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.