4 month sign off

Reece is four months as of yesterday! Time has flown since we've been home. He's doing quite well and has been fun to watch improve all of the time. His favorite place to play is his activity gym, but sitting in the Bumbo seat is a close second. He's so strong!
Ben loves his brother and thinks it's fun to play with him in his gym area until I tell him to get off his brother...still working on being gentle. I just don't think Ben knows his own strength yet. But, he does give lots of kisses and hugs and smiles and is soaking in how to be a good big brother all of the time.
As parents, it seems strange to me that he's been home almost as long as he was in the NICU already. While we were going through our experience I remember someone told me that it's only 10 weeks of an entire life. It will seem like nothing years from now. You know, they are probably right. Our world seemed to change drastically fast during those ten weeks, but life is becoming easier as we better understand what our "normal" is now...with 2 kids!
Thanks for being our on-line friends. Thanks for praying for us and holding us up to our heavenly father throughout this process. My plan is to call this my last blog entry, print all of the entries for Reece's future reading. His life is a miracle. I feel he deserves to have his "story" in print for when he's old enough to read it.
Lots of love to you all! -Sue

doing fine

We did another stool sample test for Dr. Green this past Friday. There is still some blood showing up on the tests. The good side is: the blood cannot be seen, his tummy is still soft, there's no fever, and he's eating well. So, we're still monitoring this. Nothing's new other than I'm feeding him too much and need to cut back on that a little. I guess as a mother of a baby who had digestive problems and wasn't able to eat for so long, I feel like when he cries he may need food. You know, the diaper's dry, he's been up for a while, but maybe he's still hungry? I guess I was wrong. I need to work on getting him on a eat, wake, sleep cycle a little better. And, this should help us all. It's just getting over the mental hump that Reece really is great! He's going to be fine and "normal". Thankfully, I have a husband who has known this all along and doctors who are helping me get used to our little bundle of love. And, thankfully, we have a supportive family and friends who stick in there and still ask how they can help. YOU are an example of Christ's love! Thank you! And, from Reece to you..."I love you!"

3 months old!

Reece is now 3 months old and is doing well. His bili-levels are going down slowly and he's no longer seeing his surgical doctor. This week, we'll complete a "test" of sorts that he's been under. To give a little history... just before Reece's appointment at his Pediatrician I noticed some blood in Reece's stool. It only was visible once a day and at the same time of the day. Thus, we told Dr. Green who had us take a stool smear sample to see if it really was blood. We had to do more than one sample. The results showed that there was blood in his stool. Dr. Green asked me to cut out dairy from my diet while I'm nursing him. Unfortunately, I was still not producing enough for him and knew he needed formula. So...Reece is on a special formula for a trial period. We are going to do another smear test later this week and send in the results on Friday. Hopefully it's just that he needs to stay on this formula and he'll be fine.

Life with 2 boys is always an adventure. I know Ben loves his little brother and wants to spend his time with Reece touching his face or holding his hand or talking to him really close and loudly. I guess he thinks Reece will understand him better that way? We're working on how to talk to a baby and how to touch gently and as a mom I just want him to continue to love his little brother as much as possible. Just the sparkle in his eyes is a wonder to see when he watches Reece smile at him. It's a Kodak moment by far.

Speaking of which - I won't be adding new pictures on here unless I can get the help of my wonderful sister-in-law. And, I won't be blogging that often anymore.

However, thanks for your prayers and thanks for your support! We are so greatly blessed by you! - Sue and the boys

Home Sweet Home

It is hard to believe but after 69 days we finally have our entire family at home. Reece Gregory Nykamp was released from the hospital at 5:30pm today. We are extremely thankful to each and everyone of our friends and family that have been praying for us and supporting us in so many ways. I do not know how we would have gotten through this adventure without each and everyone of you. But most important I thank God for his faithfulness.

YEAH GOD!!!

The HIDA scan results were "normal". His bili-levels went down a little, and we're in the process of coming home!!!! It may be tomorrow because of all of the paperwork, but that's okay with me! I'm just very thankful for God's healing in my little boy's life! YEAH GOD! -Sue

Test time changed

Did you know that a child needs to be on phenabarbytol (I sound spelled that one - good ole' First Grade training) for 5 days before a HIDA scan? Well, today would have been day 3. So, the test has been post-poned until Monday morning at 8:30 AM. I'd like you to know though - God IS answering prayers - Reece's bili-levels have gone done a little. YEAH! Not that it makes that much difference to the entire plan of action, but it means a lot to us as parents. He has lost weight the last two nights. I guess with all of the liver talk I totally forgot to pray for weight gain again. I can see God's love in Reece's eyes, in his hand grip (including the thumb tucked in which he loves to do), in his coo, in his kicks, in his cries, in his squirts, in his smiles and especially in his cuddles. It's amazing to think the God who plays with the dancing fireflies by night is the same God who cuddles our little Reece and rocks him to sleep. Thanks for your prayers -Sue

Continued monitoring

No news today. He's still awaiting his HIDA scan tomorrow afternoon. He'll also have some more routine blood work done as well. Thanks for your continued prayers. -Sue

Prayers Needed

We got a call late morning telling us the GI specialists were quite concerned. Reece's jaundice levels had gone up again. They looked at all of the poopy diapers collected and at the test results from the early morning. They had decided to do a test to rule out cystic fibrosis. That test was normal. So, they talked with the surgeons and debated to do a HIDA test or go in for a liver biopsy. The conclusion was to do a liver HIDA test first and do the biopsy only if needed. The HIDA test is where they insert some kind of fluid into Reece and watch it be dispersed throughout his liver and gall bladder. There is a drug he's taking now to prepare him for this test. The test will be on Friday and the data will be reviewed on Monday by the GI doctors and surgical doctors. We wait and we pray and we cuddle the one we love!
We're thankful they are checking him closely while he's up here, but we are hoping the jaundice levels go down on their own and things are back to normal before any more problems or surgeries arise. Please pray hard for this. He's acting so wonderfully whole and we are enjoying the time we're spending with him. It's so hard to know there's more to his story than what he's showing us. Thanks for your love. - Sue

