Time is Marching On

The pace of life at GLA does not compare to the frenetic environment of a general Paediatric ward. Yet somehow, three weeks have passed since I last blogged, or journalled.

There have been trying times, but lets not dwell on those. Instead, let's take a look at the moments from which I have drawn my strength; those that have sustained me.

A few short days after I last posted, we were visited by Ti Mirak (our little miracle boy, Jonathon.) Jonathon came to us in May, after his Mother delivered him and his twin brother 8 weeks before her due-date. He was close to death on arrival, and stopped breathing a few days later.

Whenever we discharge a preemie, we tell their Mamas that if the little one becomes unwell during the first year of life, they may bring them back to GLA to be assessed. Jonathon's Mummy was at home in bed with a nasty cold. Jonathon had been feverish for three days and he arrived here with two Aunties and an uncle.

Jonathon was thoroughly examined. He was bright and alert, if a little bit miserable. He was feeding well and didn't have any diarrhoea or vomiting. There were no signs of infection in his chest but his throat and ears were a little bit red.I prescribed paracetamol syrup(Tylenol)and an antibiotic.


At Five and a half months, Jonathon weighs in at over 12 lb. That is quite good for a Haitian baby and it is fantastic for one that was born over 2 months premature! Mme Bernard advised the family that they could start offering Jonathon some weaning foods. His Aunties were horrified.
'No!' one exclaimed!' He isn't 6 months old yet!' We counselled his mother to breast-feed Jonathon exclusively for the first 6 months of his life so that he would have the best chance of survival. Apparently, Jonathon's family are following this advice very carefully! It was encouraging to see Jonathon thriving and so well loved and cared for!

After 11 days, Ti Fi was finally able to breath without supplemental oxygen. She health remains unstable but she continues to make great strides in her development. She is now able to roll from her front to her back and vice-versa. She can shuffle across the floor when she is sitting and she scoots backwards when she is lying on her belly. Last week, I found her underneath her crib!



Two week ago today, I was called to the waiting area to assess a preemie, who had arrived with his Daddy. Lyovens was born around 6 weeks early and we found him to be very tiny for his age (just 3lb 3oz). He is a beautiful boy. He was well wrapped up but cold . He had been born 3 days earlier and hadn't received a single drop of fluid. He had a good, strong cry and I felt hopeful, if in a cautious way that he might live. I'd had a tough week, and Lyovens arrival coincided with a bi-monthy volunteer and staff outing. I wouldn't be able to go, but it didn't matter. Suddenly, I was re-energised. It felt as though God was smiling down on me.

Many of our parents are very afraid of their premature babies, and the things that we do (medically) to sustain them. Lyoven's family however, are very laid back about it all. His Father told me that GLA previously helped Lyoven's older sister, who was also born premature. She is now 6 years old and in school!

Lyovens needed a feeding tube for the first week he was with us. I am pleased to report that he is now breast-feeding. He lost weight initially. We started him on just 5ml of milk, every two hours and gradually increased the volumes. Today, he weighs 3lb 7oz. He still needs to be in an incubator. The biggest risk factor for him is that he is so small for his age. That means he wasn't getting what he needed in the womb and is starting off at a disadvantage.

Yet if there were no difficulty in his life, there would be no scope for a miracle.

A Cup of Water

Monday: We are all up on the third floor balcony. 'We' being (close to)100 babies, 20 nannies, 3 nurses, and a handful of volunteers. Absolute madness! Little bodies darting everywhere. Into everything, pulling, tugging, pushing, bumping and crashing. The Haitian ladies sit in the shaded areas, oblivious to the chaos, seeming unperturbed the cacophony. But then, the atmosphere up here is only a little bit crazier than the big nursery.

1pm: It is after lunch. 'These babies need to sleep,' I declare. My Haitian colleague looks at me disbelievingly. 'These children will not sleep.'

