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Jaiden and Hannah - born at 25 weeks

Pregnancy and Birth

A little background. My husband and I have two little miracles, called Jaiden and Hannah. We spent several long years on ivf, being told we had no chance of ever having our own children. Falling pregnant with twins was the most amazing experience but was also fraught with anxiety and concern. We knew so many people who had had complications and were so nervous. I never lifted the washing basket from 8 weeks! That makes me laugh now! We were certainly over careful.

At 21 weeks I was at work and experienced a niggle in my side ribs, it bothered me for most of the day and did not abate with panadol. I mentioned it to a friend who insisted I ring my obstetrician. We owe her so much. I left work saying it was nothing and I would be back the next day and drove myself to the hospital ringing my husband on the way, telling him not to hurry it was nothing.

Upon an internal examination I was 3-4cm dilated - my world came crashing down in such a heap. We were told if they were born they would not survive, that survival was possible at 23 weeks and only just. But they were going to try and place a stich in my cervix, they were so doubtful. We cried and cried, while they kicked and moved around, I wanted to give them a smack and tell them to stay still! I was sedated and the surgery occurred first thing in the morning. I went under the general listening to our obstetrician and his locum debating if they could do it or nor. I went under thinking I may wake up without them. I was petrified.

The surgery was successful in that they managed to place a stich, just. I was elevated to take pressure of the cervix and not allowed out of bed. The next night I overheard a conversation between the obstetrician and the high risk nursing manager at the hospital discussing the hospitals request to have me transferred to a hospital with a NICU. I recall hearing our obstetrician stating several times that if they were born they were not viable and that he wanted to wait until they were. I had no hope and felt like I was waiting for the inevitable and every kick and movement reminded me of what I was about to loose.

I was moved to another hospital that day, still dazed and shocked. I entered a room with three others and a nurse introducing me, telling everyone what was wrong and why I was there. I wanted to curl up and die. The care I received there was appalling, still recovering from the affects of the general and shock I was expected to manage my own medications. We received no education about their chances, other than if they came now they would not make it. I was a mess. I lived through my husband. I could not sleep and began detaching myself from the babies. I didn't want to feel them kick or move, it hurt so much. Because of the lack of privacy the things we used to do like my husband feeling them kick and rubbing cream into my tummy stopped. Everything stopped still, while I begged and begged to go home on strict bedrest. After 3 weeks the situation became untenable in the hospital, I was hypersensitive to the televisions, visitors and noise. I was not sleeping and receiving no support from the staff. I had to share our room with inductions and Caesar patients. Eventually I demanded that I go to another hospital with a private room. I transferred myself to the Mercy and slept for three days, I was in heaven and feeling on top of things. We could talk to our babies in privacy. We had a dietician, physio, craft lady - all the support I had been asking for before but never received. But this sense of calm was not to last for very long. Three days later I noticed some slight cramping and the slightest tinge of pink. I was then 6cms dilated and the stich had broken through. The babies were 25 weeks gestation. I was rushed to the labour ward and stayed there for what seemed an eternity, I felt nothing. I wanted to go back to my room, denying anything was going to happen.  The locum obstetrician wanted to deliver them naturally and turn Hannah manually, as she was transverse. While all I could have for pain relief was pethadine as I was on heparin and could not have an epidural. My husbands face went white and from that moment on he says he knew he was also risking loosing me.  Luckily for us by the time my waters broke the locum was not available and the second replacement stated he was doing a Caesar under a general. Boy were we relieved.

The neonatologists visited us and told us we had a 40% chance they would survive, if they were a good size and had no other problems. But they could not guarantee anything. They could not state whether they would have a disability or not. The next minute I was under the general. I remember waking and my husband showing me Polaroids of them and me seeing three, asking if I had triplets! Apparently I asked him that several times that day!  

