101 Days

We have been living the NICU life for 101 days.  During the first week,  many staff members told us that this would be a roller coaster ride. We never could have imagined how true that statement would be. 

We have experienced happiness and sadness, confidence and fear, pride and disappointment, joy and sadness, hopeful and hopeless.  Sometimes all in one day. 

We have watched our children fight for their lives.  They have undergone numerous surgeries and blood transfusions, vents to support their breathing, hundreds of pokes and blood tests, but yet, they won't remember any of it. 

We have watched our tiny babies grow into the size of newborns.  When the NICU staff told us that the babies would grow to the size of a full term baby, we thought that there was no way our micropreemies would get that big.  It seemed impossible to imagine that our 2 lb and 1 lb 11 oz babies would grow up to 6 lbs and 7 lbs 11 oz in just 101 days.  Now they are the size of 'real' babies.

We have made new friends and have been touched and inspired by those around us.

We have been blessed to have so many people care about us and our story.  We could not have made this journey without all of this supportive words, acts of kindness, prayers and love from family, friends and strangers. Thank you does not even come close to express our gratitude. 

We have watched God work miracles right before our eyes. We have also watched him do things that we just don't understand.

We have hope for what the next 101 days will bring to our family.

March for Babies

Help us raise money to support the March of Dimes. We will be walking on Saturday, April 30, at 9:30 am if you would like to join us on team Will and Erin. 

www.marchforbabies.org/WillandErin

Here is a link to the March of Dimes website. Thanks!

We Are Thankful

We have so many things to be thankful for this week. Will has been a lot of progress with his breathing. He has stayed off of the standard vent, which he was on for his whole life. He is on Bubble CPAP and doing rather well. He had a partially collapsed right lung and that has now opened up. He is happier and awake more and for longer periods of time. We can hold him whenever we want to. Will's eye exam came back better and his ROP is not progressing. The belly wound that split open has nearly grown back together in four short weeks. I am amazed at how quirky his little body grew back together. He is now able to wear clothes, which makes me feel better because it's something babies are supposed to do. He weighs 5 lbs 14 oz and his clothes are huge on him, but he still looks adorable. This week I feel hopeful for Will. I am not scared and stressed that he won't come home with us.

Erin was making great progress with her bottle feeding. She was taking 57ml from a bottle almost every feeding (for a few days in a row). We were told that she would probably come home in two weeks which would be this Friday. But, her CO2 levels are higher than the doctors want. (She was at 74 and she should be 40-50. As of this writing she is at 64.) On Easter, the doctor put Miss Erin back on Bubble CPAP. This means that she cannot bottle feed right now. She is getting 60ml gavaged. I am disappointed that she has taken such steps backwards because I was really excited to have one of my babies at home with
me. Erin's eye exam looked great and her ROP has not progressed either. She weighs 7 lbs 2 oz and is quickly outgrowing her clothes.

Mark is thankful that his new job is going well and that he isn't paying $4.19 per gallon of gas. I'm thankful that the babies are doing well and that I am prepared for them to come home. I am also thankful for all of you! I appreciate your prayers, comments and support. (Mark does too.) I will be thankful when the new power cable for our computer arrives so I can upload pictures to the blog. :-). I'm doing this update from my phone while Erin is sleeping in my arms.

Happy Anniversary!

Just a side note:  Julie and I went out for our first official date 11 years ago today!

These are the days of our lives...

It's has been a very hard week around the NICU this week, filled with happiness and sadness.

Starting with Erin, she has had a very good week with all the right actions!  We are starting to see a light at the end of the tunnel with her.  Her eye exam came back very positive with a regression of ROP in both eyes! This week she had her exit Echo and exit MRI, she has also been put on "Go Home Air" which basically means they are prepping her to go home with oxygen.  This is very exciting and scary, but Julie has done a wonderful job finalizing the nursery!

Will has been steadily progressing although at his normal slow rate, but we will take any progress we can.  Will got two rounds of steroids to help lower the inflammation in his throat so that they could try him on the next vent.  So on Tuesday morning he starting on NIPPV which is a version of CPAP that uses nose prongs.  He looks like Scuba Steve!  He had a little set back this morning and they had to turn him up to 100% O2 flow, and they gave Will one hour to get his O2 usage down to 50% or they would put him back on the standard vent.  Guess what?!  He did it!  With a lot of coaching from Julie and the nurse he was able to get down to 48% by 1:00pm and has continued down to 38% as of 5:00pm!  He doesn't have CF, but they are doing the pounding treatment similar to CF to help break up the fluid in his lungs allowing him to breath much easier. It also stimulates the lung to expand. The next treatment is at 7:00pm tonight.  His belly is looking so good, and I'm sure he is feeling better from it.