An hour later, I am sitting amongst a sea of sleeping tots. I have single handedly managed to settle all but three of the toddling babies. Everyone is glad. Looking around, I sigh. Each tiny girl and boy has their unique quirks. Some have been rocked to sleep, others have had their backs rubbed or their bottoms patted. Some have fought nap-time. Others were out within seconds. One little man is holding his ear. Another has his hand inside his nappy. Oh Oh!

Seriously though; they are all so different and special. I have been hot, tired and irritable, but watching all these little chests rise and fall I am suddenly overcome with feelings of warmth and tenderness.

Tuesday is weigh-in day. The numbers aren't good. Overnight, we have been hit by an epidemic of diarrhoea. and vomiting. A few children are looking quite dehydrated. All are in need of pedialyte (oral rehydration solution). Some cannot keep down even sips of fluid. They need injections of anti-emetics to help with the vomiting. Amazingly no-one needs IV fluids.

Wednesday: We are still in the throws of the epidemic. We have also had an outbreak of hepatitis among the grown-up's at the orphanage. Some of the newer children have tested positive and many others have been having mysterious fevers, and symptoms of possible hepatitis infection. All of them need to have blood drawn drawn. It is a major operation. Lollipops are placed in mouths. With a few notable exceptions, there is very little crying or flailing.

Thursday: Ti Fi went back to the NICU at the end of last week. Many of the babies have colds but she has developed a high fever and we cannot get it down. She had a chest x-ray a few days ago. it showed a pneumonia. Ti Fi was started on an antibiotic last night, but she has deteriorated overnight. She needs oxygen. She is fractious and looks at me pleadingly. I pick her up. She burns in my arms. She is panting and I can feel her heart hammering under my palm. The monitor reports a heart rate of 210 per minute. I get 208!

Ti Fi is so fragile and we are concerned that her little body will tire. Our paediatrician does not think that she can keep up this level of effort for long. She is seriously ill but although I desperately wish I could take away the hacking cough and the raging fever, and although I am anxious for my Ti Fi, I have an inexplicable peace that she can overcome this.

Late morning: I am asked to go to see a premature baby. His Aunts have brought him here. I learn that he was born in Delma (close to Port-au-Prince) earlier today. It is immediately obvious that it is too late. He is is waxen and very still, but oh so, beautiful. The sorrow I feel is strangely sharp.

I have been thinking lately, that I am in danger of shutting down emotionally. Now, a still, small voice whispers in my subconcsious that I am not to harden my heart. I cannot fullfill his commission if I do that.

Friday: I am in my room, and I hear Ti Fi's oxygen machine bleeping. Stepping outside, looking up at the NICU, I see that the first floor of the Main House is in darkness. The generator has failed. There is no power to light the house or drive the oxygen concentrator.

I rush up to the NICU to find Ti Fi struggling to breathe. By the light of a cellphone, I see that she is blue. The Pulse oximeter tells us that her transcutaneous oxygen saturation is 73%. That is life threatening!

The power comes and goes. I hastily gather together a bag of emergency supplies. It has been decided that Ti Fi and I will spend the night at the toddler house (about a mile up the mountain). They are not set up to deal with very sick children, but at least they have a more reliable power source than we do.

3am: after a rough night, Ti Fi and I finally catch some sleep. The IV has become dislodged and is out and my little lady remains feverish. She has a spasmodic cough and is constantly reaching for me.

I have missed her so much since I returned her to the NICU last week. I am glad to have this chance to love her through her sickness.

I wake just after sunrise, and am rewarded by a tiny smile from Ti Fi. Sometimes, I think, it is the little things that make the greatest difference in the lives of my babies. To be touched, to be held....

Shortly after lunchtime, we are heading back to the main house. Everyone at Kay B (the toddler house) has been so gracious but I am overwhelmed by relief to be headed back to the main orphanage building, and to have some medical back-up again.

The rest of the weekend: don't ask because I don't know. I got all of two hours sleep on Friday night, and was unable to nap when I got back to my own bed the next day.

