Devastated...

I've always been honest and open about how I feel and what has happened in our life on this blog.

Last night before bed I thought about how I proceed with this blog from here, do I proceed with it, or it is time to end it.  I honestly struggled.

People don't want to hear about sad news... there is enough sad news in the world.  I had hoped our blog was a source of happiness, of laughs and of the honest accounts of what it has been like for me to become a mother and raise our children.  But today I am not sure how to go forward and for the first time I feel torn.  Do I try to put on a happy face, continue to try and share what blessings I am thankful for in Noah's short life, or do I tell the truth...  Do I share just how devastated, destroyed and hurting I am?  

So here's what I've decided... I'm going to share how I feel today, how I honestly feel.  I'm not sure yet if I will continue to write here or if its time for my feelings to be recorded for only myself.  I hope for days when my eyes meet the sun and I feel a tiny bit of happiness, today I don't know how I will ever find it.  But I try to have hope.  I try.

Here is how I feel today...

Devastation...pain so heavy and so hurtful that my heart feels physically too broken to get out of bed.  A burden to which I have no desire to walk through the steps of life like I had before.  Everywhere I turn, reminders of the life that was living inside of me that is no more.  The life I anticipated, dreamed of, wanted more than anything.  Those future firsts I longed for... now just crushed dreams.  I don not know how to move forward.  I have lost faith in thinking there can be happier days ahead.  I smile and try to move on but feel nothing but pain and hurt.  I long to be with Noah.  To care for him, for he was my baby and babies need their mother.  I just don't know how to move on, to pick up the million broken pieces of my heart... and I just don't know if I want to.  This is how I feel... devastated, broken, beyond any repair.

And yet, I will keep going, I did get out of bed and I will keep going.  Gabriel, Michael and Isabelle still need me, and Jarrett a partner... so as broken as I am, I will keep going.  I have no choice, I must for them and for Noah... that is what I know he'd want.

Angie

Noah Haskovec Tribute Video...

Today we said goodbye to our beloved Noah.  It was another one of those terribly difficult days.  I can't say that one day has been easier than the other... it seems to be a series of a terribly hard day followed by another one.

There have been so many things I want and have to share on this blog that I plan to be writing a lot this week.

Before Noah passed away I begged him to send me signs from Heaven that he is okay.  I told him to send me rainbows like Noah saw in the Bible.  Thankfully there have been so many signs, I can't wait to share some of the winks I've received from above.  It gives me peace.

Tonight I share with you the tribute video I made for our baby.  Some great people from our home town in Iowa, offered to help me make a tribute video for Noah, but with everything going on to prepare for the ceremony I didn't get them the pictures to them before the service.  Having a video that shared our experience with our precious 4th child was something important for me to have to share, so  I decided I wanted to try to make a video for our Noah.  Thanks to some help from Uncle Nolan in the formatting process, I'm very happy with out it turned out.  I think Noah would have liked it too.

Tonight I share it with you...

Thank you for everyone who has prayed for him, prayed for us, given gifts, helped us in so many ways... we will never forget the love and support and we will always be thankful.

Noah, I know your looking down at us from Heaven and while I miss you like crazy and my heart is still broken in a million pieces, I feel some peace knowing you are in a better place.

A friend of Mommy's told me today that I didn't have to say goodbye to you (I didn't know how I was going to do it).  Mommy's friend said, I can just say see you later, because someday we will meet again.  So my little buddy, please know how much you are loved and missed.  And my precious son, Mommy will see you later.  I love you Noah James.... my heart is always with you.

Until next time,
Angie

Noah James Haskovec... Obituary

 Our precious angel, Noah James Haskovec, blessed his family with his arrival on Saturday, June 13 at 1:29 a.m.   As excited as his family was to meet him, Noah was just as excited to join his loving family, surprising them by coming 16 weeks early.  While tiny, weighing 1 pound 11 ounces, and 12 inches long, he was mighty and a very strong fighter.

For 12 wonderful days, Noah, his mommy, daddy, his two brothers, Gabriel and Michael, and his big sister, Isabelle, enjoyed being a family, celebrating and thanking God for his health victories and praying as he faced new challenges.  Noah was baptized on June 23, surrounded by his family and sponsors, Anita Petersen, Marjory Meyer, and Jeremy and Natalie Haskovec.

Some of his family's favorite moments together with Noah were getting to hold his hand, meeting his brothers and sister, giving him a bath, feeding him milk, and getting to hold him.  Noah made many friends in his time in the NICU, and was cared for by an exceptional team of doctors and nurses.

Noah fought valiantly but in the end was destined to join our great creator in Heaven.  In the arms of his mommy and daddy, Noah took his final breath and left this world to join our savior on Thursday, June 25 at 12:10 p.m.

He is survived by his mommy, Angie, daddy, Jarrett, big brothers, Gabriel and Michael, and big sister Isabelle; his loving grandparents, Joe and Sharon Haskovec and Chip and Darlene Schwickerath; his great grandmother, Doris Haskovec, and great grandfather, Ray Schwickerath; his aunts and uncles, Jeremy and Natalie Haskovec, Nolan Haskovec, Megan and Adam Abbas, Jonas and Kacee Schwickerath, and MaeLyn and Aaron Heying; his cousins, Alex, Bennett, and Julia Haskovec, Tyler and Ava Manning, and Mason and Willa Abbas; and, finally, by all those who love and prayed for him.  His family would like to acknowledge and thank his wonderful care team at the NICU at Banner Desert Medical Center, including Melanie Ryan, Dr. Hamburg, Camilla, Brandi, Lauren, and Becky.  

Noah’s time on Earth was short but the impact he made on so many lives was great.  He will always be in our thoughts, he will always be missed, and he will always be loved.  

 God bless Noah James Haskovec.

Funeral Home Obituary listing:
http://obits.dignitymemorial.com/dignity-memorial/obituary.aspx?n=Noah-Haskovec&lc=4044&pid=175172126&mid=6498367&cid=em.legacy.dm.4044.6498367&eid=sp_sciobitposted

Services for Noah James Haskovec

Today is definitely one of those days, when you force yourself out of bed, put one foot in front of the other and just do what you have to do to get through.

In the past 5 hours we went to the funeral home, toured a cemetery and went to our church to pick out the service details for our baby.  Every step of this process screams to me, "NO PARENT SHOULD HAVE TO DO THIS."  And yet, we are doing it.  I find comfort in knowing Noah would LOVE the service we have picked out for him and it is going to be beautiful.

For all the support we've received from family and friends, we are so thankful.  And if you would like to join us in celebrating his life, we invite you to be a part.  We know he would want to have those who thought of him, prayed for him and supported us along the way to be a part of his final goodbye.  We will celebrate Noah's short but impactful life and give thanks for the time we had.

Tomorrow we will have visitation for Noah James Haskovec at Valley of the Sun Funeral Home in Chandler, AZ.

Visitation: 4-6 p.m. Saturday, June 27
Valley of the Sun:
10940 E Chandler Heights Road
Chandler, AZ 85248
www.valleyofthesunfuneralhome.com

Funeral: 3:30, Sunday, June 28
On Sunday, at 3:30 p.m. we will celebrate Noah's life at:
Gesethmane Lutheran Church
1035 E Guadalupe Road
Tempe AZ  85283
http://glctempe.com/

We thank you for all the thoughts, prayers and support we have been given.

Until next time,
Angie

No words....

I thought yesterday was the most difficult day of my life, until I realized this morning, I was wrong. Today was harder.  At 12:10 this afternoon, I said goodbye to my beautiful baby boy.  He was everything I hoped and dreamed he would be as I carried him inside me for 24 weeks.  He was/is the answer to our dream that we carried for 10 plus years of infertility, he was and will always be our miracle baby.

