During the birth of a premature baby or sick newborn people often keep a diary. This is a great way of keeping all the details of what is happening in one place. Keeping the details written down will allow you to look back on them and share them with your child later. I encourage all parents both Mum and Dad to keep a diary about your baby’s arrival be it a full term sick newborn or premmie baby. I also encourage grandparents and other extended family members to write down their own thoughts too. I personally wrote in one every day and it was a great way to also get things off your chest when things just became too much. I also made a diary with my son about his sister as he was 5 years old at the time and I wanted the teachers and children at the school to understand that this was a very big experince for him. I will post later more about that.
This is the personal diary from an amazing mother that I respect very much. She is a strong Mother who is sharing what she experienced when her daughter was born at 39 weeks gestation after complications and the events that came after that.
Keira-Lee – 39 Weeks
Wednesday, 1st February 2006 – Approx 2pm I had beginning having some contraction pain in my lower back and stomach, and a “show”, all while out to lunch with Nana and Lachlan. We went home where I thought it had been a while since I had felt you move. I had a few glasses of soft drink and some lollies to see if you would respond to the sweetness, gave you a rub, but you still would not move. 4:30pm I rung the midwives at Wyong Hospital, who asked me to come up and I was put on the monitor. At Wyong I was very dehydrated and your heart rate was de accelerating. I was sent to Gosford Hospital for further monitoring. Approx 6:45pm Daddy and I arrived at Gosford, waited in the waiting room for about 20mins, still having contractions for a bed to go to. I finally got a bed, and was placed on the monitor again. Your heart rate dropped and the registrar doctor was called in. he immediately wanted to do a caesarean. They decided to wait and see has your heart rate had come back up. But within minutes we saw and heard your heart rate go from 138bpm to 58 bpm and the alarm went off on the monitor. It was decided to do a caesarean straight away. I was beside myself! I was so scared and terrified. I did not want a caesarean but I knew I had to do it to save your life. I told them I did not want to be awake through the operation, and repeated it over and over. Nana and daddy told them too. They said it would only be a spinal block as there was not time for a general. I cried and cried as they wheeled me out the door past Louisa who had just arrived. They ran my bed through the hallways to surgery. When I got there, there was people everywhere trying to tell me what was going to happen. I didn’t comprehend any of it, except that they must do a spinal block. I just kept crying and crying! Nana sat be my side while someone held my shoulders forward as they did the spinal block. It hurt a lot, was uncomfortable and I cried shaking my head. This should not have been happening, we should be at Wyong having a normal safe birth. I was so worried that you would not make it, I was scared. They laid me back and I could see them preparing my stomach for the operation. I closed my eyes and cried. They asked I f I could feel ice on my stomach, I could and if I could feel something else which I said yes, it felt like sharp prickles. They said no good, she needs a general. As my nose ran with mess and I cried, they shoved a mask on my face and said take deep breaths. I said I couldn’t, that I needed a tissue, and that was the last thing I remember. 8:55pm You were delivered. The cord was wrapped around your neck and you required full resuscitation and cardiac massage. You were wheeled out of surgery, 3 people and nana ran up the hall to special neonatal care. Nana thought you were dead. You were being resuscitated with a hand held pump. Nobody said much to nana, she just stood back scared. You had swallowed your poo and it went onto your lungs when you were in the womb. Nana went out to get daddy straight away. They pumped out your tummy and said your body would absorb what was in your lungs. After a while you were breathing on your own. An x-ray was done on your lungs. They inserted a cannular and you had a plastic space helmet for the oxygen and a heart monitor. As soon as I came out of recovery daddy, nana and Louisa came to see me in the ward. Nana said it was so funny watching me come out of the general. I was still heavily drugged and numb all over. I had staples in my belly. I was very active and fidgety. I didn’t know where you were and couldn’t really comprehend what was happening. Louisa and Nana left to go home around midnight. Daddy helped push mummy to see you in special neonatal care just after midnight. We spent over half an hour with you, which I have trouble recalling now. You were breathing on your own with a little bit of oxygen. We left to get some sleep believing you were ok.
