Mark's story - Jack
It's amazing the feeling of getting the confirmation your wife is pregnant and the realisation that life is about to change. The second thing you think of is, "what have I done?!" Then comes the reality of nine months of love and support until your bundle of love turns up.
My nine months was only 28 weeks. Marion was displaying slightly higher blood pressure throughout her pregnancy, but not enough to cause a concern. Everything suggested baby was doing well. We did the 20 week scan and our bundle of joy was smaller than normal, which was put down to having our dates wrong, although we did question this. (Please forgive the first time parent syndrome here. It was all new to us.) We carried on with our midwife checks and all was fine except when the blood pressure shot through to 180 /110 in the 27th week. One morning here I was taking my wife to work, and in the afternoon going to National Women's Hospital as Marion's blood pressure was dangerously high. What started out as a normal working day turned into a 4 month journey of emotional highs and lows.
This was a day I won't forget. From the time of entering MAU and being told that it's a wait-and-see game with no guarantees, to eight days later when our son Jack turned up. We were prepared for the event, that this situation was nothing more than a day-by-day basis as to when our baby would be born, and also monitoring to ensure that Marion's health was also ok. To help us get an idea of what things would be like with our baby we were taken to the NICU and shown a baby that was roughly the size of what ours was going to be, 750 grams. Up till then our preparation for parent hood consisted of reading books, we didn't get to do the classes at all. These were now replaced with a video session on what happens with a caesarean and what happens in the NICU.
Jack weighed in at 800 grams, and came out at 18:16 on 23rd May 2003 via a semi-elective emergency caesarean. He was diagnosed as IUGR Chronic lung disease and raft of other things, and was immediately put on every tube possible that would make a petrol head envious. The seriousness of the situation was dampened by adrenaline to keep you going through this. When they say the birth of baby is an amazing life changing experience, the birth of a baby that looks like a baby bird is one that you won't forget, or can't forget. You see it glimpse for glimpse and are given the choice of staying with the baby, or staying with your wife or partner. Both need you just as much, but how do you choose when both are in equal danger? I chose to stay with Marion as she was my wife and partner for life (and she had the hardest right hook at the time)!
When Jack was born you see the miracles of modern science work their wonder on something that by rights, should still not be born. Jack was on a ventilator for 28 hours and was told off by the nurse in the first 24 for moving around too much. Babies of his size needed rest to conserve their energy for growing, but I doubt Jack heeded that advice as he was active from the first day. Seeing him in the enclosed incubator was like watching a fishbowl at times just peering in at times to make sure he is moving and also that he is still growing and behaving. To break the tediousness during this time we would always have a nightly routine of "putting the bird to bed". Covering the incubator to shield out the light was always the way to deal with a hard day. It also helped with closure to know we still had some semblance of control of his care.
The amount of tubes and pure fat injected into this lad to make him grow was amazing as he had a lot of catching up to do, and we celebrated every gram of weight that he put on first in single digits, then the 10's then hundreds, all watching the baby grow and develop in front of your eyes.
To see the natural development, and see tubes being removed one by one as Jack was not needing them was always a source for encouragement and celebration to see. Also seeing Jack spend more and more time off CPAP until he spent 1-2 days. Coping with setbacks also was something we struggled with as Jack went off CPAP, had his 6 week injections then went back on, lasting on low flow for the rest of his time in hospital, and finally going home on an oxygen tank. He was also had hernias which had to be repaired before we left hospital. When you are faced with a long stay in hospital, you are always kept informed of your baby's development and health. We only had one exception to this, when someone forgot to tell us what a hyperspaedias was, and how easy it was to correct with surgery. This was the one time we had a meltdown, but miscommunication was the cause and was easily rectified, although it did take a couple of stress attacks to get over it.
We were in a room of four, with another baby Jack in the same room making it interesting for the nurses getting to know the other families in the ward and celebrating their milestones with them, as they did ours. It was also sad to see their losses, as was the case with the death of a father for one of our babies in our room. As a father, dealing with the environment of NICU and the stress of seeing your child develop, and then being faced with the realisation that you yourself are not infallible to death as well, makes you take stock and think of your own wellbeing as well. Remembering the basics of living was key for me, as it was so easy to just get on with having all your responsibilities and commitments that you let hours go by without eating, and then you get run down yourself.