I will write more tomorrow about our last days together and the amazing moments of feeling his skin pressed against ours.  But tonight I simply want to say thank you.  Thank you God for blessing us with a beautiful, tiny little version of Jarrett and me.  Thank you for the most amazing, difficult and heart breaking 12 days of my life.  Thank you for all the support we have been given from family, friends, and all of you who read this and pray for us.  I keep thinking about the song, "The Dance" and the lyrics.... "Our lives, are better left to chance.  I could have missed the pain, but I'd had to miss, the dance."

From the first moments in the NICU, the doctors used the term the NICU Dance and tonight, I know exactly what they mean.  There were moments of absolute greatness... the moment he clenched his tiny fingers around mine, the opportunity to feed him nutrients that came from me, the amazing doctors and nurses that cared for Noah as if he was their son.  There were also moments of great heart ache, of excruciating helplessness of wanting to do everything we could for our son, and wanting more than anything to help but we couldn't, or begging God to heal him when he continued to turn for the worse.  There are many hard, painful and terrible things that people have to encounter in this world, and now as a parent who has to prepare for a funeral for their child, I believe I am living through something that has to be one of the most difficult things in life.  And yet, like the song, I'm glad I had the chance, I could have missed the pain, but I'd had to miss, the dance.  Meeting Noah James and getting to be his mommy on this Earth for 12 days was well worth the pain I feel, for he brought me/us such overwhelming joy.

I told Jarrett last night as I held our tiny and very very sick baby against my chest, that I could literally feel the pain of my heart breaking into two.  A broken heart doesn't just hurt emotionally, physically it is unbearable too.

Tonight I wish more than anything I was lying in that antepartum department with my precious, active and full of life son, still inside me.  Instead tonight I struggle how I learn to go on without him here on this Earth.

Last night, as the tears flowed uncontrollably down my face, and I looked at my son who was oh so sick and calling for us to let him go; I looked up and across the bed from him at his wonderful nurse Brandee.  I said, "Brandee, I don't know how to go on without him.  How do I do this?"  She looked at me, as the tears filled her eyes, she reached her hand across over Noah to mine and she said, "Angie, you wake up tomorrow morning to three beautiful children who are waiting for you at home.  They will be asking for you to get them cereal, to find their shoes and to help them with their homework.  And I know it's going to hurt more than anything else you've had to do in your life, but you get yourself up and out of bed and you go get them cereal, you find their shoes, you help them with their homework and you just keep taking care of them.  Your children are going to help you and Jarrett get through this and you'll do just fine.  You know why?  Because you are going to have an angel watching down from Heaven protecting and caring for you all."

Noah James, you will always be one of our greatest blessings.  You will always be loved.  You will always be missed... and you'll always have a big piece of Mommy's heart.

Rest easy tonight my angel.  I hope your being showered with love, like the love you received here.  I love you, I miss you and I'll be thinking of you always.  

Until we meet again.

Mommy

Heaven gained another angel

Our little angel Noah went to be with the Lord at 12:10 pm today. We will always love him, always miss him, and give thanks for all the blessings he brought us. God bless Noah.

The hardest decision

Noah has been fighting hard for all 12 days of his life. Despite a few improvements throughout the night and day, the medical team has made it clear that he will only continue to struggle and if by some miracle survive all these complications that his quality of life will be greatly diminished. Thus it is with heavy hearts that the decision to let him go be with God has been made. 

Please pray for Angie, Jarrett, Gabriel, Michael and Isabelle to be strong in their grief and to help them through this unimaginable pain. And pray for Noah James to be carried quietly and painlessly to his place with the Lord. And to know that he was and is so greatly loved and will be missed each and every day of our lives.

Thank you to all who have supported the Haskovecs in so many ways during this trying time. They are going to need our love, prayers and understanding so much in the long days ahead. 

Our Fighter

It's 5 am and Noah remains with us. His vitals did improve slightly. His pH continues to be acidic which the doctors tell us could mean significant long term brain damage, so all we do it wait. He continues to be the fighter he has been from the beginning. Despite multiple medications they are giving him to stay sedated, Noah continues to fight, tries to turn his head and move his arms and legs. He has retained a lot of fluid and is now seeping red blood like fluid from his skin. We lift everything up to God and try to trust in what ever plan is unfolding around us.

In God's Hands

Overnight Noah has taken a turn for the worse. The doctors and nurses are working feverishly to stablize him. We trust in the Lord. And if Noah is called home we will find a way to put one foot in front of the other and try to live the best life we can until we meet him again. We pray God allows him to stay with us. Thank you for your continued prayers and support. Noah is in God's Hand's. We love you Noah James.

Day 11: A Child of God

Today was Noah's baptism and it was even more special that I could have dreamed.  Last night when I went to bed, I felt sad that we weren't able to hold the service at church like most families, but then I realized, Noah's baptism will be a bit extra special.  Not very many babies get to shut down the NICU for their service, but that's what Noah did.

This morning I woke at normal time 4:45 and raced to get out the door before the rest of the house stirred.  Its getting harder to leave in the mornings if the kids are awake.  Isabelle begs me through her tears to stay with her.  She cries, "Mommy, don't go!"  It tears my heart out and I try to reassure her I will be back soon.  There just isn't enough of me to go around.  I feel torn between so many things.  I pray Gabriel, Michael and Isabelle will understand Dad and my absenteeism in the coming months and I pray someday when their baby brother comes home, we can all reunite in our family bonding.

This morning on my way to the hospital, I prayed as I normally do that Noah would remain stable and that his respiratory issues would improve.  During the night, Brandee kept me posted on his progress, telling me he didn't have as good of a night as the evening before but she had made some small progress on weaning him down.  When I arrived at the hospital he seemed stable, still on his tummy with his head to the left.  He loves to turn his head to the left and seems most comfortable on his tummy.  Brandee says most babies like their tummies because it makes it easier for them to breathe, since the lungs are towards the back of their body.

At cares this morning Brandee attempted to turn Noah back to his back.  He was not thrilled with the move and definitely made it known, by dropping all of his vitals and struggling to maintain his oxygen levels.  Jarrett was at the hospital this am in time to watch them do another x-ray to see if his upper right lung that was deflated had rebounded.  Jarrett called me at work to give me the report.  His upper right lung improved but overall they are seeing more fluid in his lungs that they don't like.  They see clearly now that his PDA is causing complications.  But the doctors feel they'd like to hold off on doing something until he gets a bit bigger and gains some strength.  However if they have to do something they will.  We pray that Noah's body can support and sustain the other organs not getting the oxygenated blood (or as much as they need) for a couple of weeks.  Then he will be in a better shape to tolerate the medication they will attempt to give him to close the valve.  The other thing we hope and pray for is that the ductus will automatically close on its own.  It would be like winning the lottery.

The morning progressed and for some reason I felt an unusual amount of anxiety.  I couldn't put my finger on it but around 11 I called Jarrett quickly and said, "I can't shake this feeling... I'm worried."  He reminded me to have faith and I prayed while I gathered Noah's future feedings in my office.

After work I raced to the hospital to find Noah's new nurse Lauren helping Noah's alarms.  She said he had had a rough morning and had been on 100% oxygen since 11.  Maybe its a mother's instinct or just a worrisome moment, but I couldn't help but think of the correlation.

I sat quietly with Noah by myself at his bedside for the next almost 2 hours and prayed.  I sang him "Twinkle Twinkle Little Star", it was a song I sand often for Isabelle on our way to school and I thought just maybe he would recognize my voice and the lullaby.   It was very peaceful and his vitals seemed stable. I talked with his nurse about the baptism and she said she talked to the charge nurse and they decided they would close down his pod so that other visitors were limited and wouldn't interrupt his special ceremony.  I thought it was very nice of them to offer to do that for us.