One thing I do remember: being slightly thirsty, and desperately tired, and not having water in my room or the energy to go and get some. I had been complaining to my room-mate, the night before, telling her how much I missed Scottish water. I absent-mindedly reached out my hand. I don't why, and I found a cup of water where there had been none. It was cold, clear and pure; just like the water at home. I know my God is near me!

Like Springtime

Ti Fi,

Ill-equipped though your grand-father was to raise a baby, he did not visit the magistrate for a full two months after your Manman died. Surely, his steps were leaden on the way to the court that day. There must have been some level of struggle in his mind, between the desire to hold fast to you, his tiny grand-daughter, and the need to give you up for your own sake. If there had not been such a struggle, why would he have waited?

You arrived at our home, sick and emaciated, parched in body, and with eyes that betrayed a heart, equally parched by grief. A beautiful flower, scorched and uprooted. That was you, Ti Fi. And so I planted you in the garden of my own heart.

There was no relief in her countenance. There were gentle hands to tend to her, there was treatment for her dehydration and there were medications for the fever and infections that wracked her little body. Still, she refused to feed, and was in a state of decline. She needed love, I knew, and an abundance of it. Dixie was in the States with Vivianne, a key member of the Haitian staff. I was tired with additional duties I had taken on, and yet, a still small voice urged me to open my arms and draw Ti Fi close. And that is how he ended up in my room.

Sure enough, within a matter of days Ti Fi smiled. They say that the best prognostic indicator (of survival) in a severely malnourished child is a smile. Here it was. Hope born in both our hearts.

As the days and weeks passed, I saw a rejuvenation in Ti Fi's spirit that spoke of the miracle of God's creation; the capacity of a child's heart to heal. New growth as in springtime. She began looking at the NICU nannies and nurses with wonder and she became very interested in toys and in her surroundings. Soon, she she found a voice. 'Ah haa haa' (the cutest giggle), Hi nah (a greeting), 'aaah' (to express her delight) and 'hey' (this one is to get our attention.)

Did I mention that she sings too?

She found the strength to sit unsupported, when, a few days before she couldn't even hold her head up. Within the month she was not only weight bearing on her legs but she was "climbing" from my lap to the top of my head, beaming and triumphant.

Yet love alone has not been enough to restore this precious girl's broken body. She has had an NG tube for 6 weeks now, much longer that I am comfortable with. It seems that Ti FI has health challenges, the extent of which we do not fully understand at this point. She becomes breathless when she sucks her bottle or eats from a spoon. Her heart races and she sweats. She is only able to tolerate formula that is comprised of partially broken down proteins, and she must be feed small regular volumes if she is to hold her feeds down.

Her weight gain is slow, even now that the diarrhoea and vomiting are under control. If early indications are anything to go by, it may take three times longer to recover this baby from her malnutrition than I would have hoped.

More time, more work, more patience than I thought I had. More laundry and more frustration than I thought I could deal with. And looking at this precious girl, who has suffered so much sickness, loss and pain, and who is so absolutely brimming with joy, how can I possibly say that I am overburdened? What reason have I to complain?

'I am he. I am he who will sustain you. I have made you and I will carry you...' (Isaiah 64:4).

Ti Fi weighed 8lb and 40z on admission. Today she has gained 3lb. She is becoming chubby, and she is a beautiful, delightful baby who absolutely has my heart.

Ti Fi with 'M' (left). He is my boy, she is my girl and M has whole heartedly accepted Ti Fi as his baby. They are so cute together. He is very protective and will not allow the other children to touch her. He points out a great many things of note to her. Ti Fi, much to M's delight is smiley and responsive.

She seems to have turned a corner this weekend; I haven't used the NG tube at all. She needs continuing prayer for healing. So Lord, heal this precious baby of ours according to your perfect will, and give her for every sickness, every sorrow and every pain she has suffered, a double portion of joy.

