Little One

2007-08-19T09:48:00.000-07:00

Please visit our website at www.godsmiracleofsebastian.com

You can read the book God's Miracle of Sebastian at no charge and hopefully be encouraged by our story.

Sebastian came to our home for the first time last week and I took him to our church one week ago today. He celebrated his first birthday in July.

How can I express how deeply humbled I am, how filled with joy and gratitude for you who have prayed for Little One or to our Saviour for His unending love and mercy.

2007-07-05T16:16:00.000-07:00

"God's Miracle of Sebastian" is a self published book the Lord has led me to write which chronicles His mighty miracle. Dearest Little One will soon celebrate his first birthday and we are humbled and thankful beyond words for His loving mercy to us.

Sebastian now sits up, drinks 8 ounces from a bottle, laughs, and even eats!He still wears his foot braces and oxygen at night. He no longer needs an NG tube.

We must tell of His great work!If you are interested in knowing more about the book or in receiving an electronic copy of it, please email me at

godsmiracleofsebastian@yahoo.com...

Of course, there is no cost. If you are interested in a hard cover copy, please let me know.

Please do continue to pray for our Little One as well as the many others who are in need of your prayers.

Please also pray for those parents whose Little Ones have gone on early to be with the Lord.

Your prayers mean more than we can ever tell you.

The cried to you and were saved; in You they trusted and were not disappointed.

2007-04-02T19:22:00.000-07:00

It is truly impossible for me to go to bed tonight without sharing this wonderful news.

The docs gave Rob and Taylor the ok to take Sebastian to church, so yesterday on Palm Sunday, precious Little One went to church for the first time. At a little over 8 months of age, he went to church with his Mommy and Daddy and brother!

Our omnipotent and loving Lord is truly mighty to save!

They cried to You and were saved. In You they trusted and were not disappointed.

I will praise Your name, O Lord!

2007-02-15T15:34:00.000-08:00

February 15, 2007

I have been unable to access the blog to keep you updated about Little One because I lost my password, but we cherish your continuing prayers.

God continues to bless dear little Sebastian. He still has a feeding tube and still is on oxygen and still has little boots on his feet. He continues to grow and continues to smile!
He has had two hospital stays and we pray for no more illness.

I have been away from him for two weeks but return soon and cannot wait to see him again!

God’s miracle of Sebastian affects me no less today. Soon it will be a year since the doctors gave a zero percent chance (as a recent email I reread from Rob stated).

Our most wonderful heavenly Father is in the business of miracles and in the business of building our faith.

Yesterday I read that early email from Rob in which he said the experts said there was basically a zero per cent chance for Little One. I also read our pastor’s response to a letter I had written asking his counsel on the counsel I was giving. He said, “and as you pointed out there is always the possibility of a miracle.”

I wept from deep within myself as I read those two phrases yesterday….zero per cent chance….the possibility of a miracle.

I turned on my CD and knelt as the choir sang:

O God our help in ages past,
Our hope for years to come,
Our shelter from the stormy blast
And our eternal home.

Under the shadow of Thy throne,
Thy saints have dwelt secure;
Sufficient is Thine arm alone,
And our defence is sure

My puppy dog Russell came to me as I sang with the choir. And he licked away my tears as they fell.

They cried to You and were saved; in You they trusted and were not disapp

2006-12-14T07:56:00.000-08:00

Praises be to our merciful God, precious little Sebastian was dismissed from the hospital on Tuesday afternoon. They think he had pneumonia. Thanks so much for your continuing prayers for him and his health.

For those of you who are led, please pray for serious health matters facing two of our other family members.

They cried to You and were saved; in You they trusted and were not disappointed

2006-12-10T03:44:00.000-08:00

This is the text message I received from Rob at 5 AM this morning. Please pray to our merciful and omnipotent Lord to heal our precious Little One…

“Sebastian had 103 temp at 1 this morning. Called the doc and she told us to go to Georgetown. I’ve been here since 2. They are admitting him at this time. His white blood cell count is 25000. 4000-10000 is normal”

They cried to you and were saved; in You they trusted and were not disappointed

2006-11-26T19:54:00.000-08:00

I cannot go to sleep this nineteen week birthday of Sebastian’s without telling you what his three year old cousin said when he spent the night with us couple of weeks ago. The grandchildren call me C.C. and Nathan is thrilled when he can spend the night at C.C. s and of course she is too!

Nathan has not met his cousin yet and has only seen pictures of him and has heard stories. Mick has enlarged the picture that was on the last blog posting and has it hanging in our kitchen.

As Nathan looked at the picture this particular night, I could not imagine what he was thinking as he saw the tubes in the nose of his little cousin. He had a most interesting look on his face, one totally unfamiliar to me.

I looked at Nathan and explained that the reason for the yellow tube in Sebastian’s nose is that he cannot yet eat by himself so Rob and Taylor feed him through the tube.

Nathan’s gaze seemed more intense. I tried so hard to explain what he was seeing. How could his little mind comprehend this? Then I pointed out the additional tubes going into each of Sebastian’s nostrils and explained that he cannot yet breathe on his own so those tubes give him oxygen.

Nathan took a deep breath and looked up at me. Joy filled my soul when little three year old wisely said,

“But, he’s smiling, C.C.”

They cried to You and were saved; in You they trusted and were not disappointed

2006-11-09T14:38:00.000-08:00

One pic is "Me and My Daddy's Shoe" the other is "Happy Baby" as Sebastian's brother calls him.

At the bottom of this insert I will cut and paste a copy of the story I wrote this week.

A typical day in the life of Sebastian consists of attempts every three hours to bottle feed or nurse followed by feedings through an NG tube. Each feeding lasts about an hour. From midnight until 6 AM he is on a continuous feed through his NG tube. We pray he will not have reflux and lose what he has taken in. He remains at a 45 degree angle during feedings.

Twice a day he receives breathing treatments with a nebulizer. Several times a day he receives other meds through his NG tube. His little boots are removed once a day for bath time only.

Twice a week a home nurse and a physical therapist come to the house. Once a week he goes to the pediatrician.

He is on oxygen in his room via a converter and via a tank when we take him downstairs or to appointments.

Tuesday at George Washington Hospital he had a repeat hearing test which, praise the Lord, was normal. Today he has a gastro test. It seems there will be tests and visits and outings and this and that for days to come. This month there will be a sleep apnea test and ortho visits and pulmonologist appointments.

Please, please continue to pray for this Little One! Pray for his parents and the professionals who see him and his big brother. Pray God’s angels will continue to protect him from Satan and danger and physical, emotional, spiritual and mental harm.

This verse was in his isolet and is now in his room…please pray it for him…

The Lord your God is with you, He is mighty to save.
He will take great delight in you; He will quiet you with his love.
He will rejoice over you with singing.

They cried to you and were saved; in You they trusted and were not disappointed.

Eight Months Ago Today
November 9, 2006

Eight months ago this very day my sister Kathy and I were sitting in my car visiting when my cell phone rang. You never know what the caller on the other end is going to say, but usually you expect some normal conversation. When you see caller ID flash the number on your phone you can imagine a category of subjects this caller might be calling you about.

But sometimes that is not the case. Sometimes the caller whose voice is so familiar to you has brief and heart rending news. Such was the case with this call.

It was Rob calling from DC to say Taylor is pregnant with their second child and there are serious problems. Maybe this Little One has no kidneys. Maybe he has one. There is little amniotic fluid which we learned is absolutely essential for the development of lungs.

That call came around noon on March 9, 2006.

The details of what took place between then and now are endless. Such would be the case in anyone’s life for eight months.

But these eight months have changed me forever.

Doctors gave no hope for life for this precious Little One. Many wanted to terminate the pregnancy.

Experimental procedures met with no success. Months of prayer and seeking our Lord’s mercy were all we had.

It was clear this decision was to be His.

And so we waited. Two simultaneous thoughts remained with us continually. The doctors giving no hope and our omnipotent and loving Lord’s mercy.

For one hundred and thirty six days we waited.

“Let all mortal flesh keep silent” was the song He led me to over and over. And we waited in quiet and in wonder and with hope and trust for what our Lord would do.

And more bad news came with each doctor’s appointment. But our Lord sustained us. We would feel Little One kick in his little room inside his Mommy. And we would see him on the ultrasound. And we would beg our God for mercy.

I suppose we would all say that miracles are all around us. The intricacies of a tiny leaf to a mighty thunder and lightning storm all are evidence of our Creators miraculous powers.

Hard as we try to explain the parts of a leaf and how it grows, we cannot make a leaf no matter how hard we try. I look at my little doggie at my feet right now. He has eyes and ears and an entire array of systems that make him be alive. He is a miracle of sorts.

Once I was driving across the state of Texas in a huge thunderstorm. Eighteen wheelers pulled over to the side. You could feel the highway shake with each roar of thunder. For me it was an awesome display by our mighty God that I have never forgotten.

Miracles do abound, there is no doubt.

My dictionary says a miracle is an event that appears unexplainable by the laws of nature and so is held to be supernatural in origin or an act of God.

So if that is the case maybe a tiny leaf or a huge thunderstorm are miracles of a sort, but they can somewhat be explained by the laws of nature. That makes them no less awesome, but God has shown us explanations for those. We learned about photosynthesis and storms in our early science classes, so we think we understand thunderstorms and green leaves to the point of where we are not always awed by them.

However, I daresay if the waters of the Atlantic Ocean were to part, it would no doubt be breaking news on CNN and Fox. And if some wedding guest started turning water into wine, he would surely make an appearance on Larry King.

These things would surprise us because no early science class text book explained water changing into wine or oceans parting.

I have experienced many times in my life when I know God was compelling me to do something and I did it and because of His urging something ended up wonderfully. Maybe it would have anyway, I don’t know. I have experienced many times when the love He has for me and my loved ones and all His people just completely overwhelms me. I have experienced many times when the love and support of the body of believers has greatly humbled me. I could go on and on listing these types of occurrences in my life which are also miracles of a sort.

But this Miracle of Sebastian is unlike any I have seen.

Some have argued that the reason for Little One’s health is the excellent medical care Little One received after his birth. We are ever so thankful to each and every one that God continues to use in the life of our dear Little One.

But let there be no mistake: the miracle is the live birth of Little One.

The miracle is our God’s omnipotence in having this precious Little One enter our world crying, with lungs and pink in color….. and not as these most prestigious medical people said he would enter this world.

And so believers who see such miracles are changed forever.

I have joked that I feel like Martin Luther King when he said, “I have seen the promised land!” He said it with such conviction that when we heard him, we knew that he had indeed seen the Promised Land!

The Bible uses the word “miracle.” These particular occurrences are distinguished from other occurrences and are called miracles. The Bible does not speak of the miracle of the fig leaf or the miracle of the storm on the Sea of Galilee. The Bible speaks of miracles or mighty works like a staff turning into a snake, water turning into wine and the Red Sea parting.

These are unexplainable events, attributed solely to the mighty work of our Almighty God.

And I have seen a miracle! I have seen a real miracle, an unexplainable event. Praise God!

And this miracle is our grandson Sebastian, who is sixteen and one half weeks old!

After most of eight months I am now home from DC. After three months dearest Little One is now home from the hospital.

A child who was not to be born alive now thrives through the grace of our Lord.

