Monday, 19 December 2011
Sunday, 11 December 2011
Do you recognise her?
Charilson became seriously ill, late on Sunday night with severe dehydration. He caught a bad cold on Tuesday. We have increased the strength of his formula, using guidelines that were provided to us by a dietitian. This baby needs to beat the cycle of sickness and malnutrition. The best way to do that is to re-nourish him as quickly as possible. So far, he is filling out nicely. Of all the fragile infants in the NICU just now, Charilson, the one who came in healthiest has been the most difficult to recover to health.
Sunday, 4 December 2011
Alaine, was off of her nasal cannula. She'd had a sudden growth spurt, and was now stable without the constant flow of compressed air. We will continue to observe her carefully. The nannies will be pleased to do that. Alaine is ridiculously cute - her face is so round that I call her my cabbage patch doll. Her eyes cross badly whenever she tries to focus on us. That only makes the Haitian staff all the more fond of her. 'You have to send a photograph of Alaine for her mother, Susan. Maybe if she sees how fat the child is, her mother will have hope.' Alaine's Mother has lost 17 infants. We wonder if these babies had a genetic syndrome. Alaine has had airway problems and her ears are small and set very low on her head. God knows. We just enjoy this sweet girl and stay watchful for any health problems. Alaine's mother deserves to have one child, this side of heaven.
Bianka is going from strength to strength. She came to us severely malnourished, with swollen hands, feet and eyes. We almost lost her to renal failure, and she went on to develop heart failure and seizures as she stabilised. She was severely anaemic and her protein deficiency was so severe that she had very few immune cells. I was afraid that infection would claim her life. She had an ethereal, waxen pallor and her skin was coming off in sheets. The Haitian nurses were convinced that she had been burned. Her skin was so thin and raw that we had trouble keeping this baby warm and hydrated. I treated her like a very premature baby. Today, Bianka is recovering from her malnutrition, filling out, and tipping the scales at almost 6lb. Her survival is a work of God, and I am blessed to be a witness to her healing.
Want to see another miracle? Charilson is a premature baby who was transferred to our care by Real Hope for Haiti, a Christian mission run by our friends in Cazale. Charilson was very small for his gestational age when he was born last month.. He became malnourished when his mother fell ill and died. His grieving father dearly wanted this frail boy to live and in his sorrow, he gave thanks to God that there was someone who could nurture Charilson through the fragile newborn period, in which so many Haitian babies die. Touched by his gratitude, I promised his father that I would do all I could to ensure that Charilson grew strong and healthy. Charilson had mild diarrhoea and was very anaemic when he arrived. He contracted an intestinal infection and overnight, became severely dehydrated. When Mme Bernard reported for duty at 7am in the morning, Charilson's gut had shut down and dehydration and infection had sent his body into shock. He almost died.
Charilson was not doing well last night. The night nurse said that she couldn't get him to feed. He has mild diarrhoea and a swelling at the site his IV line was placed. He is now back on antibiotics and he has been started on Elecare, an expensive milk formula with pre-digested protein and fats and sugars that are easier for him to digest. He is sucking better today. Please pray that he and Bianka will receive a full healing.
Rivens, who was born 6 weeks early is off of CPAP and no longer needs a feeding tube. He is a beautiful baby, who is growing and thriving and very active in his incubator.
'Celia', came from an orphanage up the road, suffering from severe diarrhoea and protein-energy malnutrition. She is also on the mend today. Her admission weight was 14lb 7 ounces. We rehydrated Celia and then began treating her infection and renourishing her. We gave Celia medical peanut butter and a specific blend of minerals to help her absorb protein. Her weight dropped to 12lb 14 ounces at it's lowest point. Believe it or not, this was progress - a sign that celia had metabolised the protein in her diet, and that the fluid in her tissues had been pulled into her bloodstream and left her body. Celia is regaining her appetite. We hope that she will lay down fat and build muscle as she recovers. She smiles and waves at the NICU staff now. If Celia continues to do well, she will return to her orphanage later in the week.
Anyone walking into the NICU now, seeing it so calm, without a CPAP system or an oxygen cannula or even a feeding tube in sight, would have trouble believing that just 2 weeks ago, we had five critically ill babies and that the room was full to bursting, with medical equipment and monitors alarming all over the place.
That's a good thing: a sign, I think, of a job well done.
Tuesday, 29 November 2011
Celia was seen by our Pediatrician today. She was well hydrated. Most Haitian hospitals would discharge her home at this point. Since Celia wasn't out baby, I wondered if it might be best for her if we sent her back to the orphanage she came from with some instructions and supplies to enable the staff there to continue her care. I planned on giving the orphange workers the option to call for advice, or to bring Celia back if she wasn't doing well.
'But who will take care of her there?' the Doctor asked.
They have a nurse at Celia's orphanage. They also have nannies, and lots of older orphan-girls who help out with the little ones. I told the paediatrician this.
'I think she should stay here for another week or ten days.' Dr Nathalie clearly had a lot of confidence in our abilities and that was a great encouragement.
'Until the swelling has gone down, at least?' I asked. The doctor nodded. 'Ok, that sounds like a plan.'
So if her orphanage director is in agreement. Celia will stay with us at GLA, until our Paediatrician returns next week to review her. We have nurses on site 24 hours a day. People who can respond immediately if Celia develops complications during the stabilization phase of her treatment.
Sunday, 27 November 2011
Yet, two charity hospitals had said, 'no' to her. It was 3pm on a Friday afternoon. The Brothers orphanage, which is less than a mile away had brought her to us. The toddler in front of me was was severely dehydrated, and her body temperature was low. I knew that if I said no to her too, she certainly would not survive.
She doesn't have a name, and we don't know how old she is, but we are calling her Celia and we think she might be 18-24 months old. 'Celia' was abandoned at the gate of a remote orphanage. Two weeks ago, she transferred to the Brothers orphanage in Thomassin, for special care. Celia has Protein-energy malnutrition -her hands, feet and calves are very swollen and in this malnourished state, her body and immune system have been overwhelmed by an intestinal infection. Twenty-four hours after she became ill, she had lost so much fluid that her body had gone into shock.
She did not respond when I pricked her finger to test her blood sugar. When Mme Berrnard started her IV, mercifully able to find a vein, as tiny and flat as they were, Celia didn't even stir. She was on a warming bed and her body temperature was going up. Her glucose levels were in the normal range. These were good signs that she would respond well to treatment.
We gave her a bolus of fluid and Celia's eyes opened. She cried after I'd finished giving her medicine. She was thirsty and reaching for the syringe. I gave her two ounces of oral rehydration solution to drink. It was a mistake. Over the next 2 hours, her body dumped 16 ounces of fluid. Celia was in an extremely fragile state. Her shock had progressed. I counselled her orphanage director, over the phone, that I was working very hard to rehydrate this little girl, but that I wasn't sure she would survive.
By 10pm, I had given Celia a blood alkaliser, and several fluid boluses. Finally her breathing pattern was normal, her heart rate was regular, her hands and feet were warm and she was awake, lethargic, but aware of what was happening around her. She started to moan. She took a hold of my scrub top. She would't let go.