Here you are trying to be the supportive husband to your wife, keep the house running, and also hold down a job to keep the income going as well as also trying to keep your sanity about you. At times I felt like life was like a juggling act, and this act was never going to stop. To say that it can put a strain on your marriage can be an understatement. I hardly saw my wife in 3 ½ months, and even then it was only for an hour, or for a part of the day.
During our stay at NICU, I was holding down a management job with 15 direct reports, I was trying to be a supportive husband to a wife who could not drive due to having a c-section and was getting cabin fever for being at the hospital every waking moment of the day, and a child the size of a chicken who you love and care for with love, but rely on the medical team to help this child grow and get stronger and stronger. I drove enough miles during our stay at National Women's to drive around the north and south island, and saw going to work as an escape from my reality at National Women's.
Some people may say that we could escape to work, but you never could escape your emotions, or what was happening with your baby. It was always in the back of my mind how things were going, always dreading the phone call that could turn your life once more to say he had taken a turn for the worse. It was also extending your days. I could easily remember days of getting up at 6 and not getting back to bed until midnight, 2 in the morning. I was lucky in this instance as at home I only had the cat, and he was proficient at getting his own dinner.
Jack was released from PICU on Sept 2nd after 14 weeks of being in hospital. He came home with a NG tube and oxygen to carry around. It's an easy decision to make when you are faced with the proposition that your stay could be longer as your son isn't getting the idea of sucking a bottle, and the only way to get out of hospital is to learn to put an NG tube down and practise CPR and replace oxygen cylinders at home. The amount of times I put my son's NG tube down , because he pulled it out, or threw it back out, was phenomenal, and it became something you just got on and did for him. When he was released from hospital, you go through the feeling of how will I cope without the nurses, without the saturation monitor?
Once he got home, it took him another 5 months to get off oxygen, and another 15 months before he could do without the NG tube. Although he is now 2 ½ he still wears size one clothes.
During my time at NICU, it was hard to find someone who had the same experience as myself as dads were always coming and going, Talking to doctors, or other mothers around wasn't the same. While you going through this time it's like you live on adrenaline, and you just get on and do it on auto pilot, and worry about the stress later. While this does well and gets you through it can play havoc on your own health, and learning how to manage everything is definitely important.
While I was there though there were definitely things that helped me manage through the whole situation.
1. Always keep your boss informed of what's happening. Communication in the work place helps keep your boss happy and being supportive. This made it very easy to just walk into work and get on with it.
2. Always find something to laugh or celebrate. It may be the fact that your baby put on weight, or took breath on it's own for a short period of time. Things that you celebrate help with the set backs that may come, and also ease the tediousness of being in the hospital.
3. Always be prepared to ask questions. During this time there will always be professional speak which you will have to carry a dictionary for since you won't understand a word. The team at NICU are always willing to answer questions and also put it in words that you do understand. Communication is key to you having the ability to cope.
4. Never admit defeat. While your time in hospital may be stressful, and you feel as though you are powerless to intervene, eventually you, your wife/partner/baby will leave. There is always light at the end of the tunnel.
5. Cherish the time you have with their mother. It's easier getting through this process together than alone.
Jack is now a 2 ½ years old bundle of energy that keeps Marion and myself extremely busy and gives us absolute joy. While his start to life was touch and go, he is certainly making up for it now. Although going through the process was difficult, it certainly made you learn about yourself and what you can cope with. While it may seem that the unit is set up primarily for mothers, it is also important to realise that you are also an important part of the unit. Without your input into your child's care, and also the partners care, the opportunities to bond are lost. Also the unit learns how best to meet the needs of fathers in these circumstances. Having the ability to share experiences is one way, but also learning about how to meet the emotional needs of the fathers is integral in keeping them involved.