I am deeply humbled beyond belief and touched to the very depths of my soul ….for we cried to Him and He answered us…we trusted in Him and He did not disappoint us. I can never thank Him enough or repay Him for His mighty deeds.

He is indeed mighty to save!

Our awesome Lord did what no doctor could do!

Our merciful Lord did what no experimental procedure could do!

Our loving Lord defied humans who gave no hope!

We see the miracle our Lord has performed! Let us joyfully praise God!

……the whole crowd of disciples began joyfully to praise God in loud voices for all the miracles they had seen…….

2006-10-26T18:57:00.000-07:00

October 26, 2006 9:19PM

Many of you know that many years ago God led me to a method of having my quiet time that suits me so very well. First, I let Him know about all of my thoughts…my praises, my concerns, etc. Then I ask Him to lead me to two pages in His word that He wants me to read. This results in Him giving me the verse He wants me to have for that day.

What verse would He give me this day….this most long awaited and prayed for day? The early morning of this day that Little One would be dismissed from the hospital….three months after his birth, seven months after the news that he seemed to be in serious danger. What would our most merciful Lord say to me on this early morning of this long to be remembered day?

Then there is was in Malachi:

But for you who revere My name, the sun of righteousness will rise with healing in its wings.

I thought of those words and I thought of dear Little One and his struggles. And I thought of the song I have sung to him every day I have seen him since he was born…..

Jesus loves you this I know
for the Bible tells me so.
Little Ones to Him belong,
They are weak but He is strong

And my tears began to flow and could not be stopped.

In the midst of the hubbub of DC, when I left for the hospital, I heard a familiar tune on from a street corner saxophone player. Soon it came to me.
“Amazing grace how sweet the sound….

"Through many dangers, toils and snares, I have already come;
Tis grace hath brought me safe thus far, and grace will lead me home.

The Lord has promised good to me, His word my hope secures;
He will my shield and portion be as long as life endures"

The day at the hospital was long. Much was to be learned and to be done. Oxygen and feeding and breathing treatments and monitors and so much more.

At last we drove home with Little One. When we arrived his brother Luke greeted him with a grin that would not stop!

And tonight a picture in my mind to cherish forever: his Mommy sat on the sofa in their living room and in her arms she held precious Little One.

Please continue to praise our mighty Lord for His mercy and love and ask for His continued protections from Satan and danger, physical, emotional, spiritual and mental harm for this precious Little One.
They cried to you and were saved; in You they trusted and were not disappointed.

2006-10-22T19:01:00.000-07:00

This past week Sebastian had his plaster casts removed and now has braces. It is a most humbling experience to see Little One go through so much and be so brave, sustained by the grace of our Lord. His feet are in little shoes with a metal bar about eight inches long from the sole of one shoe to the sole of the other. He wears them all of the time except for bath time. After the first twenty four hours, he seemed to adjust to them.

Yesterday I left DC for a few days and am now home. His eyes watched me as I left the unit. They are the same beautiful eyes as they were in the picture posted many weeks ago. If you saw the picture, you understand why I say his eyes express something I cannot describe. There is a depth to them that touches my innermost being. Such a merciful God who has saved him…. so many faithful prayer warriors…I remain overwhelmed.

Now for the news and the prayer requests….this precious miracle of our Lord’s is scheduled to be dismissed from the hospital Thursday. Please praise our loving Lord for there is no way to repay Him. He has been and continues to be with Sebastian. He has been and continues to be mighty to save. He takes great delight in Little One and quiets him with His love. He rejoices over him with singing.

Today Taylor found a verse I had given her when she first went on bedrest...please pray it for this time, for Little one and his family ......"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.'

Please pray He will keep His angels of protection around Little One now and in this move and always. Pray for all aspects of these days. Pray dear Sebastian will remain physically, spiritually, mentally and emotionally healthy. Pray he will be kept safe from Satan and danger and physical and emotional, spiritual and mental harm. Pray he will grow in wisdom and in stature and in favor with God and man, that he will be a man after God’s own heart and that he will glorify Him all the days of his life.

Fourteen weeks ago today I saw God’s miracle that has changed my life forever. Please know how much your prayers and support continue to mean to all of us. Thank you.

They cried to You and were saved; in You they trusted and were not disappointed.

2006-10-17T18:35:00.000-07:00

Trying to update each week….

Today is my Mom’s (Sebastian’s great grandmother) 86th birthday! I talked with her this afternoon and she and my Dad who is 88 were looking forward to Kentucky Fried Chicken that husband Mick would be bringing for dinner. Your prayers would be appreciated for Dad who fell over the weekend and fractured some ribs.

Mick, my sister and brother in law and I all went to visit Sebastian Sunday night. Mick had not seen him since the week he was born and my sister and brother in law had not yet met this miracle of God’s. What a tender time to share…maybe I can hint here that she will write something I can post for you all to read

Yesterday Little One’s leg was horribly swollen and we rushed him to the other hospital to have one plaster cast removed. Tomorrow both casts are scheduled to be removed and replaced with the braces they think he may need for a couple of years.

He still on oxygen, but not as much as he was. He is eating about one fourth ounce from a bottle and the rest through a tube.

Please continue to pray for God’s protection from Satan and danger, physical, emotional, spiritual, and mental harm, as well as for all aspects of Sebastian’s legs and lungs and eating and health to be perfect. Please pray for all to have God’s wisdom regarding all aspects of Little One’s coming home which could be in the next couple of weeks.

Please continue to praise our loving and wonderful Lord for His merciful touch in all our lives and in the precious life of dear Little One.

Thank you for your continuing concern and prayers. We can never adequately thank you….

They cried to You and were saved; in You they trusted and were not disappointed.

2006-10-08T07:53:00.000-07:00

It is Sunday morning and twelve weeks ago this morning God’s miracle of Sebastian came into this world! Children truly are a gift from the Lord!

This past week adorable Little One was transported once more to another hospital to have a test to check on his swallowing. Such a brave soldier is he! He can suck about a half ounce from a bottle, so we are thanking the Lord for his ability to do that and praying for continued improvement. Never again will I observe a baby sucking from a bottle, then swallowing and breathing and not see it as an awesome event.

Next week this precious Little One goes again to another hospital and is scheduled to have his plaster casts which cover his legs replaced with a different type cast. Such a trooper he is as he lies on this big table surrounded by doctors! Please pray for each of these transfers and the details surrounding them. Never again will I observe precious little baby legs kicking and bending and not see it as an awesome event.

He is still on oxygen but the levels have been lowered. It seems likely that when he goes home he will be on oxygen and an NG feeding tube. I watched him have his tube replaced and remain in awe of all he has been through. Never again will I observe an infant without tubes in his nose and leads on his chests and not see it as an awesome picture to behold.

Please continue to praise our loving God for His miracle of Sebastian and ongoing His miraculous care of Him. Please continue to pray for His healing and protective hand to hold this child, as well as for His wisdom for caretakers in each detail of his care. Never will I look at this precious Little One and not see him and his life as a miracle from our loving and merciful Lord.

They cried to You and were saved; in You they trusted and were not disappointed.

2006-10-01T18:16:00.000-07:00

“You will know that I am the Lord…” Ezekiel 20:44

Repeatedly we see God’s almighty hand of protection in the precious life of dear Sebastian. As we all know, in hospitals errors abound. In compromised health situations all sorts of things can go wrong. As the weeks go on, we continue to see God’s omnipotent hand protect Little One.

Without going into details, suffice it to say that we thank you for your continuing prayers and earnestly ask that you continue them. Praise our mighty Lord for His loving mercy in this little life. Pray as you feel led regarding perfect hospital equipment and tests, etc. Continue to ask Him to protect Sebastian from Satan and danger and physical and emotional harm. Pray His angels will strengthen Sebastian and bring him to perfect health. Please continue to pray for Rob’s and Taylor’s wisdom, peace, and steadfastness, as well as for all who attend to this tiny baby.

Our almighty Lord has once more shown so clearly that He is the One Who holds Little One in His hands!

Eleven weeks ago today our holy Lord brought His miracle of Little One into the world!

They cried to You and were saved; in You they trusted and were not disappointed.

(I am continuing to try to post each weekend.....)

2006-09-25T19:28:00.000-07:00

I came home Wednesday for a brief visit and am heading back to DC this evening. By the time I actually post this I hope to be in DC. (I am at 10:23pm)

Sebastian’s foot surgery went well. Thanks to our Lord for His protections and guidance and thanks to you for praying for dear Little One.

In the morning I plan to rush over to the hospital and lift this precious one up into my arms. As the song goes, the moments do seem like hours.

Amid oxygen and feeding and monitoring tubes and wires, I will sing to him and love him and pray for and with him. I will praise our Lord for him. I will watch his numbers on the monitors and I will hear news about him.

When I left him Wednesday, he was once again lying on the table at the same hospital where he had his surgery. His plaster casts had been sawed off and new ones were being made. This time he cried. He cried a lot. It seems good and bad to see him cry. Good in that he no longer likes being “accustomed” to such treatment. Bad in that, who likes to see a tiny one in such a situation?

Please continue to pray for his sucking and breathing and swallowing. Today Liz and I were at lunch and saw a tiny baby so effortlessly suck and breathe and swallow milk from a bottle. Pray for Sebastian's oxygen levels and his lungs to all be perfect. Pray for our Lord’s continuing healing touch upon every aspect of dear Sebastian’s being. And thank Him, thank Him, thank Him!

They cried to You and were saved; in You they trusted and were not disappointed.

2006-09-22T07:19:00.000-07:00

Please be praying for Little Sebastian this morning (10 in DC) as he is in the OR having surgery on his foot. Please pray our Almighty God will sustain him and give the doctors His skill and wisdom. Pray that every aspect will be perfect and successful and that there will be no complications, that he will be kept safe by our mighty Lord from Satan and danger, physical emotional and spiritual harm.

They cried to You and were saved; in You they trusted and were not disappointed.

2006-09-16T18:20:00.000-07:00

Those who know Your name will trust in You, for You, Lord, have never forsaken those who seek You. Psalm 9:10

I am sorry I have not posted in so long and will try to post at least each weekend. Much has been happening and time just seems to fly!

Tuesday Sebastian was transported to another hospital for his milk scan and a swallow test. They wanted to be sure fluid was not aspirating into his lungs and they wanted to determine if he has reflux. It was so incredible to watch this tiny Little One on a huge hospital bed with a huge machine hovering over him for an hour, to leave that area for two hours and return for the swallow test which involved much of the same for him. He did not cry. Again he seems so used to large machines, bright lights and strange people. After 6 hours we returned to the hospital where he has been since leaving Hopkins. We do not have the test results yet.

On Thursday he was once again transported to another hospital to have his plaster leg casts removed and replaced once more and to have a hip x-ray.

I left Wednesday for a brief visit to NC and returned this afternoon and went straight to the hospital. He woke up shortly after my arrival. I held him close and we just gazed into each others eyes as I whispered sweet nothings to this little gift from the Lord.

The original 4-6 week dismissal date projection is now at 1-3 weeks. He still has a feeding tube. Taylor is at the hospital right (910pm) now trying for the second time to get him to nurse. His feedings have been through the tube in his nose. They lowered the percent of oxygen today and we pray he will tolerate these changes. He has gained weight and now is over 7 pounds. He has fat cheeks!

Thank you for joining us as we continue to praise our most merciful and loving God for His miracle of Sebastian and pray His almighty and omnipotent hand will to continue to bring Little One to the excellent state of health our hearts desire.

