Changes

Savannah went for her three month injection yesterday. It is hard to believe that she has made it so far, considering that she was not going to come home, according to the medical staff where she was born.

The last few weeks have been challenging, more so that all of our previous children, who were by comparison quite easy. She has been putting on weight thanks to a healthy appetite, which keeps us busy supplying her with about 120 ml of formulae milk every few hours - at last count she weighed about 3 kg. This after three months is still severely undersize; I remember how our boys doubled their weight in the first three months to nearly 7 kg's.

Just lately we have had some touch and go situations with Savannah, and as I write she had been stopping and starting breathing through the night. She suffers with something called Sleep Apnea, which is just that - she stops breathing for 10 seconds up to 2 minutes (that we know of). Then her body, which becomes limp in the process, losing colour and vitality, seems to jerk the lungs back into action again, and she gasps, or cries in pain, as breathing resumes.

It is quite terrible to watch, and one does not know what to do - shaking her or moving her seems to hasten the recovery, or prolong the attack, since the alternative is that she may not start breathing again. I was called at work last week at about 3 pm, to say that I should hurry home because the frequency of attacks had become severe and it was not certain that she would make it. Two faithful colleagues at work prayed fervently with me before I left, and Melanie said that she had prayed with our friend (a doctor) who had advised Melanie to call me home urgently. This seemed to stay the attack, which stopped after three hours or so.

We discussed the use of medicine to minimise the pain that she was obviously experiencing, as this type of controversial treatment has been researched in HIV/ AIDS infected infants who stop breathing or are struggling to breathe, instead of ventilation. When one sees your child's little face contort and go purple and pale, and hears her muffled gasping shriek as her lungs snatch some air, while her body contracts at every muscle, it seems the least that one can do to cause some abeyance to the suffering that is so clearly happening.

I wonder if brain damage is happening each time she stops breathing, and how much of what she is going through she can comprehend. One thing is plain - her cries of pain when she does recover from an attack are very real.

Last night Melanie called me to the bedroom, her face distressed, the fear in her eyes telling a tale that we had hoped not to hear . . . Savannah had stopped breathing and had not started again as she usually does. I picked her up, her body limp and discoloured in my arms, wondering if this would be the moment that I had dreaded yet expected. Fortunately she gasped, sucking in precious air into her oxygen starved lungs. Her breathing sounded like a rasping, grating effort, as if her lungs were sawing through the air as it came down the air pipe.

This continued until late into the night, until we could bear the shrieks and muffled gasp no longer, and put her into her cot, closing the door, to try and get some sleep, the stress induced fatigue overtaking us. Our prayer was that god would either take her during the night, or that she would recover from this episode, as she had always managed before.

Apparently she has a chest infection so she is breathing through porridge or syrup-like mucus, which just aggravates the situation, putting more strain on her already tired and aching body. She was examined early this morning by a doctor friend, who kindly offered to treat her at home, as our chosen alternative to rushing her into hospital again, where they would have to stick needles into her soft arms and stick tubes down into her stomach for feeding, and ventilate her. Apparently home based care is quite common overseas but is relatively unheard of in "terminally ill" patients here in good old SA.

She is sleeping now, after some new medical treatment to ease her suffering that we are trying as of the last prolonged episode of Apnea's. I do not know how long she will still be with us, our daughter of the open spaces, who for now seems confined to a body that is malfunctioning, misfiring, struggling and yet persevering.

Some scriptures that come to mind, by grace from our Father in my devotional this morning, if you are given to pray with us;

Psalm 77

For the director of music. For Jeduthun. Of Asaph. A psalm.

¹ I cried out to God for help;
I cried out to God to hear me.

² When I was in distress, I sought the Lord;
at night I stretched out untiring hands
and my soul refused to be comforted.

³ I remembered you, O God, and I groaned;
I mused, and my spirit grew faint.
Selah

⁴ You kept my eyes from closing;
I was too troubled to speak.

⁵ I thought about the former days,
the years of long ago;

⁶ I remembered my songs in the night.
My heart mused and my spirit inquired:

⁷ "Will the Lord reject forever?
Will he never show his favor again?

⁸ Has his unfailing love vanished forever?
Has his promise failed for all time?

⁹ Has God forgotten to be merciful?
Has he in anger withheld his compassion?"
Selah

¹⁰ Then I thought, "To this I will appeal:
the years of the right hand of the Most High."

¹¹ I will remember the deeds of the LORD;
yes, I will remember your miracles of long ago.

¹² I will meditate on all your works
and consider all your mighty deeds.

¹³ Your ways, O God, are holy.
What god is so great as our God?