Send in the specialists

As a mom, I was hoping to say "we're coming home" in this blog, BUT we are not coming home yet. Reece continues to be a rock star with eating. He's getting anywhere from 100 - 120 mls. (that's 4 ounces!) However, his direct jaundice levels have increased, and his stools are loose. There is some good news. Last night he finally did gain weight (after 3 nights being the same weight). The neonatologists decided to seek consult from the GI specialists in order to see what they thought of his situation. A GI nurse practitioner came yesterday and saw Reece. She gave a small report and told us the GI doctor would see him today. That Dr. did come early this afternoon to see Reece. He ordered that his stools be saved until his return tomorrow and he ordered some more lab work to be done tomorrow. I guess that means he's probably not going home tomorrow yet. We continue to hope he'll gain weight again tonight. If that is still a concern, they are considering adding stuff to his milk. They also put Reece on meds. to help with the jaundice.
Sorry if this report rambles a little. I'm hopeful he'll have great test results and be able to go home soon. Please keep Reece in your prayers. And, while you're at it, please say an extra prayer for me. I'm a little disappointed it's taking so long for his system to work things out. I just want my baby home. That may sound a little selfish, but when life in the NICU takes the rollercoast down, it's an emotional struggle to go up!

full feeds?

Can't believe it's been so long since last I wrote, sorry! I guess the excitement of moving his feeding pace up and the ability to get some breastfeeding in made me forget. Yes, our little guy has been progressing well. Today they increased his feedings rate again. Their goal is to get his IV out by tomorrow! I know he's had a very loose diaper though already. So, I'm not sure it's all going to happen. BUT, it's possible!
Reece is still jaundice as I told you on Monday. They did all of the tests they thought were necessary and found that his liver is functioning very well. His blood work shows it's just what they think it is and the jaundice will decrease in time...possibly 3-4 weeks from full feedings. We're not sure if this means a longer stay or if they send him home already?
I don't know if you can tell from reading this, but the full feedings idea has gotten us very excited and hopeful that they may talk about going home sooner than later. Haven't heard a doctor tell us the word home yet, but we're hoping it's coming.
Thanks for praying for his feedings to go well. 100mls is his full feed - amazing! He'll be given that by tonight! REALLY Amazing! I'll try to let you know how it goes tomorrow. -Sue

8 weeks today

Reece is now 8 weeks old. He's doing well. They have increased his feedings again today. Now, he's up to 38mls. per 3 hours. He had a PIC line put in a few days ago and the line has gone out a little. So, now it's a peripheral PIC line and will hopefully last a while. I actually got to soothe him during that process and was happy to help out in my hat and mask. It was fun! I don't know if you've seen our son in a while, but he continues to be very yellow in color due to jaundice. It's a different form than that which you get as a normal baby. It's called "direct" jaundice. And, it's due to him being on TPN/having bowl problems. Well, at least they think that's the reason. The doctor has actually ordered some tests just to be safe. He doesn't foresee anything coming up, but thought it would be good to rule things out. So, please pray there are no problems that come out of these tests. Pray in thanksgiving for his feeding schedule...it's gone up every day thus far - a true answer to prayers and an extreme blessing! Thank you for loving our family with your support and prayers. We appreciate you!

Sunshine?

We were happy to have sunshine/clouds but warm temps today for the Marchforbabies. It was a lot of fun and I may even try it again next year. Thankfully, we got finished before it rained. And, we were able to raise some money for a great cause. Thanks for the donations!
Reece is doing well. He went up on his feeds yesterday as well as today. He's a an all time record...22mls! He's never had this much food - EVER! It's an exciting day and we hope it's just a small part of bigger things to come. Thanks for your prayers!
"Blessed be the name of the Lord
Blessed be the name
Blessed be the name of the Lord
Blessed be His glorious name!"

All smiles

Oh the smile of a little baby...it lights up my life! Add a coo or two and it's sweet bliss. I am so very thankful Reece is in good spirits. Oh, he has his moments of gas/bowel pain when having a BM, but I can only imagine how that must feel in his little body. :-) He's now up to 10mls. for his feedings and the staph infection was the "good" strain. No isolation! YEAH! He's being treated with anti-biotics and the first cultures have shown they are working. I can't tell you how nice it is to play with him and see him interact. He's a joy and I'm very thankful God has been healing him so quickly. Thank you for praying for our son. We send praises today!

Walk for Babies

As BJ and I have been up at the NICU, we have been in awe of the many babies whose lives are touched each and every day. Currently, there are 110 babies on their census! That's 20 more than the 90 "limit". However, they don't turn anyone away. Isn't that great?
One of the organizations that works closely to the Helen DeVos Children's hospital is the March of Dimes. I know it's short notice, but this Saturday there is a walk for the March of Dimes that I'm going to walk in. If you're willing to donate to this wonderful organization, please bring a check or money to our house by Saturday at 8 AM. (Payable to March of Dimes). Or, you can go on-line to marchforbabies.org and give under my name (suenykamp). I'd love to have your support!
Not sure where your money will go? Well, it will go to fund important research and programs that help moms have full term pregnancies and babies begin healthy lives. And, it helps provide information and support to families whose babies were born too soon or were sick. Personally, BJ and I have been blessed by their continuous support through their rep, Amy. She comes around often and listens and chats and helps us network with other parents too. She's a great asset to our "family" up here.
Please help me spread the word to those who may not read this and try to support it. Thanks!

cultures

Not sure why a child can get sick quickly, but cultures seem like they take forever to grow! Okay, so I'm a little sick of playing the waiting game. Sorry. But, so far we know he has some kind of staph (spelling?) infection. Not sure if it's the bad strand or the easier to treat strand. We're praying it's the easier to treat strand because if it's the "bad" strand he may have to go into isolation. The funny thing is, Reece looks and acts very healthy! He's cooing and holding is head up again. It's like he's back to his pre-surgery self as far as attitude is concerned. We can thank God for that! He's also started to eat again. Although it's only a teaspoon, it's at least a beginning. We are thankful for that too. The small baby steps mean so much while we wait.