Thursday 2nd February 2006 – I messaged daddy at 6am asking him to come back to the hospital. You had been having seizures since 3am. You had to be transferred to a hospital with intensive care. They had a lot of trouble finding a bed for you and I. John Hunter hospital had a place but was filled before the helicopter took off, so you ended up going to Liverpool hospital. Pop and Uncle James stayed with you while you were prepared for the flight. You were brought in to say goodbye around 10:30am. You had tubes and sensors all over your body and were placed in a life support system for babies. I was devastated; I didn’t think I would see you again. We said goodbye by touching your hand and feet through the portholes, and you were off. Nana Denise and Pop Fred rushed in to see you and I but daddy was meeting them in the hallway as your flight took off. Nana Rhonda and Pop Fred were heading to Liverpool to be with you while daddy stayed with me at Gosford till I could be transferred. It was the worst day ever, not knowing how you were or what was happening. I cried all day! I was able to be transferred late that night and finally got to see you at Liverpool around 11pm. I was so glad to see you but so frightened at the same time. You had a lot more wires, monitors and machines on and around you than I had ever seen. Your body was swollen from all the medications they were giving you. You didn’t make a sound, just slept most of the time away.
Friday 3rd February 2006 – When nana, pop and I arrived to see you this morning we were having an EEG test. This test allows the doctor to see your brain waves and how many seizures you were having. There was not a spare spot on the top of your tiny head for another wire during this test. You didn’t squirm or cry, just slept through it. Pop stood beside the lady conducting the test, trying to soak in what the test meant. They later placed a mask over your eyes and placed your earmuffs back on to reduce the stimulation, to keep you calm and relaxed. Daddy came to visit with great grandma. We had a meeting with both of your doctors in a quiet room, who told us what was happening with you at this point. The doctors suggested bringing the nana Denise and poppy Fred, and Lachlan to see you. Daddy stayed the night with nana in the hospital hostel.
Saturday 4th February 2006 – Doctor VJ told me in this morning that you had been struggling with the ventilator, that you appeared to be trying to breath on your own, fighting the ventilator. Pop drove back down to visit bringing down nana Denise and poppy Fred, and Lachlan to see you. We spoke to doctor VJ again we updated us with your progress. Later in the afternoon doctor Vj said to me that they might consider taking you off the ventilator tomorrow. I was called down in the ward at later that night to say at 10:30pm they were taking you off the ventilator. Nana and I were both there when they took you off the ventilator. Doctor Vj told us that this was a huge step, that it would tell us if you had any damage to your brain stem, that when they take the ventilator off they were not sure if you could breath on your own or not. They had an emergency resuscitation pump ready in case it was needed, two nurses to take it off and the doctor watching along side us. I was sweating, shaking and so nervous. When they took it off, you breathed fine on your own. It was amazing. I was asked if I would like to hold you for a few moments while they changed your bed and of course I jumped at the chance. It was a quick hold, but it felt great.
Sunday 5th February 2006 - When I came to see you first thing in the morning you looked so different. We could see your gorgeous face and you were wearing a little hospital dress that the volunteers at the hospital make. During the night your oxygen rate dropped a little and they waved some oxygen over your face and you picked back up again, breathing well on your own.
Monday 6th February 2006 - Today was another big day. The nurses removed one of your cannulas and stopped all your medications, just keeping you on fluids. In the evening they started you on 5ml feeds of breast milk through the tube every 3 hours. We also tried you with a dummy to see if you were able to suck. You began to lick it at first not sure what to do with it, and eventually began to suck it a little. We kept at you to suck the dummy, as this would be another big step forward if you could suck within 7 days of birth. You eventually got the hang of it and sucked the dummy really well.
Tuesday 7th February 2006 - At 6am they had put your feeds up to 10mls, at 10am they had put your feeds up to 15mls and at 12pm they said you were going really well with your feeds so they put them up again to 40mls every 3 hrs. They moved you forward a row in the row, which was great, cause as move down the room you get closer to the door to come home. At 2pm you were sent off for on MRI on your brain and this would tell us the amount of brain damage you had suffered. Again another nervous time for us all. At 4pm you were placed on 60mls feeds and they took your other cannula out. At 7pm I was able to give you a bottle, which was not an easy task. The nurse had to guide me through the techniques of getting you to suck on the bottle. We had to stroke your cheek to get the reflex working and your mouth to open wide. We had to rub the bottle on the palate in your mouth and offer you some jaw support. It took a long time for you to drink your bottle, and you drank 57mls for me. The nurse took your nose tube out, your umbilical line out and said they may move you into a cot.