They cried to You and were saved, in You they trusted and were not disappointed.

2006-09-05T18:48:00.000-07:00

September 5, 2006
945pm

I arrived in DC a week ago tonight after not having seen Little One for two weeks and I plan to leave once again tomorrow and to return again Sunday. During this visit I have spent hours each day in the nursery holding him and singing to him and praying with him and lowly playing Christian lullaby music we played for him in the NICU. Sometimes he sleeps, sometimes he just looks deeply in my eyes, rarely he cries. But sometimes he smiles.

Sebastian is now six weeks old. The miracle of Sebastian is continually a part of me. I remain humbled and awed by God’s loving and merciful hand in Little One’s life.

Please continue to praise our Lord for him. Please pray doctors, nurses and others will all have God’s wisdom and vision in all areas of his care. He has plaster casts all the way from his toes to his hips. Tomorrow the plan is to saw these casts off and replace them with new ones. They are trying a special wedge bed today which keeps him at an angle to help his breathing rate which seems to often go to above 100 breaths per minute. Tomorrow they may also test him to see if he is having reflux problems. They are also trying to decide if splints or taping is best for his hands. He has been on antibiotics for suspected pneumonia and tomorrow they plan to x-ray for signs of improvement. He drinks about one ounce from a bottle and the rest is tube feeding.

Friday will be Sebastian’s actual 40 week mark, the time most consider babies to be full term. Some have said great strides take place at that point.

I am heading to sleep soon so I can get up and drive the forty minute drive to where Little One sleeps in the hospital. The verse above his bed reads….The Lord is with you, He is mighty to save, He takes great delight in you, He quiets you with His love, He rejoices over you with singing.

What a wonderful thought to fill our minds as we go to sleep……..

They cried to You and were saved, in You they trusted and were not disappointed.

2006-08-30T19:05:00.000-07:00

August 30, 2006

If you make the Most High your dwelling – even the Lord Who is my refuge- then no harm will befall you, no disaster will come near your tent. For He will command His angels concerning you, to guard you in all your ways…

I am back in DC and spent much of the day at the hospital cradling dear little Sebastian in my arms. Taylor and I rode in a van with Sebastian and his nurse to meet Rob at Children’s Hospital to have new casts put on his little legs. Most likely tomorrow they will put new splints on his tiny hands. Today we were told it seems he has a little pneumonia in one lung so they have begun him on antibiotics. He remains on several medications, as well as oxygen and the feeding tube.

As he lay on the big table at Children’s Hospital and four medical people and his parents and I observed, we saw a most calm tiny bright eyed Little One, undisturbed by the bright lights and the taping of his legs. Maybe it was that he has grown accustomed to such. Maybe it was his Mommy holding his hand and his Daddy holding his hand gently on his little head. Maybe it was C.C.’s and others prayers.

Maybe it was His angels guarding him in all his ways….once again.

Please continue your prayers of thanks and protections to our loving Lord, our Most High, our refuge.

2006-08-26T19:12:00.000-07:00

This is a pic taken today of precious little Sebastian for whom you are praying.

He has ear and eye checks this upcoming week, as well as a doc appointment about his legs. As you can see he is still on oxygen and has a feeding tube in his nose.

But look at those eyes! Praise the Lord!

They cried to You and were saved; in You they trusted and were not disappointed

2006-08-24T15:20:00.000-07:00

He tends His flock like a shepherd; He gathers the lambs in His arms and carries them close to His heart.

Sebastian was one month old yesterday and we are so thankful to our merciful Lord for this precious Little One!

At the family meeting today, Rob and Taylor learned Sebastian will be in the hospital another four to six weeks. His little lungs are progressing as if he were born at 24 weeks instead of 33 weeks.

His leg became swollen yesterday so they have removed his casts and now will wait until the sore on his foot heels before they can be replaced. They have another meeting scheduled for August 30 in which they will find out more about his little legs but for now they are making new splints for his hands and legs.

Please continue your prayers for Rob, Taylor, Luke and especially tiny Sebastian.

I read yesterday the verse about an angel appearing to strengthen Christ before He went to the cross. It is so reassuring and encouraging to be reminded that our loving Father is always there for us no matter how intense the trial may be.

Please thank God for His angels He sends to His people, as well as for the truth that He gathers the lambs and carries them close to His heart. Pray He will continue to bless Little One in every way, protecting him from Satan and danger and physical emotional spiritual and mental harm.

2006-08-21T20:22:00.000-07:00

Thanks once more to each of you who came to the prayer service for Sebastian, as well as to each of you who so faithfully continue to pray to our loving Lord for him.

Please pray for all aspects of the first family meeting which will be held this Thursday morning. Please pray for God’s wisdom for each person who has a role in this meeting and that Sebastian’s best interests will be served in every way. Please pray for him to be healthy in every sense of the word…for his lungs, for his eating, for every part of his little body and mind to develop and function perfectly.

Please pray for our omnipotent God’s continuing protections for this precious Little One…that he will be kept safe from Satan and danger, from physical, emotional, spiritual and mental harm.

Please continue to thank our merciful God for His blessings in Sebastian’s life and in each of our lives.

From the fullness of His grace we have all received one blessing after another….

As you may know by now I write little stories most Thursdays…below is the one from last Thursday

The Miracle of Sebastian
August 17, 2006

“…you seek Me , not because ye saw miracles, but because ye did eat of the loaves and were filled. Labour not for the meat which perisheth, but for that meat which the Son of God shall give unto you….”John 6:26

On March 9, 2006, Rob called to tell me Taylor was pregnant and simultaneously he told me of the serious problems with the pregnancy. There was little to no amniotic fluid, essential for lung development. There may be no kidneys. The disbelief and the hope hit me simultaneously.

Five months is not a long time in the grand scheme of things, but these past five months at this moment seem a very long time. Most of it I spent in DC or Baltimore trying to be Taylor, an impossible task. She was in bed for months and I tried to do many of her chores.

From the very beginning God gave me a verse, “They cried to You and were saved; in You they trusted and were not disappointed.”

I clung to that verse, that promise, that reminder of His unfailing faithfulness these sixty years of my life.

But the storms were not to let up. We were told heart breaking stories about what this birthing would be like, all that would go wrong. Over and over the news was seldom good.

The hours and the days passed. One remedy after another was attempted. Innumerable phone calls to experts. Innumerable emails from others who had experienced similar situations. Innumerable internet searches and phone calls for experimental things being done in a situation like this. Travel to NYC and to Baltimore to correct this suggested by experts fatal for Little One situation.

Persevering parents and others who kept seeking ways to make this wrong right were held up by our omnipotent Lord.

And life went on as best it could in view of the unknown that could unfold at any moment. Memorial Day in DC with all the cousins and aunts and uncles and me and Mick in May was followed by June and Taylor’s birthday and Rob’s Father’s Day celebrations at the Four Seasons. Then July and Rob and 20 month old Luke held a fireworks display to the second floor bedroom window where Taylor lay. And her room was constantly filled with flowers. And Rob planted and tended the garden paradise he and God had created in their yard.

And they marched on. He would go to work. And she would work from bed. And I would get groceries and take Luke to the doc for checkups and do laundry.
And little was said about Little One who was constantly on our hearts and our minds and in our prayers.

Special diet and tons of water and bed rest for months and humor and church and books and movies and phone calls and rushing to the hospital over and over.

And prayer. Prayers from innumerable people to our omnipotent and merciful and loving Lord that He would have mercy and save Little One.

Such was life for a very long time.

Sometimes it seemed as though all was lost. One night in June around ten while Rob was out of town, Taylor and I rushed the hour drive to the hospital in Baltimore. I had spoken with her doc, who said they would probably take Little One. Taylor and one of the priests at her church were on the phone praying much of the long, quiet, dark drive there.

When we arrived at the hospital, we were taken to a hospital room. They were going to take Little One. They explained the procedure.

We knew it was too soon.

Even with the unbearable and unending words from the doc to Taylor as she lay in that bed without her husband at her side, the Lord gave me hope as I sat quietly and prayerfully in the chair in the corner of her room.

In time Rob was on the speaker of my cell phone. He heard some of the plan. He told the docs to wait until he returned. He tried to get flights but could not get in until around noon . They would wait as long as Taylor was not in danger.

Rob arrived with Luke and Luke and I left the room. Awful moments ensued that day. I stayed with Luke at the hospital and talked with loved ones on the phone who prayed through that time with me.

At one point the four of us were all standing in the hall, because a nurse decided not to let Luke return to the hospital room. There we were. Taylor in her hospital gown, me and Luke, Rob all standing in this hospital hall discussing whether to stay or to leave all knowing the implications of that decision.

It was an almost unbearable time. Luke and I left them. Prayers continued. Heartache continued.

Then Rob called. We are going home.

Our Lord’s hand moving.

In time the truth began to dawn on each of us. There was nothing to be done. The essential life giving waters seemed not to be there. They seemed not to remain no matter what was tried. This was not to be of man’s doing. This would be our almighty God’s doing.

Experts continued to tell us what to expect. My heart was heavy but God kept my hope steadfast. My merciful and loving dear Lord never had me lose hope.

But everyday, every moment He held me up by His hand. He gave me Scripture. He gave me dear family support and help unlike any I have ever experienced. He had loving friends call or send encouraging, hope-filled emails. We found our faith was encouraging others.

Then one night they rushed to the hospital once more and it was decided Taylor would remain.

I returned to DC that Saturday and about 11pm that night and Rob called and said it is time.

I drove in the rain to Baltimore, praying and calling on others for prayer. I arrived around the same time Rob and sleeping Luke did from the hotel. Rob left to be with his wife. Luke slept and I lay with him in his mommy’s hospital room praying and waiting and keeping others updated and seeking their prayer and seeking my Lord.

By 2AM Rob text messaged me saying Little One is being born right now.

The moments and hours that followed are still too overwhelming to think much about…..so for sure not to yet be written about.

All I can say is Rob came into the room where his sleeping eldest son and I were and said……….he came out crying, he is pink not blue.

Our Lord performed a miracle. I have walked though a miracle. I have held a miracle.

Weeks before dear Sebastian was born and about the same time the truth of what He was doing hit us all, the Lord gave me a verse that I wrote on a post it and carried around attached to my cell phone…

Then they will know that I am the Lord.

I am humbled beyond belief.

I am changed forever.

2006-08-17T16:19:00.000-07:00

Sebastian was moved today to HSC Pediatric Center in Washington DC and seems to be adjusting fine. Please thank our loving God for a good and safe transfer.

Please pray that those who assess him will have God’s wisdom knowing what steps to take and how long he should be there. Please pray that every aspect of his care will be perfect and that our merciful Lord will continue to protect him each moment from Satan, danger, physical, emotional, spiritual and mental harm. Please pray He will continue to command His angels of protection around dear little Sebastian, that he will grow in wisdom and in stature and in favor with God and man.

Please pray for peace and wisdom for Rob and Taylor and Luke as they adjust to this new phase. Pray for all of us to have God’s spirit of unity.

Many days I send out a verse and brief prayer to a group of people. Yesterday’s verse was particularly appropriate for me in many ways because I was not yet ready for Little One to be moved from the protective and loving environment in which he has been.

