Thursday, February 26, 2015

Thursday, February 26, 2015

We received word on Tuesday morning that the questionable mass on her kidney had significantly shrunk confirming that it was a hemmorhage.  We knew the ultrasound was performed that early morning and results were read right away.  I woke up every hour that night looking at the clock.  I left her that night covered in prayer, holy water, and sleeping with all her saint friends tucked into her bed. I have been so afraid to even accept this as a possiblity in her life.  When I walked away from her that night, I realized I had done everything I could humanly do.  I went to my room that night I just laid in bed and stared at the wall.  John came early that morning so we could be together when the results were delivered.  He called the hospital on his way up and they couldn't tell him anything yet.  He called back about 45 minutes later and just explained how we were truly on pins and needles and if they could tell us anything.  The nurse kindly read a bit of the report and told John that it appears the mass was indeed smaller, but the doctors wanted to talk with us to give an official report.  I was a bit shell-shocked as I was anxiously anticipating a "meeting" when they tell us everything so for John to be able to call up and get the preliminary results was such a gift as I was so anxious.  The neonatologist came in around noon and we were chatting a bit.  I was trying to read his every expression and body language to tell if he was getting ready to tell me bad news.  I finally asked him about the report and he nicely says, "Oh Yeah.  Everything looks great.  You don't need to worry about that anymore."  I wilted in my chair and just shook in relief. 

Lourdes continues to do well.  She is gaining weight everyday.  She is keeping her feedings down.  We look at each other every day and each day I notice she stares longer and longer into my eyes.  It is amazing how quickly you get to know each child.  I know that she likes being held upright right under my chin.  She tucks her arms in and will just look around contently.  She sleeps quite awhile in the morning as she has been throwing a party for the night nurses I hear.  I think she is still trying to figure out her days and nights a bit.  She is nursing so well which I am so thankful because she went several days without nursing in the very beginning. 

We are scheduled to go home in 8 more days (Friday, March 6th in the afternoon).  You learn to say that lightly around here because you just never know what will come up between now and the minute you are to go home.  It doesn't make me anxious as we are so thankful that her bacterial infection was discovered here and not at home.  So, whatever God has planned for our stay, I want to trust it is always for the best.

Some of my wonderful friends came up to Omaha on Monday.  We went to the Cheesecake Factory and then later prayed the rosary and novena prayers around Lourdes that evening.  Friendship is one of life's greatest, most wonderful blessings.  I would have to write a trilogy to thank each of our friends for all that they have done over the past weeks and months.  How do you thank them adequately?  Suggestions will be taken for the rest of my life...Thank you.

Our other children have been overly loved on and provided for to such beautiful measures.  Zellie was sick for a couple days and I realized that between John's mom, aunt and cousin (who are all nurses) she was completely well-cared for.  That was a gift.  John's parents, aunts, and cousins have traveled to be with our children.  They have sent wonderful pictures and messages to me that always make my heart happy.  They have sacrificed their own family time to help our family.  John's sisters have offered to come with their own children to be at our home so he can work and be here with me.   

My new friend, Mertyl Mae Quinn, brings me communion each day at 1:00. We sit and visit about life for about an hour.  She offered several of her days for Lourdes to heal. 

Funny that so much has happened since we first came here two weeks ago.  It feels like since other more serious issues arose since her arrival that I have forgotten why we came here in the first place.  Oh yes, that is right, she had surgery to put her insides that were on the outside back on the inside.  We pray that all continues to heal and hopefully we will all be together soon.

Monday, February 23, 2015

Monday, February 23, 2015

Lourdes is responding well to the antibiotics.  She tested positive for e.coli bacteria.  It is uncertain whether she picked this up at delivery.  Regardless, we are so very grateful it was discovered before we went home and for the complete diligence of the NICU nurses and doctors.  They are all just phenomenal.  I could write forever how wonderfully kind and caring her entire team is.  God bless these wonderful physicians and nurses. 

The blood culture came back negative on Saturday which means they start counting the days on antibiotics from that point.  We will be here fourteen more days from this past Saturday if nothing else comes up.  The surgeon wished us a very boring next fourteen days and we couldn't have agreed more.