Amen

An Update On My "Problem Children"

Sandia Laura's family were unhappy that we would not be able to care for her here. Before we could organise a car to take them to a hospital, her 16 year old Mother left with the baby. We heard that they kept Sandia at home for a day. Somehow, she ended up in General Hospital in Port Au Prince. We do not know what her diagnosis was or what kind of care she received. What we do know is this; a few days ago, Sandia Laura passed away. It is difficult to understand why such a tiny baby should suffer so much in the few days she lived on this earth. We are comforted to know that she exchanges all this pain for an eternity in Heaven.

***

Baby Mike became very sick a few days into his stay with us. His abdomen was distended, his colour changed to a deep red, and he began bleeding from his mouth and nose and under his nails. By the time he became ill, we had received devastating news from his Aunt.

Baby Mike's Mother had been carrying twins. Her Labour had progressed so rapidly, that, caught unawares, she had delivered Mike into the bucket she used as her toilet. She was unable to deliver the second twin. She went to a hospital, where she had a caesarian. It was too late for Mike's twin, who died in utero. Mike's Mum died the following day.

We contacted a Neonatal Nurse Practitioner in the USA. She felt that Mike was suffering from an overwhelming infection, possibly listeriosis, which his Mother would have contracted from eating contaminated food.

We learned that with treatment, there was a 20-40% chance that Mike would die. To our great distress, we were unable to site an IV line to give this baby the fluids and antibiotics he needed. It was late at night and there was nothing for it but to provide unconventional care. I gave antibiotics by injection. I then placed a tiny needle under his skin and connected it to a bag of IV fluids. IV fluids were slowly infused overnight. It was not ideal but fluid was gradually absorbed into his system.

The next morning, Mike was alive and crying loudly. We were so impressed by our courageous boy, and as you might understand, desperate to do everything that we could to save his life. Our Paediatrician arrived and managed to start an IV. Things were looking up. The Doctors were optimistic that he might live, and Mike definitely had fighting spirit.

Unknown to us, there was trouble brewing. At home, Mike's Grand-Father was demanding that the women of the family go to GLA and demand that we return his Grand-son to them. We explained that Mike was critically ill, and that he would die without oxygen,. IV antibiotics and fluid. We explained that he was too small and weak to survive out of the incubator, but that in a few short weeks, things might be very different. There was no talking with them. No reasoning.

When they returned the next day with Baby Mike's Father, GLA's hands were tied. We re-iterated them that Mike would die, but they were insistent that they wanted him home. The Haitian nurses were obliged to remove the IV, take off the oxygen prongs, wrap the baby warmly and hand him over to his family, all the while knowing that death was inevitable for him now.

One of the staff tells me that Mike's parents are not from this area. Their home town is a Voodoo stronghold. Haitians are deeply spiritual people and it is likely that the family believe that an evil spirit caused the death of the Mother and Mike's twin, and that this spirit was still attached to Mike. This being this case, they would have no faith in the power of Western medicine to change a thing.

Mike's Aunt lives a few hundred yards from our gate. Minutes after the family left, as I sat on the NICU balcony cursing his family and grieving for Mike and for them and their country, this spiritual shadow land where people live bound by beliefs that hurt and harm, the steady beat of traditional drums began sounding...

***

Baby D's blood work indicated that she was suffering from a severe bacterial infection. We never did find the source. As the days passed, her colour improved and her heart rate slowed. We kept her on a strong antibiotic for two weeks, so that we could be as sure as we can be that the bacteria that made her sick has been eradicated from where ever it was growing. Baby D is back to her usual happy, smiling self. We will continue to watch her closely.

***

And Ti Fi.... We have had a hard few weeks, but she has turned a corner.Hers is a story for another day.

Problem Children

Last week I was too busy with "Ti Fi" to be updating any blog. Ti Fi was delivered into our arms a week and a half ago. She is around 8 months old and has been in the care of her Grand-Father for the past 2 months. She weighed 8lb 4oz when she arrived.

She was all loose skin and jutting bones. Last Saturday, she began bruising spontaneously and was refusing to drink. She had been having a lot of diarrhoea and was dehydrated.

