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

Friday August 19

Today was a big day for Mommy...and Michael.  I got to hold Michael for the first time today.  They call in Kangaroo care and it involves skin to skin contact with mom (or dad).  The skin to skin contact is good for their growth, metabolism and digestion of premature babies.  The MD prefers it last at least one hour (as long as his body temperature is ok).  Since he tolerated the first one just fine, we may be able to hold him for longer next time (daddy's turn is next).  With preemie's they try not to bother them too much.  Every 4 hours they open his bed up, change his diaper, take his temperature and other vitals.  Other than that it is best not to stimulate them too much.  Today was also exciting because Michael opened his eyes!!!  We are assuming with the difficulty he had opening them that this was the first time he has opened them.  He was wearing his "shades" most of the time, so who knows...but it was still so very exciting to see his eyes.  We continue to thank everyone for their prayers.  We are so thankful for Michael's progess. 

Getting Michael situated, it takes two nurses to get him out.  They tape the ventilator and lines to me so they did not move.  He is so tiny, they just tucked him inside the top of my tank top. 

They cover him with lots of warm blankets...i know it is hard to see, but he is in there.

Mommy taking my temperature.....Look at my eyes!!!!

Michael holding on to Daddy's finger.

Look at my eyes!!!! 

Thursday August 18th

Sorry I have not posted in the last couple of days.  I was discharged from the hospital on Wednesday and we got home a lot later than we expected.  Since we have gotten home it has been pretty busy. The girls were so excited for mom to be home and for things to settle back into "normal."  Mike and I headed back to the hospital this morning after we dropped Madigan off for school.  We are happy to report that Michael is still doing very well.  He has now gained 2 ounces and weighs 1 pound 12 ounces.  He has also been tolerating his oral feeds pretty well.  He has been digesting most all of the breast milk they are giving him.  Today they flipped him over so he can start laying on his belly, and he looked pretty comfy.  As far as breathing goes he is still doing pretty well.  We spoke with the neonatologist today and he said he had hoped he would be off of the ventilator by now.  But he is just not strong enough to breathe completely on his own.  He said what they would do now is push forward with his nutrition ( via his TPN) in hopes to get him a little bigger and stronger and hopefully be able to extubate then.  His doctor said he was really happy with how well he was doing, however with premature babies things can change daily.  Mike and I are so thankful for all of the prayers for Michael.  God is SO good and we thank him for the amazing progress Michael has made so far.

This is Michael today finally getting to lay on his belly.  ( He always looks so greasy because they cover him in aquaphor every 4 hours when they change his diaper and move him around)

This is a close up of Michael.  He was born so early that his eyes are still fused shut.  They don't expect him to be able to open them for a couple of weeks.  Since his eyes are still fused, they keep his bed covered with a blanket to try and mimic him still being in the womb.  They said once a babies eyes open up in the womb they can actually see a lot of light, so they will remove it sometimes once his eyes open up. 

This is to show how tiny his feet are!  We have another picture I will try to upload another time that shows how Mike's wedding ring fits on both his foot and his hand. 

Tuesday August 16

We know there will be many ups and downs for Michael, and we are very thankful he had another good day today.  He is doing about the same (which is good ).  He did have to have 2 IV lines placed today.  The insertion of the PIC line was a pretty long procedure for him, however his nurse said he tolerated it very well.  Later tonight he had to have another IV line placed also.  They had to pull his umbilical lines, therefore they had to be replaced with something else to give his fluids/meds.  The stopped his Billi light (the blue glowing light) today.  The nurse said a lot of times it will be on and off and that right now his levels are good so they stop it.  It doesn't mean that he won't need it in the future.  The also started some feedings with breast milk.  He has a line in his nose that they are going to start feeding him very slowly.  The will start with 1 CC every 6 hours.  The nurse said what they do is before they give another feed, they draw up the contents of his stomach through the same feeding line to see how much his body is actually digesting.  Depending on what is remaining in his stomach, they will give him more.  If there is more than 1/2 the amount left, then they will hold his next feeding.  He will continue to get TPN and lipids through an IV as his main source of nutrition.  They did have to go up on his oxygen today a little to about 25% (room air is 21%) after his procedure.  His nurse also said this isn't to abnormal, they had to sedate him a little to put in the pic line.  He is still breathing above the vent, so taking most of his breaths on his own.  His nurse today was wonderful.  She took some pictures of him (once I get home I will upload them ) with Mike's wedding ring around his foot and arm.  It is truly amazing how little he is.  His weight is also holding steady at 740 grams.  This is his birth weight, it did go down to 730grams, however he gained the 10 grams back.  They expect him, like any other baby, to lose weight initially after birth.   Overall today was a really good day for Michael.  Thanks to everyone for all of the prayers, they are definitely working.  We really appreciate all of them, Michael still has a very long road ahead of him.  Tomorrow I will be discharged from the hospital.  It will definitely be a bittersweet day for me.  I am so excited to get home to the girls ( they are actually excited to see mom now) and get back home.  However, it will be very hard leaving this hospital with my precious little one still here.  I am very thankful  he is in very good hands.  In the short time we have been here I cannot possibly say enough wonderful things about the NICU staff.  From the Neonatologist who was at his delivery to his everyday nurses, everyone takes care of him like he is their own.  They keep us well informed and go above and beyond to make sure we have everything we need.  Thanks to everyone for all of your prayers, God is definitely working a small miracle in this little baby!
Jen