Wednesday 8th February 2006 – What a surprise, you had moved two rows forward and were laying in an open cot without the radiant heater. You were able to have your first bath today, at one week old. The nurse bathed you while dad, nana and I watched. You loved it; you were so relaxed in the water. Another water baby for the family. You weighed 3295grams, your length was approx 52cm, and your head circumference was 34.5cm. They placed you back on one of your seizure medications, Phenobarbitone, just 2mls twice a day orally, as you were having some small tremors in your chin and hands. You also had your second EEG to see if there was improvement from the previous one.
Thursday 9th February 2006 – Vj spoke with nana and I today about the results from your second EEG and the MRI results. The EEG showed only one seizure, not a clinical seizure. There was a great improvement from your previous EEG. The MRI results showed that there was mild damage to part of your brain, which may indicate that you will have delays with your gross motor skills and language. This was a lot better than the doctors had predicted. We were all as happy as we could be with this result. These delays we can help you with the use of occupational therapy. They also decided today to place you on 4-5hour demand feeding, and allow you to drink as much as you wanted. They placed you on 100mls of breast milk for each demand feed. Friday 10th February 2006 Today we started organising with doctor Vj to transfer you to Gosford Hospital on Monday. You had your hearing tested and passed on both ears. We spoke with a physiotherapist, who gave us some exercises to do with you, hand exercises, tummy time and using a bunny rug under your head during nappy change times. Nana and I observed the nurses giving you your phenobarbitone through a teat so we could do this at home. The nurses hooked a mobile up beside your cot, which you looked at for quite some time. Saturday
11th February 2006 – Daddy, Vanessa, and Lachlan came to stay the weekend in the hostel with nana. I gave you a bath and a massage for an hour today. Good day of feeding and sleeping for hours at a time. Daddy and I helped to give you your phenobarbitone through a teat. It was not easy as they squirt the medicine and the breast milk into a teat and get you to suck it through; you cough and gag as it takes your breath away. You were alright but it’s a horrible experience.
Monday 13th February 2006 7:30am – We pack up all our belongings ready for the trip home to Gosford Hospital. You were laid in a crib for the trip home in the ambulance. We travelled together with one of the nurses from Liverpool. When we arrived at Gosford, daddy came to see us. We stayed with your for the day.
Tuesday 14th February 2006 – Nana and I came to see you. We spoke with Dr Hong the paediatrician. He was happy for us to take you home in the afternoon and to come and see him in his office in two weeks time.
Wednesday 1st March 2006 – Nana and I took you to see the paediatrician; he was away this day so we had his locum Vicki who was the paediatrician that saw you at Gosford when you were first born. She was happy with your progress and that you were still gaining weight, weighing 3.66kg. She gave us a referral for the physiotherapist and for your EEG. Also a prescription for some more phenobarbitone.
Thursday, April 20th 2006 – We have been to see Dr Hong, Keira-lee’s Paediatrician we have the results back from her EEG. The results have back normal!! No seizure activity noted. What a relief, awesome news! She has gotten through another hurdle! Now we wean her off her medication, continue with physio, which is some fun time.. and watch our angel grow.
Saturday, April 29th 2006 – Yesterday we had another trip to physio.. was good fun. They have lots of great toys for Keira-lee to explore. We are laying Keira-lee on her tummy and side to build up the strength in her back and neck and encourage her to bring her hands into the middle of her to play. She is coming along fine at 12 weeks old.
Thursday, July 13th 2006 – Keira-lee is attempting to roll over, can get to her side but not onto her tummy. She has had her developmental check with physio and seen her paediatrician..overall they are happy with her and we are stoked! She is a little stiff in her upper body with high-toned muscles and her reflexes a little slow. She is on the lower side of the growth chart, still in her 000 clothes. We have introduced some solids, as she is not interested in full feeds with her bottle and to improve her weight gain. She likes pureed apples and mixed vegetables.
We invite Rachel and Keira-Lee to update us on where they are now as I am sure lots of you would like to know. Please leave your comments of support below for the two amazing girls and their family. We also invite you to share your story with us.Please contact us for more details above on the contact tab.