Malnourished children can bruise due to vitamin K deficiency, lack of clotting factors in their blood or because of severe infections. I examined her thoroughly but did not find any sign of infection. We started her on an antibiotic anyway, just as a precaution. We also started vitamin K supplementation. Thankfully, there has been no new bruising this week.

To be absolutely sure that Ti Fi receives the level of love and attention she needs to set her on the road to recovery, she has moved in with me. She has made good progress; she has gained over a pound, is smiling a lot and has found the strength to sit unsupported for short periods. Needless to say, I am smitten and you will be hearing much more about her!
So that is problem child number one, although I wouldn't call her a problem exactly. Problem child number two arrived yesterday, just as I was looking forward to a quiet weekend. She was born a month prematurely and is from the area in which the orphanage is located. Mum brought her to us because the baby was vomiting. She was born on Wednesday and it transpires that she has never passed a bowel motion. It looks as though she has some sort of obstruction in her gut. I placed a feeding tube down her nose and aspirated 70 cc of bile from her stomach, which, far exceeds a new born's stomach capacity.

Sandia Laura is on IV fluids and antibiotics. We are aspirating her stomach contents every two hours to make sure that she doesn't aspirate. We will transfer her to a hospital in the city for surgical evaluation first thing tomorrow morning. Please pray for Sandia.

Mike is problem child number 3. He is also from our area and he is an extremely low birth-weight boy, weighing 2lb 4oz and born approximately 10 weeks before he was supposed to make his debut appearance in this world. Mike was born early this morning and he arrived at GLA just after 9am. He was having some difficulties with his breathing at first. and he was very, very cold and had a low heart rate. When I left the NICU, he was warm, pink and crying. I want this baby to live so badly it hurts. God, mature his lungs and give him the strength to live through the next few weeks.

Problem child number 4 is a year old. D had a cellulitis (soft tissue infection) in her leg a few weeks ago. Today, she developed a slight fever and became very, very pale. She was breathing 8o times per minute and had a heart rate of over 200/minute. She is very unsettled and seems to be in pain, but a top-to-toe examination has failed to find a convincing source for the infection. I did a blood draw on her this afternoon and started her on an antibiotic and regular pain medicines. We will have to watch her very closely. We nurses do not like not knowing the cause of a fever in a child.

I laughed when the night nurse came in. She smiled nervously.I smiled back. 'You wont rest tonight,' I told her. 'I didn't rest all day! 'We went on to discuss the babies we (affectionately) refer to as our problem children. Hopefully, they will all be 'good', or, in other words, remain stable over night. This nurse desperately needs some beauty sleep and she wont be getting any if any of her little darlings misbehave.

The telephone in the main house rang, and rang and rang last night. It was 9pm and the office was closed, but the ringing was so insistent (read irritating) that I went to answer the call.

The Mother of one of my NICU babies wanted to visit. I told her that the house was closed to visitors over the weekend. She kept asking, 'If God willed,' could she come in the morning? I wanted to say yes, but told her instead that no-one worked in the office on Saturdays. She could come on Monday, though, 'God willing', to see her baby.

She paused for a moment. 'Is he sleeping', she asked? My heart ached for her then. Her tiny son is happy in our arms but her own saddness will not be quick to fade. She will always wonder what he is doing.

We admitted four new babies this week. Miss Magaly decided that we were going to do blood draws on them that very day. I met each of their Manmans. It is rare for me to have any contact with them at the point that they hand their babies over to us. Frankly, I would rather not be present for that. There was no great show of emotion from any one of the ladies, just a quiet resignation. Circumstance compels them to relinquish their babies.