So, now the sad news.  Yesterday three babies passed in the NICU.  Two of them are from our pod.  One baby before Julie and I got there yesterday, the second baby was going to be taken off life support once the family assembled in the room.  The whole family arrived and before they could turn off life support the baby's heart gave up.  Whenever a baby's heart or breathing slows or stops it pops up on all the monitors in that pod of the NICU to alert the nurses of the problem.  For this is was very sad, Julie and I knew it was coming so Julie sat with Will and I went and held Erin.  Both of us cried when we say the screen come up with 0 heart beat then the alarm was silenced and ten minutes later the monitor went dark, signalling they had shut the computer down.  This baby had lived in the NICU for 9 months, and at one point was just days away from going home.  That is one reason that Julie and I are trying to keep our enthusiasm about Erin's impending release.

Now for some happier news.  On the same day that the three babies past, a family that we have gotten to know and who was born shortly after the twins got to go home!  We are so happy for them, and from a few facebook messages going back and forth they seem like they are settling in well.  And then more happy news, we are very excited to welcome Margaret Jane Schaffler into the world!  Congrats Jen and Pat!  We can't wait for the girls to meet!  Those of you who don't know the Crystal Mountain clan of new kids it was 3 boys (Tommy, Urban, Will) and Erin!  Now she has another girl to play with! Way to even up the odds Margot!

Family Update

Erin- She is taking bottles and growing quickly.  Erin weighs 6 lbs. 3 oz and is 17 inches long. She's come a long way her birth weight of 1 lb. 11 oz and 13 inches long. Wow! Milk does a body good!  Erin is currently working consistently taking bottles. She gets 55 ml every three hours and sometimes she will take the whole bottle or part of the bottle or sleep through the whole feeding. When she doesn't take the bottle, then she is gavaged which is where her food is given to her with the feeding tube in her nose (which goes into her tummy).  It's in her nose and not her mouth so that she can work on sucking bottles. The occupational therapist came to work with Erin and  me.  She showed me how to correctly give Erin a bottle. Who knew that there were specific techniques to use when bottle feeding a preemie.  I surely didn't.  There are rumors floating around that Erin could come home by the end of April or beginning of May.  My due date was May 1 and the doctors had always told us to plan for a homecoming around my due date. It looks like this might be happening!

 Will- Our prayers are being answered with Will.  He started pooping on Monday.  I prayed for poop in church on Sunday and my prayers were heard. ;-)  Now that he is pooping (which means that his intestines are working after his surgery) he starting getting fed breast milk on Thursday.  He is getting 3 ml right now.  So far, so good. His  little belly hasn't gotten any milk in over a month so I am sure it is wondering what to do with this stuff.  Will and Erin's eye exams came back unchanged! His belly is starting to heal even after the incision opened up.  Will's incision started oozing last Thursday and the surgeon had to take the medical tape off of the wound which caused it to open. There is a layer of stitches that were internal and those are fine. Now he has a 7 cm by 1.5 cm hole in his belly that gets packed with gauze two times a day.  He was getting morphine for the pain, but is now just getting Tylenol. I am amazed at how quickly it is healing up and Will's pain tolerance.  We just pray that this doesn't get infected and that it continues to heal.  His Broviac surgery went well last week and that is working fine. Will's vent setting are slowly coming down too.  He is awake more and we are getting to hold him more too. Yesterday, I held him for two hours! It was a great feeling for him to be snuggled up in my arms.

Mark- He had his last day at Uni-Solar yesterday.  On Monday, he will begin his new job and Grand Rapids Spring and Stamping which is located right downtown. He daily commute went from 75 miles round trip to 6 miles round trip.  He will be saving $100's in gas every month and have more time to do the things he loves like bike riding, running and spending time with us! I am so excited to have him so close to home.  Later today he is going to learn how to feed Erin a bottle. I'll have to post pictures later this weekend.

Me- It has been a good week and I am enjoying the feeling of being  less stressed.  Our prayers are being answered and both babies are making progress.  I have to admit that I am getting slightly freaked out about having Erin at home with us. What am I going to do with her? ;-) I won't have any  nurses around to help or watch Erin.  I guess we might finally start to be like 'normal' parents with a new baby at home.

What's your Detroit Tigers memory?

We all have our own memories of the Detroit Tigers.  I remember my dad listening to the Tigers on his little transistor radio that he used to keep on his workbench in our garage.  When I hear the voice of Ernie Harwell it reminds me of AM radio and listening to the games on WJR.  I remember going to the last Sunday afternoon game and the last night game at the old Tigers Stadium.  And now I have a new memory of the Detroit Tigers.  With the help of technology, Mark has a MLB app for his phone so that he and Will can listen to the Tigers games.  Mark will either hold Will or sit at his bedside and listen to the game with Will and give him play-by-plays of the game.  It just melts my heart to see this father and son bonding time.  When Mark called me yesterday he wanted me to make sure that I told Will that the Tigers had won.  Again, my heart melted.  I found the perfect book for Mark and Will and captured a few pictures of Will listening to his daddy teach  him all about baseball and the beloved Detroit Tigers.  I love these pictures and the look on Will's face as he pays close attention to his daddy.