….we and the people there pleaded with Paul not to go up to Jerusalem. Then Paul answered, "Why are you weeping and breaking my heart? I am ready not only to be bound, but also to die in Jerusalem for the name of the Lord Jesus." Acts 21:13

Note from Matthew Henry....”In the turning of the hearts of our friends or ministers, this way or that way (and it may be quite another way than we would wish) we should eye the hand of God and submit to that.”

Lord, please help all Your people, including my loved ones and me, to seek Your will first for those we love as well as ourselves, even when circumstances may not be as we wish. In your Name Amen

2006-08-16T18:28:00.000-07:00

It is Wednesday about 8PM and I just talked with Taylor.

Sebastian will probably be moved to a step down unit in DC either today, tomorrow or Friday. Please pray for every aspect of that move to go perfectly. Traffic between Baltimore and DC can be awful or wonderful. Every detail of his oxygen, his care in the ambulance, his feeding, his dealing with the change, leaving his current situation and having new docs and nurses…whatever God leads you to pray about, please do.

Please pray for our omnipotent Lord’s hand of protection to remain with Little One.

Please also continue to thank our merciful and loving Lord for His miracle of Sebastian.

We do hope you can join us for the prayer service for Sebastian this Sunday at 2PC at 5pm.

They cried to You and were saved; in You they trusted and were not disappointed.

2006-08-15T08:51:00.000-07:00

PRAYER TIME Second Pres Prayer room 4055 Poplar Avenue Memphis TN 5PM August 20, 2006…
Please email me at
susani97@midsouth.rr.com
if you can come.

(If you have not read last night’s blog, please do so….thanks)

From the beginning of this journey our merciful and loving God has given this verse from Psalm 22:5

They cried to You and were saved; in You they trusted and were not disappointed.

Then after a few weeks He gave me another verse that He had me know I would one day pray and claim. I have had it written in the front of my prayer journal for months….

It is Isaiah 25:9 Surely this is our God…we trusted in Him and He saved us.

Our omnipotent God has made it so clear that Sebastian’s birth is His doing. Docs at Johns Hopkins were ready to take him months ago. We tried everything we were told. Docs at NYU tried their procedure. NICU docs and others still said he would not live.

Only a few held out hope.

Over and over we heard, amniotic fluid is essential for lung development. There is no measurable fluid. He cannot live.

But on the Saturday that Taylor went into labor our loving Lord gave me this verse:

Ezekiel 47:11 ……….. the water from the sanctuary flows to them….

I have taken many seminary classes and I know there is huge danger in taking verses out of context, but I had chills over my entire body when I read that verse. I knew my God and King was speaking to me, reassuring me that He would provide the water that would be needed for these tiny lungs.

Then within hours these lungs…… that would not be there…. this baby who could not cry…this Little One cried……….

So please come join us in spirit or in body because

Surely this is our God…we trusted in Him and He saved us.

2006-08-14T19:32:00.000-07:00

It is Monday night and I am home. Daddy’s 88th was wonderful and his 82 year old brother who has the same birth date flew in from TX and they along with their 86 year old sister and my Mom and my aunt and me and my hub were all together Saturday night.

I have prayed many times that Sebastian would have a good long full life, maybe even live as long as my Daddy. He is now 3 weeks old!

Please praise the Lord for His continuing protections and mercies and love for precious Sebastian as big steps are about to take place.

Please pray that the casts on his legs may only need to be changed once more and that his legs will be fine. Please pray that he will continue to be able to eat from a bottle- he did very well today in his one feeding, but he still gets most nutrition from a tube into his little tummy. Please pray his lungs will develop and be healthy-he is still on oxygen and his saturation levels vary.

The docs hope to move him by ambulance this week to another hospital and out of intensive care. This is a big step. Please pray it will only happen if this is best for Sebastian and that he continues to be protected from Satan and danger and physical, emotional and mental harm.

It is so difficult to explain how little dear Sebastian has changed our lives forever. He has been through more than all of us put together and yet is so very tiny. I cannot describe to you the anguish I have seen on his little face….the bruises and injuries to his fragile body.

But our Lord’s touch in his little life and tiny body has touched our lives forever…. leaving us without words or even thoughts…..just so very humbled and so very thankful….…..in a way which once again makes me want to echo words of the hymn we sang at church yesterday….

“Let all mortal flesh keep silent………..ponder nothing earthly minded”

They cried to You and were saved; in You they trusted and were not disappointed.

2006-08-11T12:19:00.000-07:00

August 11, 2006
Leaving DC

Yesterday terrorists were arrested in Britain and I am now sitting at the DC airport. Security is tight! There are no empty seats where I am sitting. I just went through a weird new security machine that you step into and it blows air at you in different little pockets. I wonder if that is what it was like when Scotty was beamed up.

I returned to Baltimore from NC last night after a wonderful visit with our son and his family settling into their new home and a then brief visit with my sister who lives in a nearby town.

I ate dinner with Luke and his mommy and her parents. Then I went to the hospital and stayed for the night. As I held Little Sebastian this morning, I knew I was holding a miracle. The feelings that transpired between us are indescribable. How does a grandmother express the love she has for her grandchildren?

How do I express the love I have for Sebastian? His hands are in splints much of the time now, but his hands were free this morning so his little fingers wrapped around my pointer finger. He was receiving mommy’s milk through a tube that leads down his throat into his tummy. His eyes were opened much of the time and we just gazed into each other’s eyes.

I knew the time was coming when I must leave and drive to DC and meet Rob so he could take me to the airport to catch my flight. I softly stroked Little One’s blonde hair and spoke gentle grandma things to him.

The tears were difficult to hold back……..they still are as I sit in this crowded, security filled airport….

I hugged Sebastian’s daddy goodbye and got out of his car….. my body has entered another world, the world most of you have been in….

Yesterday we received word Sebastian will be moved to a step down unit at another hospital. The hope is he will no longer require NICU by next week. Decisions must be made about what is best for him.

Please continue to praise our Lord for all he has done and continues to do, as well as praying for His continued protections and wisdom as decisions are made…

I have not been home in almost six weeks and even then for only a few days…I have been in DC or Baltimore most of the time since before Easter. My three year old grandson at home called me three times yesterday to tell me it is only one more day! Today is my Dad’s 88th birthday………

The verse our loving and merciful God gave me way back on March 9 to be my hope through all of this…..

They cried to You and were saved; in You they trusted and were not disappointed

2006-08-08T05:36:00.000-07:00

Before I left Baltimore yesterday to meet Rob’s brother and his family in NC and to wait for the moving van, I held Little Sebastian to close to me in his NICU room. His head is so small it fits in the palm of my hand. I sang to him…..he yawned…..I laughed. Love has blossomed.

He is now in a bassinet. Attached to it is a verse from Zephaniah that Liz wanted read to him about how God will quiet him with His love and rejoice over him with singing. Attached also is a circle drawing from his three year old cousin Nathan and a sticker art work from his brother.

He is still on oxygen and is being fed from a feeding tube. He has little casts on both legs. He has lots of monitors hooked up to him.

But he has lots of love too…..especially from our most gracious Lord Who has held him in the palm of His hand and blessed and protected him.

Rob spent last night in DC, Taylor’s parents and Luke are with her and Sebastian in Baltimore. I plan to return to Baltimore Thursday and then home on Friday for my Dad’s 88th birthday.

Yesterday as I was driving to NC, I was overwhelmed with tears and gratitude to God for the miracle of Sebastian….I have been touched to the core of my being…probably changed forever, as many have said they have been by this miracle.

I felt God asking if I felt as overwhelmed, as touched, as changed by the miracle of His Son.

Please continue your prayers of thanks and protection for precious Sebastian…your prayers of thanks for our Lord and His unfailing love and unending mercies.

2006-08-05T14:41:00.000-07:00

Blessed is she who has believed what the Lord has said to her will be accomplished.

This morning I went to see our precious little Sebastian. All four of his fingers wrap around the first joint of my pointer finger. His head is about the size of my palm. His 21 month old brother Luke’s four fingers wrap around my first two joints and their daddy’s four fingers wrap around the length of my entire finger.

I have held each of those three hands many times.

Today when I entered the room Melanie, the nurse who yesterday got a sad face sticker because she complained when she was not allowed to be Sebastian’s nurse for the day, asked me I wanted to hold my grandson.

I put on the yellow gown and sat down. She arranged all the tubes and hoses.

Then she handed this little bundle to me.

And for the first time I held this precious gift from the Lord.

His tiny fingers wrapped around the first joint of my pointer finger.

After an indescribable hour, I floated out of the NICU and out of the hospital.

I called Mick. I told him about my holding Sebastian………I also told him that at that very moment the bright blue sky held one white billowy cloud which blocked the sun and truly caused a silver lining with rays that spread out across the sky…………..

Please continue your thanks to our Almighty Lord and your prayers for His continuing hand of protection on this tiny babe.

2006-08-04T19:20:00.000-07:00

Have faith in God, Jesus answered. I tell you the truth, if anyone says to this mountain, Go throw yourself into the sea, and does not doubt in his heart but believes that what he says will happen, it will be done for him. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.

Forever I will be thankful to my merciful God for not allowing my doubt to prevent His miracles, for not allowing my lack of faith to nullify His faithfulness. Forever I will be thankful to Him for those prayer warriors who never doubted in their hearts the miracle of Sebastian.

Our little man continues to need your prayers. As he fights his addiction to fentanol by now being on morphine, as we watch his fretfulness and flailing arms and heart racing, as we know it is only God’s almighty hand that sustains and protects him, our hearts are continually humbled.

I left him just a little while ago. He tightly held my finger and looked at me from his little clear plastic house. I prayed with him and sang to him. I talked softly to him and loved him. Rob and Taylor are with him now. I am heading into sleep with his brother.

Please continue to pray thanking God and seeking His ongoing protections and blessings.

I do thank God for each of you, for your prayers, for your love, for your support.

2006-08-03T13:42:00.000-07:00

I remember my affliction and my wandering, the bitterness and the gall. I well remember them and my soul is downcast within me. Yet this I call to mind and therefore I have hope.

Because of the Lord’s great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The Lord is my portion; therefore I will wait for Him.”

The Lord is good to those whose hope is in Him, to the one who seeks Him; it is good to wait quietly for the salvation of the Lord. Lamentation 3: 21-26

Today I was in Sebastian’s room and a lady was so quietly cleaning his room you might not notice her. I had been holding his little hand and singing to him through the port hole of his little house.

She and I spoke to one another and then we were both quiet. I am really not sure who spoke next but we exchanged words…her comments were sort of broken, but so very clear….

She looked at me and then at Sebastian. She said “he will be ok…the spirit…I say a prayer each room…… I mop the floors…not my job… I do it for the babies…”

I asked her name. She said Ethel. I told her I would pray for her.

I still have not told you about Frances. She took a seat by Mick, Luke and me last week on the completely empty hospital patio. We said hi to each other. She is a security guard here. Somehow we communicated that we are both Christians, that we love the Lord.

I told her a little about Sebastian. I did not need to tell her much. She seemed to know.

Her eyes were so deep. She looked into the distance, a look I do not think I will ever forget. She said, he will be all right. I see it……………

I asked why she sat by us when the patio was empty. She said the Lord told her to.

Luke and I have certain things we do at the hospital. It has been unbearably hot, so we have made up indoor activities. We go to the bear room. We go to the flower shop. We sit and look at fish in the aquarium in the waiting room.