Infection

Reece has developed an infection. I did not write yesterday because all of the things going on were tests, tests, and more tests. What brought it on? Well, he had a fever for a few days which led to the first round of blood tests. These showed that there was some kind of infection going on, so more tests were ordered. He had blood and urine cultures taken. At this point they also began hitting him with 3 different anti-biotics. His fever did go down with the anti-biotics. The cultures take at least 24 hours to show any initial results. This morning, we found out the cultures did grow something (I cannot remember what it is called). The doctors recognized it as an infection in his PIC line. Fortunately, the anti-biotics are the best way to treat it. Now, they continue to wait until the 72 hours are through and they are able to tell EXACTLY what is wrong. Tomorrow morning they are going to take more samples to see if the anti-biotics are working.
I hope that made sense, but it all boils down to the fact that he has an infection in his PIC line, they are fighting it with anti-biotics, and they will be checking to see if the medication is working by doing more blood cultures tomorrow.
On another thought, Ben is not feeling well. Last night, he threw up at Erica's house. Bless her for taking such good care of him. She even took him home for us and we came home early to be with him. He did pretty good, but none of us slept well. Right now he's napping and I'm glad he seems to be feeling better. Neither BJ or I went to the hospital today. It's a first for me. Not easy...let me tell ya. But, I just can't bring the germs to the NICU. As long as Ben's feeling well, I plan to go tomorrow to see Reece. I think I'll wear a mask just to be on the safe side.
Thanks for reading and for praying. God can heal and we are in awe of His love for our family every moment of every day.

Zzz's

Okay, so in the last blog I think I was having a little "woe is me" moment. Sorry. Since we have been holding him this afternoon he's slept very well. In fact, we hope it's not going to make the night nurses have a struggle, but we've loved his quiet, calmness. BJ says it's daddy's touch. I say it's my touch, and Grandma Grace is hoping to have some time holding him so it's her touch too. Thanks for the prayers and send a few praises God's way for being our faithful friend. Lots of love - Sue

Pain

It's been a long night and morning for Reece. He's finally had a stint of sleep (3 hours) where he seemed comfortable and not agitated. Last night and this morning he was very restless and ornary and yet didn't want to be cuddled (very unlike him). Obviously, he's in pain and hungry (both or one or the other...not sure). It's the first time in a while where I came up to the hospital and got a negative report from the nurse. As a mom, it's so hard to hear he's hurting when I just want him to feel good. I know there's a process for everything and he's getting good care, it just hasn't been the best of mornings for him. I'm praying this afternoon is better.
They did take his suction off and are checking to see how he digests the stomach fluids. This is the next step in the process towards food. They still haven't talked food yet. We're just praying God can bless him with healing sleep. Peaceful, comfortable, content, and powerfully healing rest that can only be found in our Savior's healing hands.

YEAH POOP!

The nurse "went in" to give Reece some medicine "down there" and by doing that ended up with poop all over her gloves! His desire to not get medicine pushed up must have been the trick to his first bowel movement! We are all very happy and hope that he continues to be "regular". No other news today. The doctor said it's just more of the same. Although, he has now discontinued Reece's morphine. I'm hoping Reece can handle everything on Tylenol alone. But, he may be a little crabby today his nurse reminded us. Thanks for your prayers!

Reece today

Reece has had a good day today. He got his IV taken out of his head today, so he looks better. However, he is still using morphine to help with pain. We are holding him as much as we can and enjoying every moment of it!
I had my post-op with my OB today and that went well. I do have high blood pressure and she thinks I may have had it for a while. So, I'm now on medication and will get checked again in a month.
We are praying for a poopy diaper. I know that isn't what most parents pray for, but we hope he has one soon so he can start eating again. Funny how the hospital changes things...
Thanks for your prayers. -Sue

No Fever!!

Sue talked with the nurses over night and Reece's fever is gone and they did not have to start him on antibiotics. Hopefully this means Reece is healing well and has no infection. Sue is on her way to the hospital and just wanted to thank everyone for their prayers and give an update.

infection

Reece developed a fever today, so they drew some blood and discovered there could be an infection somewhere. We left for the night, but will call later to see if they decided to do some cultures and give anti-biotics or what. When we left, the nurses had been waiting to see what the doctor would say. Please pray that this is not a bad infection but something that can be handled easily. We know He hears our prayers. -Sue

Reece is now off the ventilator! YEAH! I was even able to "hold" him. He rested on a pillow with his head in my arms. I felt a little unsure of it at first because he looked uncomfortable. However, his nurse assured me it was a good thing to hold him and that he was probably uncomfortable because of all of the tubes that were in his throat. He was just getting used to being free of them. Now, he just has a tube from his nose to his stomach that is helping him heal before he can digest too much. We are glad he is able to breathe on his own thus far and the doctor thought he should be able to handle it no problem! Praise God from whom all blessings flow!

morning news

Reece continues to be on the ventilator this morning. He's still in need of morphine for the pain, so the vent is essential. Other than that, he's doing very well. He has been urinating which shows good signs that his kidneys are functioning and his fluids are working well for him. We hope he can maintain comfort today and be able to get off the ventilator when he's showing signs he's ready. But, until then, we just pray God continues to heal him from his surgery and we pray in thanksgiving for this to be all over once he can feed well. It could be a while, but we're over the half way hump!

Finished!

The surgeons finished Reece's surgery around 11 something this morning. We spent some time with him and then had lunch before getting on-line. His surgery was VERY successful! YEAH GOD! We are so happy that Dr. Robertson was able to make two connections. This is great because that means they were able to save all of the small intestines he had left since the last surgery. He had minimal scarring and little blood loss. Dr. Robertson also took out the appendix (not sure how to spell that) while he was in there. He said Reece had had enough tummy surgery. :-)
Reece is now resting in his same location in his same crib. He does have a warmer above him because they need to monitor his chest area for a while. He also continues to be on a ventilator, morphine, and has suction coming from his stomach (because his bowels aren't ready for digesting yet) as he recovers from surgery. It's so nice to see him without the bags and with only a bandage to recover with!
We thank our Lord for watching over Reece and the surgeons during the surgery and continue to pray for his recovery. He has quite a road ahead of him yet as it will be a while before he can begin eating and then work up to full feeds.
Thanks for your love and prayers! God is good! -Sue

Surgery Tomorrow!

