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

Thursday, March 29

Update: We visited with Baby Collin and his parents tonight, thankfully everyone (including the grandparents) was in a much better state of mind and feeling more comfortable with the inevitable (but unwelcome) occasional back step. Collin looked as adorable and perfect as ever, he fell deep asleep moments after our arrival. We discussed the fact that the wonderful hospital currently treating him doesn't have "transplants" as a specialty and that it might be in Collin's best interest to be moved to a hospital with those capabilities in case the need arises. We will be praying for wisdom and strength on his Mom and Dad's behalf because they will be making some enormous decisions soon. We have faith that his parents will do precisely what Collin needs and for that we are immensely grateful. We'll part this evening, leaving you with a photo of sweet Collin, sleeping in the light. (Notice the GORGEOUS blanket hanging on the edge of Collin's crib. It was handmade by Nana V's friend and colleague, Sue Lang.)

Oftentimes, in life, we take a step backwards in order to move forward. With Collin's rapid improvement this past week, it is upsetting and frustrating to have to share with you that he has taken a small step back. Last night, around 9:40 p.m., Collin was taken off his "feeds", that is, the breastmilk nutrition. He had spit up several times yesterday and for the time being needs to rely again on the TPN nutrition only. This will give his intestines a little rest and they will hopefully resume the feeds tomorrow or the next day. Thankfully Baby Collin's only discomfort is the crabbiness he feels at not having a belly full of "the good stuff".

Please keep us all in your prayers, especially his Mom and Dad. Every step forward makes our hearts leap with joy, you can imagine the heaviness we feel with a step back. Hopefully this step back is in preparation for many leaps ahead for our beloved Baby Collin.

Wednesday, March 28 Part II

Wow! Where to start...so much good news and so many cute stories to share. Oh, and the best thing, more pictures!

First big news, Collin got a cast put on his "lucky leg"! It was sort of a surprise because the pediatric orthopedist (the foot guy) had not visited with Collin's parents before. He walked in today while Collin's Mommy was rocking him and introduced himself. He described the procedure for applying the cast and just stood there. Collin's Mom finally asked, "Oh, so you want to do it right now?!" He did and he did. It is the tiniest little thing, very cute, but hopefully will do the trick. It extends from a little above his kneecap to the middle of his toes. The plan is to apply a different cast, once a week for about a month, each time turning the foot more. The interesting thing is that Collin uses that foot to express his pleasure, his dislikes and even his anger. When he is happy and content, the toes wiggle like little fingers...you could even hold his little foot almost like a hand. When he gets mad, he kicks that foot (and whatever is the cause of his displeasure!) It will definitely be interesting to watch Collin grow up and see how this early attribute affects him (or not!)

Second piece of good news, the doctors performed a hearing test on Collin, which determined he hears just fine. (We could have told them that, after all, we have seen Collin wince at Grandpa N's corny jokes!) They were also able to determine that Collin has not suffered any neurological damage, which again, any of his grandmothers could have told them. (He is definitely the brightest baby in the entire NICU, no, probably the whole hospital.) One of the doctors mentioned how quickly Collin has been improving. Mommy told him it was due to all the prayers coming in...from all of you!

He shows his amazing personality constantly, from choosing a "favorite" pacifier...I am NOT joking! to knowing exactly how he likes to be swaddled. The nurses have given him a couple different pacifiers (sometimes they get lost in his pajamas or in a blanket). Collin has decided that he only likes the "big boy" binky...the largest one! lol We wish the pictures showed it better, but the pacifier in the photos is HUGE compared to his little mouth.

Tonight Collin spit up a little bit and had to have his cute outfit changed. Watching Mommy and Daddy work in sync is marvelous to behold. As if they have been doing it forever, not just 2 1/2 weeks, they work as one. Of course, Collin expressed his displeasure by yelling and kicking his casted foot around. Too cute! Once his Mommy and Daddy had him cleaned up and dressed in a new sleeper, with his "big boy" binky firmly in his little mouth, Collin settled down and just watched everyone. When it was time to swaddle him, Mommy wrapped him tightly, sort of like a giant burrito. Collin let us all know how much he liked it with a serious of satisfied grunts which made his Daddy laugh out loud.

You can see the physical beauty of Collin's parents in pictures, it is obvious. What we also want you to know is that their beauty runs deep, it is not just superficial. The pride, devotion and pure love they have for each other and their baby boy is awesome. Collin is a very lucky little boy, indeed.

The cleanup begins!

The new cast unveiled.

Collin is decidedly unhappy about losing his warm cuddlespot!

Ahhh, clean and warm again.

Daddy's comforting hand, the favorite "big boy" binky...does life get any better than this?

A special moment between Mommy and Collin.

Wednesday, March 28

Update: Holy Moly, Collin has weighed in @ 5 lbs 2 oz!! (He is definitely getting "the good stuff".) The doctors have increased his intake...again...he is now receiving 5 mL an hour. This is wonderful news...as he takes in more mother's milk he won't have to rely on the TPN as much. Only a decrease of 6.9 mL an hour of the TPN will help save his liver. Someone had asked in the comments yesterday what medical options Collin's parents are looking into...if his small intestines won't work right, or he has to rely on the TPN too much, he will need transplants. We continue to pray for his continued healing.

As was described by his proud Nana V in yesterday's comments, Collin definately has a strong personality. In addition to loving attention, being held and touched, Collin loves being talked to and sung to by his family. Grandpa N thinks that Collin is a "little stinker" just like Collin's Mommy! Sometimes, when he talks to Collin, Collin will squeeze his eyes shut then slowly open one, as if to say, "Is HE still here ?!" Often, when we have been sitting quietly for a while, Collin will slowly open his eyes (raising his tiny eyebrow first) as if to make sure he's not alone. When we respond, quietly, "Yes, we're still here, beautiful boy", he smiles. (And contrary to popular belief, it is NOT gas! lol)

Numerous nurses have commented to us that he has a "feisty" or "a fighting" personality...in Collin's case, we think this is a super quality to have. He can also be the snuggliest, cuddliest baby when swaddled nice and tight in a warm blanket. As you have seen by his pictures, Collin looks like an angel when he sleeps and we know that, like his parents, he will light up the room when he smiles or laughs.

We can't wait until the day you all can meet our Baby Collin in person...until then, please continue to carry his entire family in your prayers.

Update: Collin's breastmilk intake has increased to four mL an hour...and his TPN requirement continues to decrease. Collin's new nickname is "The Urinator" as he has displayed a real gift for spraying his nurses (and those around him) and broken some NICU "long shot" records. (This is in jest, of course.) He gets a tremendous amount of fluids, and the output demonstrates that. We expect him to continue this trend of healing.

Collin continues to do well. Not only has he moved to another "pod" (wing) in the NICU, he is now getting 3 mL of breastmilk an hour. We continue to pray for miracles as his parents look at other medical options for Collin.

Here are the most recent pictures of the little family.

Saturday, March 24