The doctor came in today to confirm the follow-up abdominal ultrasound tomorrow morning.  The last one was performed at 4:00 AM so I assume this is the routine time.  We are asking the intercession of all the saints and angels to make this scan completely clear of anything.  Please remove any previous discoveries and make her kidney clear.  In particular, we are praying to St. Gianna Molla, Bl. Matt Talbot, Fr. Emil Kapaun, St. Joseph, Titus Brandsma, St.Teresa Benedicta of the Cross, Megan Boever, Nick Niewald, St. John Paul the Great,  St. Faustina, and our patron saints to remove the mass from her kidneys.  We have called the Pink Sisters, Carmelites of Jesus Mary and Joseph, Carmlites in New York, and the monks of Clear Creek Monastery. 

Thank you for offering any prayers, sacrifices, and for notifying anybody to pray for clear scans.  If you are aware of any religious orders, thank you for asking them to pray or to offer the Holy Sacrifice of the Mass.

As with any upcoming health concern, you waiver from moments of complete faith and trust to shaking at the possiblities of the unknown.  You know God has a plan.  Your head knows this, but often your heart speaks a different language especially when looking into the face of your beautiful child.   I was in a tizzy the other night and my mother simply emailed me these beautiful words,

"Peace Lindsay.  God's Peace.   God is holding her in the palm of His hand." 

Yes, this I know.  If you feel so called, we will be praying nine rosaries between now and her scan.  Also, we will be praying Mother Teresa's Favorite Memorare Novena tonight and tomorrow morning.

Mother Teresa's Novena

An Express Novena is 9 Memorares in a row.

In 1983, one of our Superior sisters had gotten sick in Eastern Berlin, and Mother Teresa had to appoint a replacement that could handle the Communist government. The sister that they appointed as the successor forEastern Berlin needed a Visa. Mother Teresa gathered her nuns and started praying the Express Novena (9 Memorare’s).
On the 8th Memorare, the phone rang, it was a Communist official stating that it would be 6 months until they would receive the Visa.
After the 9th prayer, Mother Teresa started the novena again.
On the 8th Memorare the second time, the telephone rang this time, it was a Communist official who stated you will have your Visa immediately!"
Mother Teresa had great courage and once stated that "I never refused God anything".

What you do,
is make the sign of the cross,
then state your intentions
then (sincerely) pray the Memorare prayer

Remember, O most gracious Virgin Mary, that never was it known that anyone who fled to your protection, implored your help, or sought your intercession was left unaided.
Inspired by this confidence, I fly unto you, O Virgin of virgins, my mother; to you do I come, before you I stand, sinful and sorrowful. O Mother of the Word Incarnate, despise not my petitions, but in your mercy hear and answer me.

 REPEAT NINE TIMES while stating your intentions.

May God reward your generosity to our family.  We will forever be indebted to you for praying and sacrificing for our daughter.  Please know that I pray for each of you in thanksgiving and also for any intentions that are on your heart. 

Sunday, February 22, 2015

Saturday, February 21, 2015

Thursday didn't stop.  Beginning with the 5:00 AM emergency phone call from the NICU until the very end of the day, we were uncertain how Lourdes was doing.  What baffled my mind all day was that I had just left her six hours previous ready to go home.  As the day wore on, we thanked God this didn't happen at home.  I am not sure I would have recognized the how serious her issues were.

Each x-ray showed very small progress of the contrast working through her stomach.  The doctors were watching two spots in particular in her intestines.  After the major concern was ruled out in the morning, they began to focus on the two small kinks possibly ruling them scar tissue in which case they probably would surgically remove them that day to open her intestinal tract. 

About 9:00 PM, blood test confirmed Lourdes had developed a bacterial infection in her blood stream.  They were unsure of the specific type at the time, but had already begun antibiotics that morning as preventative measures.  The hunch was an intestinal bacteria which would hopefully explain her pain and green bile vomiting that early morning.  The next major concern was if the infection had spread to her spinal fluid which could cause a whole host of additional problems like meningitus and brain damage. 

I mentioned to the nurse "So this is good news?"  She said, "It is good we know what we are dealing with." 