Two of the babies were very malnourished. This tiny boy (below) is two months old and weighs 7.5lb. His face is swollen with fluid and his skin is depigmented and peeling: he has Kwashiorkor malnutrition. Young infants (statistically) do not have a good chance of surviving Kwashiorkor, but this one is smiling and feeding well. We couldn't ask for more hopeful signs than those. Still, we will manage Baby P conservatively. His immune system will be very compromised and so we are watching him closely for signs of infection. If we treat him too aggressively, and try to fatten him up too quickly at this stage, he could go into multi-organ falilure.

This baby's emaciated body tells an all too common story of starvation. At 12 months, he is old enough to pine for his Mother. Please pray for him. If he adjusts well to the orphanage, I am sure that he will thrive here. He is in good hands. Loving and experienced nannies, who know that he has lost everything, will do many little things to ease his transition. They will will hold him and rock him the way Haitian Mothers do. They will feed him foods that are likely to be familar this week, even supposing they are not the best foods to recover him from his malnutrition. Allready, this frail little boy is reaching for these ladies and allowing them to feed him strange new foods. I am in awe of them.

And we are seeing double, yet again. A gorgeous set of twin boys have joined us in the NICU. They are just 5 weeks old and are happiest when we place them so close that each can feel the warmth of the other. This is brotherly love!

Blessed Be The Name Of The Lord

My mind has been drifting up the mountain to Kenscoff all weekend.

Our premature baby died on Friday morning, too small and too weak. We called her Papa to the NICU and he was present when her heart stopped for the second time. We could not start it again, and the decision was out of our hands. As Dixie removed the tubes and expressed her regret, the Papa put his head in his hands and wept. There are few things more devastating that a Father's cries.

.What will be in that Manman's mind, I wonder, when she undoes the sheet, to reveal the body of her tiny infant. Will she groan? Wail? Tear at her clothes? Fall to the ground? Will she rock her and sing? Refuse to believe? Or, will she hold everything back? I can only guess. I can't really know, but, my mind is drifting off to Kenscoff, to a 26 year old lady, who loved this tiny girl so much, that sick and weak though she was after a difficult pregnancy, she sent breast milk to the orphanage every day, because I told her it was the best thing for the baby and that it might help. Now, Manman's breasts will be full of milk. They will be heavy and they will ache. And perhaps Manman will be left with the insubstantial weight of the baby we called Gabriella in her arms, even after the infant has left them. Grief is like that.

These past three months have been tough in the NICU. Not a single week has gone by without a crisis. First Jonathon, then Baby S. A baby with septicaemia; so sick that we almost most her. A 6 month old who developed bloody diarrhoea and stopped breathing. An HIV positive boy with recurrent pneumonia. Now Gabriella. I try to be positive but in all honesty, I am feeling the strain. We are on an emotional roller-coaster here. Most of our babies do not have mothers. We are not just nurses and nannies to these little ones and by the same token, they are so much more than patients or charges to us. We carry an incredible weight of responsibility in our hearts, and it is really hard sometimes.

"Dee Dee", ready to catch a flight to the States with Dixie, early this morning. She was extremely ill last month with septicaemia but is now well enough to travel for surgery to correct her club feet.

Gabriella died at 8:30 in the morning. Within the hour, another infant arrived in a critical condition. She came from another orphanage in our area. This 11 month old baby was relinquished by her birth family two months ago. She has been refusing to eat for sometime. She developed watery diarrhoea and was so dehydrated when she got here that she was going into shock. We started her on an IV and antibiotics, but she is still refusing to eat. Perhaps she is missing her Mum. Perhaps she is not feeling well, but this baby must eat in order for her gut to heal. If she is not eating by tomorrow, I will have to site a feeding tube. Please remember her in your prayers. We do not know her name and so we are calling her "Fifi" for now. When she is better, she will return to the orphanage she came from.

I am so glad that Fifi made it here and that she arrived when she did. She is being lavished with love and attention. She is not the only one who will be healed.

Then Job arose... and he fell to the ground and worshiped. And he said:

“ Naked I came from my mother’s womb,

And naked shall I return there.

The LORD gave, and the LORD has taken away;

Blessed be the name of the LORD.” (Job 1:20-22).