¹⁴ You are the God who performs miracles;
you display your power among the peoples.

¹⁵ With your mighty arm you redeemed your people,
the descendants of Jacob and Joseph.
Selah

¹⁶ The waters saw you, O God,
the waters saw you and writhed;
the very depths were convulsed.

¹⁷ The clouds poured down water,
the skies resounded with thunder;
your arrows flashed back and forth.

¹⁸ Your thunder was heard in the whirlwind,
your lightning lit up the world;
the earth trembled and quaked.

¹⁹ Your path led through the sea,
your way through the mighty waters,
though your footprints were not seen.

²⁰ You led your people like a flock
by the hand of Moses and Aaron.

(higlights my own)

also;

Ask, Seek, Knock

⁷"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. ⁸For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.

⁹"Which of you, if his son asks for bread, will give him a stone? ¹⁰Or if he asks for a fish, will give him a snake? ¹¹If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him! ¹²So in everything, do to others what you would have them do to you, for this sums up the Law and the Prophets.

(higlights my own)

We pray that she will be comforted and at peace, without pain and suffering, and continue to trust for a complete , miraculous recovery and reversal of the current conditions and symptoms which seem to be getting worse.

Scriptures courtesy of BibleGateway.com

And rest some more . .  

I think I rest after all that hospital stuff . .  

The smallest prem clothes are a bit large for me.. 

Some hair showing now . . 

Lots of time to grow . . 

Still small . . . 

Look, no tubes or pipes! 

Savannah on arrival at home after 25 days in ICU. 

Day 25 - Home, sweet home!

Savannah came home for the first time today, about 4 pm this afternoon to be somewhat precise!

So today is cause for celebrations and rejoicing and thanks! First to our Father, second to all of you who have stood by us over the last 25 challenging days.

Surely we would not have withstood the pressures of life without the help that you gave in messages of encouragement, calls to faith and reality, telephone calls, meals delivered to our home every day since her arrival, counselling, having our boys to play, our moms who traveled from far to help us in our time of need, my Dad who got everyone in Escourt praying on our behalf, donations to our financial needs when our productivity fell away, baby sitting to relieve us for an evening here an there - those were life saving moments where we could escape the constant stress and anxiety that comes with a child in hospital with an untreatable condition. Your support made each day bearable.

Although our little princess is home at last, some battles have been won, others begin. So before we face those, I would like to reflect on the many answers to prayer that we have experienced...

Savannah
is still breathing...
still a beating heart
still feeding on milk, even
still drinking by cup and sometimes a bottle
still clear of that chest infection,
pneomonia they called it, I think
stopped losing weight, now
stil putting on weight slowly (most days)
still breathing...
still..

"Be still and know that I am God"

Mel too has been restored, having recovered well from the Caesar, and is driving and moving about freely. On to the next season, the home run time, home but not alone.

What comes next? We do not know. What future lies in stall for Savannah, only God can tell, and he has not told me yet. So we will do what we do know - how to love these little gifts from God while we have them, cherish each and every moment while the priviledge of being their earthly stewarts continues. We will also endeavour to restore some balance in our household - balance that has been destroyed over the last while.

A loving father once prayed over us that our children would fall into our slipstream and would not hinder us, nor distract us from what God has called us to, and God willing we will be able to do that now. We are not going to create a mini-hospital at home with machines and monitors and implement super hygiene, although we will still wash our hands when necessary, and will treat Savannah as one of the four Grant children, lest we favour her through the time that we spend with each one. They each deserve our best, and love, I think, is not diluted by how many we share it with, but people are diluted by the love that we do not share with them.

If only I could live that out in my own home all my loved ones would be whole and would feel equally loved.

I hope to show you some pic's soon of the girl of the "open field", as her name prophecies; free from pipes, drips, artificial ventilators and a hospital crib. As much as we apreciate what those things did in bringing her to this point, we prefer the home pleasures of pink blankets and long endulgences in Mothers arms.

Lastly, a special thanks to the wonderful staff at the Lower Umfolozi District War Memorial Hospital and the Empangeni Garden Clinic, who have delivered our baby to us, albeit after more days than we anticipated. I have a newfound respect and appreciation of these professional caregivers who work 12 hour shifts and more every day, responsible for life every moment.

Thank you all and may God bless you from His riches in Heaven!

Day Ten - Stable and stunned!

Savannah seems to have stabilised sufficiently for the oxygen supplementation to be reduced to a minimum of 1 litre per hour. If this trend continues Savannah should be able to have her nasal tubes removed, which will be far more comfortable.