John and I stayed with Lourdes until around 1:00 AM until I felt she was settled.  I always have to leave her having just said a rosary for the night.  We blessed her with Lourdes water.

The next morning was met with another phone call from the NICU asking our permission to perform a lumbar puncture to rule out the spinal fluid concerns.  We had to do this with Clairvaux so I knew exactly what this involved.  I hate the spinal tap more than anything.  She was so wound up that the doctors gave her moraphine to calm her down during the procedure.  Early results came back that the infection was not in her spinal fluid.  Praise God!!!  Although, the culture can still grow after many hours so we continue to hope for good news on this issue.  Also, Dr. Cusick felt confident that the kinks in her intestines aren't anything of concern at this point. 

I went home to Lincoln this morning at 1:30 AM to be with Lillie for her confirmation.  It was so good to walk in the door after being gone over a week.  I went into each bedroom and picked up the kids while they slept.  The kids were so excited to see me in my bed this morning.  Normalcy is so good.  Lillie was so precious and cried in the evening to John because she will never make her confirmation again and she only has two sacraments left.  We were dying of laughter.  I called several times to the NICU to check on Lourdes and they told me each time she was having a restful day which helped being away from her.

I arrived back in Omaha tonight.  The blood work confirmed that the bacteria was e.coli.  Where does a baby pick up e.coli?  We will be here anywhere from 14-21 more days.  Her blood is drawn each morning and until the test returns negative they don't start counting the days of antibiotics.  We are praying for that negative result soon.  She seems much calmer today.  I was able to try to nurse her again this evening.  She has been taking a bottle well so we are grateful for that. 

Thank you for your constant friendship and prayers. 

Thursday, February 19, 2015

Thursday, February 19, 2015

I left the NICU last night around 10:30.  We went over all dismissal instructions, videos, and literature.  We were planning on doing a carseat check when John arrived in the morning around 10:00 to take us home.

Around 5:00 A.M., I received a call from the NICU that I needed to get to the hospital now.  I don't have a car here with me so I called the front desk at the Rainbow House to see if they could take me.  I ran upstairs to be met at the door to the NICU by the charge nurse telling me, "Something is wrong.  Something is really wrong.  We have a different baby on our hands."  I walked into her room and she is grunting and retracting.  Five nurses were working on her and she had vomited green bile.  The charge nurse is listing off a series of possible causes and states that the surgery team think she is going septic.  Labs, cultures, and urine sample were ordered immediately.  Her pic line had just been taken out yesterday so they had to put a new one in which always breaks my heart.  They started antibiotics immediately. I picked her up and she was immedately quiet which was comforting for a moment to me.  The neonatology team came in to assess and they didn't like what they were seeing.  In an instant, thirty doctors filled her room and all were looking at her. The surgeon ordered an upper G.I. "stat".  They were concerned with a malrotation of her bowels and another much more serious condition that would have sent her right into surgery.  I believe I remember something about part of her intestine dying. 

The X-ray came back looking good that nothing was going on in the upper G.I., but the contrast has taken a very long time to go through her body indicating a kink in her intestines.  They have been doing an X-ray of her stomach every 1-1.5 hours to watch the progress.  I haven't been able to feed her since 5:00 AM and she won't be allowed to eat until tomorrow morning if her night goes well and no more vomiting.  Please pray that she may have a calm night.

After the 2:00 X-ray that showed a possible blockage and contrast still sitting in her intestines, John and I prayed the rosary.  After the rosary, we prayed Mother Teresa's favorite 9 Memorare novena.  I don't think I've ever said a prayer more fervently.  I prayed each word from the depths of my heart and asked Our Lady to please move her bowels.  As we finished the nineth prayer and said "AMEN" I am not kidding when I say she filled her pants at that exact moment.  I asked Fr. Edmond Campion and all the English martyrs to fix her bowels.  I asked Fr. Kapaun, Mother Teresa, and Matt Talbot.  I actually think I commanded them more. 

So, we don't get to go home today or probably anytime real soon.  I know it is a blessing that this didn't happen at home.  It is just really disappointing.  My heart has stopped one hundred times these past few days.  I am grasping for faith and hope.  I told John right now that I need to be offered hope.  Reality hurts a little too much right now.  I need someone to tell me that it is going to be alright.  I know from that small miracle of her bowels moving God is present.  I know much more deeper the words, "I cry to you, Oh Lord!" 