Two fish actually came right over to me looking me in the eyes…they were so close to me even Luke chuckled…it was as if they were talking to me. They were angel fish. I think God really has a sense of humor. I named the fish Frances and Ethel.

I wanted to tell you all those things, but what I have to say next will make me cry so I saved it until last. It is hard to see the keyboard with tear filled eyes.

Yesterday they took Sebastian off the ventilator and just put a special pressure oxygen tube in his nose. That means nothing was down his throat.

I was the first to be in his room after the docs finished.

For the first time I saw and heard our tiny grandchild…..,our precious gift from the Lord ….I saw Sebastian open his beautiful tiny mouth and I heard him cry…………

They cried to You and were saved, in You they trusted and were not disappointed

2006-08-02T09:51:00.000-07:00

Please continue to thank our most merciful Lord for all His blessings and protections.

Please pray for Sebastian’s temperature to become normal and for there to be no problems at all. Pray God’s angels of protection will continue to surround him and that he will be kept safe from Satan and danger and physical, emotional, mental and spiritual harm.

They took him off all antibiotics yesterday and we once more turn to our Lord to protect him.

Today the ultrasound technician who had gone through the entire pregnancy came by. We stood over Sebastian’s little “house’ and hugged and cried….for this tiny child, this awesome miracle of our Lord’s.

They cried to You and were saved; in You they trusted and were not disappointed.

2006-08-01T12:54:00.000-07:00

August 1, 2006

“No, in all these thing we are more than conquerors through Him Who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” Romans 8: 37-39

A bird is sitting on the window sill outside the little house Rob has rented across from the hospital where Sebastian sleeps. He looks in at me periodically and I out at him. We are not two feet apart but glass separates us. I am listening to music on my computer…Christ the Lord has risen today.
Liz is downstairs with Libby, as Taylor is with Luke. Jon and his little family are doing the last few things at their home they are moving from this afternoon. Rob is at work.
Today Liz went up with Taylor to Sebastian’s room at the NICU. I kept the two little people. We watched digger trucks from a hallway view out to the work sight. We then went to the bear room, a little area where stuffed animal gaze out of windows to little eyes returning the look.
Soon Liz came down with a light in her eyes…you must go up Mom.
Is she holding him, I asked? Yes, she said, she is holding him.
I hurried through the halls with tears filling my eyes.
There they were… a sight not my eyes nor my mind could not comprehend. Little Sebastian for the first time being held close to his Mommy’s breast…never such a look of peace had I seen on his face.
I returned to the chapel and thanked our Lord once more for what doc after doc said was impossible…..for the life of little Sebastian, for His leading and hand throughout all of this, for His angels, for the amazing and caring staff.
Mick told me yet today of another email he received in which a woman said her entire church is praying for Sebastian. Seems thousands must be praying for this Little One.
He has now had his first tube feeding-please pray all aspects of his digestive system function perfectly – that he digests and eliminates perfectly. Pray as docs plan to put casts on his legs for club feet that all goes perfectly. Please pray there will be no new complications and that Sebastian will continue to grow in wisdom and in stature and in favor with God and man
As you pray for God to continually protect Sebastian in all ways, please thank our most loving and Almighty God for all He has done and continues to do….for His love

Nothing can separate us from the love of God that is in Christ Jesus our Lord. Romans 8: 37-39

They cried to You and were saved; in you they trusted and were not disappointed.

2006-07-31T17:56:00.000-07:00

Monday July 31, 2006

531 AM text from Rob………”They have taken the rate down from 45 to 35 and the PIP from 22 to 21. Still no #2. Besides that uneventful night.”

Please pray that Sebastian will have a bowel movement. They are trying a second suppository this afternoon and then a stronger med soon. His billirubin count is varying so he is back under the light which should help. In the past it has even gone up with the light on.

The possible reasons for it being up are many, but as I understand it when our red blood cells die they must be able to leave our body, being processed by the liver and going out as waste. The light helps process them and having a bowel movement should help too.

But our true help is in the Lord.

It seems to me there are innumerable procedures and changes that take place every day .

But the one thing that has remained constant and unchangeable is the Sovereign loving and merciful hand of our Lord. He does not change and He has been steadfast in His protection of Little One. Through many dangers he has already come.

Please continue your steadfast prayers for Sebastian’s protection in each and every aspect of his precious life. Please give thanks and praise our Lord for His mighty works.

The day Sebastian was born I went to the chapel with Luke. God led me a verse that I saw there again today…..I believe it is the same one…

Help me O Lord my God, save me in accordance with Your love. Let them know that it is Your hand, that you, O Lord, have done it. Psalms 109: 26-27

848PM Sebastian did have a bowel movement and they have taken another line out so hopefully they can begin to feed him through his IV….there are many reasons to continue your prayers…both those of thanks to God and those asking for His continued mercy and protection for this dear Little One Sebastian……

2006-07-30T05:38:00.000-07:00

Luke’s little devotional book title for today is “Saying Thank You.” It is about one little boy giving another a birthday gift and the first said thank you. It goes on to say that God gives us presents everyday and how we need to remember to say thank you to God for everything He gives you everyday.

The verse is Ephesians 5:20 and this version reads, “Always give thanks to God the Father for everything in the name of our Lord Jesus Christ.”

The prayer reads, “Thank you, God, for gifts You send. In Jesus name I pray. Amen”

Please thank God today for Little Sebastian, for His mercy and continuing protection of this Little One. Please thank God for his first week birthday, for the precious gift he is from our gracious heavenly Father.

These were the most recent text messages

554PM last night
Down to 55 % oxygen, 6 on dopamine, 5 on fentanyl. His blood count is low so they have him on blood products to raise. Otherwise sounds like a positive day thus far.

1146PM last night
His gases have not been good. They raised breaths per minutes again to 45. If they do not improve in the next few hours, he’ll have to go back on the jet ventilator.

526AM today
Billirubin is back up so lights back on. They’ve taken down oxygen to 40%. Dopamine down to 4. last night. Oxygen level has dropped lower than they would like. Otherwise not a bad night.

Please continue to pray fro Sebastian’s heart and lungs and overall health to just be perfect. The Lord tells us to aim for perfection, so that is our prayer! Pray His angels of protection will guard Sebastian in all his ways.

Hubby Mick returns home after a week visit here with our newest grandchild. Daughter Liz and their 11 month old Libby arrived last night.

We thank God for each of you too who have been such faithful prayer warriors for this precious gift from Him.

2006-07-29T10:33:00.000-07:00

Saturday

Yesterday was a most eventful day. After the first hours of the morning (contained in yesterday’s post) our merciful Lord once again showed His power. They moved Sebastian from one type of ventilator to another…a good thing.

They took out his catheter and the missing tubes and the quieter ventilator made all the difference as our eyes looked on this most tender and blessed by God Little One.

But Frances is the story I want to tell you about. But first today’s text report from Rob and the prayer request.

5:24AM Not a great night. Gases not good they are doing another right now. They had to increase rate to 40 from 35 and pressure from to 22, reinsert catheter as he has not been urinating on his own all night

5:53 AM had another gas come back better. They are leaving settings where they are now.

6:08AM His blood pressure has just gotten much higher so they lowered the DOPamine from 11 to 8 As I understand it this is not a negative.

So each moment, as you can see, we move from one situation to another.

Please continue to praise and thank our almighty Father fro the great work He continues to do. Please continue to pray for each aspect of Sebastian’s health, for his protection from Satan and danger and physical, spiritual, mental and emotional harm . Please pray for God’s angels to protect and help this Little One. Pray only perfect equipment and perfect treatment will come his way.

Pray as the Lord leads you.

Thank Him for all he is doing and continues to do.....we are overwhelmed with his mercy and love.......thank him also for people like Francis…I will tell her story later.

2006-07-28T05:52:00.000-07:00

Please see previous texts from this morning…

815AM text...."Gases were not so great so they’ve gone up on the PIP to 35. Next one in next hour or so needs to be better."

Please pray to our loving, most merciful and omnipotent God for the life and health of little dear Sebastian....

They cried to you and were saved; in You they trusted and were not disappointed

2006-07-28T04:26:00.000-07:00

July 28, 2006

Text from Rob

600AM Not good morning Lots of issues. Rate and pressure are both up this morning. Fellow is on with attending to see what to do next

614AM
They have brought up rate to 480 and PIP to 34 due to bad gases. The doctor said it is a step back. Be praying that his next gas in an hour or so improves.

They cried to you and were saved; in You they trusted and were not disappointed.

2006-07-27T07:40:00.000-07:00

Text from Rob at 6:05am today

“His PIP count went up overnight from30 to 31. Want it to go down. It’s the pressure count they are using on the ventilator. Pray his next gas looks good and no more pneumothorax.”

Please keep in mind each of these measures they take have extreme risk that accompanies them.

As in the miracle of Sebastian’s birth and his first cry that surprised all who heard, the miracle of his survival and healthy life will surprise all….and everyone will know it has been the almighty hand of our merciful God at work.

They cried to you and were saved; in You they trusted and were not disappointed.

2006-07-26T20:31:00.000-07:00

Taylor left the hospital yesterday and they spent one night at one location and now have another place nearby through Aug 9, then another starting after that. Thank you for your prayers regarding their housing.

Little Sebastian is not stable.

But our hope and our prayers are strong and our God is omnipotent.

Rob talked with a doc today and it seems that if Sebastian lives this will be a very long stay at NICU…maybe months. So, we can do months, right? If Sebastian can fight, we can too! If God wants it, He will supply what is needed.

Please pray Sebastian will become stable and that his vitals and gas remain good….please pray for healthy heart and lungs…that no damage will be done to them. Please pray for no more complications, no more pneumothorax or heart problems, pray the infection and jaundice will clear up. Please pray for all aspects of his health to become excellent.

Pray God’s angels of protection will continually minister to Sebastian giving him all he needs and keeping from him that which might harm him. Please pray Satan will be kept from him.

Please continue to pray for Rob and Taylor.

Mostly thank this God of ours Who has in His mercy and love brought this little miracle baby so many days into this world, when no man believed it could happen. Praise Him for the many who have prayed so faithfully for this little precious and much loved gift from the Lord.

By the way I don’t think I told you, but the doc who was to take Little One months ago when all this started, the one who did not offer any hope, he is the one who God had on call and who delivered Little One!

I am not sure when I will post next because we will be staying with them starting tomorrow and I am not sure if there is wireless there.

2006-07-26T04:15:00.000-07:00

If you have not read last nights post, please do....

605AM text from Rob

“Sebastian had a good gas this morning. They brought oxygen down to 80% overnight and there were no more pneumothorax. His billirubin is up so they have him on more lights to help get under control. The phrase for the night was “Good eventful” he is still not stable. Pray for no more pneumothorax, that he keeps having good gases, and his vitals stay where they are.”

Our Lord has been so faithful and so merciful to us……your prayers and concern have been so deeply moving….there are no words…

Little Luke still sleeps in the big bed in our hotel room down the road from his little brother he has not yet met. But when he saw Sebastian’s pic the first time, even with tubes and tape and all….little Luke’s face broke into a grin.

Children are a gift from the Lord…Babies are His reward………

We cherish each moment……………..