In the NICU

I didn't see them until later that night, they were so sick, I had never seen a premature baby and had no idea what to expect. They looked like skinned rabbits, their skin was red and transparent. They had iv lines in their umbilical cords, their eyes were fused shut. I could not touch them. I was broken and stunned and distraught, but most of all in shock. I just looked and looked and looked and was then taken back to my room and given some more morphine. I never thought they would survive and strove through the next few days trying to make sure I had recognised them as our babies. I placed a birth notice, thanking everyone. I walked around like a zombie, it hurt hearing other babies crying and seeing heavily pregnant women. I envied them. I wanted to feel them kick each other again. I wanted to complain that Hannah was sticking her bottom out too far and stretching my tummy. I wanted it all back. There was no "bonding" that you read about in your pregnancy books, if anything they frightened me. I had done that to them, I was responsible for them being early and in so much pain. I felt every moment of that pain twice fold. IT was like being the best gift you could ever have and watching someone torture it. The Doctors were fantastic, but I hated them, they saved them and helped them but sometimes I just wanted them to leave them alone.

The only normal thing that happened during this time was that at three days old Hannah peed all over her Dad's hand! He came running into my room so happy. I have never seen him so happy. I dreaded seeing him so heartbroken most of the time. I felt like it was my fault. My fault that they were in so much pain and so sick, that my husband may never experience that happiness again. No matter how much the doctors told me I would feel like this and to expect it I still felt it.

From our birth notice the newspaper contacted the hospital requesting an interview. We discussed it with our neonatologists who recommended against it, saying they were not out of the woods and we may regret it. However my husband and I agreed on the basis that we wanted some lovely photos of our babies, that that was all we may have. We also wanted people to know about our ivf treatment, as it was so hard to find out about new treatments. I can't believe I went out the next day, had my hair cut, bought a new maternity bra and everything. They were only 3 days old at the time. I guess I just went on and did what I had to do.

The interview was fine but the photographs were hard. The photographer complained they were not together!! Can you believe that! And then wanted a photo of my husband and I, I had not expected this and it was so hard to smile. He told me to so many times but in front of us was our little boy who I thought was going to die, I didn't want to smile. I wanted to cry but had no more tears left. I wanted to scream that it was not fair and they should do something, but I knew they could do no more.

Through them being in the paper it felt as if people had forgotten how ill they were. The news did a short article on them as well. We just went along with it all, but in the background I was watching another family who had been told their baby would not make it. I felt like it was me, I was just waiting for them to tell me the same thing. I dreamed it was me so many times, it felt so real. Every time the phone rang, my heart skipped a beat. I was certain that would be the call.

I felt so helpless, I had to stand bye and watch them being tortured every minute. I didn't understand what they were doing to them, but tried so hard to. I expressed milk every four hours for them to have later. Soon the freezer was full as it took quite a while for them to begin feeds with a tube. I was discharged four days after my Caesar, I wanted to be next to my husband all the time. I dreaded being in the hospital and being called up to say goodbye to our babies without him. All the way home I cried, I wanted my babies with me, I wanted them to be okay, and I wanted to be with them. The look on my husbands face I will never forget when he knew he could never console me. He later said he too wanted to cry all the way home, but thought if he started we would not make it and be stuck on the freeway all night. He hurt just as much. Nothing we could do could help them I would have sacrificed anything, even myself.

Our life was now travelling back and forth each and every day. It took us over an hour to get in to see them. I only missed one day as I had an infection in my uterus and could not move. If I could I would have been by their side. I missed and longed for them each day. I never felt whole without them.

Entering the NICU was always so scary, I would always be afraid they would be gone. That never left me, that feeling, not until they came home. The NICU experience was like a rollercoaster, one day was good but the next worse. With twins one did better, while the other struggled. We never had a break from it and we watched several other babies being admitted and passing away later, we knew ours were the youngest and in so much danger.