FYI

Forgot to tell you all, Will had his surgery today and is doing great!  Thanks for all the prayers!

Daddy's Turn!

Can I say "ditto" to all the feelings of Julie's posts?

OK, probably not, but my take is very similar, just a dad's view.  Since Julie has already pulled all the cry strings I won't dwell on that,  I am going to talk about the fun things, or what keeps me going!

What has been fun is seeing the reaction of our kids to my voice.  Everyone knows how much I like to talk, well the kids love to listen!  As sick as Will is, when he hears my voice you can actually see his heart beat and breath quicken on the monitor and within a minute or so his eyes will start to peek out!  "Hi buddy!" and the hands come up to meet you.  (hopefully not to his tube). 

I try to do normal dad things like listening to NASCAR or the Tigers on the radio with the kids. I'll grab the kids and sit down with my iPhone radio and listen to the game. While Will was recovering from surgery I sat at his bedside and listened to the whole game holding his hand and playing with the hair on his head.  It made a tough day better.

OK, now Erin...  I have become afraid of Erin! When she had breathing assistance it was easy for me to hold her! Now, she breathes on her own and her head moves!  What the heck am I doing with her!!! She's bigger, but still so tiny!  I can change diapers and clothes, but picking her up freaks me out!  But, she is a cute little princess and I love kissing her fingers when she reaches up for me!!

Oh, and by the way I got a new job in Grand Rapids so that I can spend more time with my family!!!  Saving 1.5 hours and 70 miles of driving a day!

Will's Broviac Procedure

Will's Broviac procedure had to be put on hold for today.  Right before he was to go down into surgery, the doctor ordered blood work to double check that he was stable for surgery.  The head lab guy expideted the lab work so that the surgeons wouldn't have to wait.  Will's labs showed that he had a slight infection. Because of this, his surgery was put on hold until later this week.  He is recieving his nuturition and antibotics through an IV that is in his foot.  The cultures are growing so we will know more tomorrow as to what type of infection he has.  Please pray that it isn't anything serious and can be fixed with a simple antiobotic. It is okay that we wait.  We are so thankful that the doctor wanted to check Will's blood.  Poor Will would have been trying to fight an infection and deal with his new Broviac all at the same time.  His nurse keeps telling me that angels were watching out for him and I have to agree with her.

THANK YOU!!

Our prayers have been answered with Will's eye exam.  His eyes have not gotten any worse.  They will do another exam next Tuesday to check them again.  Erin's eyes are at a Stage 2/3 (up from Stage 1/2), but not anything to really worry about right now.  Will's belly surgery last Thursday went well and he hasn't had any complications from it. Those prayers have been answered too.  Thank you!

I am humbled by all of the kind words, support, prayers and thoughts that have been expressed to us during this time.  Mark and I are so thankful for everyone of you, even if we've never met before.  Thank you for all that you are doing to help us and our family.

A Mother's Pain

As Will and Erin's mom, this past week as been the most challenging one for me.  I've experienced extreme joy,  happiness and pride with Erin. I am watching her begin to do things that 'normal' babies do.  She is mostly breathing on her own, drinking bottles, sucking her thumb, wearing clothes and can be picked up/held whenever we want to.  I am starting to vision our life with her at home, which could happen within the month.  I won't have the nurses around to help me or answer my questions.  I am starting to get that fear and excitement that a new mom has about taking their baby home from the hospital.
 At the exact same time, I have shed many, many tears at the pain that poor Will is experiencing (I am starting to tear up now, as a I type.)  I've never considered myself a 'crier,' but these past few days have been different.  It is difficult to see him lying in bed so sick and totally helpless. He can't wear clothes because the nurses need to monitor his breathing, puffiness, and incision.  We cannot hold him unless he is doing well and a nurse is there to help us.  Even then, there is no guarantee that Will will cooperate and let us hold him.  Sometimes his stats drop and he needs to be returned to bed.  I've watched him have countless IV's in his head (he has one there right now)  along with his hands, arms and feet.  He has had patches of his hair shaved off.  My sweet, innocent baby boy is missing his beautiful, soft hair.  When we go into his room, we must wear a gown and rubber gloves because he is in isolation as a result of an infection he had a month ago.  Because of this, I don't get to touch his soft skin.  He doesn't know my touch  because we all feel the same with gloves on.  We sit by his bedside waiting for him to open his eyes and when he does it is the best feeling.  A feeling that I struggle to put into words.  When he looks at me I feel like everything is going to be okay, even though I don't know if it is. We have no idea when Will will come home.  I cry when I think about the day that I get to take Erin home and he is left there all by himself.  A part of our family will be missing. 