The surgeon still is concerned about two possible kinks and will watch the next few days with surgery being a possibility. I am begging God please no surgery. Please. Please remove the mass from her kidney also so that when we come next week they see NOTHING.  Please heal her bowel.  Please make our baby well. 

Wednesday, February 18, 2015

Lourdes Marie Talbot Boever

It has been a week now since we welcomed our new daughter.
Lourdes Marie Talbot Boever was born February 11, 2015 at 2:50 AM.  She weighed 8lbs. 11 oz.  At delivery, the membrane surrounding her omphalocele ruptured leaving her small intestine and a portion of her large intestine on the outside of her body and exposed.  It was decided immediately that she would be transferred to the Children's Hospital in Omaha for surgery.  She was taken by ambulance and right into surgery.  John followed the ambulance to Omaha.  She did very well in surgery and her stomach repair couldn't have gone better.

Along with the ups and downs of being in the NICU for a week now,  we are so grateful for the love that has been bestowed upon our family. 

Right now though, I am writing to ask for more prayer.  Yesterday, a routine cranial and abdominal ultrasound was performed.  Often, babies born with omphaloceles have an accompanying syndrome called Beckwith-Wiedemann Syndrome.  Lourdes didn't have any of the physical markers that would indicate her having this syndrome.  Although, even if the physical markers are missing, a child can still have the syndrome and only a blood test would confirm.   If a baby has BWS, they have an increased risk of developing cancer at a young age. 

Even though Lourdes doesn't outwardly reflect any of the markers, geneticist like to be thorough and not miss anything that is why the ultrasounds were ordered checking for larger abdominal organs.  Her organs all checked out fine.

Her cranial ultrsound indicated a few small hemorrhages, but nothing that caused concern as they could tell they were old marks and were healing.  This is not uncommon.

Although, a small mass was discovered on one of her adrenal glands right above one kidney.  The doctor couldn't quite rule out a tumor, but it could also just be another hemorrhage due to her long and hard delivery.  The adrenal glands regulate stress and due to her little body having such a difficult delivery and surgery this would explain the hemorrhage.  BUT, the neonatologist isn't sure and ordered a second ultrasound to be performed next week to determine if the mass is shrinking. If not, this would indicate a tumor.  We would then do more tests, imaging, blood work, and cultures.  I asked the doctor what if it is cancer.  She said we would discuss treatment plans and possible chemotherapy. 

Yesterday was the darkest day of my entire life.  I am asking you to please pray for our daughter.  Please pray that when we go in next week that nothing is found and she is clear.  Please ask the intercession of Our Lady of Lourdes, Bl. Matt Talbot, and Fr. Emil Kapaun to heal this mass. 

We are still in the hospital, but are hoping to be discharged tomorrow morning if she has another great night. 

Thank you with all my heart.

Saturday, January 17, 2015

Our Newest Girl

I know that I have not updated anything about our new baby here on our blog since originally posting about her back in October.  Much has happened in our lives since first learning of her physical condition.  Most importantly, my wonderful, wonderful saintly mother was diagnosed with cancer last week.  I am not sure even how to formulate the words so I will just begin writing.  

First, I love talking about our new baby and I LOVE talking about my mother.  I promise I will cry both times.  I am really good at crying.  Really good, but it doesn't mean that you made me feel uncomfortable.  I wear my emotions plastered across my face and chest.  It hurts.  I love both of them  It is not awkward especially if I know you in person.  I love giving updates on her and will share willingly my joys and worries about her approaching birth.  Doctor's appointments, ultrasounds, surgery consults, and the like have become so normal I believe I have forgotten what a "normal" delivery was like.  Our children are so used to talking about all of this that it has become so normal to them.

We love her already so much.  I do get sad that this tiny, innocent baby will suffer from pain her first early days.  We know God will bless her and us with wonderful doctors and nurses that will help us tend to her needs.

I regret not having noted just a bit after every ultrasound so I could look back at her progress, concerns, and plans.  To back up, I will try to recall all that I remember from the beginning.