At 3:30 Nana, Papa, Grandma Darlene, Aunt Marjory, Aunt Anita, Uncle Andy, Cousin Alicia, Uncle Jeremy, Aunt Natalie and Pastor Troy arrived for his special event.  We met in the family lounge and shared with everyone that Noah is very sensitive to sound but that the nurses closed the NICU Pod D for him so that everyone could come in.  We all walked to the pod, washed up as normal protocol and gathered around his bed.  Pastor Troy began with a prayer, read bible verses that talked about baptism and then moved to the side of Noah's bed.  I removed the scent cloth covering his eyes and then Pastor baptized him in the name of the Father, Son and Holy Spirit.   We then finished with a prayer.  It was a simple but very special ceremony.

Pastor Troy said we can have a re-dedication ceremony after he comes home.  I long for that day.

After his baptism I returned to his bedside and noticed his oxygen levels were decreasing and for the next two hours he fell below the levels we'd like to see him.  For a while again he was at 100% oxygen.  I hate seeing him like that and try to remind myself the staff know what they are doing.  Trust them.

Jarrett and I went home for a bit after he stabilized a bit and talked to the rest of the family.  One of the many wonderful people who have been bringing us dinner tonight, brought us a Baptism cake to celebrate Noah.  It was such a nice treat.

Tonight we returned back to the NICU and found Noah's vitals improved.  It is always such a huge relief.  Tonight at cares I got to change Noah's diaper all by myself, still a scary thing as I don't want to hurt him.  And Jarrett got to weigh Noah.  He weighed 780 grams, which calculates to 1 pound 12 ounces.  We think it might be a bit off, but are still happy he showed some gains- must be all those fluids they are giving him.

Now that Noah has been given the opportunity to be on his tummy he has decided he is no longer interested in being on his back and he tells all his nurses this by dropping his vitals.  Tonight his nurse tried to put him on his side and he wasn't not happy about it.  After about 30 minutes of alarms beeping and stats dropping she put him back on his tummy.  Immediately he rebounded.

One of his nurses earlier today, after having Noah fight to keep his head facing the left side, asked me what side Jarrett and I stand on when we come to see him.  I told her I always go to the left side.  She said, "that makes a lot of sense now, he's looking and listening for you."

Another quick story about Noah telling us what he wants.  This afternoon his nurse moved him from facing on his left side to turning his head on the right side.  Noah wasn't interested and tried several times to pick up his head and turn it back.  The nurses were impressed.  Most babies his age do not have the strength to do that.  And while they were impressed by his strength they really weren't impressed because he has a tube in they don't want to move.  After a few talks and him not being too interested in giving in, he finally settled down and let them have their way.  I told them he might get his stubbornness from his mother.

Finally, my dad flew in tonight and was able to meet his 4th grandson.  It was a special night and even dad said, "I can't believe how tiny he is."

Yep, Dad he's tiny, but he's also a fighter and today, our little miracle was baptized as a child of God. Another good day.

Noah- Sleep well my baby.  Today was a special day, as you were baptized.  I can't wait to see you in the morning.  Until then my precious little one, know that mommy's heart is right with you.

Until next time,
Angie

Day 10: Another milestone.

 Just a quick update tonight as I hope to try and catch up on some sleep tonight.   Today was a good day.  Noah was stable and they were able to wean down some of his oxygen concentration.  The doctors also ruled out any infection that they worried could be starting.  We are thankful for that.

They also were able to identify what they believe to be causing some of Noah’s respiratory problems as well as the stress being put on his heart.  As I mentioned last night, one of the possible causes is a Patent Ductus Arteriosus and it turns out from the ultrasound, Noah has this condition.  The doctor said his ductus is being forced wide open because of the blood being pushed through his heart.  The options to fix this is to administer medication that will cause the duct and other blood vessels to contract.  The other option is to have surgery.  Each solution presents its own challenges and risks.  Right now the doctors think Noah is too weak to have the surgery and they would like to hold off on the medication until they can try and have Noah get a bit bigger.  They think they can control his condition for a few days (to hopefully a few weeks) by giving him some blood pressure medication to reduce the stress to the heart.  So far, it is helping.

Today he got to do tummy time!  It was so nice to see his back and his head.  He has really fine light brown hair along with lighter hair in front.

There are so many things to worry about that I’m not even sure I’m worrying about 10% of all the things I should be concerned about.  I instead try to focus on the good news.  Here are the good news updates for today… Noah was able to stool today and the nurse was very excited it was more significant than any other BM he has made.  I never thought I’d get so excited about poop, but these days, we understand it to be a huge development as they are feeling his digestive track is starting to work.  Noah still isn’t having milk, its been just under a week, but the doctors assure us, this is going to be continuous start and stop process.

At first we were worried but they assured us that he is getting all of the nutrients that he needed from his TPN fluids.  We are encouraged as we are seeing his weight go in the right direction.  Last night he jumped from 610 grams to a 670 (he gained a whole two ounces).  He now weighs, 1 pound 8 ounces.  Tonight he gain another 5 grams.  Yes every tiny weight gain is positive.  We pray he continues to trend in this positive direction.

Today when I visited Noah I was excited to see that they had him propped up on his tummy.  He looked so comfy curled around the tiny pillow in his bed and appeared to be sleeping soundly. Cindy, the nurse practitioner came around and shared with us, she and Dr. Martin are encouraged by how Noah is doing today.

They continue to try and keep his interactions as minimal as possible.  He seems to love his dark little cave and is doing slightly better when it comes to care times.  He doesn’t seem to drop his stats like he was in the earlier days.

The final development we wanted to share is that tomorrow will be a very special day for Noah.  We are having him baptized.  In talking with one of his physicians yesterday she asked us about our faith and shared, “You know you can have him blessed or baptized if you’d like.”  Jarrett and I had talked about it but didn’t know if it would be possible to anything until he moved to a different area.  Hearing Camilla say it was okay was reassuring.  Getting the approval, we decided we wanted to have him baptized as soon as possible.  Tomorrow afternoon Noah will be baptized.  Although our plan was to have him baptized in church this fall, we will, like this whole process, be flexible, do what Noah wants and  host it in Pod D.  It will be just as special.  If you read this and happen to think of him around 3:45 p.m., we would greatly appreciate your prayers. 

All in all today was a good day.  We just left the hospital and he’s doing okay.  They’ve weaned him from his pressures on the ventilator today so he is showing good progress.  Tonight at cares he decided to show us his bowels are working well.  We all cheered as he went to the bathroom again.  It’s the small victories right? And his wonderful nurse Brandi asked us if we would consider making her his primary nurse for night shift? She said she really liked taking care of him last night and would love to help take care of him going forward.  I told her we would love it if she would care for him.

I remember writing, it seems just a few hours ago, about Noah’s first 24 hours.  I remember thinking it will be a huge victory if or when we get to day 10, and here we are today. The last 10 days have been difficult, I’m not gonna sugar coat it.  We feel stretched to our limits in trying to be everywhere we need to be and trying to handle it all.  But yet, I look at today, day 10 and give great thanks that we’ve come this far.  I look now ahead to day 14 and hope that we have good news to report as he becomes 2 weeks old. And still I view this as a day to day, hour to hour process.   In the midst of this very challenging time, there are so many things to be thankful for.  Tonight we give thanks for a good day and we look forward to a special day tomorrow.

Today a friend of mine shared the lyrics to the hymn “Because He Lives” and I can’t help but hear the words of the song speak to what we are going through…

“How sweet to hold a newborn baby.  And feel the pride, and joy he gives.  But greater still the calm assurance, the child can face uncertain days... just because he lives.”

Good night my precious baby.  We love you to the moon, the stars and beyond. 