Please continue to pray for us. 

Will's Rough Week

It is time for Will to catch a break.  The poor boy keeps having trouble with various things.  His latest problems are his eyes and the PICC line.  Will and Erin are given eye exams every other week.  For the past exams, their eyes have been premature.  On Tuesday, Will's eye exam shows that he has Stage 3 Retinopathy of Prematurity. Wikipedia defines ROP as:

"Retinopathy of prematurity (ROP), previously known as retrolental fibroplasia (RLF), is an eye disease that affects prematurely born babies. It is thought to be caused by disorganized growth of retinal blood vessels which may result in scarring and retinal detachment. ROP can be mild and may resolve spontaneously, but may lead to blindness in serious cases. As such, all preterm babies are at risk for ROP, and very low birth weight is an additional risk factor. Both oxygen toxicity and relative hypoxia can contribute to the development of ROP."

To read more, here is a link to follow: http://en.wikipedia.org/wiki/Retinopathy_of_prematurity

Erin has Stage 1/2. We aren't as worried about her eyes as we are Will's eyes.  They will both have weekly eye exams to monitor the ROP.  There is a chance that Will's Stage 3 could reverse or not progress any further.  We pray that one or both of those things happen. We also pray that Erin's Stage 1/2 doesn't go any further.  We will keep you updated on what happens with their eye exams.

Will's second issue (in addition to all of the other things that I listed in a previous blog) is that the PICC line in his arm went bad on Friday. The PICC line is how he receives his nutrition (TPN and Lipids) and any medication.
Here is a link in case you wanted to learn more about PICC lines. http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter
 He had his PICC line since he was 9 days old.  The nurses were surprised that it had lasted this long.  From Friday through Sunday night, the nurse practitioners tried four or five different places on his body to start another PICC line.  They tried two places on his head which required Will to have patches of hair shaved off.  I've cried a lot this weekend because of this (the PICC line and the shaved head).  No mother (or father) should have to see their tiny baby with patches of hair missing.  Trying to think positively, Will does have a mohawk which seems to be the in style.  ;-)  Last night, the nurse practitioner tried for two hours to start a new PICC line with no success.  I could see the pain and sadness in her eyes when she told me that she couldn't get it to go.  I know that she and our nurse Renee worked as hard as they could.  Will's veins are under developed and weak because of all the pokes he has had in his short life and because of his extreme prematurity.  On Tuesday, the doctors will put in a Broviac catheter. Here is a link that explains more:
http://surgery.med.umich.edu/pediatric/clinical/patient_content/a-m/broviac_placement.shtml  We are glad that Will won't have to have any more pokes with his blood draws or blood transfusions.  His poor body is covered in pokes. It just breaks my  heart. 

Will's surgery went great! Our prayers were answered.  He hasn't had any complications from the surgery and is recovering well.  I am not posting any pictures of him right now because he isn't looking his best.  He is extremely puffy as he tries to get rid of the extra fluids from surgery.  His diapers are nice and wet, which is a wonderful thing.  Today's nurse reported a few 'tuts' from Will, which means that things must be connected.  :-)

Erin's Big Week

This has been a big week for Erin.  Last Tuesday, she went off of CPAP (what we called Scuba Steve vent because of the 'scuba' gear she had to wear) and on to high flow nasal cannula.  By Wednesday, she was down to low flow nasal cannula. I love her new vent because now I can pick her up and hold her whenever I want to, just like a 'real' baby. :-)   On Thursday,  Erin took her first bottle! For her first attempt she took 15 ml out of the 50 ml she gets per feeding.  We were VERY impressed.  The next few tries she took 15-17 ml and on Saturday night she took 34 ml.  We tried again on Sunday and Monday, but she wasn't interested or fell asleep. Erin is fed down her feeding tube when she doesn't finish a bottle or isn't interested in it.  Bottle feeding is something that we are doing only if she is awake and interested. We are not going to stress her (or me) out with it right now.  Learning how to suck, swallow and breathe is harder than it sounds. I will try breast feeding her once she gets a little better at bottle feeding.  But, I know that she/we will get there.  We are proud of Erin and all of her accomplishments this week.

Sleep, it does a baby good.

Our little cupcake

Spending time with daddy.



Mommy is teaching me how to suck my thumb. 



I'm a big girl!

Time to burp.

Erin feel asleep after drinking 34 ml of her bottle so we helped her out in the end.