She is now taking 25 ml of milk at every feed and we have discovered how to feed her without causing any distress, by feeding very slowly. It is quite an exercise, involving measuring out the volume of milk into a little cup, then withdrawing the stomache contents, incase there is any undigested liquid, then attaching the large syring into which the milk is poured, which then makes its way down into her tummy over 5 - 10 minutes.

The doctors aretelling us that she is likely to be diagnosed with a serious condition called Trisomy 18. We are still waiting for the test results to confirm the situation, but based on various features that can be seen in Savannah's body, such as her clasped fingers, the abnormal ear formation,, some gaps and ridges in her skull and a small opening between the chambers of her heart, the doctors have advised us to prepare ourselves for certain eventualities that are quite common in children with Trisomy.

What does this all mean?

Well - short of God's divine intervention, Savannah will not lead a normal life. She would be in and out of hospital due to immune system weaknesses, and would have various challenges related to feeding, and normal bodily functions. Basically she would not lead a normal life, but would need intensive or high care for life, which is said to be short lived, if she make it out of hiospital.

Progress;

* taking enough milk to stop IV feeding
* breathing has stabilised, although there is still some recession

Prayer points;

* continue to breathe
* stop wight loss (she las been losing for the last three days)
* adds weight (she needs to get up to 2 kg before she will be allowed to brestfeed)
* pneumonia will be overcome
* that she will recover and have a full, normal life.
* that the boys, Mel and rest of the family can cope with the situation

Thank you for all your sms's, calls, visits, meals, flowers and most of all, your earnest prayers.

She wakes up sometimes when we visit, and seems to be able to follow our movements and responds to our voices (or smell)! 

A view of the nursery ward at the Lower Umfolozi Disctrict War Memorial Hospital that is home to Savannah. 

That patch of tape on her chest secures a monitor that regulates the heaters temperature according to her body temperature - it is set to 37.0 degrees celcius at the moment. 

We think that there is abit of ginger coming through her dark crop of hair. 

It is hot under the heater, so she normally sweats a bit. 

Look at that nappy to body ratio! 

She does have the odd grumble or spasm and then her whole body tenses up. 

Her nappy outsizes her substantially. 

Although she is full of pipes and needles, she looks quite comfortable generally. 

Weight loss has taken it's toll on her - she wieghed just 1,6 kg today. 

Savannah is being feb through a pipe in her mouth, up to 25 ml three hourly, which means that her IV feed will be stopped soon. 

Day Six - New challenges.

Savannah has been moved onto double oxygen, or ventilation, as her breathing is not improving. She has also developed a fever, probably associated with the infection that is plaguing her little frame.

It is quite concerning to see her take a turn for the worse, and I found myself weeping over her heaving chest tonight as I fed her milk through the tube that protrudes from her nostril, a permanent lifeline to her tummy. I sang "Thank you Lord for giving us food" and "Thank you Father", telling her that Declan would have insisted that we do that one too, if he were present. After that some childrens songs seemed apropriate, so out came;

"Jesus loves the little children, all the children of the world, red and yellow, black and white, they are precious in His sight, Jesus love the little children of the world" and

"Jesus loves you, Jesus loves you, this I know, this I know. For the bible tells me so."

I was compelled to read Psalm 139 over her again, and faltered at the verse that says,

"All the days ordained for me were written in your book before one of them came to be."

as my fears that her days may be numbered to less than I would like to spend with her returned. I cannot bear the thought of losing her, even though she sems to be in much pain and discomfort. I have been hoping and praying that she will live a full life, not that she will just survive, but the fear of what the future may bring always threatens to come into the room of my mind when I opened that door slightly.

Thank you to everyone who is standing together with us in faith for her survival and more than that; "life and life abundantly". Let us continue to trust for her speedy recovery, especially that she will overcome the infection in her sore chest. She is now taking 10 ml of breastmilk every three hours, along with the antibiotics and vitimins being sent down her lifeline.

The staff are really wonderful, a team of caring nurses and sisters who are attentive to every childs condition, led by a dedicated and skilled pediatrician, Dr Kaponga. Please pray blessings over them as they are responsible for the many lives that hang in the balance daily.

I hope to bring you a more encouraging report tomorrow - Savanah is firmly in His hands and who better could one entrust a daughter to?

Progress today;

* continued to take milk nasally
* still passing stools and urine
* digesting more of her fod and meds

Prayer points;

* continue to breathe
* digest milk and medicine (she only managed to take in 6 ml of the 10 ml given)
* maintains and adds weight (she needs to get up to 2 kg before she will be allowed to brestfeed)
* pneumonia will be overcome
* that she will recover and have a full, normal life.

Thanks and love.