Until next time,

Angie

Day 9: Father's Day

Happy Father's Day to all the amazing fathers across the miles.  Never did we expect to spend Jarrett's father's day like this but we give thanks, this year Jarrett is father to four children.  Guess our littlest blessing couldn't wait to meet his Daddy.

When I woke up this morning I told myself today was going to be a good day.  Last night Noah remained stable (while not at the levels that are ideal) enough where Jarrett and I went home and tried to get some sleep.  Noah's nurse Tamera was great, she was super supportive of us, and let Noah alone as much as possible.  He does not like to be bothered.  As long as he can be in his dark little cave, without any stimulants, he seems to be "happy".  Last night when we left they had hoped to be able to wean down his oxygen levels.

Tamera assured me that if anything would change with Noah, she would call.  Then she said she would call me at 6:30 before shift end to give me a report.  Just seeing how willing she was to keep us informed made me feel comfortable enough to leave.  We went home and both crashed right away.  When I woke up to pump, I called in each time and got an update.  Thankfully Tamera said not much had changed and all his numbers were almost the same.  She said while we wanted to see his numbers get better, at least the didn't get worse.  At 6:30 when Tamara was getting ready to end shift she called and said he continued to remain stable and that his doctors would be rounding between 9 and 11.

Jarrett and I felt confident enough to go to church.  Our church and Pastor Troy have been very supportive.  Pastor has visited the hospital already a couple of times and continues to text Jarrett to get updates.  He plans to come to the hospital again early this week.  While I wanted to go to church and prayed it relieved some of the anxiety I have been feeling, it was another first.  Just two weeks ago, I sat in church, while having contractions and prayed to God to protect our baby and stop the complications that were happening.  Today I sat in church and felt part of me was missing.  There were several parts of the service that spoke to me and our situation.   The message was all about trusting God and putting our entire faith into him and his plan.  During the prayer of intentions, our Pastor again asked the congregation to pray for our precious Noah.  I did my best to bite my lip and hold it all in but couldn't.  Hearing that others are praying for our son is so heart warming and yet it reminds me just how sick my precious baby is.  There are so many emotions I feel, I go from being okay and feeling confident we will walk out these hospital doors with my baby, to images in my mind of having to say goodbye.  I beg God to let him keep our precious baby here with us and to grow together as a family. After communion we sang, "How Great Thou Art"  It is one of my favorite hymns and it always reminds me of my grandmother Virginia and Jarrett's grandmother Hazel.  Throughout these past 2 weeks, I have asked God to let Grandma Virginia and Grandma Hazel be Noah's angels, watching over his bedside and keeping him safe when we can't be at the hospital.   As the congregation sang, I thought of them and knew Grandma Hazel and Grandma Virginia would be so happy to have met him.  I feel they are with us.

After church Jarrett and I came to the hospital where we found Dr. Martin and Camilla making their rounds.  They came by and gave us an update of where things stand today. Camilla said, "Noah has us thinking today.  There are a few things we are tossing around in our mind."  Noah's oxygen levels remain high, still at 64% as I type this.  They would like to see him down in the low 30's or even 20's if possible.  In addition to that his body is showing a lot of acidity.  This can be from several factors, but Dr. Martin said it can be caused usually be one of three things.  1) An infection.  2) Under preforming Stupid Preemie Kidneys (yes that is the medical term they used... basically his kidneys are so immature they don't filter the urine like they should and he ends up peeing out all the ph his body needs).  3) Patent Ductus Arteriosus, hows that for me using an actual medical term.  Basically this condition happens in the connection between two major blood vessels near the heart.  The ductus is open when a baby is in the womb.  If the ductus doesn't close properly after birth, a baby can have breathing problems or heart failure.  Small PDA's can close on their own but some babies need medication or surgery.  

To test for these things, this afternoon Noah has an ultrasound on his heart, they tested his urine and they tried to send in a blood sample to see if his white blood cells were up.  Unfortunately they tried three times to send in the blood but each time it clotted before it could be tested.  The doctor decided to wait to see if the blood they took yesterday will grow cultures, from there they will determine if they have to administer antibiotics or not.  

In my quest to make today a good day, I decided to focus on every positive piece of news I could.  We asked the doctor about Noah's status going forward and how long they would anticipate him being on a respirator.  The doctor said he couldn't say for sue, but if he had to guess he would assume 2 months.  He then continued and said, "In my opinion, Noah may be that child who goes home with Oxygen for a few weeks"  Hearing Dr. Martin say that, was music to my ears.  The music part.... "Noah may go home with Oxygen"  I just want to hear the part about going home over and over  I know we have a mountain of obstacles to overcome before then, but it was the first time any doctor mentioned anything about the possibility of going home.  

Jarrett and I stayed for the majority of the day at the hospital where we were able to talk with one of our favorite nurses Melanie.  She is so wonderful and Noah really likes her.  She is very soft spoken, calls him Boo Bear, and is delicate with all of her movements.  Noah's vitals increase when she's in working with him.  Today we asked her if she would consider becoming one of Noah's primary nurses.  Basically a primary nurse is someone who will always be assigned to Noah on the shifts she works.  We get to pick two day time primary nurses and two night time primary nurses.  When I asked Melanie she said, "It would be my honor.  I pray for him every day and miss him when I'm not at work."  It was another good in the day.

After asking Melanie to be his nurse, things continued to get better.  Camilla came around and gave us an update and asked us how many times we've gotten to kiss our son.  I told her we haven't, we've only been able to touch him with our hands.  She said, "You've got some catching up to do.  The doctor orders at least 17 kisses a day, so you better get to it."  Melanie said she'd be happy to help us catch up.  Just a few short minutes later it was time for cares and we got to open up Noah's lid on his incubator and kiss our son for the first time.  It was magical and kissing his tiny head, it was so soft, and he smelled so yummy.

Melanie took pictures and Jarrett and I soaked up every moment.  She then took our first pictures with our son.  It was a very special day.

As we were getting ready to leave, Melanie said, "Daddy, Noah has a father's day present for you."  We worked really hard on it and he hopes you'll like it.  Then she handed over a card I think Jarrett will cherish forever.

All in all, it was a good day.  Yes there are some scary things they are trying to figure out, but I'm focusing on the good stuff.  Here's hoping tomorrow is a good day too.

Isn't he the most precious baby ever?  I know I'm biased.  

And now we are home spending time with Gabriel, Michael and Isabelle.  They've been missing their daddy and want to spend time with him too.

Happy Father's Day to all the wonderful dad's out there.

Until next time,
Angie

PS:  God continues to wink at us.  Today, my great friend Leslie texted me the following message " This morning we were in church and during worship time I saw a very clear image of an angel at Noah's bedside and the angel had his hand on Noah's chest.  I believe that it is a sing of healing to come!  The angel was on Noah's left side and had his right hand completely covering his chest.  There was a warm soft light surrounding both of them and it was such a peaceful time.  I've never seen anything like that before and believe it was a message from God.  God is good!"  You're right Leslie, God it good.  We have hope for another day and give thanks for the good day we had.  

Day 8: The lesson in this journey...

Last night Jarrett and I stayed at the hospital until 3 a.m. watching, hoping and willing with all our might that Noah would become and remain stable.  As I said before, it has been the hardest part of our journey thus far.   The nurses and doctors here could see the stress and worry on our face, in our body language, in everything we did.  They offered us a nesting room to stay overnight and we debating staying but in the end decided to go home.  Noah's nurse said to call her as soon as we got home, and then to call her when ever I wanted.  When we got home I called and she said he was going okay and that we should get some sleep.

I crawled into bed, pulled the covers up over my head and collapsed into my pillow with my cell phone clutched in my hand.  I woke up this morning with my hand still cramped around my phone.  I called at 5 a.m. to check on him and was told his oxygen needs again went up but that they were still holding him stable.

