Christmas in NICU & SCU 

Coping with having a baby in NICU or SCU during the Christmas period can be extremely difficult.  Family and friends are visiting, celebrating and gathering together. It can be very challenging and hard to have one of the family members in hospital at this time. Some of our LLT families would like to share their thoughts and experiences of having a baby in hospital at this time. Hopefully some of their ideas or advice might make it that little bit easier for you if your baby is in NICU or SCU during the holiday season. 

·  Don’t push yourself. If you don’t feel like you can make it to every holiday celebration or can’t find the time or energy to address Christmas cards, don’t do it. People will understand. Take the time you need to rest, care for yourself and visit your baby.

 ·  Find enjoyment wherever you can. It is normal to be torn between a desire to participate in family traditions, and a yearning to be in the hospital as much as possible. Parents may feel guilty not only for spending time away from their child, but also for enjoying themselves. Enjoying yourself is okay. However, if you do not feel up to joining all of your family’s activities, enjoy one or two. Then, head back to the hospital.

·  Bring close relatives to visit your baby and have a little holiday celebration at the NICU. Find out how many people you can have at the bedside, and go open a few gifts with your baby.

·  Make some Christmas memories to share your baby with friends by taking photos or a video to send. Add a baby’s first Christmas hat or bib to the photo if you can. Hanging a small decoration for your baby on you Christmas tree can assist making it feel like your baby is with you in spirit and when hung on the tree in future years can remind you how far your baby has come.

·  Take advantage of any parent support services provided by your hospital. Talk with achaplain, social worker or support group

·  Start new traditions if old ones are no longer as meaningful.

·  Try to focus on the positives, every gram gained is a miracle.   

http://www.kristiemcnealy.com/coping-with-christmas-in-the-nicu http://www.suite101.com/article.cfm/premature_babies/30310                                     ____________________________________________________________

Millie’s Story

(28+4 weeks), first Christmas in 2005 (now almost 3).  Millie wasn’t due until Jan 30 so we had a Christmas with her we weren’t expecting.  She got a huge stocking full of presents from my family which we opened in front of the webcam as all my extended family had a nasty flu bug so my husband and I were in quarantine!. 

Mum - Merran Taylor                       _________________________________________________________

Layla’s Story

Christmas of 2006 was particularly difficult for us with Layla still being in hospital.  She was 4 months old and not doing very well (she hadn’t even progressed out of ICU yet) and in the back of our minds we couldn’t help thinking that she should have been our 3 week old Christmas baby. We had as a rough guide thought she may be home by Christmas but this was not the case and we still could not see an end as to how long Layla may have to spend at hospital.  We chose to visit Layla (as a family with her brother Hunter 2, and her sister Milla 3) first thing in the morning for breakfast. We were overwhelmed by the Christmas stocking that was beside her isolette, so many beautiful gifts. Some of our extended family joined us in hospital for a while and then we went to my husband’s sisters place for lunch. We visited my parents for an early dinner and then my husband and I returned to the hospital to spend the evening with Layla. The nurses were so understanding at the hospital. I cried a lot that day for what could have been and what should have been, but also was extremely thankful for what was……our beautiful baby girl.  If I was to offer advice, it would be to acknowledge that it is going to be hard, but to try to live in the moment and remember your baby’s first Christmas. Take photos, cuddle him/her if you can because if your child is anything like Layla you will wish the time away and long for the day when they are perfect. This is them now and they are incredibly strong. Try to see the good. 

Mum - Natasha Hopkins                        _________________________________________________________________ Sophie’s Story 