Yes! The surgeons have scheduled surgery to reconnect Reece tomorrow morning at 7:30 AM. Please join us in praying that everything goes well. Currently, Reece is in 3 parts. Dr. Robertson informed us that as long as the part which is resting inside is long enough, they will make 2 connections. If that portion is not long enough, they will only make one connection. We pray they will make the right decision on this matter and do what's right for Reece and his recovery. It's difficult sometimes to put the lives of our children into a doctor's hands. But, ultimately, we believe we put the life of Reece in God's hands and know He will guide the doctor's through it all. Thank you for your prayers and support.
Tonight, we are going to leave early because we'll be up here early tomorrow. We'll keep you posted on tomorrow's events. Thanks for your love! We love you too! -Sue

Happy Easter

We would first of all like to say Happy Easter to you and your families. We had a great day today as we were able to spend time with worshiping our Lord and Savior and then we spent some time with both of our families before heading up to see Reece.

Reece has had a great last couple of days. He is still is at 15mls and he seems to be doing well with this amount. We are hoping to meet with the surgeons tomorrow and hopefully they will be giving us a date for the Surgery to reconnect our little guy back togather.

We will let you know what we hear on Monday.

15 mls.

Yes, that is correct, we are back up to 15 mls. today!! Reece had a wonderful night last night and his output has been great as well. He's even up to 9 pounds 7 ounces. What a chunker! We are so delighted by his increasing awake time as well. He's enjoying his short tummy times and practices at sitting up. He loves to look out the windows and enjoy the lights. (His parents enjoy watching the progress of the construction workers...it's amazing what they get done in one day! Kind of our own tv channel in a way.)
Thank you for praying for Reece and for loving our family. We appreciate you!
-Sue

12mls

Where did yesterday go? I know things were busy up at the NICU and NIM. We had several other patients admitted on our side and we heard the census was way high too. Because of that, the doctors didn't see Reece until after 6 PM. But, he's doing well and things seem good. Dr. Gelfand met with him and was okay with his output for the last few days. So, he moved him up to 12mls! YEAH! So excited! We were glad to have him progress again. As far as the bag goes, he keeps the nurses busy by losing it at least once a day. He also lost it twice last night so they replaced it again this morning and just about an hour ago they lost it again. Amazing! I'm just thankful they can continue to find creative ways to bag his stomas so they can keep his skin clean and his stomas protected.
Today, the doctors haven't met with him yet either. I'm sure he's not high on their priority list right now considering how well he is doing. We are very thankful for that. I'll let you know more tomorrow.
Off to pump! -Sue
PS - Thanks Kari for dropping me off at the hospital today. It's nice to be blessed by others! Thanks!

Love

Sorry about not blogging in a while. I meant to yesterday, but chose sleep instead. I meant to Friday, but chose to go on a date night with BJ instead.
But, today I feel the need to pass along some words I remember from today's sermon. Pastor Mark talked about Ruth 3 today and towards the end of his sermon he gave our congregation words of encouragement for all of their displays of spherical power...the power of people who show love to others around them and it "spheres" into the community and everywhere else. Immediately I wanted to give words of encouragement to all of those who read this blog and show their love to us "spherically". Everyone has been amazing at this! We are very loved and hope to spread this love on to others some day as well.
Reece has been very stable the last few days and continues to grow. He's over 9 pound now! We have given him the nickname of "squirt". It's appropriate considering all of the squirts from his stomas and squirts of sucrose given to him as a means of comfort. He's our little squirt! And, we love him to pieces!
We hope to update photos on here sometime. So, look for those this week maybe.

PIC news

Reece has a new PIC line! Thank you for praying for us. We're glad it's in so that there is no more worry on mommy's part that he will have to be poked so often. Reece has had some problems with high output levels the past two days though. Please pray he'll start digesting his food better again. It's hard to see his level of intake have to go down because things are not working well. I think that as a parent we are informed this might happen, but until it does everything seems fine. Just when things seemed to have been going well, now it seems as though there's been a slight set back...nothing serious, but the roller coaster ride has begun.
We continue to pray in thanks for all of our prayer warriors out there and for those loving words of encouragement we get wherever we go. Bless you all and praise be to our Father!

busy morning

Reece had a busy morning before I got to see him. I came up around 11:15 thanks to G and G Schrotenboer. (thanks for the treats too! I love you guys!) He had lost and had his bags replaced. He had a visit by the Physical Therapist and the Nutrition Specialist. He also had the chance to be rocked by a Dr. who started the NICU. What an honor! I wish I had been there to get a picture, but I hear he comes by every Tuesday, so maybe some other time Reece will get the chance to be rocked again.
It was a little hard to see Reece at first. He had part of his head shaved last night to put in a new pic line. They were not successful. So, they will try again within the next few days. I must admit it would have been difficult to have seen him with a pic in his head even though they do it all of the time. Just the thought of it doesn't sound good to his mommy! :-)
He's with his dad right now and having a quiet nap in the rocking chair. He's a great cuddler! I told you I'd let you know what he weighs...8lbs. 13 oz. Yes, he's getting bigger. But, I'm just glad things seem to be going well. Please pray for his pic line to get into place in the next few days and for things to continue to progress. We appreciate all of your love! hugs - Sue

Happy One Month Birthday!