2006-07-25T19:46:00.000-07:00

1036pm

hope you have read the next blog and are praying....
After I prayed tonight I felt God leading me to edit the post and add the last paragraph, so if you read it before 1030 DC time you might want to read the edit.........

also my verse as I head for bed...."the whole assembly became silent as they listened to Paul and Barnabus telling sbout the miraculous signs and wonders God had done...." Acts 15:12

What miracles He has done here!

2006-07-25T18:39:00.000-07:00

910pm text message from Rob tonite 7/25/06

“Major prayer for tonight is that there are no more pneumothorax and that the doctors are able to lower the pressure on Sebatian’s ventilator while maintaining “good gases” something they check every hour or two.”

All of this is extremely important and a fine balance is critical. The oxygen level he is receiving is now at 90% and needs to be around 35%

Please also praise our loving Father for His continuing mercy and love and all He in His omnipotence is doing for dear little Sebastian.

When I saw him today, the emotions are overwhelming to see our tiny little grandson with so many tubes yet fighting so hard. Again I sang Jesus loves you,……Little Ones to him belong, they are weak but He is strong……

…..reminding dear sweet Sebastian that he has been Little One since his conception and that he needs to rest because he is weak, but God is strong………..

added at 10:32pm DC time
Rob and Taylor did not lightly choose Little One's name...you may be like me and not know the story of the early Christian martyr, Sebastian
Saints: Saint Sebastian
Saint Sebastian is represented in many paintings. He was an early Christian martyr who became popular in the Medieval and Renaissance periods. Saint Sebastian served as a soldier in the Roman army, but he was discovered to be a Christian and so was sentenced to death by the emperor Diocletian. He was to be shot by his own archers. He survived the arrows, which miraculously failed to pierce any vital organ, and the arrow became his identifying attribute.

2006-07-25T03:10:00.000-07:00

Text message just received from Rob 530AM:

"Sebastian had a pnuemothorax overnight that caused his vital signs to drop to a worrisome level. They are back up at this point but they seem extremely concerned about this issue. The pneumothorax was roughly 40 ccs in size. He was down to needing 70 percent oxygen and is now up to 100 percent. The 70 number is much more preferred. Ideal would be less than 35. "

As I slept with little Luke last night in his Mommy’s and Daddy’s bed last night, off and on all night, he cried but without tears and not awake. His face would grimace and he would cry out…a cry unlike any I have seen him ever have. I would kiss his little face and talk softly to him until the crying stopped, but it would happen over and over.

Please continue your ardent prayers to our omnipotent and merciful Lord.

2006-07-24T15:41:00.000-07:00

I just talked to Susan. She went into see Sebastian and he is looking good. He really held her finger as she sang Jesus Loves Sebastian to him. Let us give thanks to God, but continue to pray for the doctors to have skill and wisdom and for Sebastian to be guarded by His angels and his little life supported in His Almighty hands.

Do pray for Rob and Taylor and the many large and small decisions they must constantly make. Taylor will be released from the hospital soon and they must figure out what to do about housing. Pray that they will have peace and wisdom...knowing that God will provide and trusting in his tiiming. Once again thank you for all of your diligent prayers.

posted by Liz

2006-07-24T09:05:00.000-07:00

For now the rate is back up to 164...thanks be to God...please keep praying...

2006-07-24T09:02:00.000-07:00

Please read previous blog first…its very important. Luke and I are at the hotel and I spoke with Rob about 9:30 DC time. He said that things are status quo with little precious Sebastian (but please read next post which was 10 DC time). So many are praying for him. When Liz was at our church yesterday, she told one of our very faithful prayer warrior ministers about Little One coming into the world crying. The minister stopped where he was in our most traditional church hall and fell to his knees and praised God.

Please pray that God’s angels continue to minister to Sebastian as there are so many wonderful medical people, but so many errors that can be made.

Yesterday before I left the hospital I went to say goodnight to precious Little One. He looked good. Then they had to change his chest tube and do several other things. When I went back in after the procedures he looked so very weak and so very still. I did kiss him though and he responded. Ron told me late they put the tube in wrong and have to do it again.

All life is precious and each life totally dependant upon our Lord’s mercy. Little Sebastian just seems so much more dependant…so very frail, yet such a fighter. I told him yesterday that God is with him and that when he feels weak it is OK, for God will be his strength.

As you know from Liz’s post, twelve doctors were in the room to see Little One be born either not alive or to live moments. No man has given much hope, but this is not about man.

Thank you for your faithful prayers to our omnipotent and loving and most merciful Father, for He is with us all.

They cried to You and were saved; in You they trusted and were not disappointed. Ps 22:5

Then they will now that I am the Lord…Ezikiel 25:17

Posted by Liz dictated by Susan

2006-07-24T07:56:00.000-07:00

We just heard from Rob. Please pray that the output of Sebastian’s ventricals remains between 120 and 160 and that it does not drop below 100. This is very important. The next post will include information that would be good for you to read also.

11 am DC

2006-07-23T14:21:00.000-07:00

Little One's name is Sabastian. He has now been with us for 17 hours and we are thankful for every one of them. Susan has had a verse attached to her phone that says, "Then they will know that it was God..." This morning at our church our pastor spoke of the story of Gideon. When God continued to dwindle Gideon's forces until there were few in number, so that all would know that the victory was not from man, but could only be from God. We know that Sabatian's life has been a miracle...the working of god. May God continue to give him life and healing as so many problems arise. Right now they are changing out his little feeding tube....earlier they were doing a sonogram of his heart. Pray that he would be protected from Satan and danger, from physicall and emotional harm. That God would support his little life in His Almighty hands. Earlier Susan went to see Sabastian. She has prayed with him...he held her finger with his tiny hand. She sang "Jesus loves Sabastian" to him. The doctors continue to be amazed...they say he is a little fighter. He has a "fan club" of sorts cheering him on and many there that have had their hearts won over by him. Thank you all for your prayers. They are more important now than ever. These first 48 hours are so critical and difficult.

5:30 DC time

Posted by Liz

2006-07-23T07:22:00.000-07:00

As of this morning Little One is still in the NICU. He is undergoing an intricate proceedure to remove an air pocket from his lung. Things are still very touch and go. PLease pray for stamina for Rob and Susan. Recovery for Taylor. Wisdom and special skill for the doctors. Thank you for all of your prayers.

Posted by Liz

2006-07-22T23:41:00.001-07:00

He came out crying...pink, not blue...the doctors were all amazed....all eleven of them! Praise be to our Almighty God!! He has been rushed to the NICU. It is, of course, very touch and go. Please pray that he will adjust to the feeding tubes and breathing tubes.

"To you they cried and were not dissappointed!"

2006-07-22T23:36:00.000-07:00

Susan just heard from Rob. Little One has been born. He is alive... Rob said to give him a few minutes. We must wait.

In your good pleaseure, Lord, make Little One prosper....

2006-07-22T23:18:00.000-07:00

He is being born this very minute.....

"To you they cried and were not disappointed..."

2006-07-22T22:54:00.000-07:00

Taylor has developed an infection causing her and the baby's heartrates to be up. Susan is across the hall in Taylor's hospital room with Luke. Please pray for endurance as the night continues. Pray that fatigue will not overcome anyone...that they will all rely on God for their strength.

Posted by Liz

2006-07-22T21:13:00.001-07:00

Rob called at about 10 pm to say that it is time. As we know there is a time for every purpose under heaven. God has known from the beginning the exact moment of Little One's birth and even now holds that sweet, dearly loved baby in His Almighty and powerful hands. Please pray for Susan's safe travel as she drives in the rain to the hospital in this hour. Pray strength and peace for Rob, Taylor, and Luke. Pray that the doctors have wisdom in every moment of this delivery and that the NICU people would be the perfect ones for Little One's situation. Pray that all would be amazed at the obvious movement of God's hand working in this situation and that hope would not fail nor faith falter at this hour.

"They cried to you and were saved; in you they trusted and were not disaapointed"
Psalm 22:5

Posted by Liz

2006-07-22T17:26:00.000-07:00

Just talked to Rob and the contractions continue – I don’t know any details. He is the hotel with Luke. I plan to stay here unless he calls and I am planning to go to church in the morning, then to Baltimore.......this could go on for hours or days or it could stop...as always only God knows....Thanks for your continuing prayers.

2006-07-22T10:25:00.000-07:00

Rob just called and Taylor started having some contractions this morning. They have given her something which has stopped them for now.

“They cried to You and were saved; in you they trusted and were not disappointed.” Psalm 22:5

2006-07-22T09:37:00.000-07:00

All appears to be the same. Their doc, who is out of town, plans to see Taylor August 1. Unless things change (which of course they can at any minute) they will decide on delivery then. I returned from Baltimore last night and am at their house in DC while Rob and Luke are there with Taylor and Little One. I will go back tomorrow so Rob can come into DC to work. I find it difficult to post updates while in Baltimore… please pray for us.

As we draw nearer to Little One’s birth, our looking to our God must become even more constant for without Him will we surely fall. Today’s prayer in Luke’s little devotional book is good for us all right now. ‘Lord, please help me not to fall, for You can help me most of all.”

Sitting in Taylor’s hospital room, watching Luke play with the train set his Daddy bought him, listening to Little One’s heart beat so strongly, I find it so hard to imagine anything but joy to follow in the days to come. Seeing and hearing adorable newborns all around makes us long even more for Little One’s lungs to fill with air so his newborn cries will join the chorus of these others.

Rob’s brother in Houston and his family are currently packing up to move from Texas to North Carolina- they plan to spend a few nights at our home in Memphis on their way. My NC sister is in Memphis now with our parents – her daughters will come there to visit next weekend.

Our daughter Liz and her eleven-month old Libby plan to come to DC from Memphis next Saturday for a few days. It will be so very good to see them……..my husband plans to come when we know the date of delivery

I have beautiful hymns playing on my computer as I write this. They bring such peace and joy and hope. One of Taylor’s favorites is “ Lo, He comes in clouds descending.” It is about Christ’s return and below is the last verse. I can almost hear her beautiful sweet voice singing the words………..

View Him smiling, now determin’d,Ev’ry Evil to destroy!All the nations now shall sing him,Songs of everlasting Joy!O come quickly! Allelujah! Come Lord, come!

Now one of my favorites has begun…

Let all mortal flesh keep silence,And with fear and trembling stand;Ponder nothing earthly minded,For with blessing in His hand,Christ our God to earth descendeth,Our full homage to demand.
Rank on rank the host of heavenSpreads its vanguard on the way,As the Light of light descendethFrom the realms of endless day,That the powers of hell may vanishAs the darkness clears away.
At His feet the six wingèd seraph,Cherubim with sleepless eye,Veil their faces to the presence,As with ceaseless voice they cry:Alleluia, AlleluiaAlleluia, Lord Most High!

Little One is God’s creation. God loves him far more than all of us together could ever possibly love him. He is the One Who makes that little heart beat so strongly. He is our Lord…the One who gives and the One who takes away.

But most of all He is the God of Hope.

As “Amazing Grace” familiar to all of us plays now….

Through many dangers, toils and snares, I have already come; Tis grace hath brought me safe thus far, and grace will lead me home.
When we’ve been there ten thousand years, bright shining as the sun, we’ve no less days to sing God’s praise than when we’d first begun.

So for now, we humbly wait for our merciful Lord. Please continue to pray for us all.

Let all mortal flesh keep silence,And with fear and trembling stand;Ponder nothing earthly minded,For with blessing in His hand,Christ our God to earth descendeth,Our full homage to demand.