I finally managed to get out of bed, the exhaustion is now fully set in, at 7 in time to quickly shower and race to Michael's swim meet.  Gabriel, Michael and Isabelle have been having all sorts of activities going on and I have not attended a single one since Noah was born.  While the kids are doing okay, the stress is really starting to impact them and we've noticed it clearly with Michael.  In talking with my mom, my aunt and Jarrett's mom, they all suggested maybe we do something individually with him to give him a bit more reassurance, things are going to be okay.  What that "okay" looks like, I have no idea and it is scary, but its going to be okay.  While my heart was pulling me to race off to the hospital again this morning, I knew my other son needed some support and it was time he got it from me.

I showered and raced off to the pool, only to arrive just a few minutes after his first race.  He came up to me, gave me a hug and said, "I love you mom"  and I told him he had done a great job.  He smiled, asked me how Noah was and said, I love you mom again"  For a boy who doesn't show a lot of emotion, he's full of it now, and I can tell this experience is fully impacting us all.  I stayed to watch the rest of his races and couldn't help but notice, all the other parents and families around.  They all were fully present at the pool cheering on their children.  I couldn't help but wish I was one of them, living in a world where all was right and normal.

In between Michael's races, I ran quickly to the grocery story to grab a few things Jarrett and I needed at the hospital.  It was the first time and it was another one of those facing the reality of where our lives had been compared to where they are now.  I raced through the store, picking up the necessities I had come into get, but couldn't help and notice the mothers with their sons, the dad's with their daughters and the families carrying on about their normal life.  It took everything in me not to cry, as I wished so desperately to be one of those families doing their normal shopping, with Noah still inside me. At the check out the clerk asked me how I was and for a second I thought about pouring every emotion inside me out onto her, but I swallowed hard, looked her in the eye and said, "I'm okay."  I left the store as quickly as I could and raced back to watch Michael.

After I arrived back, Jarrett and Gabriel came to watch along with Nana who had taken him bright and early.  Michael seemed so proud to have us there, walking along the pool deck with a big smile and a wave to us as he went to get lined up.  For those few steps, I saw in his eye, life seemed okay again.  Michael did a great job today finishing third twice and second twice.  It was the break we needed and I think the support he needed to be reminded "its all going to be okay."

As the swim meet was wrapping up, the hospital called my phone, it was Noah's doctor Camilla.  The first thing she said was, "Angela, this isn't an emergency."  She then went on to explain that after Noah's difficult night, they were reevaluating him and determined they'd like to put him on a new ventilator.  Instead of the oscillator, they are putting him on a Bunnell Jet high frequency ventilator.  Where his previous ventilator pushed air in and out of his lungs this new ventilator only pushes air in and then lets his body push the air out.  It is a gentle system that gently pushes more than 400 puffs of air into his lungs.  Noah is having some trouble with his lungs functioning properly.  Currently there are sections of his lungs that are deflated and that's causing oxygen issues, as well as some part of his lungs that are over-inflated, causing pain and his vitals to changes as a result.  They have increased his morphine and  are keeping him sedated.    Camilla called to inform us of this change and ask us to come to the hospital so they could explain more in person.

Jarrett and I said goodbye to the boys again and left them in the wonderful hands of Nana.  While Isabelle was with my mom and Marjory.  Our family has been so supportive, we don't know how we would have gotten through these last two weeks without them.  Together Jarrett and I raced back to the hospital.  This time our drive was quiet, I think we only exchanged a few words.  Both of us are pretty much emotionally taxed and while few words were spoken, we both knew exactly what the other is feeling.

We arrived at the hospital this time bringing some supplies to be here for the entire day and possible night.  Within minutes of arrival Noah's team of doctors, respiratory therapists and nurse was at our side.  They went into detail about where he was as of this morning and the challenges he is facing.  They remain fully committed to giving Noah everything he needs.  They provide reassurance and remind us that we are on an hour by hour, minute by minute timeline.  Jarrett remains pretty quiet while they talk, I can tell it really bothers him to hear difficult updates.  I try to provide support to him as thus far he's been the rock for me.  I tell him its okay if we take breaks and if he needs to go for a walk to get away from the alarming machines.  I listen carefully to what the doctors are telling us and ask as many questions as I can.  I forget half of the updates they share but hold onto any positive piece of news that is included in their updates.

As of the last 5 hours Noah has been at 100% oxygen, definitely NOT where we want him to be. They have been unable to wean him down to a lower level (we want to be around 23%), where he was about 28 hours ago.  In trying to look at the glass half full, he remains within his "range" with the oxygen at 100%.  Last night he continued to desent even with the oxygen at 100%.

Right now we wait for the results of the most recent chest x-ray and have learned they are going to adjust his breathing tube again.  We trust what the doctors are saying and just pray this latest adjustment is just what he needs to find Noah's happy spot.

Just a bit ago Jarrett and I decided to go together to grab some lunch in the hospital cafeteria.  We don't really feel like eating, but know we have to eat too.  Sitting down at the table, we prayed, looked down at our food and attempted to eat.  Just like in the car, few words were spoken but in looking at each other the tears flowed together.  In between the moments of weakness, I said to Jarrett, "I'm trying to see the lesson we are suppose to learn in this. I don't understand why we have to go through this?"  Jarrett reminded me we can't ask why, we must only trust.  He struggled to say "Its only after events are in the past that we can see the lesson to be learned."  I pray someday in the future, we look back with a healthy, active and feisty little boy, and say, "I see now why we went through that."

Jarrett and I finished our tear filled lunch and I told him I felt we needed to get back up to his pod as soon as possible.  We returned to find his oxygen levels slightly above his range, so we are happy to see at least its going in a good direction.  Just now the respiratory therapist, Becky came to retape Noah's tube.  They decided today to push it back in a teeny tiny bit.  Becky invited me to stand over her shoulder and watch.  Jarrett decided to leave.  Becky said its usually the moms who stay.  As Becky and Megan the nurse retaped Noah's face they let me take a picture of him before they reapplied the tape.  It was the first time getting to see his entire face,  Thank you God for giving me another first, something I prayed for last night and this morning.

This day has been yet another difficult day.  I know we are worn down and more emotional just because of the challenges from last night.  I think, while we trust God and his plan, we waiver between moments of great hope and moments of fear.  Today fear seeps in while we try to push it away.  In feeling so helpless, but yet such great love and desire to watch our baby boy grow and become a part of our family, Jarrett and I struggle with the fear of the worst case scenario.

And in the middle of that fear, we find again God winking at us.  In the pod next to Noah, there is a precious baby girl.  She is just over 3 pounds and seems to be thriving.  Yesterday I got to see the nurses hold her up during cares and she is so beautiful.  I think of her family and pray for them, along with all the other families here living in our new reality together.  I wonder about each of their stories and my heart hurts with them as we now know what the alarms mean.  The precious little girls Mom and brother were here with us last night as Noah was having all the desents and challenges.   While their family was celebrating her having a good day, we were in the middle of, well I think it is clear.

Moments ago, Jarrett and I sat facing one another, again having a moment of weakness, when around the curtain appeared the little baby girls mom.  She introduced herself as Veronica and reached out her hand.  She said, last night when you were here I wanted to come and talk with you but I know it was a challenging time.  She continued, "I am a woman of faith and I'm not sure if you are, but I wanted to let you know, last night when I was here with my daughter, I felt the Lord speak to me.  He wanted me to tell you that your son is going to be okay."  Tears filled my eyes, and I couldn't speak but grabbed her hand and nodded my head to say thank you.  My heart filled again with hope and trust that he's here guiding this whole plan.