Reece is one month old today! As a mom, I haven't noticed how big he has grown, but his aunt Heidi and cousin Jeff and Lynnette noticed right away. One of their first comments was how big he was. I wish I could tell you his exact measurements, but I'll try to remember to do that tomorrow. I didn't get those yet. They usually weigh him every night at the 9 PM care time. They do full measurements on Sundays. So, I'll check that out for everyone tomorrow. Sorry.
Reece had a good day. However, his ostomy bags had to be replaced twice today. Thankfully the ostomy nurses were there today and did their "magic". I was talking to one of them and she told me her program took an extra 2 years in order to become an ostomy nurse. It's nice to know they are very well qualified. Every nurse we met so far has been highly trained. We've been blessed.
Reece is awaiting a new pic line. He lost his today. He has a temporary kind of pic right now and I know there's a name for it, but I can't remember what they called it. Anyway...he's on the list for a new one. I'll let you know when it's in. When they put one in, they create a sterile field and take an x-ray to make sure it was placed correctly. It's quite an important thing for him.
Our prayer tonight is that this procedure will go well. We continue to pray prayers of thanksgiving for his recovery thus far and for all of the wonderful care he is getting. Please say another prayer for his night nurse. He has a habit of staying awake at night and it's not so easy for them I'm sure. They act very nice to me about it, but I can't imagine an unhappy baby as being one that's easy to be around.
Thanks for your prayers and support! Also, thanks to Bec for driving me up there today. BJ was able to work for a while and I could spend some extra time with Reece. She even brought me a wonderful lunch! What a true gift. Finally, thanks for the ride home Maga and Heidi. BJ had fun with the boys while we had fun with Reece. I appreciate your continuous love and support.
Blessings to all of you -Sue

New room

They called to say Reece was transfered to NIM today. NIM is the neonatal intermediate area. He's improved, so this is a good thing. He continues to be in his crib with the same nutrition and same food amounts, but the room he's in is actually a lot quieter eventhough it's so much bigger. We are very thankful for his continued progress. We hope to give Reece another bath today and Ben's coming up to visit later on. He wants to give Reece a toy. I can't wait to see him give it to him! Sing praise today! -Sue

There was not much change in our little guy today. Sue and Maga got to the Hospital at about 1:30 and Reece was sleeping sound. The Doctor had not made any changes to his milk intake. Reece's output had increased and was borderline acceptable. The good thing is that Dr Knee did not decrease the amount of food that Reece is getting. He seems to be resting a little better now.

The Room that he is in seems to have gotten a lot noisier the last couple of days. They have brought in 2 new babies and both of them are on Ventilators. This really not that big of a deal other than that there seem to be a lot more alarms going off. The nurse had put Reece's blanket over his head(she said do not try this at home) because she thought the alarms were waking him up this morning.

Please continue to pray that Reece is able to continue to handle the increases feedings and not start dumping.

Friday, March 27

Just a short note to let you know he moved up to 15 mls today. Some have asked how big he is now. I'm not sure of his length, but he weighs 8 pounds 8 ounces as of last night. He's growing and doing well. Thanks for all of your prayers and say an extra one for him to sleep more at night.

Blessings

We are so blessed. Blessed by a son who's able to to keep feeding at 9 mls. A son who is fun to cuddle with and love on during each day we can see him. A son who we feel is a miracle baby.
We are blessed by an older son who has a heart for his younger brother. A son who is so much fun to play with and laugh with and cuddle with too. He's also a miracle baby.
We are blessed by a wonderful family who helps us in every kind of way imaginable. We could not get through this without you.
We are blessed by our friends who pray for us and support us in every way they can. We love you as family too.
We are blessed by our workplaces and the support they have given us. We are able to spend time with our son because they are willing to have us not work for a while and above that they have given out of their own graces to show they care for us as friends in addition to co-workers.
We are blessed by our church family who reminds us of Jesus with skin on. This family extends throughout the community as well. We know Christ's love is so great and so present because we can see Him in YOU! Thank you all for reading this. YOU are a blessing to us.

PS - Sue is blessed extremely by her class tonight! WOW! I miss you all. But, I am forever grateful of your special gift to my family today. YOU are a blessing to me!

gas

Reece had a very regular kind of day today while BJ and I were there. His doctors kept him at 9 mls. and he slept for a while and was awake for only a slight while. We actually gave him a sponge bath. Well, truth be told, BJ did most of the bathing part. He's better with all of the crying, squirming, and slippery skin. But, I helped get the water and soap and outfit and anything else he needed. It was a team effort I like to say. :-)
Tonight, his grandma Grace and Papa were there. The report they gave was one of gas. They thought he seemed very uncomfortable and that he may have had gas. I'm sure trying to digest food isn't easy for him and he probably did have gas. But, between that and the desire to eat it's not easy trying to keep him content sometimes. BJ and I hope his gas goes away and he's able to rest comfortably tonight.
On a side note, every Wednesday we come home early to spend more time with Ben. It was so precious tonight at dinner. We sat down to grilled cheese sandwiches and were ready to pray. Usually we pray the "God is good, God is great" prayer. Tonight, BJ asked Ben if he wanted to pray that prayer. He said, "Reece" instead. He wanted to say a prayer for his brother instead of the standard. We are continuously touched by Ben's love for his brother and his belief in God's help. Jesus said to let the little children come to him. I believe Ben has Jesus in his life being with him and helping him go through having his brother in the hospital and his mommy and daddy gone a lot.
"Jesus loves me this I know. For the Bible tells me so. Little ones to Him belong. They are weak, but He is strong. Yes! Jesus loves me! Yes! Jesus loves me! Yes! Jesus loves me! The Bible tells me so."

highs and lows

Waiting in the mother's lounge today I was reminded how difficult this place can be. I sat quietly doing my motherly duty while listening to the sniffles of other mother's tears. I remember the times where I too had sat and prayed and cried for my precious little one. It made me think of Psalm 23 and how God walks with us through the valleys. I prayed for the moms I heard...that they had God to walk with them through their valleys too. I know He comforted me and kept me strong enough to endure the hard times in order to face some of the good times we've had lately.
On that note, today Reece was increased to 9 mls. YEAH GOD! Other than that, Reece slept some of the day and was awake for awhile now. Thanks be to God for continued progress.

6 mls!