It was not until they were 15 days old that I asked a consultant many many questions about their chances of survival and future. I was too frightened to ask before, fearing the worst. We were learning so many new things, our heads ached each day along with our hearts. So many medical terms to learn and understand, so many different conditions that were affecting them. Our relationship with the ventilator was such a love/hate one, some days I wanted to unplug it and leave them alone. Others I wanted to give it a name and thank it for helping them breathe. But we knew each breath was also damaging their lungs and there would be long-term affects. We were told from the beginning they would come home of oxygen. The thought of twins on oxygen just stunned me, I had no idea what it would be like. Logistics of caring for twins are enough to manage, let alone oxygen as well. To think that during my pregnancy I thought the decision about the double pram would be a hard one!

At 15 days old Hannah finally opened her lovely eyes (they were fused shut when they were born) it was so amazing to see and to know that she knew we were there. It amazed us how much they responded to us. Many times they would settle when we were there or respond to our touch. It was so different to the way in which the nurses touched them. I am often asked by family and friends "it must be hard to bond with them" but it isn't. We have known them for 25 weeks, seen their first photos at 2 days of gestation, felt their kicks and turns inutero and in the nicu see how they respond to us. Initially their skin was so transparent you could see through it and see all their veins, but as we became accustomed to it we notice how they react to us when we are there. We also notice how they set off their alarms when the Doctor comes near them! Even if it is the isolette next to them! In some ways it is the guilt about not being able to help them and feeling responsible for what they have to go through that makes the bonding harder, you have to fight through it and you have a ward full of loud noises and people. Many times I just imagined being with them on our own. Having that intimacy that we never had.

In my diary I wrote an entire page of agonising questions, :"My heart is broken not being able to hold you close to me. I wonder when I will ever feel like a Mum. I can't do anything or take any of your pain away. Did I do something wrong? Is it my fault? Why does it hurt so much? I feel so helpless, I can't do anything to help you, you have to do it on your own and that makes me feel guilty, that I can't protect you and do what I should."

Expressing milk every four hours is torture, I know they need every single drop but the pump noises remind me I don't have my babies. My aching breasts have never felt anything other than a machine, they don't know they should produce a let down when they hear the machine start up! I wake through the night to express as well and am exhausted in every possible way. "Sometimes I watch the milk coming, drop by drop and think they are my tears for the heartache and your pain. Hundreds and hundreds of tears as I have stopped crying, I can't cry anymore. I can ask how you are and have some grasp on what they say and be calm and collected but still I cry every four hours and in between my breasts ache for you. The hurt and emptiness never goes away unless you are in my arms."

Each day we see little improvements and setbacks. It takes over 45 days for both of them to be off the full ventilator and on continuous positive airway pressure (CPAP). We are able to hold them more often as the tubing is not as fragile. They start to show more of their personalities by pulling out their tubing and lying where they are more comfortable. Hannah always loves lying on her tummy like a frog! They stayed on CPAP for around 15 days and then went onto nasal prongs for oxygen. I guess from here things go much smoother. Their treatment was less intrusive and we are more involved in their care. We are in a routine and in a way going in and out of the hospital is like going to and from work. Although I always ring before I go to sleep to know they are okay. I still ache but know they are in good hands and being cared for well. I know they are safe. It took some time to feel like that and I am unsure when I did but as you get to know the staff so well you develop a relationship with them, they become a part of your extended family.

We were very quickly moved to our local hospital for them to learn to feed and grow. This ended up being a decision we regret the most, as it was difficult to become accustomed to a new set of rules and new people. I know it was closer to home, but I was anxious and worried every second of the day. This led to my milk supply dropping and the demise of my plans to breastfeed them. It was a long 5 weeks at the local hospital before we were discharged. Both Hannah and Jaiden came home on oxygen. The hospital let the deliveryman teach us how to use the oxygen, so we had no practice and I was scared out of my wits, but wanted them home!

The road for such small premmies on oxygen is a long and hard one, which is another story! 

©2002 Junelle Rhodes

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