I scooped Celia up out of her crib. At that point, she had two IV's running. She rested her head on my chest, and she fell asleep. As I sat with Celia, I experienced a feeling of warmth. God was very close. I hoped you would say, 'yes'.
He was smiling and he was blessing me, I knew it.
Wednesday, 23 November 2011
Monday, 21 November 2011
Last night, his nurse documented that he was absorbing his feeds well. This morning, Mme Bernard, the head Haitian nurse found Charilson extremely dehydrated and profoundly hypothermic, with a very distended abdomen.
The drop in Charilson's body temperature was the first sign of a severe infection that made his gut stop working. Charilson deteriorated rapidly. The Haitian nurses were not able to start an IV. Charilson stopped breathing several times as they tired. There was one more thing left to try, but I was sure I couldn't do it.....
I sited a needle in the baby's thigh and began infusing fluid into his bone marrow. It was a radical measure, only used in neonates in dire emergencies, but Charilson was on the point of death. I had never inserted a needle into the bone and I have always felt physically ill whenever I have seen broken bones, or heard the broken ends grating. I didn't think I could overcome that physical reaction. I knew that I could not stand in front of his bereaved Daddy unless I was able to say that I had been true to my promise. I did it because 4 days earlier, I had told his grieving father that I would do everything I could, to restore his son, strong and healthy to him.
We have managed to rehydrate this precious boy. He is stabilizing, but he needs a nurse by his side constantly. Katie, an Australian nurse-volunteer is with him now. Our staff and volunteers are devastated by the sudden deterioration in Charilson. He captured our hearts fast - such a tiny elfin baby.
Saturday, 19 November 2011
I woke just as the ringing stopped. Disorientated, I reached for the phone. It was pitch black outside. I glanced at the screen display. 3:48am, and I had a missed call from Cami, the night nurse in the NICU. I knew she wouldn't call unless there was an emergency.
I was on my feet when she rang for the second time. 'You need to come and see Louna, She's not doing well.'
I had treated Bianca for heart failure 12 hours before. I had been afraid that the medicine I gave would make the potassium levels in her blood fall. I worried that this could affect her heart rhythm or cause seizures. Louna was sick?'Yes. Louna.'
Louna had developed a mild case of diarrhoea overnight. It was a very, very mild case, but her oxygen levels were low and she was breathing very fast. The night nurse had started oxygen. She didn't have a cold and her chest sounded normal. It didn't make sense. The night nurse said she could not get Louna to feed. The baby, had been unusually sleepy over the past week, and she looked pale now. We ran a blood test.
Louna was anemic. Her hemoglobin was 8. It had been 16 four weeks ago. The baby would not suck. She wasn't dehydrated, but at less than 4lb, we know that she soon would be. We put a feeding tube down and gave some fluid to replace what she had lost through the diarrhoea, then began drip feeding donor breast milk. Before I knew it, the sun was up. It was 6am.
A few hours later, Charilson, a 3lb 11 oz baby boy arrived from Cazale. The baby was 3 weeks old. I had hesitated to say 'yes' to him the day before. We had an outbreak of diarrhoea and vomiting in the NICU, and herpes in some of our other rooms. I didn't want to expose a fragile baby to these infections unecessarily. The centre that referred the baby here still felt that it was in Charilson's best interests to GLA. His mother had died a few days before. We all knew, when we heard this, that his situation was urgent.
The baby was skinny and pale, but bright eyed when I met him in the waiting area. I expressed my condolences to his grieving father. This was his only child, he told me. Charilson was a precious son. He wanted him to live. I assured the baby's father that we would do what we could to get the infant strong and healthy. ' I am just so glad,' he told me, 'that there are people who can help us.'
I returned to the NICU to find Bianca having a seizure. I had all ready ran some blood tests on her. Her potassium levels were low, and I had increased the amount I was giving to her to correct this imbalance. Her Mother, had gone home the weekend before, suffering from a high fever. I tested Bianca for malaria. The test was negative.
It was a busy afternoon, with Bianca requiring constant monitoring, Alaine not feeding well, Louna on oxygen and tube feeds, and now, tiny Charlison in the mix.
4:30pm: Bianca was having several seizures and they were lasting longer and longer. I gave her some medication rectally to stop the seizures. She wasn't able to retain it. As I was giving her an injection, a nanny whispered to me that there was a baby downstairs with his aunt. The aunt wanted a nurse to see him because he wouldn't open his eyes. I smiled and said I would see him as soon as Bianca stopped seizing. Her colour was ghastly. Every time I've thought I was losing you baby, you have come back to me. Please come back now. Just then, her seizure stopped.
Downstairs in the waiting area, I unwrapped a tiny, premature infant. I couldn't believe it! We were really pressed in the NICU as it was. The baby had been born that day, in the 7Th month of his mothers pregnancy. A green, blood stained discharge was oozing from his swollen eyes. 'I can't make him open his eyes!' the Aunt exclaimed. The baby was icy cold and he was working hard to breathe. I told her I needed to take him up to the NICU, right away!
The baby was chubby, and he had a deep red colour. I knew that as he warmed, he would have even more trouble with his breathing.He needed IV fluids, antibiotics and CPAP. The Haitian nurses were going off shift. How was I going to get ever thing done myself?
I sent out an SOS, and Katie, a Paediatric Nurse from Australia, who is volunteering at GLA just now, answered the call, graciously foregoing a dinner out with the rest of the staff and volunteers, so that she could help me with GLA's newest admission.
Although we got him stabilized, his heart rate plummeted at 9pm. It was still dropping after 3 fluid boluses. I gave a dose of epinephrine to bring his blood pressure up. It took another 3 fluid boluses to improve his condition. He was dehydrated, cold and he had an infection. His body had been going into shock. I'm so glad, little man, that you wouldn't open your eyes. If you had, no-one would have brought you to us and you would be dead by now.
It was almost mid-night. Time to go to bed.
The next day, our premature boy was looking better. Bedside blood tests showed that he needed some minor changes to his IV fluids, but that CPAP was correcting his breathing problems. Bianca was hungry, still on a fluid restriction to keep her out of heart-failure, and not appreciating this in the slightest. Charilson was sucking well. Louna was drinking again too but she still needed her oxygen.
Over the afternoon, we had some trouble keeping our preemie boy's blood sugars up. He was well enough to start receiving small amounts of breast milk but his mother was extremely reluctant to express. The oxygen on his CPAP was being weaned down. At 8pm, I was exhausted but relieved to note that all of our fragile little ones were doing well.
They continued to improve overnight. This morning, I took, Louna off of her oxygen. Gave IV antibiotics, and made some CPAP adjustments. I went downstairs to do some chores.
Two hours later, a nurse came to find me. Charilson was very dehydrated, she told me. I could hardly believe that. He had looked so well earlier this morning.
Upstairs in the NICU though, I learned that Charilson had developed watery diarrhoea. He was pale and sunken-eyed. His skin was looser than usual and he had lost 8 ounces of weight. A few hours can change everything, I thought to myself, as we tried, unsuccessfully to start and IV.
Charilson is being re-hydrated with IV fluids, delivered a drip at a time down a feeding tube. His fathers words, spoken to me two days ago, and my promise to him drifted back to me as I settled Charlison. I really wish we had been able to get an IV line into him.