Reece is now up to 6 mls. per feeding. This is a good sign, but they continue to monitor his progress before they increase or decrease it any more. The surgeons came around today and told us what we already knew...about 4 more weeks until surgery at least. Reece slept most of the day, but has not been sleeping well at night. We joked with the nurses how we'd like this to be switched so that he's sleeping through the night before he's sent home. :-) They are fun to talk to and I appreciate their knoweledge as well as their kindness and sense of humor. It's been nice getting to know a few nurses who Reece has had already. They really make a difference! Reece had a special visit from his great grandparents today. What a joy it is to see Reece in the arms of his great grandma. We're glad they made it home safely from their time in sunny Florida.
Thanks for your prayers. Please say an extra thank you that his levels of food could increase! YEAH GOD!

A Big Brother's Love

Ben spent the day with his Maga, Papa, Aunt Heidi, Uncle Miko, and his cousins. During the day, he said several times, "I see Reece." The adults all could tell he wanted to see his brother. As some of his cousins were picked up by their parents, Ben thought they were going to go and see Reece. He threw a fit and cried and said, "I see Reece!" He continued to say this over and over again. Well, the love of his grandparents could not tell him no and they brought him up to see Reece. Ben not only saw Reece, he held him! He had a great time and there were lots of pictures taken. As we were leaving the hospital, he said several times, "Bye-Bye Reece. I Wuv you!" This was done completely on his own. As a parent, I'm writing this with a tear in my eye. For the first time, BJ and I realize we're not the only ones going through this time with our littlest member of the family being missed. His big brother Ben misses him too. My prayer request tonight is for Ben. Pray for his continued love for his Reece and for him to be understanding when he can't always see Reece. Reece had a regular kind of day with no change in feeding amounts. He was awake at times and sleeping at times... not much new other than the reality of how deep a brother's love is.

Sleepy?

Reece was up a lot yesterday. It's fun to see him begin to interact with his eyes. He loves to be swaddled tightly and this added with laying on his tummy seemed to be the trick to getting him to sleep when he was extra fussy.
Last night, Reece didn't sleep very well. He just couldn't find it even though the nurse tried all of her tricks (including the swing which usually works quite well). After 3 AM, he finally was able to rest for about 4 hours. His nurse this morning is the same as yesterday. Having a nurse who knows Reece is comforting to me as a mom. But, all of the nurses we have had are excellent. What a blessing to be in the care of top notch, quality people.
Reece continues to be on 3 mls. at least until the doctors tell us otherwise. They haven't seen him yet today, but we'll give an update if something changes. Thanks for your prayers and support! Oh, and thanks to all of our visitors yesterday. It was great seeing our family and a student of mine from Blue Star. Unfortunately, no one under 16 except siblings can actually see Reece. Fortunately, my student's mom had a camera and took pictures for her daughter to see. I appreciated the visit though. I miss Blue Star!
Hugs and Kisses to you all,
Sue

Doctor's meeting

Today we were able to meet with Reece's doctor and get the full report of what they found before, during, and after surgery. It's encouraging to know he seems to be healing well. The signs he shows are signs that the bowels are healing nicely. We found out he does have direct jaundice as a result of not eating. This can and probably will increase over time because he hasn't gotten much food yet, but it can be resolved easier with more food...once he's reconnected. Reece's feedings had been upgrated yesterday to 5mls., but is back down to 3mls. today. Not a huge concern, just a precaution. They don't want him to begin "dumping" or just letting all of his food pass through without having some absorption taking place. We hope to see the amount of feeds to increase as his bowel is able to handle it. Please pray for this. It's the main concern right now and for the next few weeks. Once again, thanks for taking our prayers to the Lord. It means a lot to have you in our lives.

"Nigh-night Reece"

Ben likes to say "nigh-night" to us before he goes to bed. Well, if Reece could talk, I think he'd say "nigh-night" to us today. Reece spent most of the day sleeping. He also had a restful 7 hours of sleep in his swing before we got there this morning. It's nice as a parent to know he's resting soundly and comfortably. Many nurses have told us he's going to have the bad habit of rocking to sleep when he leaves the hospital, but we think that's totally fine. We figure if rocking him to sleep helps him out when we can't give him much food then we're okay with rocking him to sleep. His food did increase to 5 mls. today (up 2 from yesterday). The progress may be slow, but it seems to be steady. We thank God for these small steps towards the next surgery. We pray for his continued healing and appreciate your prayers as well. The support we've been blessed with is very humbling.
With love,
Sue

YUMMY!!!!

Last night I did not post. Sorry. The day for Reece was going well. We had only a short time with him because Ben had a doctor's appointment in the afternoon. (It went well...just a check up.) Reece had fun cuddling with mommy, daddy, Grandma Grace, and Maga. He also was visited by Pastor Mark and Super Aunt Mary. I'd say the funny part was after Pastor Mark said a blessing upon Reece, he gave the cutest little smirk as though he knew Jesus was watching over him and he liked the blessing. Too cute!

But, the BIG NEWS OF THE DAY!!!!!!! is... Reece is able to eat! We were surprised too! But, the doctor's gave the go ahead at 2 PM and he chugged down his first 3 cc's soooooo quickly I think he would like to have had more. What a great day for him! Now, we get to see how his body handles being fed. It makes a mommy happy to see her pumping is paying off and watch her son take in his first foods in a while. Please pray for the rest of today: that he may continue to handle the feedings (although they are very small) and stay comfortable. The assumption from the doctors is that it'll probably not get absorbed very much at first. I'm hoping for Reece to defy these odds and digest just fine. God has a plan for Reece and we love watching as He works in Reece's life a little more each day. Thank you for your kindness, support, and prayers. We are calling it an early night in order to spend time with Ben and our friends who are bringing us a meal. You are all a blessing to our family.
-Sue

Another Good Day

Reece has been blessed with another good day today. The surgeons came around and informed us that he no longer needs to be on his anti-biotics. The stoma nurse came in this morning to help give him a new bag. She also put a bag on his mucus fibula and umbilical cord in hopes to dry out the cord, but keep the mucus fibula safe. Reece was awake several times today and slept for a while as well. When he's awake he so wants to eat food (but can't eat yet) or he wants to be burped or have his diaper changed. Fortunately, the surgeons said he'll be able to eat on Thursday! YEAH for Reece! It won't be a lot of food and it will probably not be absorbed very well, but at least it will help Reece feel like he's getting something. Please pray for Thursday. Pray that he'll be able to suck on the bottle well and swallow. Pray that he'll find contentment in this up and coming food. Also, thank God for his continued healing power and his love for our son. We are so thankful for all of you. And, we want to say thanks to Aunt Greta for coming to visit and bringing her famous bread. The grandma's and grandpa's took the "second shift" tonight and held Reece for a while after his care. We love how much time they spend with him too. Family is a gift we treasure. We hope you enjoy your family tonight as well.