My mother is such a part of our lives and the timing of her being diagnosed with cancer and our baby's birth is something only God could have orchestrated.  I have written so many times about how wonderful and holy she is.  She has been my best friend since I was born.  She is my heart.  God blessed me from an early age to be able to see the sufferings she endured not only physically, but as a mother.  She loves deeply and is so willingly to take one for the team if that means someone will come to know Christ.  To know what she is about to endure has brought me to my knees more than once.  I wish I could share her saintly emails and all that she is offering this for.  It makes me sad and proud all at the same time as she is slapping satan in the face because she says "YES" at every appointment.  Her courage is the kind you read about in books.  One of my mother's good friends mentioned to her that maybe God is allowing her to suffer so a miracle will happen for our baby.  She really is a saint.  I can only imagine the deals she has made with God for her children and their souls.

Each ultrasound we had brought a variety of emotions.  Each of the technicians were so wonderful and we usually got into the deepest conversations about faith, family, and children.  One morning in particular, the computer system was down so the technician and I talked for about thirty minutes.  She was away from her Catholic faith.  She asked me how many children we planned on having.  I told her that we let God determine our family size.   We have no set number. We want what He wants and want who He wants.  I told her that it was easier for me to accept her diagnosis because I hadn't planned anything.  For me, when I plan events and it doesn't go as I had originally planned it is so much harder for me to accept.  When I just let God plan life, it is much easier for me to see that this is what HE MUST want.  She said that she wishes more families had that mentality because trying to control the situation leads to so much disappointment and anger.  I thought that was interesting.

Some technicians said that our case was very minor and small.  Others would say that her omphalocele isn't the biggest they have seen, but not the smallest.  I left some appointments really hopeful and some appointments with my mind very occupied and worried. She has measured big at each appointment.  At a couple appointments, the doctor was concerned about my size, gestational diabetes, a larger amount of amniotic fluid, and her head size.  Her head has been measuring about 3 weeks ahead each visit.  Although, this isn't uncommon in our family as we have BIG heads.

 John and I met with her surgeon in late November.  He was from the Children's Hospital in Omaha.  Dr. Cusick couldn't have been more kind, gentle, and hopeful.  He has four of his own children.  I told my own mother how fatherly and kind he was.  He was very hopeful for her case and for surgery to go very well.  He agreed that her omphalocele is on the small end and doesn't forsee any/many complications.

Originally, we were told that she would be taken immediately after birth and transferred to Omaha for surgery.  John and I would arrive after my dismissal.  Dr. Cusick has found that babies handle surgery better if you are able to give them a few days to get their physiology going, heart rate stabilized, and respiratory balanced.  Currently, she will be born in Lincoln and in the NICU for two days.  After those two days, we will be transferred to Omaha for her surgery.  Originally, we thought we would be looking at weeks in the hospital with her.  Dr. Cusick was very hopeful we would be home within a few days.  John and I sat there in shock.  We were planning weeks, but to be told DAYS...we just couldn't believe it.  I was more anxious about leaving our other children at home for weeks than her actual surgery.  I know much will be determined after her birth, but for now that was a great shot of hope.

Her omphalocele is measuring 4 cm x 2 cm x 4cm.  Right now, it only contains a small part of her small intestines.  At one appointment, they were concerned about her liver being involved, but I haven't heard that since.  I am going to be induced February 11th...the feast of Our Lady of Lourdes.  I will be 39 weeks.  The doctors want to have a more controlled environment for her birth.  It is so funny to know the day your baby is going to be born!  Right now, she is not completely head down, but not completely transverse.

I also wanted to write about the additional physical conditions a child diagnosed with an omphalocele may have.  At our first appointment, Dr. Kenney said that often babies with this also have Downs Syndrome or Trisomy 18.  There are numerous other conditions, but these are the top two.  Of course, this made no difference to John and I.  He told us if she had Trisomy 18 that she would probably not live after birth.  He mentioned we could do an amniocentesis or a specific blood test that is 98% accurate on determining other genetic factors.  He recommended the blood test as knowing if she had any additional conditions would better help the doctors treat her during and after delivery.  Everything came back completely negative from the blood panel as to her having anything additional.  By the time the blood work had come back which was about a week, God really filled my heart with such peace. I had decided that before I answered the phone that I would praise God for the gift of this child and thank him for whatever the doctor told us.  I can honestly say that I wasn't anxious.  He said, "Everything looks normal."  I don't remember feeling relief just peace.   I wanted what God wanted and believe so firmly to my very inner core that EVERY LIFE IS SO VALUABLE and every suffering has meaning.

