A Happy Birthday paid forward

August 13^th is quickly approaching.  I cannot believe it has almost been a year.  This has been the longest year that has seemed to go by ever so quickly.  In memory of Michael for his first birthday, we will be donating to Mercy NICU.  I cannot speak highly enough of all the people, and their generosity, that we encountered while there.  We only found out we were having a boy just a few days before we were admitted to the hospital.  Our lives were pretty crazy from the time we were admitted to the hospital to the time he passed away.  We had nothing for Michael, not one article of clothing, blanket, or stuffed animal.  We were very fortunate that so many wonderful people donate to the NICU.  Because of the generosity of others, Mercy was able to provide us with Michael’s very own BOY baby blanket and an outfit for him to be buried in after he passed away.  A very special lady also makes all of the infants that pass away white robes and white baby blankets.  All of these items are very precious to our family, as they are the few things we have that were Michael’s. 

So, to celebrate their baby brother Michael’s first birthday and in his memory, our girls have decided to collect 100 stuffed animals.  These stuffed animals will be donated to the brothers and sisters of babies in the NICU at Mercy (formally St. John’s) hospital.  We ask that all donations be new and about the size of a beanie baby.  The girls got the monkey in the picture after Michael passed away and they take it on family trips and put it in all the family pictures, even going so far as to name the monkey Michael.  Although they know the monkey is not Michael, it gives them something tangible to remind them of him. 

Also, Mike and I are donating baby bibles for Michael’s first birthday and in his memory to Mercy (formally St. John’s) hospital. These bibles will be given to the parents who have children in the NICU.  The cost of the bibles is approximately $4.50 apiece.    If you would like to contribute to the donation of the bibles or the stuffed animals please contact us before August 1^st as we will be making the donation later in the month around Michael’s birthday.

We would like to thank everyone for their continued love, support and prayers through this past year!  Mike, Jen and girls

UPDATE: I have had a couple of questions so I thought I would clarify things a little.  If you are interested in donating( and don't live close to us) please send me an e-mail at -jgprosise@hotmail.com or you can message either mike or myself on facebook.  We can give you our address where you can send the stuffed animals or donations.  The christian bookstore by our house is going to special order the bibles for us.  They are small baby bibles in pastel pink or blue (I will post a picture of one once they are in).  If you prefer to send monetary donations please let us know if you want the money to go to the stuffed animals or the bibles.  We appreciate everyone's help and will keep you updated with our progress to reach our goal!

3 months

3 months…..

It is hard to believe it has been 3 months since Michael was born. If he was alive he would be 3 months old, yet not even due for 2 more weeks.  Time has never seemed so inaccurate.  Even though it has only been 3 months, it honestly feels like years since we have seen him.  It is amazing that things we did before he was here seem just like yesterday, however those 11 days he was alive feel like forever ago.  We all miss Michael every second of every day. 

I decided to update this blog periodically after reading some of the blogs that were written by other people who have also lost a child.  It helps to see the progress we have made and also to remember this time.  Honestly if I had not recorded those days we had in the hospital, I know I would not remember hardly any of the details. 

So how are we doing?  I get this question a lot and I still don’t know how to answer it.  I always say “as well as can be expected”.  Everyone tells you it will get easier.  They forget to tell you that is only after it gets harder.  The first few weeks after Michael passed away I feel like we were somewhat in a haze.  It is so awkward to go about doing normal daily activities and family events when your family feels anything but normal.  Then the shock and numbness of it all wears off and you are staring your reality in the face.  This is where we are at now.  We are getting closer to the holidays and are faced with the reality that we should have a new blessing here, but don’t.  I have reached out to several friends who have also lost little ones for advice for simple things that others may not even think about.  Like how do we sign our Christmas cards?  It is so hard to sign a card “Mike, Jen, Madigan, Sophia and Ainsley” and have Michael’s name left out.  He is a part of our family even though he is not here.  But do you sign his name even though he physically is not here?  Then there is the family Christmas picture…..and family pictures in general.  We are trying to work though each situation as it comes and I know there will be many more. 

The girls talk a lot about Michael, which we really like.  On Halloween, Madigan said if Michael were here he would be a Monkey for Halloween ( I was thinking the same thing!).  For thanksgiving we are doing “thankful lists” and ask the girls to write one thing everyday that they are thankful for.  Everyone of course said Michael, however Sophia specifically said “That God let us have Michael” and “That God takes care of Michael”.  I thought those statements were pretty big for a 4 year old.  Madigan still seems to be the most affected since she is older and knows a little bit more.  Many times she will just come up to me and give me a hug and say that she misses Michael.  The girls also like to draw him as an angel when they draw pictures of the family.  After Michael died, our nurse Shannon suggested getting a stuffed animal for the girls to remind them of Michael. We eventually got around to getting our “Michael Monkey”.  It is nothing more than a little stuffed monkey (the girls called Michael a little monkey after he was born).  It is amazing how much they love having this monkey.  Madigan said one day that she was glad we bought the Monkey to remind us of Michael.  We have decided to include the monkey in pictures with the girls to remind us of him.  We have even taken him with us when we go out of town.  It may sound weird, however it is nice to have a reminder of him….and the girls really like it. 

