Mending Hearts
The walk to the ward was very surreal! There are clinics running as it's a Monday afternoon and yet as soon as you step into the lifts to the Wards, its like a whole different place. There is a buzzer system into all children's wards in the hospital and so we waited to be let in.
Luckily, all the wards also have single rooms with en-suites and a bed for one parent to stay, although they would sometimes let 2 stay with a bed made up in the playroom and I was so grateful that Adam could be with us.
We were taken to our room and the rest of that day was pretty much hanging around with people coming and going sorting out her medications, feeding, taking her obs and generally popping in for a chat so we could get to know everyone who would be looking after us. I say us because we probably needed more care at that point than Lucy.
We were taken to one of treatment rooms so that Lucy could have a cannula inserted (needle in her hand) and luckily enough they managed to get it first time. Then we went back to our room and we waited.
The next morning Lucy was scheduled for her Cardiac Catheter early and so she had to be fasted from midnight. Easier said than done with an 18 week old baby. We were introduced to the Consultant who would be performing her catheter procedure and instantly felt a bit of a bond with him. He was very kind and amazing with Lucy.
I carried Lucy to the theatres, crossing a glass walkway that looked down on the clinic area. For the first time ever, I wished that we were down there with them. We sat in the waiting area outside theatre until one of the Nurses came to tell us it was time.
Only one parent is allowed into the theatre and being her mum, I insisted that I would take her (I don't think I fully understood exactly what was going to happen and if I did, I must have blanked it out because the next few hours will haunt me forever).
Adam said his goodbyes and away we went. The Anaesthetist told me I could stay with her until they put her to sleep or I could leave before it. Nothing would have made me leave. I held her in my arms as they administered the sedative in her hand and placed the smallest mask I have ever seen on her face. She looked so tiny and vulnerable as she drifted off.
This all happened very quickly as I guess they don't want to prolong it too much and have wailing banshees in the operating theatre so I was quickly ushered out of the room and immediately broke down. I had not been prepared for how hard that was going to be handing her over, and knowing that the worst was still to come.
We went back to the room on the ward to wait. I can't remember exactly how long it was before the knock at the door came but I do remember that it was longer than they had initially told us it would be. Eventually one of the Nurses came to the room and asked if I could go with them. My heart was in my mouth as we walked to the recovery area and he explained that the catheter had gone well but they were having difficulty calming her down once she had come round from sedation and they were hoping that having her Mummy with her would help.
As we walked into the eerily empty recovery room I could hear screaming. Every nerve in my body was instantly alerted to my baby screaming! I had never heard anything like it and I will never forget it. As soon as I saw her, I knew that her biggest issue was being wrapped in a blanket! Obviously they were trying to keep her naked wee body warm but she hated being contained and so I took the blanket off and cuddled her skin to skin with me.
The other problem was the fact that she was starving. She hadn't been fed since midnight the night before and by now we were well into the afternoon. Unfortunately, there was a problem with her milk coming from the supply unit and eventually they agreed to letting me feed her with the supply that we had brought with us (they don't let you use your own for sterile purposes).
Once she had her arms freed and a bottle in her mouth she settled safely back in my arms.
She was taken to the NICU as a precaution but the Doctors were very happy that they had the information they required for her surgery on Thursday and they had managed to seal off a few vessels going from the heart to the lungs that were using blood but not particularly doing anything.
Once she was settled, I told Adam that I would go back to our room in the ward to phone our parents and let them know she was okay. I told him to look after her and off I went. Unfortunately when I arrived back, I couldn't get access to the NICU as it was now after hours and there was no one there to answer the buzzer. No one had given me the phone number for the Nurse at Lucy's bed and so after buzzing for ages I eventually had to go back to the ward and get them to phone through to get me access.
I walked in on the most horrendous scene; Adam was white as a sheet (which is worrying as those who know him will tell you he doesn't have much colour at the best of times). There were several medical staff around Lucy with masks on her face and holding her feet above her head level. There was also a crash trolley at the foot of the bed with a whole load of medications drawn up in preparation. Lucy was blue (something we were lucky enough to have avoided up until this point).
Luckily, none of the drugs were needed and the Doctor simply stood lifting her legs up and down until she was back to normal. I'm sure that my heart and breathing stopped and I felt like I was having an out of body experience. Adam and I stood back watching them save her life.
It turns out that Adam had been holding her and chatting away when she suddenly had a "blue spell". We were told later on that the Doctors had known that might happen due to the vessels they had sealed off earlier in theatre, but they had neglected to tell us that!