Monday August 15

Mike and I just got back from a visit to the NICU and got a good report  from Michael's nurse.  He is still doing well considering his size and gestational age.  Michael is on a ventilator, but breathing over the vent.  This means that he is actually breathing on his own most of the time, the ventilator supplements when he does not breathe.  Right now he is on 21% oxygen, which is the same percentage we breathe normally.  They are constantly readjusting his ventilator settings to meet his needs.  Today he is getting a blood transfusion.  The nurse said this is also pretty typical.  He definitely has a long road ahead of him, however we are very thankful for his progess so far.  Please keep him in your prayers, he is definitely a tough little fighter!!

AND his full name will be Michael Anthony Bonofiglio

We really appreciate all of the prayers and help from all of our family and friends!!!
Mike and Jen

Baby Michael- Saturday August 13

Well I wish I could say I have not posted in a while because all is still calm, but that is definitely not the case.  Friday morning about 4am I woke up with contractions.  Just as a precaution they transferred me to labor and delivery.  They gave me procardia (which did not help) to try and stop the contractions.  The procardia did not work so they then started IV Magnesium, which is really the best thing to stop the contractions.  Around midnight or so after they gave me some morphine to help me relax the contractions finally slowed.  All was good saturday until about 3pm.  I was still on the IV magnesium and the contractions started in and I started gushing blood with each contraction.  I also had developed a fever and my pulse was extremely high.  That coupled with the fact that Michael had some deceleration in his heartrate with the contractions led all of the MD's to decide to deliver.    They thought it was best for me and Michael to deliver under somewhat controlled conditions, as opposed to waiting until I am excessively bleeding and doing an ER c-Section.  Also they did not have too much left to stop the contractions.  So late Saturday evening Michael (we dont have a middle name yet)  was born via c section.  He is 1 pound 10 ounces and obviously the smallest baby I have ever seen.  The NICU doctors told us this first 24 hours would be very critical in seeing how he would do.  But initially the Neonatologist told us he was looking very good for a 24week 6 day baby.  We know he is going to have a long road ahead and now we are just praying, a lot, for him.  We know this is (and always has been ) in God's hands, no different from any other situation in our lives.  We truly appreciate everyones prayers and help through this rough time.  I know we will have a long road ahead of us, and though it may not be easy, our faith will help guide us through.

Thanks again for everyone's love and support...and keep Michael in your prayers!!
Jen

Thursday August 8th

In some ways it is hard to believe we have already been here a week, and then looking back it has seemed like forever.  I haven't updated in a couple of days because thankfully everything has pretty much stayed the same.  I always hesitate posting this because in a moments notice we know things can change.  But for now the bleeding remains continuous, but light and baby continues to look good.  He/She was on the monitor for 30 minutes today and the technician said he/she looked great for a 24 weeker.  Usually, she said, their heartrate is not reactive on the monitor at this age, however our little one's heart rate was.  She said our little one was a "rock star" and it was a good thing...and that is all we are really concerned about.  So for now everything is still the same.....we are hoping it stays this way for a while!!!

Monday August 8

Everything is pretty much staying stable for now (which is good).  My blood levels are back up to 9.8 after the transfusion.  They will just continue to check it and give more blood if needed.  They will now be checking weekly amniotic fluid levels around the baby.  They did the first one today and everything is still good.  They are also going to start monitoring activity for 30 minute intervals twice weekly.  So far things are holding steady.  Now we are just praying for time for this baby to grow!!!