Until next time,
Angie

Day 7: Its scary, its overwhelming, its painful.

A week ago tonight at this exact time, I was lying in the labor and delivery room in active labor.  Less than an hour from now Noah will celebrate another milestone, he has made it through his first 7 days.  He is now officially a week old.  Tonight I type this update from Pod 50 in the NICU, right next to Noah's bed.

The scary thing though is that earlier tonight, I feared he wouldn't make this milestone.  It has been a very scary evening and the most stressful night by a long shot.  Throughout my visits today I had been noticing that Noah's vital signs weren't as good as they have been in the past days.  While his heart rate looked good, his CO2 counts as well as his oxygen seemed off.  Each and every time I visited today Noah's vitals went into desat.  This means his oxygen levels plummeted down below the range they find acceptable.  His oxygen levels are to remain between 75 and 93 and today they were often well below that.  In fact when Jarrett was here for morning care this am, Noah desat into the lower 40's.  Very scary.

But I had hope today would be a good day like yesterday so I tried to push the out of the ordinary vital numbers out of my head.  Today was a big day for Noah in that they decided to do the ultrasound scan on his head to check for brain bleeds.  I was very nervous about this because we had been told the statistics on a baby the age of Noah having a brain bleed can be pretty great.  I was worried, and asked several family and friends to pray specifically for good news on this front.

This afternoon I couldn't get to the hospital fast enough to get the results.  The minute I walked in, I asked Noah's nurse if the results were back and she said yes.  She said the scan came back normal, meaning there are no brain bleeds.  This is HUGE news as the risk for brain bleeds are greatest within the first 72 hours of birth.  We feel like this is a huge victory to celebrate.

The other news we received this am during our visit to the hospital was that in the morning blood labs that were taken, indicated Noah's blood level (red blood cells) were low.  The doctor said it was time to give Noah blood.  In talking with his doctors, I learned that Noah only has the equivalent of 2 teaspoons of blood in his body.  Two teaspoons... doesn't that seem like a tiny amount?  I guess that's another indication of just how tiny he is.  This afternoon Noah received a blood transfusion which they hope will help him in many respects, including his acid/ph counts.  Right now he is tending to be a bit on the acid side as he's been peeing out so much he's loosing his PH in the urine.  The blood they gave him actually made him appear red tonight, think being extremely flushed.  They said it's common and its because his skin is still so transparent.  We pray the blood will help him.

Tonight when I arrived at the hospital, the minute I walked up to his bed, I saw that he had been in desat again.  His oxygen levels were again low and I sat back watching his nurse by his bedside.  She was working on hanging the lines (adding the IV's) and because it is a sterile procedure, I had to stay back behind the line.  As she changed the IV's I watched as Noah's vitals fell again.

And not only did they fall a little bit, they fell significantly.  Jarrett wasn't at the hospital yet, but as I saw one sign after another sign of Noah struggling, I texted him.  Jarrett and Michael were having a dad/son bonding night with Nana at the D-Backs game.  I watched for over an hour as Noah's nurse tried to "bring him back"  She turned up his oxygen, she sucked out his tube, she gave him some calming medicine... nothing was working and in fact his vitals continued to drop.  I texted Jarrett, "I think you need to leave the game and come to the hospital right now" These days we understand the seriousness of our texts, to which Jarrett replied back, "Leaving now"

While Jarrett, Nana and Michael made their way to the hospital, I watched in agony as my precious baby continued to go down and down.  Before long they had turned up the oscillator to the highest settings... and it still wasn't helping his vitals.  I prayed over and over again and begged God, "DO NOT TAKE HIM AWAY FROM ME, PLEASE!"  As nervous as I was, I could tell the nurse and his respiratory therapist were doing everything they could.  They were trying and nothing was working.  Soon they were each on their call buttons asking for Noah's Nurse practitioner as well as his lead doctor.  Soon there was a swarm of people at Noah's bedside, it was clear he was not stable and they were now just as concerned as me, the mom sitting in a chair feeling helpless.

The team raced around, trying to suction him out, trying to get his nice vibration of his chest back.  It was scary to look at him because when I'd look there was no jiggle, no movement, nothing.  Again I begged God, "PLEASE DO NOT TAKE HIM FROM ME.  PLEASE HELP HIM!"

Within seconds of looking at him, his doctor ordered an X-ray to see if his breathing tube had been bumped or was lodged too far down or not far enough in his lungs.  I'm not sure where the x-ray guy came from, but he was here within a minute, setting up to take the x-ray.  After the x-ray was taken, Andi, his nurse practitioner followed the x-ray tech out to get the results immediately.  Meanwhile Noah's alarm continued to sound, for 1 hour and 43 minutes his alarm went off.  I bowed my head and tried to pray as I told myself to put the noise out of my head.  I found myself being so stressed, that I passed my threshold and could barely keep myself awake.  I laid my head on Jarrett's shoulder, closed my eyes and begged God to make it stop.

For any parent in the NICU, I think watching your babies vital statistics drop, is one of the most challenging and difficult things about being in the NICU.  While I try to remember what the doctors have told me, (Let us focus on the numbers, you focus on Noah), it can be very hard to not focus on every beep of the machine telling you that your baby's vitals are not right.  This is especially hard on Jarrett.  It is the one thing he focuses on every time we come to visit.  I can tell how stressed it makes him and it is clear to the staff we are both stressed.  I think as a Dad, this is especially hard on Jarrett because he sees one of his roles as the protector.  Sadly, in this situation there is nothing he or I can do to protect Noah from what he is going through.  The team of care providers for Noah are very responsive to our needs, constantly asking us what questions we have and explaining everything that is happening.  While they tell us, they know only about 2 percent of the information shared stays with us.  Tonight, Jarrett was visually upset with the constant desat's we watched our precious baby have.  It was the most stressful, exhausting and helpless feeling I've ever had.  Jarrett sat in his chair, watching the monitor, willing it, Noah, to bring it back up.  He'd go from sitting to standing, to pacing to standing still.  Dr. Hamburg came up to Jarrett and said, "Dad I know this is very difficult and if I asked you to stand on your head for the next several hours, to help make Noah better, you would absolutely do it right?"  The hard part about this is there is nothing you can do.  You have to trust us and know we are carefully monitoring your little guy and we will do everything we can for him.

After Andi returned with the results of the x-ray she ordered the Respiratory therapists to pull his breathing tube out a bit.  She said it was shoved pretty far down in his lungs, which I guess can happen from movement in the incubator as well as from when they turn him during care time. The other thing she shared was that his upper right ventricle (or what ever its called) of his lung collapsed.  This is why his vitals were crashing and that they couldn't get him to recover.     As the two respiratory techs worked on him, Jarrett and I held hands and prayed.  After they were finished the team of doctors came back and talked to us.  She suggested we not leave the hospital as Noah was not stable.

We watched for another hour as they continued to work on him.  And despite their best efforts he just didn't seem to come back around like they/we wanted.  Dr. Hamburg looked at him again and suggested Jarrett and I take a walk down the hall to give them some time to work... I think it was a cover for, "Mom and Dad, you need a break... this stress isn't good for  you either."

In taking a walk we decided I was going to run home to get my milk generating materials.  It has been several hours and it was time.  I told Jarrett to text me updates on how he was.  As I walked out of the ER entrance my phone battery died.  It just added another mountain of stress on my shoulders As I raced home, I asked God to please watch over Noah and to give Jarrett and I the strength to handle those situations.  I raced home, grabbed my things and was back to the hospital in less than 25 minutes.

As I got back I found that Dr. Hamburg had worked on Noah, adjusted his tube, suctioned him out and adjusted his oscillator settings.  Walking in the room she shared that they had done a second x-ray to check positioning and found that the part of his lung that had collapse, was actually re-inflating.  It was a huge victory and just what we wanted to hear.