Wednesday, 16 November 2011
She went into heart failure today. This was not entirely unexpected, since Bianca is in a very fragile state. She was given an extra feed last night, and that was all it took to overwhelm her body.
Bianca has been given a dose of medication to help her get rid of some of the extra fluid that is building-up in her circulation. This has taken the pressure of her heart and it has made her breathing less laboured.
We are going to have to limit the amount of fluid Bianca takes in, to prevent her heart failure from worsening.
Please, continue to pray for this angel.
Monday, 14 November 2011
Bianca is following the NICU nurses with her eyes. She is sucking on her fingers, and even trying to drink from a bottle. Although this utterly exhausts Bianca, she gazes up at me when she has finished her bottle feeds, and smiles weakly.
It is magical to witness each phase of her transformation. In the pale light of her smile, I am warmed and soothed by the hope of the frail beauty that is emerging. I am drawn in, as if by an invisible magnet and pierced by the reality of her suffering, still so evident, and so far from being consigned to memory.
Friday, 11 November 2011
It had been a tough shift. Twice, sudden drops in her blood sugar had brought Bianca to the threshold of death. I had watched her, and her monitors constantly. I quickly learned that the first sign of of a falling blood sugar level, was a slight drop in her body temperature, followed by a dip in her heart rate. I had tried so hard, but despite everything I was doing, Bianca was fading. Her tiny body, so ravaged by malnutrition was giving up. The baby had an unearthly pallor. Her blood was watery. Her kidneys were not producing urine. Her breathing was shallow. She was unconscious, barely responding to pain.
Her mother was not producing more than a few millilitres of breast milk at a time and I suspected the formula we were feeding to Bianca continuously, through a feeding tube, drip-by-drip, was too strong for her damaged organs. I had a small amount of pasteurized donor breast milk. I poured it into the bag that hung from an IV pole above her feeding pump. A few hours later, Bianca had a wet nappy! I instructed the night nurse to give Bianca regular boluses of sugar water, in addition to the donor milk, to keep her blood sugar up
Over night, she stabilized. I found her sucking on her fist this morning. Awake, alert, crying pitifully, hungry. Alive!
Her colour is much better tonight, the swelling in her feet has gone down and she is holding eye contact with me, and she even smiled. 'Imagine', I told the NICU staff, 'after everything she has suffered, she still wants to live, and she can even manage a smile.'
Bianca wants to live, and I dare to hope, that she might.
Don't stop praying. Her life is still an extremely fragile thing, even if her hold on it is firmer.
Wednesday, 9 November 2011
The baby arrived, wrapped in blankets, with her face covered. The moment I unwrapped her, I knew that this baby would certainly have died if we had said, 'no' to her: Bianca is 2 months old and she is desiccated, emaciated and puffy-faced with fluid collections in her hands, feet, and liver. She has now entered the swollen stage of protein-energy malnutrition. There is a faint odour of decay about her. Oh, lord, have mercy!
Bianca is hypothermic, and her heart-rate is dropping. Very few infants under the age of 3 months survive protein-energy malnutrition, and the signs we are seeing point towards Bianca's imminent, and almost certain death. Deep within me, though, I sense that this is not the time to surrender.
Please pray for this tiny, extremely fragile infant. Over the next few days, I will attempt to stabilize her. She doesn't need to make drastic improvements during this stabilization phase, she just needs to survive it.
Sunday, 6 November 2011
When a preterm or sick infant is first admitted to the Special Care Nursery at GLA, the nursing staff often place them under a radiant warmer. The warmer is an open cart on wheels, with an overhead arm that provides heat and light. These beds are perfect for resuscitating babies and toddlers, starting CPAP, inserting IV's, warming hypothermic infants, and observing critically ill infants until they have stabilized. GLA's only radiant warmer is 28 years old!
Every day, for 40 days, Asha will display a tiny diaper on her website, each with a different design painted onto it. During those 40 days, people will have the opportunity to make a paypall donation. At the end of the 40 days, the diapers will be sold to the highest bidder in a silent, online auction.
Asha explains the origins of this unique fundraiser, which lie in her experiences of parenting her own premature baby, in a well-resourced NICU in the USA:
'When Alana was in the hospital, she wore the smallest little diapers that you ever saw. She was so tiny that we had to fold them in half so they would fit around her little body. I want to paint on diapers because I love the idea of the ordinary being used for something extraordinary. Diapers are an everyday item in many households, but when you think about these little diapers and the tiny babies who are fighting for their lives wearing them, it makes the everyday more personal.
November is Prematurity Awareness month, and I can’t think of a better time for this dream to become a reality! The cost of one warming bed is: $6,750.00, but when I think of how many tiny lives could be saved, I am reminded of what a priceless gift this would be. My hope and prayer is that this project would grow beyond my wildest dreams and support babies who truly need our help.'
To follow the progress of The Painted Diaper or to make a donation, please visit the project website.
Asha holds the first painted diaper in her hands. (Photo credit: The Painted Diaper.)
Tuesday, 1 November 2011
Then, Mario became more irritable. Children with Kwashiorkor are often irritable, so we didn't think too much of this when he first came in. We just kept a close eye on Mario. The irritability was soon accompanied by vomiting. At that point, we became even more watchful. The protein deficiency Mario was suffering from would affect his immune system, we knew, and we wondered if in his malnourished state, Mario was developing an infection. We had to monitor him very carefully - Children with compromised immune systems often do not develop symptoms of infection until their infections are very advanced. Their bodies are just too weak to put up a fight.
Our Paediatrician was very concerned: Mario was not having true fever spikes, but the front of his head protruded, and his fontanel was bulging, These were possible signs of hydrocephalus (an abnormal build-up of fluid on the brain). The Paediatrician was worried that Mario might be developing Meningitis.
We hoped that wasn't true. We wanted the protruding forehead to just be a symptom of rickets. Many of our malnourished children come with bowed legs and protruding foreheads. We hope this wasn't Meningitis, but we had to treat it as though it was.
The day after we began treating Mario with high doses of antibiotics, he began spiking fevers, that would not come down.
Tonight marks the first 24 hour period he has been without a fever. The swelling on his body has gone down, and Mario is much more settled, and no longer vomiting. These are signs that the infection that has been making him sick is under control and that his body is healing.
Please, say a prayer for Mario tonight. There is sunshine in his smile and I believe that the world needs his
Sunday, 30 October 2011
Three children were admitted to the main house this week. The first to
arrive was Kimberlie. She is chubby, healthy baby girl. Although she weighs in at over 12 lb her mother insists that she is just 4 weeks old. We are not so sure. Kimberlie isn't holding her head up yet -babies usually do this at around 6 weeks of age - yet she moves her little arms and legs like a 3 month old. Maybe it was four weeks ago that the birth certificate was made? She is so big! We do sometimes see big babies - babies that are big not just by compared to their Haitian counterparts, but that are also big by North American Standards. Kimberlie is a very demanding infant. Haitians dote on chubby children, and we suspect that this one has been held a lot. She is perfectly happy when she is eating or sleeping. Otherwise, she wants to be held and entertained. Ssh! Don't wake her!