Thank you.....

2006-07-19T06:53:00.000-07:00

I write stories many weeks...below is this weeks ...please pray for us as you feel led....

I am headed to Baltimore so rob can come in to work...will likely be there wed and Thurs nites...will try to post if I can..........

Code Red
July 19, 2006

Taylor is in the hospital at Johns Hopkins and has been since Friday and will be until Little One is born. Rob has a room at a nearby hotel so he can work.

Yesterday was a day! The men came to install the carpet in the basement. They were installing carpet because the DC floods a few weeks ago caused the previous carpet to be drenched, moldy and eventually removed leaving a concrete floor which the current tenant has not found to her liking. Surprise, right?

Rob got a kitty when he first moved to DC over ten years ago. She is loyal to him and to Taylor and is not particularly fond of anyone else. Skittish is probably a good word to describe her. The workmen had been told to be careful of this kitty, to be sure she did not escape.

Well the door was left open and the kitty was not to be found. I wandered the neighborhood in 100 degree temps looking for her. Rob and Walter (the workman) had a bit of a run in over the situation. I felt caught in the middle. Rob decided to come back to DC because of the situation, so he left the hospital.

Soon the cat was found. I called Rob.

He said he could not return to the hospital because there was a Code Red and all entrances were blocked.

The danger of fire lurked about. No one was allowed in or out.

There have been so many situations like that since we have found out about Little One that you would think we would get it.

These situations have not just occurred with Rob and Taylor, but also with Jon and Allie, and with Liz and Clay, and with Mick and me.

Just yesterday Jon told me that he and Allie have painted several rooms of their house the boring realtor beige they were told to paint it, so it would sell more quickly since he is supposed to start work at UNC in two weeks. A small scratch was on one of the walls and Jon got a cloth to wipe the scratch off. The paint came with it. He tried another area…same thing. The paint simply washed off! What is that!

Of course trying to do all of this with their five year old and a three year old is a task in and of itself.

But I have not yet learned to clone myself so I can be there to help as well. As even Jon said Little One’s life and the activities surrounding it take precedence over everything right now.

Today is Jon’s and Allie’s anniversary….happy anniversary!!

I was talking to Liz last night and she said that for weeks their house always has three or four flies in it. Even if she kills three or four, there are still three or four just waiting. A few weeks ago it was ants. Three year old Nathan would bring his mommy reports of other ant findings so she could do her thing and destroy them.

I won’t bother you with the details of Mick’s and my situations, but suffice it to say we had to call the police on a tenant at a house we rent out because he got drunk and started destroying walls.

But that is just one little story from each of our four families. And keep in mind they are the little stories. There are innumerable little stories and a few big ones as well.

Yesterday as I drove to their home after being at the hospital in Baltimore, I was listening to a classical music radio station. As I pulled in, all of the sudden this one beautifully orchestrated piece began to register with me as one I know. I began to sing the words that I remembered…

“…still that ancient foe doth seek to work us woe…his power and might are great….and armed with cruel hate…on earth is not his equal…”

Although it is a most familiar hymn, it took a moment for me to remember it as Luther’s “A Mighty Fortress is Our God’…

As the orchestra played on, I remembered another phrase….”one mighty blow shall fell him…”

I am sitting at Rob’s and Taylor’s house and will be heading back to Baltimore shortly. Luke spent the night with his Daddy.

There are many jokes about the red suited devil. But he is out there. He does seek to destroy. He is not a myth. He is real.

Since March I have had no doubt his hand has been at work in the life of Little One. Maybe Little One is the next Billy Graham. Only the Lord knows. But I do know one blow from my God can fell him!

2006-07-18T17:41:00.000-07:00

It is a little after eight Tuesday night and I have been given the night off. Taylor is in the hospital and Rob took Luke down to the inner harbor for dinner, then back to his hotel room. I drove back to DC, stopped and bought a few essentials and returned to the house.

So often when I have been in other difficult times, so many other things just seem to prevent me from being able to think much about the difficult time. For instance today Rob’s and Taylor’s beloved cat got out when the workmen were here to lay the basement carpet that has been missing since the flood a few of weeks ago. Even right now I am trying to write this and their dog is whining from her kennel. We prayed and Kitty was found. And the dog is quiet for a moment.

But in many ways those distractions are so very helpful. They keep you from thinking.

Yesterday Taylor lay with the heart monitor attached to her belly and we all listened to Little One’s perfect heartbeat….doing just what a little heart is supposed to do. Today Taylor was talking to her Mom on the phone and said that Little One was kicking at that very moment.

The men come to repair the plaster ceiling tomorrow from the new central air unit that leaked into their master bedroom from the attic a few weeks ago. The people who were to mulch the yard must have gotten too hot with the record highs the whole country seems to be having. So I guess they will be back. The lady who cleans the house should come too. The nanny will come late to keep Luke who will not be here. But she can instruct the workers who will be here while I drive back to Baltimore with mail and other things.

Then I suppose I will return to DC with Luke tomorrow night.

For now we wait…….. and cherish the moments we hear Little One’s heart beat so very normally…… and of hearing Taylor say he is moving about.

They cried to You and were saved; in You they trusted and were not disappointed.

2006-07-16T18:15:00.000-07:00

Luke and I went to church this morning and sang “Amazing Grace.” Then we packed up a bunch of things and drove to Baltimore where we spent the day. We have returned and he has just had his bath and gone to bed, hopefully for a bit. He will likely wake up within an hour or so and come into bed with me. Although he wiggles, it is nice to have him nearby.

Rob and Taylor seem as well as can be expected. As long as there is no more bleeding, it seems the docs will let them wait. So they will remain in the hospital until delivery which could come at anytime.

After Luke played with toys in the room for a while and entertained his Mommy, he, Rob, and I went down to the inner harbor and ate some chicken fast food and walked over to Best Buy so he could buy a small refrigerator for her room. Rob has gotten a hotel room nearby so he can go there during the day to work.

It is now about 9PM Sunday night. It seems so odd not to have Taylor down the hall, not to have meals to prepare, laundry to do, snacks to bring her, errands to run, so odd not to have Rob downstairs working or busy doing something.

For this moment things are a strange quiet…..

2006-07-15T14:37:00.000-07:00

Rob asked for specific prayers that there will be no further complications for Taylor or Little One, that they can delay delivery, and that Little One will truly be God’s miracle Little One born completely healthy with functioning lungs. Thank you.

2006-07-15T14:24:00.000-07:00

515pm DC time

Rob called earlier and said the doc wants to take Little One. The NICU people are saying they have never seen a baby live who has gone without fluid so long. It seems this morning’s call indicated delivery might be soon.

Calls were made, emails were sent. People began praying and things seem to have changed once more. The bleeding has stopped. Rob says he and Taylor have decided to wait for now. It is a moment to moment decision. I asked why they were waiting. He said he was not sure. Our most gracious and merciful Lord tells us to call out to Him and He will hear us.

Our verse for Little One this entire time has been Psalm 22:5
They cried to You and were saved; in You they trusted and were not disappointed

2006-07-15T10:31:00.000-07:00

As of now unless things change they will not yet take Little One yet. PhD son Jon is sending some research he had found earlier to a doc at Hopkins. Please pray docs will have God's wisdom. Hubby Mick just scheduled flight to come tonite but will wait for further word. Please join us in thanking God for His faithfulness

2006-07-15T08:47:00.000-07:00

The docs have decided to keep Taylor at the hospital.

They are meeting with NICU docs to see when is the best time to induce.

It could be as early as today. Thank you for your continuing prayers.

I am with Rob and Tyalor’s 20 month old Luke. This morning’s children’s devotional is entitled “Help with Problems”. Ther is a pic of two little kiddos with a big doggie in a wagon. One kiddo is pulling the wagon, the other is pushing it.

“Oh, no! Parker and jack have a big problem! They are trying to help move the dog, but he’s too heavy. Even when we try to help others we can still have problems, we can still have problems. Even if we learn a lot about Jesus, we can still have problems. God never said that we won’t have problems. But He does promise to help us when we do.”

The verse is …we may have many problems, but the Lord will solve them all.

The prayer is, “Lord, thank you that you will help me today if problems or troubles come my way.”

2006-07-15T04:43:00.000-07:00

They have decided to admit Taylor and keep her for at least a few days. The bleeding has slowed down but has not stopped. Please pray they will receive wise counsel. Their wonderful doc is out of town and is most difficult to be reached. Rob has sent her a text message in hopes she will get it. There is one other doc very familiar with Taylor’s situation. Thanks so much for your continuing prayers and support.

2006-07-14T18:44:00.000-07:00

It is 9PM and Rob and Taylor are on their way to the hospital once more. Problems began around 6:30PM. Their normal doc is out of town and the one they have been told to call said to come on in.

If you have the Streams in the Desert devotional, the July 15 entry is most appropriate for tonight – ( I “accidentally” read the wrong day.) If you don’t have it, the verse is, “This is the victory that overcometh the world, even our faith.”

This is the third time my children have driven the over an hour drive to Hopkins in almost as many weeks. Each time they go, I relive the Friday night Rob was out of town and the docs wanted to take Little One.

The devotional goes on…..“To trust in spite of the look of being forsaken; to keep crying out into the vast, whence comes no returning voice, and where seems no hearing; to see the machinery of the world pauselessly grinding on as if self-moved, caring for no life, nor shifting a hairbreadth for all entreaty, and yet believe that God is awake and utterly loving; to desire nothing but what comes meant for us from His hand; to wait patiently, ready to die of hunger, fearing only lest faith should fail – such is the victory that overcometh the world, such is faith indeed.”

My prayer is that our Lord might give us all that kind of faith…that kind of trust….

They cried to You and were saved; in You they trusted and were not disappointed.

2006-07-14T11:23:00.000-07:00

Here we are at week 32!

Just a few weeks ago on a Friday night Taylor and I were at the hospital and the docs were ready to take Little One...... yet our Lord truly and miraculously saved him!

My quiet time this morning was about the disciples wondering if the Lord was not concerned that they might drown because of the horrible storm that surrounded them and He was asleep! When He told the waves to be quiet and when He rebuked the wind, the disciples were terrified!

"Who is this? Even the wind and the waves obey Him!"

2006-07-12T08:01:00.000-07:00

Some of you have asked about the delivery date and right now we don't know.

They will have several appointments over the next weeks and right now the doc is saying they will decide on August 1.

If they wait until week 36 that could be Aug 11 or the week of Aug 14.

I am sure God knows when it will be...........

2006-07-11T11:35:00.000-07:00

Rob, Taylor and Little One left Luke and me to go to Hopkins early this morning for their 7:30am appointment.

After the nanny came to stay with Luke, I went down and sat by the river to be alone with God.

I felt I should write or something, because I always do. But there were no words and a pesky fly would not leave me alone. I wrote a sentence or two, tried to sketch a pic of the beautiful scene I was so blessed to be seeing.

Then I just wrote….”trusting you, Lord…”

About noon Rob called and excitedly said they were home and had the best appointment ever. I talked with both of them…..more details. Seems Little One has grown! All measurements are now consistent with 31 weeks! No longer is he is the bottom 3%. Taylor said even the doc seems excited! So the good news.