“What ever you do don’t push” instructed my Obstetrician, ‘you are 5cm dilated and are going to have your baby soon’. ‘We need to do an emergency caesarean to give your baby the best chance of survival as she is breach and so tiny’. I was just 24 weeks pregnant and all I could keep thinking was surely this was a really bad dream. I kept looking at my husband wishing he would tell me everything would be alright but he was just as scared. It was 7am on a Sunday morning; we had driven the usual hour to the hospital in about half that time! Earlier we had rung our Obstetrician on call who had calmly suggested we should come on in for a check up. I had been experiencing back pain on and off over night and by the time we had got into the car my contractions had started. Despite having a bicornate uterus and being monitored extra closely everything seemed to be going along well.   My last check up and ultrasound a week ago was fine and back pain was not unusual for me as I had experienced sacroiliac pain on and off during most of my pregnancy.  I had never been exactly sure of my due date as my menstruation cycles often varied, and there was a lot of discussion about my due date and double checking as the hospital’s protocol was that babies under 24 weeks gestation were not routinely ventilated and there would be no time for proactive steroid injections to assist with the baby’s lung development before birth. After double checking it was determined that I was 24 weeks to the day and they were going to do everything possible to help our baby survive.  Initially this went against our thoughts about resuscitation as I was terrified that our baby would be at risk of complications and the best thing would be to let nature take its course. To this day we are eternally gratefully to the Neonatologist who made this heart wrenching decision for us based upon our situation.  The rest was a blur as various specialists briefly introduced themselves as I was then wheeled off to theatre, terrified of what lay ahead. Sophie was born that morning, December the 5th at 8.34am, weighing just 585g and 30cm long. I remember waking up and dozing off for most of the day vaguely aware that our daughter had survived and was in intensive care. Around 10pm that night when I woke more fully I felt an overwhelming need to see my daughter before the day was out, what if she did not survive the night and I never got to see her alive? I forced myself to get up, get into the wheelchair and to go and see her that night with my family.  Sophie looked so thin and fragile, her tiny hands the size of your finger nail. She required a ventilator to breathe and had various drips and lines inserted into her translucent skin to give her drugs and monitor her vital signs. She was alive and she was a fighter! The nurses said she cried when she was born and initially started out on CPAP but got tired and had to be ventilated. I felt like such an outsider looking at her through the glass of her incubator, unable to hold or touch her.  When I returned back to my room, the night nurse casually asked if I intended to breastfeed? Initially I didn’t know how to answer, could someone who had given birth at 24 weeks by emergency c section be able to breastfeed? Little did I know my initiation into the extraordinary world of NICU and all its foreign aspects including expressing and feeding your baby 1ml of milk at a time through a nasogastric tube had begun.  Sophie experienced most of the complications of being born so early and therefore had quite an eventful journey in the intensive care unit. She required medication to help close a hole in her heart, keep her blood pressure stable, fight multiple infections, help her breathe and for pain relief. She also required many blood transfusions due to the constant sampling of her blood for various tests and an endless number of x-rays and ultrasounds and a lumbar puncture. On the Thursday we had Sophie baptized in her plastic house. It gave us such strength as we felt that she was in God’s hands and what ever will be will be.  The next day I was well enough to go home. I had decided not to take up the accommodation across the road as I felt that I needed to retreat to my own surroundings at home. I would try and get a good sleep at night and then come in late morning and stay until the evening when Dale would meet Sophie and I after work. I think that this routine saved my sanity but did nothing for my nerves when the phone would ring in the middle of the night and I would imagine it would be the hospital calling with the dreaded news that Sophie was in trouble.   For three weeks we sat and prayed each day beside our daughter’s enclosed cot, watching her fight and fight. It had been touch and go on many occasions, initially Sophie had been ventilated on just room air but as her blood born Candida infection progressed so to did the amount of oxygen she was on and she was transferred to high frequency oscillating ventilation. She required cytotoxic drugs as a last resort to fight the infection and her blood pressure was critically unstable. I remember the doctor’s saying (thinking they were out of ear shot) ‘the only thing keeping this one alive is that she is able to tolerate her feeds’.  I decided to do some last minute Christmas Shopping on Christmas Eve and caught the tram down into the city mall. After I had finished and was about to return I had a sudden thought that I had not go anything for Sophie. I settled on a small candle with her name on it, but as soon as I had paid for it I could not stop crying.   Christmas has always been such a happy time in our family it was hard to feel alternatively numb and sad at this time and be overcome with tears so often.  Christmas morning we went in to see Sophie with heavy hearts thinking will this nightmare ever end.  Words cannot describe what we felt when Sophie’s nurse turned to us and said ‘would you like to hold your daughter this morning?’ We sat there for two hours nursing our little one with all her tubes and lines taped to us so she would not extubate herself accidentally. It was the best Christmas present we could have ever wished for, there is nothing like holding your child for the first time.  We were late for Christmas lunch with our families but we did not care! From that day forward Sophie had turned the corner.    Over the next three months she slowly began to grow into a baby. Gradually she started to put on weight enabling her to control her temperature and sleep in an open crib. She was weaned off the ventilator and oxygen and learnt to breathe by herself. I started to look forward to a daily ‘kangaroo cuddle’ with skin to skin contact and being actively involved in all her cares (nappy change, sponge bath and feeds). I continued to express so that she could be fed breast milk through a feeding tube into her tummy. We tried countless attempts at breastfeeding, but Sophie did not have a strong enough suck and ended coming home bottle fed. I had always wanted to breastfeed and was fortunate enough to be able to express milk until Sophie was 12 months old.   After 118 days in hospital, a week after Sophie’s due date, we finally took our precious bundle home, she was finally our daughter to care for. We will be forever grateful to the wonderful and caring staff at the Royal Women’s Hospital and Francis Perry House that she was given a chance of survival. Sophie continues to amaze us and we never take for granted each little milestone that she achieves. She has been readmitted three times to hospital due to Bronchiolitis secondary to RSV over the past four years but each time she requires less medical support. Apart from this she has no ongoing medical issues and is thoroughly looking forward to attending kindergarten next year with her ‘big’ cousin who was born full term, a month after Sophie.  She may always be small in stature compared to her peers but she has such a fighting determination and cheeky grin that will capture your heart.

Mum - Wendy Taverna