Day Five - Believable!

I am grateful and assured as I write this latest update on the fate of my daughter. The Lord has shown his strength in our weakness over the last few days, as we have truly been sustained by His grace, made real through many of you who have arrived with bags of food, sweet lemon meringue tart, comfort and counselling, even a digital camera so that we can record Savannah's progress and share some pic's with you.

I only wish that we could share the few movie's that we have made at every visit, monitoring her breathing and the slight improvements that we cling to like promises fulfilled. We prayed that the staff would feed her overnight so that we could have a break from the three hourly feeds, and they did. We prayed that she would continue to breathe, and she is. We prayed that she would start to take breastmilk, and she has took milk for the first time last night by nasal tube.

Progress yesterday;

* breathing has improved slightly
* started taking breastmilk by nasal tube
* still alive!

Progress today;

* continued to take milk nasally
* doctor reported that she is stable

Prayer points;

* continue to breathe
* digest milk and medicine (she only managed to take in 6 ml of the 10 ml given)
* maintains and adds weight (she needs to get up to 2 kg before she will be allowed to brestfeed)
* pneumonia will be overcome

Please feel free to post any comments of encouragement on the site (juct click on the comments link).

Thank you for all the messages of encouragement and support - I am sorry that I have not replied to each one, but we are just managing to maintain with the regular visits and the boys at home. Both of our moms came on the day of her birth and are able to stay until next Saturday - what a blessing!

Day Three - Praises!

Savannah has made remarkable progress overnight and through the day today. She was wide awake tonight and held onto my fingertip quite firmly, eyes wide open and almost focused on my every move. She managed to turn her head from the side to an upright position a few times and lifted both of her arms at different times.

All this for a child that was given a 30% chance of survival on arrival.

Progress yesterday;

• sustaining breathing without ventilation
• still alive!

Progress today;

• passing urine and stools
• moving arms and head
• aware of touch and movement
• crying (pressumably for food)

Prayer points;

• continue to breathe
• be cleared to start receiving expresses milk
• maintains and adds weight
• healing for Mel to manage four hourly visits from home

Mel is now at home, after attempting a night in the hospital, but we felt it would be better for her to recover first before she starts the three - five daily visits to ICU to feed.

Thank you to everyone for your support, flowers, cards, calls, sms's and offers to help with meals and minding the boys, who ask where their sister is every time we return from a visit and cannot understand why children are not allowed into ICU to meet their sister.

Neil helped us to make a short video of Savannah last night, so I am going to play it for the boys tomorrow when they wake up, so they can see their little sister for the first time.

Join with us as we " . fight the good fight, finish the race, keep the faith.. (2 Tim 4:5)

We sing Psalm 100 over you Savannah;

"Shout for joy to the Lord, all the earth.
Worship the Lord with gladness;
come before him with joyful songs.

Know that the Lord is God.
It is he who made us, and we are his;
we are his people, the sheep of his pasture.

Enter his gates with thanksgiving
and his courts with praise;
give thanks to him and praise his name.

For the Lord is good and his love endures forever;
his faithfullness continues through all generations." (NIV)

Much love

Sean & Mel

Day Two - Help!

Dear Friends

There have been so many calls and messages that we have not been able to respond to that I thought that I could mail you with an update for anyone who has not had a reply - I just cannot keep up with the messages and calls.

We had a baby girl, named Savannah Grant.

Weighing in at a whole 1,73 kg, she was delivered 9.12 am on 14.06.05 (yesterday) by emergency Caesar after fetal distress. She has been transferred to ICU at the NPA hospital after birth at Garden Clinic. She is struggling to breath, fighting pneumonia. Her ears are not properly formed and her hands are not fully opened and there is some sign of a cleft palette.

- Please pray that God will intervene and "that he who began a good work in you will carry it on to completion until the day of Jesus Christ". (Ph 1.6)

- We agree to believe for Savannah that

"you created my innermost being; you knit me together in my mothers womb. I praise you because you are fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be." (Ps. 139)

Mel held her for the first time tonight - she is really battling - she needs faith to hope for Savannah's survival (less than 30% chance over the first 24 hours they said - well we have overcome that statistic!) Mel must be with Savannah every three hours but may only stay for one hour.
- please pray that she will recover from the Caesar soon and for strength for her to make the trip from her ward to the nursery every four hours.
- pray that Savannah will continue to breathe and overcome the pneumonia that she is fighting
- pray that she will put on weight and that she will start to feed soon!


Thanks to everyone. You have all been so wonderful and we are privileged to have you "fighting the good fight of faith" with us for this daughter of God.

Love

Sean and Mel