Then the other haunting concern. They explained that swallowing the seeming missing amniotic fluid stimulates tissue to produce necessary capillaries, which do not continue to grow after birth. The docs saw lung tissue, but cannot tell if the lungs are mature.

Taylor has a fairly bad sounding cough and they told her to begin an expectorant.

We do praise our heavenly Father for today’s good report and we continue to pray without ceasing for the miracle of Little One and the health of this little family.

They cried to You and were saved, in You they trusted and were not disappointed.

2006-07-10T13:27:00.000-07:00

There is a group of women who are in a situation similar to ours where there is little or no amniotic fluid. Daily we share stories and concerns. Below is a recent one followed by my response. I share it because I believe it will help you better understand the situation.

Hi All,

Well I was kinda hoping that mine would be one of those miracle stories, however it wasn't meant to be....I went into labour in the early hours of wednesday 5th July (at 37 weeks exactly) - and delivered a beautiful baby boy who we named Ben by c section at 10am.

Unfortunately he had pulmonary hypoplasia and they couln't get oxygen into him, he died very shortly after birth.He weighed 7lb 15 oz and was perfect in every way, except his lungs didn't work.

He looked just like his big brothers and when I held in him my arms he just looked like he was asleep. I held him in my arms for the rest of the day and I cherish that time so much (this is something I am so glad I did).

I sat and kissed him, cuddled him and stroked him and studied him so much so that I can see him now when I shut my eyes. He was lovely.I thought I could imagine how this would feel, however there is no way I could of imagined the pain I feel right now. My heart goes out to anyone who has gone through this or will go through this.

Dear

I have read and reread your email and the outpouring of love and concern from these wonderfully supportive ladies.

Thank you so much for sharing the beautiful story of Ben. I am sure there are more people than you can imagine who are so full of sorrow for you and with you…. more than you can imagine who are praying for you….all of us wishing we could give you more than cyber hugs.

As a grandma living this day to day with my son and daughter in law, living in their house, going through the challenges of now 73 days of bedrest for Mommy, and Daddy trying to work and be a husband, having a delightful 20 month old who keeps us so often from going into the doldrums, I remain hopeful for a miracle from God as you did. Taylor has had no measurable fluid the docs can see the since week 12 when she only had a three.

We are now at week 31 waiting for delivery at week 34 or 36.

Once again I say thank you for sharing your story of Ben. Although I cannot imagine his face as you can, I imagine the picture of the two of you and it is a beautiful picture.

Regardless of what God’s plan is for our Little One, I will hold onto words like those of the hymn we sang at church yesterday. May such words help you too.

How firm a foundation, ye saints of the Lord,
Is laid for your faith in His excellent word!
What more can He say than to you He hath said,
To you that for refuge to Jesus have fled?

“Fear not, I am with thee; O be not dismayed!
For I am thy God, and will give thee aid;
I’ll strengthen help thee, and cause thee to stand,
Upheld by My righteous omnipotent hand.”

“When through fiery trials thy pathway shall lie,
my grace all-sufficient shall be thy supply;
the flame shall not hurt thee; I only design
thy dross to consume, and thy gold to refine”

The soul that to Jesus hath fled for repose,
I will not, I will not desert to its foes;
That soul, though all hell shall endeavor to shake,
I’ll never, no, never, no, never forsake.”

As a woman who has lived a lot of years and has seen her son go through many trials, this is truly one beyond my wildest imaginings. At first the pain of what seemed inevitable was unbearable. To see your child in such anguish is unbearable without God.

Now it is as if God has actually taken this burden onto Himself.

One thing keeps striking me too. If it is His purpose to take Little One to Himself at birth, then I know we have not lost Little One because we know where he will be.

An older, wiser friend also told me to know in my heart and mind that Little One will either live here or with God, for no matter what he lives.

So it is with Ben. He lives.

And we will see him again. For we grieve, but not without hope. May you feel God’s everlasting arms beneath you as He sustains you.

Please forgive my lengthy email, but you have been on my heart so much and I wanted to give you words to comfort you, in addition to the prayers I lift up for you and your family.

May you know His comfort and peace today and always,
Susan

....

2006-07-07T19:02:00.000-07:00

Tonight Rob and Taylor returned from their emergency rush to the hospital this morning and all seems well. The doc said they may even wait to deliver Little One at 36 weeks which would be Daddy’s birthday, August 11!

This afternoon I read these words in my Bible, “Jesus was troubled in spirit.” It was so comforting to be reminded that even our omniscient Lord could be troubled in spirit.

I read on to where He told His disciples, “Do not let your hearts be troubled. Trust in God; trust also in Me.” Four months ago when we first began to realize the situation with Little One, God encouraged me not to be troubled, but to trust Him.

Isn’t it amazing that in one verse He is described as troubled in spirit and in just a few verses later, He is telling His disciples not to let their hearts be troubled? As Taylor said tonight, He was truly man….

2006-07-07T11:34:00.000-07:00

July 7, 2006

This morning Taylor was rushed to the hospital once again due to complications. I spent much time in prayer and during that time God showed me this verse: "Like cold water to a weary soul is good news from a distant land." Proverbs 25:25 So, I waited for that cool water. A couple of hours later came the call that mommy and baby were fine. Thanks be to God! They will most likely keep Taylor overnite, but she should come home tommorow. Please pray that there will be no further complications and that Taylor and baby will make it to the induction date on July 28th. Also pray that there will be no further disruptions at home and that the next few weeks will be calm...without workmen, storms, flooding, or other added stresses.

posted by Liz

2006-07-06T10:35:00.000-07:00

Just want you to know all continues to go well with Little One and his family. I am in DC and long for the day I can return home and do as my verse this morning instructed, "Return home and tell how much God has done for you." We continue to pray for another of His miracles and thank you for joining us in that prayer.

2006-07-01T07:55:00.000-07:00

But say the word and my servant will be healed Luke 7:7 Jesus said, " I tell you, I have not found such great faith even in Israel." Luke 7:9

(Note: The centurion seeking to have his servant healed illustrates his faith by a comparison taken from his own profession, and is confident that Christ can as easily command away the sickness of his servant as he can command any of his soldiers, can as easily send as angel with commission to cure this servant of his as he can send a soldier on an errand. Christ has a sovereign power over all the creatures and all their actions, and can change the course of nature as He pleases, can rectify its disorders and repair its decays in human bodies; for all power is given to Him....Matthew Henry)

Lord, may all Your people, including my loved ones and me, know that You need only say the word and Little One may be healed. May we have such great faith. In Your Name Amen

2006-06-30T06:49:00.000-07:00

Please continue to pray for the health of this entire little family, including Daddy Rob, who has had one doc appointment and two others lined up.
Please pray for a wonderful and relaxing weekend for the four of them as Rob is planning on taking some much deserved time off.
They have their next Doc appointment on Monday, so unless something changes I may not post again until then.
Thank you for your continuing emails of support and your faithful prayers to our Lord. Feel free to post comments on this site or to email. We do appreciate so much hearing from you.
Four weeks from today we pray to see God's miracle!

2006-06-29T07:50:00.000-07:00

I just spoke with Taylor and all is well. Little One is kicking a lot this morning. 66 days of bedrest so far and 28 to go, if delivery is actually July 28 as scheduled.
We spoke of how we continue to see God's hand in this in so many ways.
She has been able to work from home, but has had concern over using up her leave. Because of the DC floods her office is closed and no one is working and it looks like they will not for a month!
She and Rob were wondering about when to have the steroid shots to help Little One's lungs. Because she was admitted to the hospital Tuesday night, the docs decided to go ahead and give them.
God is constantly reminding us that He is in this most difficult situation.
Please continue your prayers for a miracle, for everyone's health and protection. Please pray our Almighty Lord will be glorified through this all.
Our verse remains the same...." They cried to You and were saved; in You they trusted and were not disappointed."

2006-06-28T19:23:00.000-07:00

I am sitting in the DC airport waiting for my flight, a most normal yet currently heart wrenching experience. Taylor came home from the hospital last night. She told me this morning that the NICU people did come to her room after I left yesterday. Her doctor had warned us that they would be coming. She told us to take their gloom and doom with a grain of salt. That is their job. But how do you do that? How does the jury disregard statements that are made?
They have no hope because of her situation. They tell the details of what heartbreaking things we might expect. I asked if they offered any hope. She said no.
I said we will have hope because our God tells us to.
I hope to return one week from today. Telling my son goodbye this morning… leaving Taylor lying in her bed….watching Luke and Keyla ( the nanny) wave goodbye from the front yard as my taxi pulled away…..pulls on my heart in a way I cannot put into words.

2006-06-27T19:27:00.000-07:00

It is about 10:30 pm DC time and Rob has gone to Hopkins to pick up Taylor. The docs are not super concerned about the bleeding since it has mostly stopped. But what a day it has been! Rob had one of the busiest days of his career today and has been tired, to say the least. I went to the hospital around 9:30 this morning and got back to their house around 4:30 pm. The highlight of my day was seeing Little One's face on the ultrasound. There are no words to express what I felt and I can only imagine what his mommy felt. We saw his tiny eyes, his nose, his hands, his legs....his little heart and tummy.....this miracle being woven together in his mommy's womb by our most amazing Lord and Creator!
The doc says best case scenario is Little One comes into this world crying with a few minor physical problems who will spend some time in the NICU. The worst case scenario is one born with weak lungs and a long drawn out effort to save a life that fails. BUT we are Christians and we trust our God....as the toddler devotional book I read to Luke says.... when you trust God you believe everything will be ok.

2006-06-26T20:31:00.000-07:00

Rob just called and they think all is ok, but are keeping her for a couple of days. She will get her first steroid shot tonight. Thanks for your continuing prayers to our most lovng Father.

2006-06-26T18:07:00.000-07:00

About 6pm tonight Taylor called from her bed for Rob. He looked at me and went upstairs, both of us knowing by the way she called she was not ok. He found she was bleeding and they called the doc who told them to come in. In the midst of the DC flooding, they drove to Hopkins.
It is hard to describe the past few days. They had central air put in which had to be installed in the attic above their bedroom. The unit began leaking thru their plaster ceiling so we have had AC men here almost everyday. Last night their basement began flooding. Many government buildings are closed. Luke had his 18 months shots at the doc today…not pleasant. I am trying to figure out how to clean sheets with no washer since it is in the basement.
The doc accidentally just called here thinking she was getting Rob’s cell phone…she said she had tried labor and delivery and there was no answer. I don’t know what that means…
But Luke is snug in his bed as the rain pours and the thunder crashes outside…and it all through our God reigns! They cried to you and were saved. In You they trusted and were not disappointed.

2006-06-23T10:43:00.000-07:00

Little One is now 29 weeks old and kicking away inside his Mommy Taylor. The due date of 34 weeks is now only six weeks away.Taylor is on bedrest and has been since April 18. She and Rob have been and continue to be remarkable!

Blood pressure of Mommy and heart rate of Little One are perfectly normal. His size is in the bottom 3%, but as one lady told us, "Little One may be little, but God is big!"

Since March 9 the docs see little or no amniotic fluid, which is essential for lung development. Rob and Taylor have tried amnioinfusion at Johns Hopkins, they have tried an amniopatch at NYU.Now, according to their wonderful group of perinatologists at Johns Hopkins we all hear that Little one has only a 5-10% chance of living once he is born. Yet we call on our merciful Lord:
"They cried to You and were saved; in you they trusted and were not disappointed."