I am thankful for the support of some friends who have also lost babies of their own.  It is so unfortunate this is what we have in common, however they have been a great source of strength and support through many situations.  They have been there for me when I need to reach out to someone who truly understands what we are going through, because unfortunately they have also been in our shoes. 

We continue to thank every one for their support.  It is little things that people do that have helped us through this.  Just a few days ago someone from our church nursery sent us a card that said “your children have displayed such a peace that their brother is with their heavenly father and that some day you will all be together and in the presence of Christ our Savior”.   Things like this help get us through, knowing that God is with us every step of the way….and thankfully our girls also understand.

A "Gift"

I know everyone prayed so much for Michael and our family during these past few weeks and I just wanted to let everyone know how the Lord took care of us through this very difficult time.

First, our whole family was able to get to the hospital before Michael passed away.  Mike's dad had been in Alabama for 7 weeks helping clean up after the tornado's.  He made it to the hospital around 3:30pm and Michael passed away several hours later.  Mike's sister and her family also came from Kansas City and made it in to see him before he passed away.  My parents and sister and brother also made it to the hospital that evening.  Everyone was there for us and everyone had a chance to see him before he passed away.  I am so thankful for this. 

Second, on the day Michael died the doctors kept updating us on his situation.  At one point during the day both our pediatrician and Neonatologist informed us that Michael was not in a good situation.  Even if his little body was able to fight off the infection, they have no idea the damage that had been done and what the lasting consequences might be.  His blood pressure was so low for so long that it was not perfusing his organs and his oxygen levels were so low for so long that they had no idea that damage that may have been done to his brain.  They informed us we might reach a point when treating him any longer would cause more harm than good.  They said we may reach a point where we must consider whether to push on.  Mike and I looked at each other and knew this was a decision we could never make.  We prayed that it would be in God's hands and either God would heal Michael or take him to heaven.  We are so thankful when God decided it was time he took him quickly.  Michael did not suffer and for this we will be forever thankful.  We thank God and know he answered our prayers when we did not have to make any decisions on continuing Michaels care.

Lastly, I want to share a story about Michael's Nurse Shannon.  At St. John's NICU they do what is called primary nursing.  This means if you come across a nurse you really like you can request they be your childs primary nurse.  When the nurse works, she is assigned to your child.  We met Shannon when Michael was just a couple of days old.  She even informed us about the primary nursing.  I cannot explain how Shannon made us feel, however I can tell you when Mike and I left Michael's room that night we both said we definitely want Shannon for a primary nurse.  Well a couple days passed and Shannon agreed to be a primary and we just had to set it up with the charge nurse.  The day before Michael died we squared everthing away with the charge nurse and Shannon was set to be Michael's primary.  That Tuesday evening we went home and later got the call that Michael was not doing so well.  Before the night nurse left she informed us Shannon would be there that day and she would be Michael's nurse.  Mike and I were relieved to know she would be coming in that day but had no idea how she would change our lives.  With Mike and I both being pharmacists and knowing the drugs he was on we knew things were not good.  When Shannon came in, we tried to get a feel for the type of situation we were in and wondering if this is something Michael could beat.  Shannon just looked at us and said" I believe in miracles and I see them all the time".  She told us today Michael was her only concern and she was there to take care of him.  She not only took care of him but she took care of Mike and I also.  She knew everything we needed and when we needed it.  We found out later on in the day that Shannon had a daughter, Gabby, that was born at 23 weeks and only lived for an hour.  She had been in our shoes and she knew what we needed.  She laughed and cried with us, she was there for us every moment of his last day.  And when he passed away she was there.  Even though I know her shift was over, she stayed.  She made our family a scrap book of Michael's things that we will treasure forever.  She stayed and removed all of Michael's IV lines and gave him a bath.  She took pictures of him and printed them out for us.  There was also a little blood on his blanket and she took it home and washed it for us.  I have no idea how long she stayed to take care of him.  But I know in the short amount of time we knew her she took care of Michael the way we would have.  I have no doubt God let Michael hang on until Shannon was there.  God knew we needed Shannon.  After we came home and had time for our minds to clear I realized that by Shannon losing Gabby, she had a gift.  I told Shannon I was so sorry to know she had lost a child also, but Gabby was an amazing gift.  I will never know the number of families that Shannon has helped though this unimaginable situation.  But I know she knew exactly what we needed because she had been there and her unimaginable situation has helped her change the lives of so many  families.  She is someone our family will never forget.  Shannon even showed up to Michael's memorial service on Sunday.  I have never known someone for such a short period of time and felt like they are part of my family.  Mike and I will never be able to express how grateful we are to her for taking such wonderful care of our precious baby.  We do thank the Lord he gave us Shannon and she will forever hold a place in our hearts.  I only hope someday we will be able to use God's gift of Michael to somehow make a difference in someone else's life.