Big Brothers Day

We arrived at the Hospital at about 2pm today and Vicki(Reece's nurse) inform us that Reece had been awake much of the morning and that he was really sleepy, but would not give up and go to sleep. All it took for the little guy to fall asleep was for daddy to place him in his mommies arms. Reece slept from 2 until we left him at 7:30 and he spent all of the time in Mommy, Daddy and Maga's arms

The highlight of the day was Ben getting to come back to the nursery and see Reece. This is the first time that Ben has gotten to see his little brother since he left Holland Hospital. He was really good with Reece and the nurses all loved seeing him. It was great to have the entire family togather even if it was only for a few minutes.

It really nice to know that when we leave his Grandparents are staying around and rocking him to sleep after his care.

Thank you to all of you that are praying for our family.

BJ

Content

Reece had another day of being content besides the times when he was awake and wanting food. During the night, we called and found out he was awake for awhile, cuddled with nurse Kelly, had some pacifier time, and went back to sleep. He also had some time in a swing yesterday. He seemed to like it a lot!
We are celebrating Ben's birthday with my side of the family today and will head up to see Reece mid-afternoon. Can't wait to hold him and enjoy his continued healing.
Please continue to pray in thanksgiving for his stable healing and for his ability to possibly eat food this coming week? Thank you for your support and time reading this blog.
In Christ,
Sue (and family)

Same ole' News

No much was new yesterday and neither is it today. Reece continues to be very stable with all of the same feeding/anti-biotics/etc... IV's going through his body. He's fun to hold and cuddle with. We learned that even a baby who's not getting food in the stomach can still have gas and need to be burped. He sucks very well on his pacifier and this causes gas to occur sometimes. BJ and I never really thought about that until nurse Kelly told us she had burped him and it seemed to make a big difference. We're going to use that information today as we hold him and enjoy his little smirks, wrinkles, wide eyes, and sometimes cries.
We continue to ask for prayers for Reece, but would also like you to lift up the 90+ babies and their families today. It's a tough situation for everyone and not everyone makes improvements every day. We've met some very dear parents up here who have tough decisions to make and be witness to. Pray for strength and discernment. Pray more for that comforting peace only Christ can give. To Him be the glory!
-Sue

Celebrate!

It's a day to celebrate and praise God for his continued blessings to our little one's life. Today Reece was placed into a crib. He's no longer in an isolete! We went and bought a mobile after being with him today so he can have some entertainment. It's so exciting! He also is no longer on morphine. So, if they need to help him calm down they will try something non-narcotic only after the soothing methods already established (holding, pacifier, change diaper, etc...) A third reason for celebration is...drum roll please... his tube is out of his nose! The tube going into his stomach was taken out completely today! He can't have food yet, but it's a step towards food. We're hoping he does well tonight with the tube out. During the day he did not have any spit up from his stomach, but he had a lot of gas coming out of his bag. At least it seems as though things are going in the right direction. As parents, we are enjoying being the witnesses to God's healing power. Every day there is something new with our little bundle of joy. Thank you for your prayers. We know this makes a difference. I'd also like to thank the friends and family who visited today. We had a great time with all of you. A special call out to my class at Blue Star. Mrs. Holleman came to visit today and came with your special cards. They brought smiles to my face and reminded me of how great each one of you is! I miss you a ton!
Love,
Sue

The Top is Off

The only new orders from the Doctor today was for the nurses to get Reece into a Crib and out of the isolation bed that he has been in for the past week. The fact that Reece is a full term baby and is able to hold his body temperature is allowing him to move to the crib. Although I do not think Reece will be able to tell the difference between the two beds this sure does make it easier for mommy and daddy to get at our little boy.

We continue to be humbled by all of the emails, phone call and post that we have been receiving and want all of you to know that we truly appreciate each and everyone of you.

Please pray that the tube into Reece's stomach, that he continues to pull out 1-4 time a day, can be permanently remove and that he will continue to show progress everyday.

New insight

We were able to spend some time with Reece's nurse, Lisa today learning about the process of feeding and what needs to happen before he can feed as well as how the feeding process will work. She also educated us on how to take Reece in and out of his Isolete in order to hold him. We've been told to hold him as much as possible. What great therapy for all of us! It's so comforting knowing more about Reece and his care and being assured that his nurses are highly trained and great teachers too. We are very blessed to have him in this setting.

We're calling it an early night tonight in order to spend some more time with Ben. Can't wait until he comes up here around 5:30 so we can take him home. I'll blog more later.
Thanks again for your prayers and support. The words of encouragement and strength from God have been getting us through.
Love you all!

Hunger pains

Have you ever watched a crying baby look for food from its parents? A mother's breast or a father's bottle is the only thing that can soothe their hungry stomach. Well, today BJ and I experienced a crying, hungry baby boy. The good thing we praise God for is the fact that he WAS hungry! That means his stomach is getting better and he's wanting it filled with food. The heartache comes when we know we can't give him food that way. He's getting the nutrients he needs for the time being through his PIC line (TPN and Lipids). His stomach and intestines need to rest for a while until they are more healthy and there is less green stuff coming out of his stomach. I have to admit, it was extremely difficult as a mom to be holding her crying, hungry son and having him move his head towards her breast, but not be able to feed him. Please pray his stomach can continue to heal and the green turns clear for them to take suction off the tube and then have it go away so he can be fed. I know this could take many days and many times of heartache, but I believe God can and has done more than we could ever ask for or imagine. I know Reece is in great hands at the NICU and have met some amazing doctors and nurses along the way.