Our second admission, on Thursday, was 8 month old Emanuella. Her mother told us that Emanuella was a healthy baby. It was obvious looking at her, that this was not the case. Emmanuella has lots of loose skin folds, and seems to have lost some weight recently. She has a cough and an ear infection, swollen glands, a yeast infection in her mouth and fungal infections on her arms and legs. Her stomach is swollen and she has diarrhoea.
Emmanuella was clearly very attached to her Mother. She was the youngest child in a large family and she is grieving just now. As she adjusts to the losses and changes in her life, she needs a lot of attention from the nursery staff.
On Friday, a blessing returned to us. We first met Beni at the beginning of 2010, when he came to us for medical assistance. He was a tiny 5lb baby then, whose mother had died after a long and difficult labour. He didn't have a name, and so GLA supporters suggested names for this baby. Our director chose 'Beni' a name that in Haitian Kreyol means 'Blessing.'
Beni returned home to his father several months ago, strong, healthy and developing well. His Mothers sisters were anxious to care for him and we were confident that Beni would thrive well at home.
Sadly, Beni is back in our care, and this time, his father has relinquished his parental rights. Beni's family tried, they really did, but they are unable to nourish Beni. He is in the beginning stages of Kwashiorkor, with some mild swelling in his hands and feet. He is weak and pale and he has terrible diarrhoea, scarring from bacterial sores on his hands and feet and herpes in his mouth. He needs to heal, to regain his strength and to grow. The nursery staff were very pleased to see him. Beni smiled bashfully at all the ladies who came to welcome him back. Last night, I was told that he was beating the two year olds! I think he is going to do well here!
We pray that these three beautiful children will settle in their temporary home, that they will blossom at God's Littlest Angels, and that they will be matched with adoptive families very soon. There are parts of their histories that we will never know, but it is a privilege to enter into their life stories now.
Sunday, 23 October 2011
Louna is a very stressed infant. Her premature birth in Site Soleil and the struggle to survive in that noisy and chaotic environment have overwhelmed her. Now, even nappy changes are stressful for her. Researchers have found that pain and stress can affect premature babies brain development well into childhood. Thankfully, we have found that Louna is quickly soothed by swaddling.
Baby Sarafina, I am told, has quite a fan club outside of GLA, but she wasn't really Anne Geddes material when she was born either. A few days after she arrived, this low birth weight baby, who was vomiting and who appeared to have lost weight in the days since her birth, was unable to keep any of her feeds down.
On a hunch, I decided to try a continuous feed, through a feeding tube. I am glad that I did that because Sarafina developed swelling in her feet, that soon spread to other areas of her body. We learned that this fragile newborn had developed a mild case of protein-energy malnutrition. I was full of dread. We have previously lost three tiny infants to this particularly debilitating form of malnutrition. Babies under three months do not tend to survive kwashiorkor, since their organ systems are not developed enough to withstand the damage that protein deficiency causes.
Sarafina was able to tolerate continous feeds. She beat the odds, making her my youngest survivor of Kwashiorkor. She is happy, contented and very alert now and I am so grateful that her mother brought her to us in time. For Sarafina, being admitted to GLA at just that point in the course of her illness, and being carefully re-nourished at that critical time, was life-saving.
Alaine was pretty, when she arrived, compared to most of the premature infants that we see at GLA but she was no Anne Geddes baby. Alaine came from the mountains above Cazale almost 3 weeks ago. She was a late-preterm infant, born in the 8th month of her mothers pregnancy. She was very small and skinny for a baby born at that gestation and we were concerned to hear that she was her mothers 18th child, and that all of her brthers and sisters had died as young infants.
Initially, Alaine was treated for apnoea and she was weak, very sleepy and difficult to feed. It became apparent around a week after she arrived that Alaine had problems with her airway. She needs a constant flow of compressed air through a nasal cannula to keep her airway open so that she can breathe easily, sleep well and suck from a bottle. It seems that a little bit of reflux was making her breathing symptoms worse; milk was refluxing up her oesophagus during and after feeds.
Thankfully, we are able to treat her reflux and Alaine is filling out nicely and really thriving. We hope that she will grow out of her airway problems but it is likely that she will need nursing care for a very long time.
Anne Geddes may not chose these girls as her models, yet, but I think they are beautiful. I have to stay mindful that whatever their earthly fortunes have been, or will be, they are daughters of the most high king, true Princesses who will recieve a rich inheritance.
Tuesday, 18 October 2011
Well, Baby Boy lived less than a day and a half, and then, regretfully, three were two again. Applying the 'rule of three's' my friend and I surmised that no more premature babies were likely to be admitted for a while.
Last night brought news. In Cite Soleil, an 800g baby, almost three weeks old, was clinging on to life at home. She had been discharged from St Catherine's Hospital with an NG tube that her mother was struggling to manage. My heart sank. The baby weighed less than 2lb. Since she had survived this long, I assumed that she wasn't extremely premature, but she had to be severely malnourished and severely malnourished newborns tend not to survive.
As I finnished preparing the NICU for Louna, we admitted a 6 month old baby boy. Mario's Mother died 2 months ago. It was immediately obvious to us, looking at his puffy cheeks and peeling skin, that he had been in the care of a father without any real social support network, since his mother had passed away. Mario's father didn't have the knowledge or the means to nourish this fast growing baby, with high energy and protein requirements.
Mario is swollen due to Protein-Energy-Malnutrition, also know as Kwashiorkor. Low levels of protein in Mario's blood have caused fluid to leak out under his skin. 'No, he is not puffy,' the father insisted, 'that's just his shape, he's got a big round face!'
Hearing this I gave thanks inwardly, that his Father had decided to bring Mario here when he did. Like many people, Mario's fahter does not understand that his son is malnourished and in a critical condition. Over the next two weeks, we will attempt to re-nourish this child. We pray that Mario will stabalize. We need to see his weight go down as fluid moves out of his tissues and leaves his body. This will be a very fragile period. We pray that the electrolyte shifts will not be too dramatic and that Mario's organs will be able to process nutrients. Unfortunately, his protein deficiency has compromised his immune system and he will be very vulnerable to infection.
Louna arrived with her Mother early this afternoon. We learned that her mother had spent the last three and a half weeks going from hospital to hospital, seeking care for her tiny daughter. Louna was one of a twin, her brother did not survive, and Louna's mother doesn't have any other children. She has been very devoted to her tiny daughter, and has managed to keep her warm all this time. Last night though, the baby was bitten by a rat, and her mother knows that rat bites could make her fragile infant extremely ill.
I soon learned that Louna had been overhydrated. She has fluid on her lungs, which, is making it difficult for her to breath, so I am giving her compressed air through a nasal cannula to make this easier for her. She is also reciving antibitics, because she spiked a fever this morning.
I have estimated her gestational age at 34 weeks, but I am not sure how accurate these assessment will be in a baby who is almost a month old. Usually they are performed soon after birth. A visiting Neonatal Nurse Practitioner is going to do some more in-depth assessments tomorrow. If Louna really was born at 30 weeks, it is trully a miracle that she survived.
So now, two have become four.............
Saturday, 15 October 2011
"Oh, we just prayed for you and him. Knowing he is God's hands makes me smile, free from struggling for breath. You are going to be one busy little "momma" (i know you love each one like your own) when you arrive in heaven, imagine all those little arms reaching for you..remembering the love and prayers you shared with each of them. So blessed are we in the kingdom to have that promise."