Saturday August 6th

Today the baby is still doing just fine, heart rate remains normal.  However this morning my blood levels dropped from 8.3 to 7.4.  The specialist was worried since I was still bleeding that my levels would continue to drop so they went ahead and tranfused 2 units of blood today.  I have had several family members ask about donating blood specifically for me and the is what Dr matuszek said.  It is hard in the situation I am in to predict when I will need the blood.  It is not like a planned surgery on a specific date.  The other thing she stated is that in OB it typically takes more blood than normal since your entire blood volume circulates through your uterus every 8 minutes.  You can only donate blood every so many days, so it would be next to impossible for even a few people to be able to donate the amount of blood I will possibly need.  And once again we will not know when or if I will need more.  So I appreciate everyone's concern and willingness to donate, but in this situation I dont think it will work. 

Jen

Friday August 5th

We had another ultrasound today and the baby still looks great. The baby measured 1 lb 11oz (+/- 4oz) and is still measuring above the due date.  The placenta is still separated and the main concern now is if the placenta continues to separate. Right now they are just going to monitor me and the baby.  The are looking for the baby to continue to grow, stay active and for the amniotic fluid levels to remain normal.  They are just going to continue monitoring me for both blood levels and amount of bleeding.  We had the first steroid shot today and they will give the second dose tomorrow, 24 hours later.  That is about all we have to update for now.  The situation is still about the same.

We appreciate everyone prayers and support,
Mike and Jen

Thursday August 4th

Just in case everyone was not aware yet.  As of today we are 23 weeks and 4 days along.  We were admited to the hospital on Tuesday August 2 after seeing the high risk OB.  Basically what is going on is we have a placental abruption.  There is some blood at the top of the uterus and also quite a bit blood and clots at the bottom covering the cervix.  They made the decision to put me in the hospital due to the fact the baby is almost viable and I am bleeding significantly.  We were seen in the ER here approximately 3 weeks ago.  At that time my Hemoglobin was 11, when I was admitted it was 8.8 and today it is 8.3.  They tell me normal is approx 10 and they will have to transfuse if I get down to 6.  The high risk OB said they will tranfuse as long as everything else is going ok until about 30 weeks.  The only good news through all of this is that this is not seem to be affecting the baby.  The ultrasound on Tuesday showed the baby was actually measuring ahead at 23w5d and was approx 1 lb 6oz and was in 67% for size.  The heartrate has remained normal, even through all of the blood gushes.  The plan the Dr's give me at this point in time is to just wait and monitor me and the baby.  As long as my bleeding stops every now and then and does  not continually gush, we will continue on and just treat me with blood transfusions.  They will be monitoring the baby to make sure he/she is growing appropriately and handeling the stress.  If either I start bleeding and they cannot get it to stop or if the baby shows signs of distress then they will do an emergency C-section.  I am scheduled to have another U/S tomorrow and they will give me my first shot of Betamethasone (steroid) which is given to help prevent brain bleeds in extremely premature babies.  At this point in time we just wait...and pray a lot...that is about all we can do.

Jen

Extra note on the girls***
I am sure everyone is wondering about the girls.  They seem to be doing fine right now.  Madigan was a little upset, but was in a much better spirit when she came to the hospital last night.  St Johns is very family friendly and the girls can go to the freezer to get ice cream and there is a family room here with games and crafts.  Last night the nurse even brought them some coloring books and crayons to the room for them.  The past few weeks both my mom and mikes mom have been taking turns watching the girls and taking care of things at the house for us.  Once my mom has to start the new school year, Dola will pretty much be living at our house.  Mike and I are so thankful and blessed for our wonderful families.  I do not know how we would do all of this without them.  It relieves a tremendous amout of stress to know the girls are taken care of very well.  They may be a little spoiled by the grandparents when all of this is done....but that we are very thankful for. 

Keeping everyone up to date!

Well here goes!  I have never done this before so we will see what happens.  I have a friend who did one of these when her son was born and required an extensive hospital stay.  I thought this might be a good way to keep everyone informed on the situation as much as we can.  I am sure I will have a hard time remembering who I have already informed with lab results/updates and MD reports.  I will try to post when I get some info and we will see how this goes!   I apologize in advance for all of the improper grammer and misspelled words...I am a pharmacist, not an english major....and I guarantee there will be a lot!