BJ and I would like to thank Maga, Aunt Heidi, Aunt Mary, both Papas, Grandma Grace, Uncle Dale, Aunt Carol, Denise, Erin, and Maggie for coming to visit us today. We also thank nurse Karen, Nurse Caroline, and Nurse Jude for taking time out of their shifts to come and say hi as well. Your support means a TON!

We also would like to thank all of those who have e-mailed us through the hospital's web site. We do get those e-mails and have been humbled by your prayers, stories, and notes of encouragement. Without our fellow family in Christ we would have little hope or loving care. We need you and appreciate you.

To all of those checking this blog - thanks! It's been very therapeutic to come home and give you an update. Continue to keep Reece in your prayers. He's a spunky little one! We love him so!

Daddy's time

Before we left Reece to the care of Megan his nurse, BJ was able to hold him. What a joy to take Reece and hold him, kiss him without the plexiglas, and sing "Jesus Loves Me" a few times. Reece was taken off of his morphine drip today, but did need a dose after about 4 hours of freedom. He was awake for awhile and it was fun to see him interact with his Maga and Papa as well. We enjoy spending time with him, but know it will be a long road to recovery. We're very thankful for the "baby" steps of progress along the way. Thank you for lifting him up in prayer. We truly believe it's God's healing hand in his life that's getting him through day by day.

A mother's joy

What an exciting morning to come into Reece's area and be asked, "Would you like to hold him?" "Yes! May I?" "Of course you can!" I had the best hour of my life holding my precious baby boy in my arms and cradling him, singing to him, telling him about Ben going on the big boy potty today! Life is so good. He's doing well today. The surgeons came around to see him while BJ was in there and they checked him out. They noticed his belly was softer than before! YEAH! They said he seems to be making progress. Then, Dr. Doctor came around and reassured us that the green gunk still coming out of his stomach was normal. This could still happen for a while. Another doctor came around later and asked if we could set up a consultation to go over things again sometime soon. So, it's been a wonderful day thus far up here. We hope that continues. Thank you Pastor Andy for coming to visit. We appreciate all of the prayers and support from all of our wonderful family and friends.
In His Care,
Sue

The Blessing of Family and Friends

We are so wonderfully blessed with the support of family and friends. Today we had a few visitors to see Reece. It was nice to talk to others and show off his latest improvements. Reece had another good day. He slept most of the day, but woke up at night when the nurses did his care time. His morphine (not sure if I spelled that right) levels were lowered again today. He had only a little stool coming out of his bag, but at least there was some! I got to hold his body up off his bed for weighing and for changing his bed liner. It was a wonderful moment to take ahold of my son again after such a long time from holding him. BJ enjoyed the end of the evening where he could play a little with Reece and let Reece know his daddy loves him so much. However, this also made it difficult to leave knowing he was wide awake.

Reece still needs your prayers. He has to continue to fight the infection and have his intestines heal. He's continually getting anti-biotics to help fight the infections and he's being fed TPN and Lipids to help ease the stress on his bowels. We know God's healing hands are upon him and pray for continued healing and strength in the days and weeks ahead.

Thank you for reading this blog. It means a LOT to know others are caring enough to lift our little boy in prayer. God is in control.

Love in Christ,
Sue

Quiet Night

Reece had a quiet night of peaceful rest. He lost the IV in his head, but that's the only thing new all night. It's been a blessing to know he's sleeping calmly and doing well. BJ and I are going up to the hospital this afternoon. We have a birthday to celebrate before that! Ben is 2 today! YEAH!- Sue

Saturday PM

The PIC line is in!! Mom and Dad are thankful it went in easy and Reece didn't react.... He is now sleeping peacefully. What a tough little guy!! Baby Reece we are so proud of you and love you so much.

We are all praying for another good day tomorrow... that would be a great birthday present for Big Brother Ben!!!

NEC

The doctors at Holland Hospital grew concerned when Reece did not want to eat and seemed to have a painful abdomen and was lethargic. He vomited and was losing weight. They transferred him to Devos Children's Hospital on Wednedsay. ( We are so thankful to have such a wonderful facility so close by!!!) After several tests, the surgeon performed exploratory surgery on Thursday night hoping to find a blockage or something simple. Unfortunately, he discovered that Reece has Necrotizing Enterocolitis (NEC). NEC is a inflammation and infection of the intestines. The surgeon had to remove about 30 cm of Reece's intestines. Due to the infection he was unable to reconnect all the intestinal segments. Which means that Reece has 3 separate sections of digestive tract with "stomys" out of his abdomen. This allows his intestinal tract to rest and be drained from outside his body via ileostomy bags. By removing all the diseased portions and then allowing the intestines to rest this promotes healing and hopefully control of the infection. The ultimate goal is in six weeks, Reece will have another operation to reconnect all the pieces.



The cause of NEC is unknown. It usually occurs in very premature babies but rarely can occur in term babies. When the case is severe and there is small holes in the intestines or severely damaged tissue then surgery is needed. Reece did have some small leaks so our prayers are for the NEC to not progress in the remaining mild spots and for the antibioitics to control the infection in his abdomen. Many newborns with NEC that need surgery, survive and go on to live healthy lives. Once NEC is treated, it is not a progressive disease or something that Reece will always have.



-So please pray for no complications and for no infection and just for God's great healing!!!

-Also pray for Sue for healing from her c-section and for rest and comfort.

-Pray for both BJ and Sue and the grandparents for comfort that the machines and tubes are helping baby Reece as they struggle to see him like that.

-Pray for Big Brother Ben to understand that his mommy and daddy have to share time between him and baby Reece.

-Praise God for Devos Children's Hospital and all the wondeful Doctors and nurses and staff that work there!! They are amazing!!

Saturday Afternoon

Reece had a very restful night. The ventilator was removed and he is breathing on his own!! His cell counts are good and his vitals stable. Soon they are going to place a PIC line to give him TPN (total parental nutrition) intravenously. He will receive his nutrition this way for the next six weeks to allow his digestive system to rest and heal. The doctor was able to decrease his dose of morphine and he is more responsive. (esp. to his mother's voice) :)