To read this was to receive a warm hug. thank you for that colleen! Hopefully, I will make it to heaven, and hopefully, someone up there will make sure that my babies and I recognize one another. I hear we will all look very different in heaven
The mother of 6 made her way down the treacherous mountain path to The Good Samaritan Health Centre in Cazale. There, to the surprise of the clinic staff and the family, the lady delivered not one, but three tiny babies, all weighing less than a kilogram.
A call was made to GLA. Would we accept the triplets for medical care if they survived through to the morning? In the meantime, what could the staff do to keep these three infants alive, given that they had only one oxygen concentrator at the clinic, and no incubators?
Sisters Lori and Licia, their national staff and foreign volunteers improvised to provide oxygen and a heat source for all three babies. They used instant hot packs to keep the babies warm, placing a clear plastic tub over all three infants, piping in oxygen and giving glucose gel rectally to help keep the tiny babies blood sugars in the normal range.
By midnight, the smallest baby, a boy who weighed 1lb 14 oz, was the only surviving infant.
A three hour drive away in Thomassin, not knowing that two of the triplets had died, I was preparing the NICU for three tiny babies, who would all need incubators and CPAP. Alaine still needed an incubator and we would have to do some serious improvisation to care for 4 preterm infants. I knew that, but the efforts of the staff in Cazale spurred me on. They were managing 3 premature babies in far more difficult circumstances. We would make it work too.
I prepared boxes of supplies that I would need to transfer the babies back from Cazale the following day. As I worked, I received news that the little girl in the triplet set had stopped breathing and that she could not be resuscitated. In that moment, I felt my first twinge of regret. The surviving boys would grow up without the sister who had shared their mothers womb with them.
The next day, in Cazale, I found baby Boy B, severely dehydrated but otherwise in good condition. On the journey back to Thomassin, the stressed infant, sucked on my little finger. This soothed him, and it had a effect on me as well. Close physical contact with a newborn, causes a surge in prolactin, also known as the 'mothering' hormone. I hardly knew this infant, but I loved him intensely and I knew I would fight for him with all I had.
Baby boy B did remarkably well, better than expected over the next 24 hours. Cocooned in his incubator, and covered in plastic wrap to help prevent heat and fluid losses from his immature skin surface, he was placed on CPAP. His vital signs were text book, but over the afternoon on Thursday, he was producing only very small amounts of urine. At 6pm, his temperature dropped, and a few hours later, still cool, despite my attempts to warm him, he developed a rash and stopped breathing.
Another twinge of regret - I wished I had started antibiotics on this baby immediately. I had played with the idea of giving them when I collected him in Cazale, wondering if his siblings had died so suddenly because of an infection. In the end, I decided the antibiotics could wait. In North America, it is standard practice to give antibiotics to all prematurely born infants, until it is proven that they do not have an infection. In Haiti, where resources are scarcer, this isn't the case. By the time this baby had received his first dose of antibiotics, he was over 24 hours old. The infection had taken hold. His organs had been damaged by a bacteria I couldn't see. I'll never know if starting antibiotics 4 hours before I did would have made a difference. I am certain, though, that had I instructed the staff in Cazale to give the babies antibiotic injections when we took that first call from them, the outcome might have been very different, for one of them at least.
As the night wore on, I had a familiar sinking feeling in my stomach. Deep down, I knew that this baby would not survive. His lungs were immature and stiff, and although he could get by on CPAP before, fluid was building up on his lungs now, and his kidneys were failing.
I felt that owed it to this baby, to his family and to the clinic staff in Cazale to do everything I could for him now, but the Haitian nurse who was working with me was tired and irritable and did not want to continue resuscitating Baby Boy B.
'Look, he's gone all ready,' she insisted sullenly, raising his arm up, then releasing her hold, allowing it fall limply onto the incubator mattress. She was trying to prove that he was unconscious, but baby Baby Boy startled, opened his eyes, coughed and began to cry. And there was the regret again. I regretted it all...... That his mother had no prenatal care, and that the best any of us could do, was 'retrieve' him, 18 hours after his birth, and that everything we had done really could not guarantee his survival, far from it. I couldn't criticize the nurse too heavily. The infant mortality rate in this country is extremely high. She had seen many, many babies die, and she had become calloused by that. Still, Baby Boy deserved better. He deserved far, far better.
Shortly after mid-night, with his oxygen levels dropping, his heart failing, and signs of brain damage, it was time to stop.
I wrapped Baby Boy in a receiving blanket and held him. There was nothing else to do. I really did regret that. I was so sorry.
Friday, 7 October 2011
Today was a good day for Alaine, our 2lb 14.5 oz baby, who comes from the Cazale area. She is breathing better, stable on a low dose of caffeine and receiving a puff of air through her nasal cannula to stimulate her to breath. She sucked much better and slept in between her feeds. Yesterday, our Paediatrician ordered some blood tests, to make sure that Alaine doesn't have any bacterial or viral infections. Her mother has delivered 18 babies and all previous babies have died as infants. We want to do everything we can, to ensure that Alaine Survives. On Wednesday afternoon, when I was told that a 2lb baby would be coming from Caazale, I got ready for a critically ill preemie. Instead, we have welcomed a pretty baby, who just needs basic nursing care, and lots of love and patience. It is a pleasure to snuggle her and nurture her.
Sarafina, our low birth weight baby who arrived on Tuesday has not been doing so well. She has been vomiting since the day she arrived and the vomiting has become progressively worse, to the point that Sarafina was mildly dehydrated yesterday. She was on continuous tube feedings for 24 hours and has slowly progressed to two hourly feedings. She seems hungry, but gags when she is feeding and whenever she is handled. We are treating her for reflux. This is a common problem in newborns, especially very tiny ones, who have immature digestive systems. Sarafina is receiving medications and small feeds. We also keep Sarafina as upright as possible, which seems to make her more comfortable. If we don't see an improvement over the weekend, we will try some different treatments and formulas. We hope that Sarafina will feel better soon.
Thursday, 6 October 2011
Alaine weighs 2lb 14.5 oz. The lady who accompanied her from Cazale, up to GLA, told us that the Alaine was not drinking enough. She was weak and she was becoming too tired to suck, but she was alert and moving her arms and legs. She clung to my scrub top, and her eyes met mine. There was a warm rush inside me and with it, protective, and nurturing instincts.
Alaine is her mother's 18 child. All the babies that came before Alaine have died. All of them. Every single one, including a premature infant that came to GLA for medical assistance several years ago, and went home strong and healthy, only to pass away at home. I'm sure Alaine's mother can't bear to attach to baby number 18.
Alaine is in an incubator tonight, struggling to find the energy to suck. I hope that she will be stronger after a day or two of regular feeds. She began having apnoeas this afternoon, which means that she would stop breathing briefly, and her oxygen levels and heart rate would drop. These episodes were frequent enough that they would have disrupted the balance of gasses in her blood if they had continued. To prevent this, I have started Alaine on Caffeine, and she is receiving compressed air, through a nasal cannula.