After all that, including an extra shot of morphine to keep him even more sedated, we started to see Noah's vitals slowly inch up....slowly.

Sitting here at his bedside for the past 6 hours, I can honestly say I was scared I was never going to get to hold my son, or see him grow.  It was terrifying and I pray we never have to go through that again.  As good of a day yesterday was, maybe I should have expected a rough day to follow.  Driving back to the hospital, I went from crying uncontrollably, to telling myself to pull it together for him.  I looked up into the starry night sky and said, "God, I'm trusting you with this, please help me through."

Sitting here right now, my baby is sleeping peacefully and his counts have slowly returned to normal ranges.  I am thankful he is still here with us... thank you God for still keeping him here with us.

A week ago right this minute, I was dilated, and ready with my entire might to bring Noah into this world.  It was scary, it was overwhelming and painful and at the same time, it was the most amazing experience of my life.  I never thought I would be able to give life, and somehow my body did just that. Watching Noah come into this world, and hearing him give us a tiny cry, was life changing.  I loved this baby from the instant we learned of him and seeing him come into this world full of life was something I will never forget.

Thinking back to all that we've been through this week, it was scary, it was overwhelming and some days even painful.  And yet, here we sit tonight, celebrating the fact that our son made it through his first week of life.  As scary, as overwhelming and as painful as it was, I would never trade this week for anything.  Jarrett and I, Gabriel, Michael and Isabelle love their baby brother (our third son) more than anything in the world, and we pray for more days together.

Now, at 1:29 a.m. on Saturday, June 20th, we celebrate you Noah.  Happy first week of life.  You've done such a good job fighting to stay with us.  I know its scary, its overwhelming and what you've been through is painful honey, but you keep up that fighting spirit.  Because we want to celebrate so many more firsts with you... your first time cuddling with Mommy and Daddy, your first pound weight gain, your first month, your first day at home, and your first of everything in the years to come.

We love you our sweet baby more than you will ever know.  Please stay with us.

Until next time,
Angie

Day 6: A good day

As nervous as I was to walk out the door of my house today and attempt to balance it all, I sit in bed tonight and give thanks... today was a good day, a good good day.

I woke up early and headed into the hospital where I found Noah having some difficulty regulating his oxygen levels.  He seemed to be irritated and the nurse shared with me that he had been needing regular suctioning.  After Justina, his nurse and the respiratory therapist suctioned him his level rebounded.  I texted Jarrett a few minutes before I had to leave the hospital and asked him to make sure he came as soon as he could, as I was nervous leaving his side. the other main development this morning when I arrived was that Noah's Bilirubin light had been turned off.  This was the light that helped him from becoming jaundice.  The doctors thought that his skin was looking good enough that the light could be turned off.  When I looked at my baby it was the first time his googles had been off for good and I got to see a really good look of his face.  He looked so peaceful after they had suctioned him and he was resting peacefully as far as I could tell.  They also now have a large blanket they cover his "home" with, to provide extra darkness and mimic the womb.  So far, Noah LOVES it!

Before leaving,  I prayed for Noah to have a good day and that God watch over him all the time but especially when I was at work.

I arrived back at work today, and the response was just how I said it was going to be last night... wonderful.  I received warm embrace after embrace with encouraging words of "I'm praying for you all", "I think he's beautiful", "Every thing's going to work out just fine, he'll grow big just like his older brothers."  Their hugs, their support, it helped me get through the day.  Along with the text messages, the notes of encouragement, the emails from others.... I could feel the love and it helped me to put a smile on my face and gain confidence in being able to handle it all... just maybe I can do this.

After work today I raced to the hospital to be able to participate in afternoon care.  I was able to change Noah, and help provide reassurance in my hands.  While they decided to hold off on food for another day, we were excited to hear he pooped again.  It was another sign, the milk is moving through and just maybe he'll be ready for some more milk tomorrow.

Noah seemed very satisfied again when I arrived.  I checked in with his nurse to ask how he was and she said he had been having a good day.  He was able to maintain his heart rate, CO2 levels as well as his oxygen levels.  She said in other news they put in a pick line today as they are wanting to remove the lines from his umbilical cord.  They put the line in is right arm and it looks HUGE compared to his tiny arm.  The nurse said this line can stay in for up to a month, possibly longer.  I was just glad to hear they wouldn't have to poke him for at least a little while.

After helping with Noah's care, the nurse called one of Noah's neonatalogists  to come talk with me. Dr. Hamburg came in and went onto explain to me several things about Noah's progress, where things stand and what they are looking at going forward.  I was very impressed Dr. Hamburg.  She explained to me that this weekend or early next week, they will do an ultrasound of his head to check for any brain bleeds.  It can be very common among preemies and especially those born so early.  Dr. Hamburg said she is encouraged by what she sees and doesn't believe Noah's demonstrating any of the symptoms to indicate a bleed, but will know for sure once the ultrasound is done.  She said the first 72 hours are when he was at the greatest risk for bleeds, but that they can still happen.  We pray for a good scan when ever it happens.

She also told me that Noah's skin is looking good so they are starting to wean him off the humidity.  Down from 75%, when we left today, the humidity levels were less than 50%.

Another area they were very happy about what his blood pressure.  Noah has been able to maintain a good blood pressure level from very early on, (within the first few days).  Dr. Hamburg said she was really happy about this as most babies at his age, have to be on medicine to help them with that.  She said they have never had to give him medicine for his blood pressure.

She also shared with me additional information about their goals for Noah.  She said, after the first 14 days, the main things they worry about are a) him getting an infection, and b)feeding issues.  She said these are often the two biggest complications they have in their preemies, but that they are very proactive if they suspect infection they will give antibiotics.  One of the most common places they get infection are in the lungs.  I pray feverishly that Noah does not get infection.  

Secondly the issue they tend to see if feeding issues.  She said, Noah's main goal in the NICU is to grow and we have a delicate balance of  feeding him enough without feeding him too much.  She said there will be times they have to start and stop feeding and while it seems scary to us to not feed him, she said it is better to underfeed than feed too much.  I trust her completely.

The other thing regarding food and getting bigger is weight.  She said, all babies lose weight after they are born. She continued, "Often our littlest babies loose the most."  I told her we were worried about Noah's big weight loss and she said, our goal is to have him back to his birth weight, or close to that by day 14."  She explained, "I don't think we are going to get exactly there, but I think we will get close.   Speaking of weight, tonight they weighed Noah and he gained again.  He now officially weighs 1 pound 5 ounces, up an ounce.  This time I did a victory dance.

In this picture they are weighing Noah.  They have a scale in his bed, and what they do is take a reading, hold him up, calibrate the scale and then place him back down on the bed to get his weight.  Also from this picture, one can get a good indication of just how small he is.  He could probably fit in the palm of  Dad's hand.  

Dr. Hamburg also said that she would invite us to be in the NICU on Thursday mornings from 9-11 as that is when the entire team of doctors in charge of Noah's care do rounds together.  Dr. Hamburg said it is a perfect time for us to hear updates on Noah, the direction of his care and to hear their weekly (not just daily like we've been getting) goals for what they want to see Noah doing in the next 7 days.  I thanked her for sharing the information and told her we'd make sure we have someone there every week.

Another step we will face in the coming days is Noah getting a blood transfusion.  She said that with all the lab orders they have and the many times they prick him to draw blood, he will probably need to get transfused.  She said it is very common and the fact that he didn't need a transfusion so far was very encouraging.  "Many babies have to get one in the first week, its great that he didn't."

Overall she said for him being almost a week old, they are encouraged by what they see in Noah.  They say he's feisty and in their words, "that's the best kind of preemie"  We pray that determination never leaves him.