My mother won't be able to be with us this time.  She begins chemotherapy on Tuesday and will continue with treatments every 21 days leaving her next treatment the day before I deliver.  God's timing....They told us that the second treatment is brutal.  I have shed more tears over those stupid words.  I know she is going to be going through utter darkness and OFFERING IT ALL FOR ME!!!!  That hurts.  I wanted to take her pain, not the other way around.  Right after her diagnosis, it was such a wonderful push for the last lap as we prepare for our daughter's birth and upcoming trials that may be presented.  I was focused on offering it all for my mom.  The tables have been flipped and now that wonderful woman who gave me life will once again be suffering so that I may have courage.  I am so grateful and it hurts very much.  

For now, this is a start.  I want to write about the following next:

1.  The life changing advice from my spiritual director
2.  Blessed Matt Talbot
3.  My saintly mother and her sufferings
4.  Our WONDERFUL family and friends...Simon of Cyrenes

Friday, January 16, 2015

St. Nicholas Day 2014

With each grandchild that is born, my mother picks out and sends a new stocking from Land's End. I love looking at each one she picks out and treasure that gift she gives to our family with each new baby.

The girls wanted to set out flats.  They loved that they each had a pair.
Damaris' "sparkle" shoes.

Rose made tags for each person and made NO NUTS sign for those who are allergic.

The older five received a ticket to see the Nutcracker at the Lied Center and it was taped on the back of a chocolate dollar. 

Rose and John run the Lincoln Mile

Rose ran the Lincoln Mile with John.  She ran a 8+ mile.  Pretty good for her first time participating!

John runs the Lincoln Mile.  I know he will reach his goal of a 4 minute mile!!!

Christmas 2011

Yep. I forgot to post our 2011 Christmas. Seriously, these pictures hurt to see baby Vianney. I was pregnant with Damaris.

They helped me with our Christmas cards.  This is the last year I sent out cards.  Every year I mean to get back on it...THIS YEAR for sure. darling.

Christmas 2013

This was from last year's Christmas. I forgot to post.

Skype is so wonderful so we can chat with those who aren't able to make it. 

Mammy deserves a post of her own.  I told her that she does everything I only dream about doing.  She is beyond generous and surprised Kristin (pictured below) with a beautiful Michael Kors watch.  Guess whose name she had this year?  I will devote a whole other post to that. 

I love decorating the table more than anything else.  I failed this year and used paper plates...gasp!  My mother told me to, but still!  Our table was so pretty last year.

Kapaun's first Christmas.  Milk drunk.

Christmas 2014

It never fails that I get behind on posting the BIG life events like birthday, holidays, and births. Christmas this year was just perfect. Eight out of the ten of us were able to come to Lincoln. We did something new this year that was so wonderful. Each couple or groups of unmarried folks were assigned either brunch or dinner for the five days most of everybody was home. It was so fun to see what everyone prepared. I didn't take a lot of pictures because I wanted to spend the time with my family. 

The traditional game of RISK continues each year with the brother-in-laws.  I think they went to bed.  I am not sure.

Rose, Lillie, and Zellie received the coveted American Girl dolls this Christmas.  Rose received Julie,  Lillie received Isabelle, and Zellie received Samantha.

The newly engaged couple!!!!

Damaris and one of her other mothers.

I forget the name of this game, but my mother is holding the phone on her head and those in front of her are acting the word out.  My mom had to guess the word.

A failed sister/mother picture attempt.  It was so cold outside.

My dearest.  She stayed with us over Christmas and enabled me to get so much done in preparation for the baby.  Her best trait is she is such a cheerful giver.

Husker Bowl night, poker, and wings for the fellas.  I think they went to bed.