'We need to ask God to be merciful,' Mme Bernard exclaimed, with far more pathos than she is given to. 'We need to ask him to to save this one baby, this one for her mother.'
Although we have never met her, the anguish that Alaine's mother has known is very real to us. We pray that a year from now, she will have a reason to believe in God's grace, again. We pray for mercy. We plead for this child's life.
Tuesday, 4 October 2011
Although GLA has a long list of families, anxiously waiting to be matched with a baby girl, it is quite rare for a healthy newborn girl, the kind that so many parents dream of, to be admitted to our orphanage.
Today, a precious newborn girl arrived at GLA and my initial bedside exam and tests suggest that she is 'practically perfect'!
Sarafina is an 8 day old baby girl, who was relinquished for adoption this morning, by her mother. Sarafina's Mother was thourally counselled by our head Haitian nurse. Yes, this lady loves her daughter very much, she told us, and yes, she agrees that the baby is beautiful, but no, her circumstances are unlikely to change and she is struggling as it is, to raise her three year old son.
Sarafina was born to a malnourished and stressed mother. As a result, Sarafina's weight gain was compromised in the womb. The skin on her body is loose and dry and Sarafina wears an anxious, and very vigilant expression that signifies that she too, has been stressed by her early life experiences. She will need to be fed on schedule, around the clock to make sure that she doesn't develop low blood sugar. She will also need to be watched carefully for signs of infection.
I feel hopeful that this baby will thrive here. Her head circumference is normal for a newborn, which is a good sign that her brain has been and will continue to develop normally. Her length is also at the low end of the normal range, for a newborn and this means that she was probably not lacking good nutrition for too long in-utero.
With loving care, and excellent nutrition, there is every reason to believe that Sarafina will make a full recovery from her malnutrition, that she will grow and develop, and form the attachments with our staff that she will need to bond with her adoptive family, further down the line.
I was very aware this afternoon, that some of the tests I needed to run would be painful, and I was very careful to make sure that this baby's pain was relieved.
Thankfully, the simplest measures are very helpful to newborns who are in pain. Sarafina was swaddled, given sugar water and a pacifier and she was soothed by holding and rocking until she was calm and settled again.
As I finished feeding our newest arrival her 3pm bottle this afternoon and felt her tense body relax into the crook of my arm, I was glad that the simple things are the things that will probably matter the most to Sarafina, and I was glad that we could provide these simple things.
Sunday, 2 October 2011
There were too many foreigners here, he told me and he didn't want them staring at him and he didn't want anything we had to offer. Our children would be mean to him, our food would give him cholera, and our teachers would surely beat him, so no, he didn't want anything from us! He just wanted his Mum!
Although Sebastien's mother loves him she cannot cope with the demands of caring for her son. Sebastien was born with severe club feet and only began receiving corrective treatment last year. He has external fixators - pins driven through the bones of his feet and lower legs that are attached to metal rods and frames.
It was hard, caring for Sebastien under normal circumstances. Then, the house she was living in become unlivable after last year's earthquake. She has been living in a tent with her three children ever since. Sebastien is wheel-chair bound, his care and therapy needs will extend over months and years, and the family's living circumstances are unlikely to change any time soon. While his legs are in frames, and until he is able to walk, Sebastien will not be able to go to school, since Haitian schools are not accessible for children with disabilities. This is not the life his mother wants for him. She wants him to get the care and therapy he needs and she wants him to have a future beyond that.
Although we understand why his mother has given him up, Sebastien does not. In the days following his arrival here, Sebastien grieved hard. He was distrustful and suspicious, he was sad and angry, and he wouldn't eat or play. He had suffered a lifetime of teasing and shunning and rejection, and now, he would face that reality without his Mum. It couldn't get any worse than this, by his estimation.
Even in his sorrow though, Sebastien could see that there was something different about this place. Although it was not a hospital, there were lots of sick kids here. He counted one with cerebral palsy, and several on daily medications. There was a foreign nurse who was missing a leg, and a nanny who was a dwarf. She had had external fixators when she was a little girl, she told him. We must have seemed like a motley bunch of foreigners and Haitians, caring for children who weren't our own, even chronically ill and disabled ones.
More than once, we saw Sebastien watching us with a bemused and perplexed frown. One day, late in the afternoon at bath time, there was a smile dancing in his eyes, and he decided to share some of his observations with me. 'You bathe the children in warm water here! All through bath time, he laughed from deep in his belly and shook his head. His mood had lightened, just for a little while, but as I changed Sebastien into pyjamas, he grew quieter and more serious again. I was pleased that he had softened his heart and allowed a little bit of joy in but the grieving was far from over, and I knew that his moods would be changeable.
'Take me downstairs, Susan, to watch some television'
'I can do that, but you need to eat first, I told him.
'I'm going to eat again?, he asked incredulously? How many times do you feed the children, here?' I replied that we give them three meals and two snacks every day. His all ready serious expression deepened. 'These kids eat a lot,' he told me. 'They are the only ones.'
As Sebastien accepts a new routine, helping me to hand out supplies, doing rounds of the nurseries with me, and some learning activities, I am preparing him for a transfer to the toddler house. He is adjusting better than I would have expected at this point. Most of the time, he is happy and very engaging.
I pray that in the enclosed orphanage environment, he will find love and acceptance. He needs physical healing but more than that, he needs to know deep in his heart that he is beautiful just as he is, a child made in the image of God. Broken and beautiful.
So God created man in His own image; in the image of God He created him......' (Genesis 1:26)
Monday, 26 September 2011
His breathing was laboured and he had a dry hacking cough. Our Paediatrician was glad that he was all ready being covered with an antibiotic.
To her consternation and mine, though, no amount of oxygen would raise Bobo's pulse oxygen levels (measured across his skin's surface up to normal levels.The balance of gasses in his blood suggested a long standing problem that was keeping his oxygen levels low.
Despite covering as many bases as we could, Bobo remained lethargic over the next few days.I was concerned on Friday, to notice a very variable heart rate. More bedside tests showed another problem - Bobo had low calcium levels and his body was trying but not successfully compensating, by making his blood more alkaline. Under alkaline conditions, calcium is leached from the blood, into the bloodstream, where it is needed to help control heart rhythm and other vital processes in our organs.
Despite giving calcium and vitamin supplements at the highest doses, Bobo has gone on to develop muscle tremors - another sign of calcium deficiency. We have added in a magnesium supplement, to see if this will help Bobo to absorb the calcium in his diet.
Today, he looks much better and is behaving more like himself -looking around, cooing and cooing in his bumbo. He has an abundance of very facial expressions that we were treated to this after noon. What I really want is a smile,I haven't seen one of those from him in several months.
Sunday, 25 September 2011
It is relatively simple to secure the trust and confidence of a child whose home environment has been lacking. They find adequate food here, along with shelter, and clothing. They are allocated a key care-giver, who they quickly identify as a mother figure, and the children attach to these ladies. Of course, children who have been severely neglected may not have the capacity to trust us for a very long time. But if they have not been too deprived, they sense that things are looking up in their lives, and as they settle into the routine of the orphanage, they are usually contented enough.