I have had several people inquire about memorials for Michael.  Our church is in the processing of building a playground.  We are requesting all memorials for Michael be made to Chapel of the Lake in Lake St Louis-(in memo memorial for Michael-Playground).   If anyone needs any further information/addresses please let us know.  These can be sent to us or directly to the church.

Thanks again to everyone for their support and prayers.

Wednesday August 24

I don't even know how to write this post, Wednesday evening our precious little Michael went to Heaven.  Early Wednesday morning we got the a phone call from the NICU informing us he took a nose dive.  He was septic and they did everything they could to help fight the infection....but it had taken over.  We appreciate all of the prayers and support for Michael and our family.  Please keep the girls in your prayers as they (especially Madi) right now are having a very difficult time.  We are very thankful that when he went, he went fast and he did not suffer, we truly thank God for that.  I know as a family we still have a long road ahead of us, but I am confident as with everything else in our lives the Lord will guide us through this.

Thanks to everyone for all of the many prayers for Michael,
Mike and Jen

Tuesday August 23

Well today is a little bit better day than yesterday.  At least now Michael is stablilized on the Ventilator.  There really is not too much new today.  We are still waiting for his cultures to come back (which will hopefully be tomorow) and they plan on doing several other labs and another chest x-ray tomorrow.  Hopefully we will know more about his situation tomorrow.  For now they just plan to push forward on his nutrition in hopes of getting him a little bigger and stronger.  Thank your for all of your continued prayers for him!

Monday August 22

Well, the doctors told us with preemie's you have to take it one day at a time.  There will be good days and bad days.  Unfortunately, today when we went to see Michael at the hospital he was back on the vent.  This is something we expected, however he was not doing as well on the vent as he usually was.  The Dr said they suctioned out some thick yellow secretions from his lungs today.  Although his chest x-ray was clear, there was still cause for concern.  While Mike and I were there Michael keep dropping his O2 sats, even while on the vent and this is something that has not happened yet.  This along with the fact his glucose levels were running high made the Dr suspect an infection.    When I called the nurse tonight to get the lab results she said his white blood cell count and his bands were higher than they had previously been.  Meaning he probably has some type of infection.  Before we left the hospital around 2pm today the dr had already ordered Michael to be started on antibiotics while they were waiting on the culture results from the secretions in his lungs.  Please keep Michael in your prayers as his little body works to fight off this infection.  Thank you everyone for your continued support and prayers for him. 

And on a happier note, below I have posted some pictures from our visit on saturday and sunday.

 This is Madigan touching Michael.  She was so excited just to be able to touch his little elbow!

This is a proud daddy and big sister looking at Michael.

 Daddy's first time hold Michael!

Saturday August 20 and Sunday August 21

I was hesitant to post anything yesterday because they made some MAJOR changes with Michael.  First on friday evening they changed his vent settings so that he was initiating ALL breaths on his own.  The ventilator was not set to provide any breaths at all.  On Satuday, the Neonatologist came in and said we are going to extubate him today and see how he does.  I am sure my jaw dropped to the floor. I was thinking, he is one week old...if he was still in my belly his gestational age would be 25 weeks and 6 days...he is not even due to be born for another 14 weeks and you want to take his breathing tube out?  They said they would initially try a nasal cannula and if that was not enough move up to CPAP.  If was unable to sustain himself on either of these then they would reintubate.  They already have him on caffeine to help stimulate him to breathe.   Mike and I were there when they extubated him and I could barely watch.  All of his monitors are going off, his heart rate dropped and his oxygen sats dropped...........but he recovered and held his own......on just the nasal cannula.  Mike and I were at the hospital today over 24 hours later and he is still JUST on the nasal cannula.  I don't have any words to describe this.  We know we have an amazing God, but this leaves me speechless.  We know he might not be able to maintain just the nasal cannula, but the fact he has been able to do it for over 1 day at just 1 week old is a small miracle. 

We also got the reports back from his head ultrasound and right now everything looks good.  They scan premature babies heads to see if there is any bleeding in the brain.  Right now his was good and they will rescan him in another week.

Also today Mike got to hold him for the first time (I will post pictures later).  Michael did very well and Mike got to hold him for almost 2 hours.

We continue to thank every for their prayers.  This definitely means a lot to all of us and this is truly what Michael needs.  We are so grateful for his progress so far.

Mike and Jen