After talking to Dr. Hamburg I felt the most reassured, informed of the future and optimistic I've felt in the past 12 days.  While I'm optimistic, I can't help but hear the voice of every other professional saying, "Don't let your good days get you too high and don't let the bad days let you get too low."  With that mantra playing over and over in my mind, I tell myself to be cautiously optimistic.  Tonight I feel thankful for the fact it was a great day.

Not only was I welcomed back to work in warm open arms, but Noah had a good day.  I believe all the prayers people have been sending are really working, so if I may be so direct, please please please keep them coming.

It's been a day to give thanks for and to hold onto when the difficult days are staring us down.

Noah, you did such a great job today.  Mommy is so happy to see you've gained some weight and are doing so well on the oscillator.  Keep up the good work little buddy, today your doctor gave mommy some indication on when I'll get to wrap my arms around you and hold you close to my chest.  If you keep things up, on gaining weight and keeping those oxygen levels up, it might be only a couple of weeks away before I can place you onto my chest and snuggle oh so softly with you.   Mommy is so excited for that moment, I hope to dream about it nightly until it becomes our reality.  I love you precious Noah.  Good night and see you in the morning.

Until next time,
Angie

Day 5: Mixed news...and back to work I go

Today was a very hectic day, as I prepare to return to work tomorrow, I felt like I needed to jam everything I could into the 24 hours I had left.

I'm trying to face this new reality of balancing a new world in the hospital, along with the busy life we already had at home, and now tomorrow, a third component returning to work.  I am very fortunate to work part time at a great place, where I am supported.  That alone is a huge blessing I am thankful for.  I know tomorrow when I walk though those doors, and step foot back in my office, I will have friends welcoming me back and supporting me along the way.

Will it be easy?  I already know it will be another test for me.  The reason why I am returning to work less than a week after giving birth to Noah is based on the recommendation of the team of doctors, nurses and social workers at the hospital.  They have told me that since I'm physically feeling so great, that I should consider going back to work to save my time for later, then Noah hopefully moves to the secondary NICU and we move back into the hospital to care for him.  I pray and dream about those days.  Hope that those days will be in our future, are what will give me strength tomorrow to add yet another responsibility to a schedule that seems overfilled already.

Today I went to my OB's office to get a clearance to go back to work, and it was another one of those realities that my life is so different than I thought it would be a short 10 days ago.  I sat in the waiting room less than 2 weeks ago, meeting with Dr. Holler to discuss my lack of amniotic fluid.  Little did I know less than 3 days later, I'd be meeting her again, in the labor and delivery room.  Sitting in the waiting room today, I sat across from a couple who were expecting.  It reminded me of Jarrett and I excited for our first ultrasound, and for subsequent appointments to learn about the baby and how he was growing.  Sadly there would be no more OB appointments for us.  I mourn again for something I will not have.

The doctor I met with today was exceptional.  The minute he came into the exam room, the first thing he did was introduce himself and reached out an arm not to shake my hand but to wrap his arm around my shoulders and ask, "How are you doing?"  It must be apparent on my face.  I feel almost like a walking shell, trying to stay focused on the next to do task, keeping my mind occupied to avoid the flood of emotions.

Dr. L sat down and said, "Tell me everything from the beginning."  For the next 20 minutes I shared with him my history of infertility, of all the failed treatments, how life with the gift of adoption three time over, and then our miracle pregnancy... our precious baby Noah.   I walked him through the pregnancy, all the complications and then the detail by detail account of what happened beginning the weekend of June 6th.  He reviewed all of my medical documentation, highlights of things they had found on the ultrasound, all my lab work, everything.

Then he stood up right in front of me, looked me in the eyes and said, "I need you to know you didn't do anything to cause your son's early arrival.  I need you to know that for the rest of your life."  As if he could read the thoughts that have been passing through my mind for the past 9 days.  It was what I needed to hear.

After my exam, I was given the approval to return to work.  He joked saying I get the record for the earliest authorization they've ever given someone to return to work.  While I'm okay with returning to work, there are other records I'd rather hold... like giving birth to a healthy baby boy at 40 weeks gestational age.

Now about Noah:  This morning at our visit, we learned that Noah's doctors decided to stop breast milk today as they noticed his tummy was a bit distended and had some grey ashy color on his belly.  They did an x-ray to see if there was anything and determined it best to just give him a break on the food.  Of course it made Jarrett and I nervous, he's already so little, if you don't feed him won't he lose more?  The doctor was very reassuring, saying it is common and that sometimes their guts are so immature, that they just need a break every once and a while.  One of the good updates she shared was that Noah has been doing so well holding his blood pressure within the range that they felt comfortable removing his blood pressure line.  So that was removed from his umbilical cord area.

This afternoon I returned  to visit Noah and along with me came my aunt Anita.  Additionally her former priest, Father Gary came to the hospital to pray together over Noah.  While Jarrett and I are not Catholic, we attended the Parish where Father Gary was for the first 5 plus years of our living in Arizona.  We found great comfort, support and help in Father Gary.  When Jarrett was going through cancer treatments Father Gary presided over a Mass of the Anointing and when I reached out to Father to see if Jarrett could become a part of the mass, he welcomed us with open arms, and no questions about if we were of the faith or not.    We felt something powerful at that Mass and truly believe Jarrett's health today is in great part to the faith and the medicine.

My aunt Anita reached out to Father Gary when I was in the hospital and asked him to pray for us.  His email response was extremely touching saying that he would gladly pray, offer support and "storm the heaven's" in honor of our little boy.  Father also offered to come to the hospital to pray with us for Noah.  When he heard of his offer, I wasn't about to turn it down.

The pastor at our current church has been wonderful as well and came not only to visit me in the hospital a few times, but has been up to pray over Noah as well.  I find these visits so powerful and strengthening, especially when the dark moments seem to slide in.

Today as Father Gary, Anita and I prayed, I felt God's hands over top telling me to trust his plan.  As we prayed I couldn't help but notice Noah's monitor beeping at us.  After Father and Anita left, Noah's nurse came up to me and said, "I'm not sure if you noticed but when you started praying Noah's vitals improved.  In fact his O2 level got so high, his alarm started going off.  Usually when we see those counts go up, its a sign that baby is relaxed.  I think he liked what you were praying.  - Yes another reason to give thanks today.

Tonight when Jarrett and I returned to the hospital, we found Noah to be resting comfortably.  He was all tucked in  and seemed to be very cozy.  Dad and I stood at the side of his bed, held hands and together prayed for our son.  As we prayed I again heard Noah's alarm's beeping.  After a few seconds of the alarm his nurse came back over and said, "Noah- are you showing off for Mommy and Daddy?  and then "he seems to really know you are here and likes what you are doing."  It is moments like these that make me feel so happy.

For the past 5 nights, I've made it a point to go into the hospital or up to Noah's room for his 2 am for Noah's care hours.  Tonight I told his nurse that while I wanted to come back, I would instead call just to make sure.  I would really love to go in and help tonight, but I've realized I need to get rest.  Jarrett reminds me we have to take care of ourselves too, because we are no good for him if we are sick.  And so I decided tonight, I'll just stay and call.

Speaking of that, I think its time I call it a night.  I'm falling asleep while I'm typing.

Day 5 was a day filled with some good news and some other news.  We pray tomorrow Noah's belly is feeling better and that the discoloration is gone.  We pray that he continues to gain some ounces and that he doesn't develop any complications.

Jarrett and I, along with our families are completely smitten with our precious little peanut.  We pray tonight and ask God to watch over him, protect him, keep his safe, healthy and moving in the right direction.

Thank you for all the blessings you've given to us in our lives God.  And as Isabelle likes to say, "God Bless Noah"

Until next time,
Good night,
Angie