Dawensly had a bad ear infection, but other than that, he had clearly been well cared for. He had also been avery loved.We could see that! Now, separated from his mother, I was concerned that he would experience as long-lasting sense of loss. I prescribed an antibiotic, together with regular pain-killers, hoping as I did so, that they would make Dawensley feel better and that he would associate feeling better, with his entry to the nursery, and that this assiociation would inspire the trust Dawensley needed to feel, to make a good adjustment.
Thankflully, that was just what happened. As soon as Daawensley started to feel better, he slid down from my lap, left the safety of my arms, and toddled off to explore the toys that were scattered all over the nursery balcony. In no time at all, an assertive, and forthright personality emerged. Clearly, I was dealing with a toddler, secure enough to identify a friend or too among the 24 other toddlers, and to share his food among the other children, friends or not, when he he'd had his fill. Does that make him sound like an angel boy? Don't be fooled - the sharing is a choice. He shares because he can. This is more about having the upper hand than being a sweet angel. Sorry if I just burst your bubble, but there are no angels here!
The great thing about this, in my mind, is that Dawensley is obviously happy here. On his third morning at GLA, he ran to greet me at 7am with a 'hi' and a wave. If I didn't know better, I would have thought he had been raised at GLA, I thought to myself. I'm glad that Dawensley was cherished at home. It has given him a security and a spirit to go forward with. I hope that whenever he looks back, it will be with a smile.
Sunday, 18 September 2011
One baby had to be started on IV antibiotics, after developing a severe ear infection. The infection has affected the glands in her neck, which, has become stiff and painful.
Another baby had to be treated for a urine infection. She was very lethargic and unwell and we were concerned about her. Naika is a year old, very pretty, very spoiled and definitely back to her usual self, now that her antibiotics have taken effect. She believes that she is a genuine Haitian Princess and if my observations are anything to go by, her nannies believe that too!
Faland was started on IV fluids on Friday, after developing severe diarrhoea and becoming dehydrated. Faland suffers from recurrent sinus infections and mild
asthma symptoms. She is recovering in the NICU today.
Even before these children became sick, I was anxious about our medical equipment. With 3 oxygen concentrators and 2 incubators malfunctioning, as well as our only warming bed for preemies, I was worried about our capacity to care for critically sick infants. I lamented that we needed someone to come and service our equipment, urgently. It didn't seem likely that anyone with the knowledge and skills needed to do this job in Haiti would arrive, so imagine my surprise when Mardochee's adoptive Father came at the beginning of the week, and told us that he specialized in servicing medical equipment!
Within days, he had most of our faulty equipment in working order, including the 30 year old warming bed! I have told Mardochee's Father to plan on staying for a week, when he comes to take Mardochee home to Canada at the end of the adoption process. Medical equipment does not stand up well to the heat and humidity of Haiti, but the repairs that Mike made has extended the life of several critical pieces of equipment. This is a great blessing to me, and especially to our babies - the ones that are in our hands now and the ones who will come over the following months and years.
Sunday, 11 September 2011
On Tuesday, Miss Sonia was struggling with this cold and had to be started on oxygen. Sonia, though, was not sick enough to stay out of trouble trouble - chewing on the oxygen cannula (it was supposed to stay in her nostrils!), tearing the oxygen probe off of her toe (she ate that too), pulling the tubing off of her oxygen machine and detaching the cord from her pulse ox probe. Although I made a great show of admonishing her, I was secretly pleased that she was feeling well enough to cause trouble.
'Young lady, if you don't leave those tubes and wires, I'm sending you down to the office on portable oxygen for a time-out!' I told her in what I think was a fairly convincing tone. I didn't want to scare her, but I did wag my finger for effect ;-) Sonia seemed to consider my words very seriously for a few seconds.....and then her face lit up a smile and she extended her arms for a hug! She got a hug but she was also told that she was not off the hook. Sonia has a stubborn streak and a lots of winning ways. She quickly winds the nannies and nurses here around her little finger!
Before her heart surgery, simple colds lasted for up to a month, and lead to pneumonia, heart failure and several weeks on CPAP and oxygen. This time, after a short course of steroids, Sonia was off of her oxygen in two and a half days. Heart surgery really has changed the course of her life.
On Wednesday, Bobo, our 12 month old baby who weighs around 7lb and who has several birth defects, returned to the NICU severely dehydrated and needed IV fluids. He is a very frail infant, who quickly destabalizes. Although he is recovering well from his current illness, I see signs that his condition is deteriorating. He is very delayed in his development, and seems to be regressing in some areas. He has the virus that is going around the nursery and he sometimes needs suction to clear secretions that get stuck in his throat.
The great thing about having medical capabilities is that we are able to treat children right away, at the orphanage instead of sending them to a hospital in the city. Our medical programme is expensive but it pays dividends for our children, who get the care they need, provided by staff that they know, in a familiar environment where they feel safe and loved. If you have access to medical supplies and would like to help keep us stalked with essential items, please visit this page on main GLA blog for an updated list of the things we need.
Please forgive any 'typo's'. GLA's internet is telling blogger and other websites that they are being pulled up in Germany. As a result, the spell checks on those sites are German!
Sunday, 4 September 2011
Sarah survived. Born 5 weeks early, she was growth retarded in the womb, acutely malnourished and very weak when she arrived at the orphanage. She battled pneumonia, septicaemia and a viral infection in her first weeks with us.
I was told that if she survived, she would almost certainly be developmentally delayed, since her brain growth had been compromised in-utero
I asked people to pray. It was a great comfort to me in those days, when Sarah's life hung in the balance, to know that so many of you were praying, especially my own family and my Dad's Catholic men's group at home in Scotland.
Four and a half months later, Sarah is healthy, thriving, beautiful and alert. She is also developmentally advanced for her age! And just so we are clear on the matter, this is not my opinion. Sarah is healthy and thriving according to her Paediatrician and developmentally advanced according to the Psychologist that assessed her
'You can tell she is just so bright!' a vistor remarked recently. I nodded, yes, in a matter-of-fact way. It is not in my nature to ooze emotionality, but joy and mirth were bubbling just below the surface.
You prayed. God delivered. Sarah beat the odds and I am so thankful.
Saturday, 3 September 2011
Bobo has several congential malformations. His vision, hearing and brain development are affected and he also has narrow airways and problems with his digestive tract
Despite 7 months of loving, dedicated, one-on-one care from Miss Vicky, we really haven't seen the improvements in his general health and development that we had hoped for. Bobo receives high calorie, pre-digested feeds every 2-3 hours, round the clock, but he is still a falure-to-thrive baby, who doesn't grow or gain weight. He has low muscle tone, and is unable to hold his head up for more than a few seconds at a time. Not only have we not seen any improvements, we have seen some signs of deterioration in his condition - increased irritability, strange, unexplained fevers and loss of his sucking reflex.
Honestly, I didn't expect Bobo to live to be a year old. Honestly, I don't that Bobo will live to celebrate another birthday, but then, I am not the one'in the know' on these matters
'Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.' (Psalm 139:16).
Sunday, 21 August 2011
We have experienced the ebb and flow of guilt and grief, anger, doubt and despair. Sandia. Edna Kervens. Three precious lives so hard fought for, and lost. It is hard to bear. Our latest loss is a painful lesson, we all agreed. We wished we had kept Kervens here longer.....
