commanders will decide whether or not to grant it. If it is granted, the application moves up to a human resource level in San Antonio, TX. If (and when) they approve it, and if Offutt Air Force Base has room for Collin's dad in their Firefighter ranks, he will be transferred very quickly. The Air Force will pack up and move his parents to their new home.

This is very overwhelming from the perspective of someone on the outside looking in, but Collin's Mom and Dad just take each moment day by day and each step one at a time. We are proud and inspired by their strength and resolve. We(all of their parents)are lucky to have such a wonderful and capable son and daughter; Collin is lucky to have such dedicated and loving parents.

An interesting aside is that Collin's Grandpa N received a humanitarian pcs about 9 years ago and was transferred from Sheppard AFB in Texas to Offutt. (So we know it CAN be done!)

We have said, from before we were blessed with Collin's birth, that we are so grateful that Collin's Dad is in the military. The medical coverage for the heroes who defend our nation is wonderful and the paid leave that military "new dads" get is generous. Collin's care in the NICU is about $3000 a day (and that doesn't include visits from specialists like the wound specialist, the pediatric orthopedist or the pediatric surgeons who visit every day.) That is all covered by the military medical insurance, thank goodness!

Later this evening we'll visit with Collin and his parents and promise to bring you some more photos. We are so blessed and gifted in so many ways and have so much for which to be thankful; your prayers and words of encouragement carry ALL of us when things get tough or scary and we are so grateful for them. THANK YOU!

Monday, April 2

Update: Little Collin wasn't able to keep the 2 mL of mother's milk down today, so they have taken him off his feeds again. His Mom and Dad are working towards getting him accepted into the transplant program at UNMC, which is a good plan, in our opinion. Good night all, and God bless.

When a family member is ill, it affects every single person in that family. Even down to the littlest people. Collin's auntie S. (his Mom's 3 year old sister) is a good example of this. Every night before she goes to sleep, she "visits" Baby Collin via this blog. She "oohs" and "aaahs" over the pictures, squeals with delight and repeats "Baby Collin is so adorable!" or "Baby Collin is so precious!" over and over again. With our frequent visits to see him in the NICU, auntie S. has become a veteran of the waiting room/gift shop/cafeteria. Recently she had (as we all have had) an emotional reaction to stress which was like a cloud burst. She cried because SHE couldn't see or hold Baby Collin and "he doesn't even know I am here!"

We decided that she and Baby Collin needed to "meet" in the only way they can right now. "She" purchased a little teddy bear firefighter whose proceeds went to benefit the March of Dimes and we took some photos of her with it. She told it some special secrets for Baby Collin. Tonight, when we visit, we are going to show Baby Collin the picture of auntie S. with the bear, so he will know who sent it to him. Then, we'll take a picture of the bear with Baby Collin so auntie S. can feel like she is right there with them. At night, when Collin's Mommy and Daddy aren't there, "Courage" will remind Collin that he has an auntie at home who is waiting to see him and hold him and love him in person. We think that will give Collin another good reason to fight and get better soon. What do you think?

Palm Sunday, April 1

Update: Collin resumed "feeds" today at noon and is very happy about it! They started him at 2 mL an hour and will work their way up again. God bless Collin!


Thank you, Nana V, for stepping in while I was ailing! I am recovered now and fully hydrated...hopefully we'll have some new photos to add to today's entry:

Good Morning to the Trio,
Mommy says you had a good day yesterday and when she and daddy left last night, you were resting peacefully. I am continuing my Nana Brag book and have started a scrapbook. Mommy is also working on her scrapbook, has pictures of you hanging up in frames, and is working on some cross-stitching crafts.

We pray constant for you and your mommy and daddy, we wish we could be there at your side, soon. I love you very much Collin and am so proud how well Mommy and Daddy are coping with all the stress, decisions, and just being tired.

To all else reading…Collin is doing well, he is stable. His “feeds” have not been started as of late last night. However, Matt and Erin hope it will be introduced soon but more slowly. Collin is on antibodies to prevent infection due to the bowel not “pushing things threw”. Erin described it to me as if the breast milk fed earlier could become like "stagnant water" in Collin’s bowel which could breed infection. The TPN is at 100% and as Lora has stated before, the best situation would be a balance between Collin’s “feeds” (breast milk) and the TPN. Please keep praying.

Collin’s stub of a belly button fell off Friday. The nurse asked Erin if she wanted to keep if for scrap booking. Erin of course said….”Gross, no way!” Erin told me that the belly button stub has been the “grosses” thing yet. Matt, Erin and I had a discussion if this stub was something to keep. Matt figured that it really wasn’t part of Collin rather a connection between the two, so toss it. Then we started telling strange stories of what happened to the stubs when people we know keep them, ugh!

Completely off the subject, Matt and Erin were getting a few groceries for home…I told them to try Reece’s Cookies…they are the best…now they are hooked.

There are other bits and pieces of information that have occurred with Collin these past few days but I think this sums it up. Please pray for Matt and Erin for tomorrow will bring many decisions and endurance will be needed. God Bless!

Nana V