Days before Kervens died, a colleague directed me to be alert for the presence of God. I am going to be completely honest with with you: there were days last week, that I did not feel God's presence. I wondered what we had achieved upstairs in the nurseries. We had nothing to show for our efforts, it seemed, and no hope to offer these babies.
Mid-week, the despair receded and a wave of thanksgiving washed over me. Our God did not doubt the product of our work here, and the hope he whispered, was without question.
[Love] always protects, always trusts, always hopes, always perseveres (1 Corinthians 13:7).
He knew from the outset that Kervens would die. He wanted him to know before he left this world, that he was worth fighting for. And loved.
As Edna's life faded away, I communicated to her the best way I could, that she was going home. I couldn't do that for Kervens. I hope it isn't too naive or sentimental of me to believe that as he made his last earthly journey up the mountain to GLA on the morning of the day that he died, he knew that he was returning to us and that everything was going to be ok.
God knew the outcome at the outset. I am glad I did not, but if he calls us to love a thousand babies into his arms, I will do it a thousand times over.
Sunday, 14 August 2011
Just after mid-day, the NICU staff called me to come urgently. I ran. Dixie reached the infant just ahead of me. I didn't know the shrunken frame of the baby on the table, I was sure. And then....... Oh God, oh no! It can't be! Kervens was still warm, but he was not breathing, and he had no pulse. We tried to resucitate him. It was too late. Only just. But too late.
Why, Lord? Why! Our miracle baby, the one we pulled back from the clutches of death twice was lifeless in front of us. We had discharged him on Wednesday, fat and beautiful and healthy, with formula and bottles and diapers. Now, the whites of his eyes were blue and his eyes were dark and sunken. The skin covering his stomach and his thighs was wrinkled, and his mother couldn't explain any of it. As I heard how Kervens writhed in pain all night last night, I struggled to see the goodness of God. This just looked like cruelty from where I was standing.
Our God, the one with a plan for each life; a plan to prosper us and not to harm us. Our God , the God of mercy and love had has allowed Kervens life to be saved not once, but twice, only to end like this? Where is the hope in that?
I am not in the mood for plattitudes today. I don't really want to hear that Kervens is at peace, and that his suffering is over. I want justice for him in this world. And I I don't want God to promise to make something good out of this tragedy, I want him to stop any further tragedies from happening.
The answers to the whys, the bible instructs, are too high for me now. I will have to wait for eternity for those. God sees through the darkness that envelops us tonight but we don't.
'My soul is cast down within me;
therefore I remember you
from the land of Jordan and of Hermon,
from Mount Mizar.
Deep calls to deep
at the roar of your waterfalls;
all your breakers and your waves
have gone over me.
By day the LORD commands his steadfast love,
and at night his song is with me.'
(Psalm 42: 6-8).
We are always told to encourage one another in the hope that is in Jesus, but I think we need to be honest too, that the demands of faith, lived by blind sight, are tremendous. The cosolation in this, the only one I can find, lies in that deep calls to deep connection to a God that knows that this is very hard for us, who knows that it hurts, who feels it, and who cries a deluge of tears, roaring at the pain and the injutice of it all. Deep calls to deep.
Sunday, 7 August 2011
So when, at 8am on Monday morning, news reached me that a set of tiny twin girls were downstairs, I was ready. The girls weighed in at 2lb 1.7oz and 2lb 0.3oz. They had been born 9 hours before, five miles away at the Baptist Mission Hospital in the mountain village of Fermathe. They were icy cold and they were not breathing well
The rest of the day went by in a blur, as we warmed the babies, and struggled to get them stable. I remember I started working on Sandia, the smallest twin, first. She was showing more signs of respiratory distress. I got her on CPAP, and directed Mme Bernard to start her sister on oxygen.
I remember that we could not keep Edna's CPAP working. Two oxygen concentrators were down. Two incubators malfunctioned. I was glad for my contingencies! I remember being caught between the urgency of Edna's breathing problems, and her twin sister's low blood sugar. I remember getting an umbilical line into Sandia, then Edna.
Starting them on intravenous fluids, giving vitamin K to prevent blood clotting problems and brain bleeds, antibiotics, medications to stimulate them to breathe.... It was difficult to get the girls warm. When their temperatures did rise, the consequences of prolonged cold stress caught up with them. Oxygen levels falling, heart rates fluctuating, me running between the girls at shift change over, both of them apnoeic...
As the days passed, we lurched from one crisis to another. Sandia's temperature would not stay in the normal range, and whenever her CPAP became disconnected, her airway would collapse. She needed a high flow of oxygen through her CPAP and once or twice a day, we would have to hyperventilate her with an ambu bag, to blow of excess carbon dioxide build-up.
Edna's immature digestive system could not process sugar. Her blood sugars were dangerously high and her tiny body was forced to burn fat for energy. There were two problems here: Edna had very little fat to burn, so as the days wore on, she became emaciated. And as the days wore on acids that were produced from the break-down of body fat, accumulated in her blood. She needed regular doses of sodium bicarbonate through her umbilical line, to neutralize the acids.
I worked double shifts with the girls, starting at 5:30 in the morning. The extreme heat in the NICU, and being on my feet all day made my feet and ankles swell, I was dehydrated, having muscle cramps, and my whole body hurt. I was exhausted: I was woken in the night more than once to help get a struggling baby out of crisis. By Thursday, Sandia and Edna were stable, kicking their legs and waving their arms in their incubators.
Sandia had became anemic and needed a blood transfusion, but she improved significantly when she received it. Edna was on room air CPAP. There were reasons to be hopeful, Soon, the girls would be well enough to tolerate milk feeds. They would stop burning body fat for energy. I was running on adrenaline and I was elated. We were winning, I was sure. Finally, we were winning!
I wish that I could tell you today, that everything we did, paid off, that all the knowledge we gained from working with babies like Jonathon and Sophie Dora had saved two twin girls lives.
Instead, I have to tell you, that Sandia died at 11 am on Friday morning, from a collapsed lung, or an airway, obstruction, we don't know.
As we were working on Sandia, her sister, Edna, began having breathing problems. Less than an hour after her sister died. Edna stopped breathing all together. Blood tests showed extremely high acid levels in her blood. Dixie and I worked until late into the night. Edna legs were stiff, and she wasn't moving the right side of her body. Her pupils were dilated and we were afraid that she had had a brain bleed. We made a call to a neonatal nurse practitioner in Pennsylvania. Eventually, after 6 hours of ambu-bagging, and lots of drugs, Sandia responded to treatment. She opened her eyes, she began moving, and eventually she was breathing on her own.
The next morning, her exhausted body gave up the fight. I held her on my chest. There was a flicker of recognition across her face as Edna relaxed to the rhythm of my heart beat under her head. She remembered her mother's womb, I'm sure. A safe, warm, watery place, where she floated, and where there was no struggle. Where her mother's heart beat consistently and reassuringly above her head. I hope she knew in those moments that I held her, that she was loved dearly, and I hope I communicated to her in a way she understood, that everything was going to be OK.
At 9:53 yesterday morning, Edna was pronounced dead.
My dream came true, and then it was dashed. But oh, that is a small thing, compared to the dreams of Edna and Sandia's parents.