Once Lucy was settled for the night, two very weary parents headed back to the Cardiology Ward to try and get some sleep. The staff were so lovely and had made up beds for us and kept a couple of sandwiches hidden for us too! The ward is only next door to NICU and the Nurses said they would come and get us if Lucy needed us.
Lucy as absolutely fine overnight and came back to the ward the following morning. I've mentioned that we had been very lucky to never experience any blue spells with Lucy at home and I'm so glad that the first time it happened was in hospital. The one thing it did tell me though was that, even though Lucy kept well and looked like she was perfectly healthy, she wasn't. It made me realise how much the Surgery the following day was needed and in a way, the events from the previous day were now a bit of a blessing.
Later that night, one of the Student Doctors came to replace Lucy's cannula. He made several attempts to get the needle in but her veins kept collapsing. After a few attempts with her howling and me having to hold her down, he went to get help. He returned with the Registrar who had placed her first cannula and I was so relieved to see him. Lucy seemed quite fond of him and he had been able to get a vein first time every time.
He tried again to find a vein but couldn't find one he was happy with. He told me the only other option would be to place the cannula in her head and this meant having to shave her hair. I know how silly it seems now but at the time this upset me so much. She was already going through so much and now she needed to have her hair shaved (in reality she didn't even have that much to shave in the first place).
The Registrar was so lovely. He spoke so kindly to Lucy and I and he carefully shaved a minimal amount of hair and placed the cannula with no problems at all. It looked horrific to me but Lucy was neither up nor down with it and at least she wouldn't keep pulling at it if it was out her reach!
At some point that afternoon, the Consultant Surgeon who would be performing her Glenn procedure came to talk to us. He was a soft spoken man and I really struggled to hear him however I heard enough of what he had to say and blocked out the rest. Obviously, they have to give you the facts and they give them to you straight. He explained the procedure and talked about the results and then he informed us that she could of course die on the operating table. I then signed the consent forms to allow the Surgery and felt like I was signing her life away. Another part of the story I will never be able to forget.
We spent the rest of that day and night holding her, feeding her, bathing her and doing all the normal things and yet nothing felt normal. We both knew our biggest hurdle lay ahead in the morning and none of us knew how we would ever get through it.
One of the Nurses came in late in the evening. Adam and Lucy were both fast asleep and I was sitting on the chair at her bedside crying the heaviest silent tears. She asked me if I was okay and then came and gave me a cuddle. She knew I wasn't okay. She knew she couldn't do anything to help me. But she sat with me and she held me and she cried along with me. I can't even remember her name!
Lucy was first on the list in theatre. Again she was fasted from midnight and in the morning the Anaesthetist and the Surgeons came to speak with us. The Anaesthetist asked if we had any questions. Suddenly the reality of what was about to happen hit home. The only words that I could get out were "please bring her back to me".
Before we knew it, it was time to go. I hadn't even had time to wash Lucy or put her in her new hospital PJ's. I even took her to theatre in odd socks! Obviously they would be stripping her anyway but I felt like the worst mum in the world.
Again, only one of us were allowed in with her, and again, I knew it would be me. I asked Adam if he wanted to take her but he broke down at the very thought and we both knew I wouldn't have been happy for anyone but me to go with her no matter how hard it was.
We walked the same walk as we had 2 days ago, waited in the same waiting area and said goodbye to Daddy. Seeing Adam break down at that point broke my heart into a millions bits. I tried so hard to stay strong on that walk to theatre, holding my baby who I had longed for for so long, had carried in my tummy, gave birth to and gave my heart to. The temptation to run and keep running was strong.
The setting in theatre was all to familiar but this time, Lucy was crying as I lay her down. Maybe she knew what was coming. They placed the mask on her tiny face and she fell asleep. The floodgates opened as I whispered for the millionth time that morning how much I loved her, kissed her on the head and walked out, leaving her behind.
I collapsed in the corridor and didn't know if my heart could take any more.
Adam and I sat on the chairs outside theatre for a while to compose ourselves. The hospital encourage you to leave the grounds during the Surgery, not to hang around waiting. She would be in surgery for approximately 6 hours and would be transferred to NICU and so we no longer had a room on the ward. The staff had arranged for us to stay in the Ronald McDonald House which was on the hospital campus but we still had to go there and sign in as soon as possible or they would give the room away.
We went back to the room, had showers, packed up our stuff and left the ward. It reminded me of having to leave her behind when she was born; leaving with empty arms not knowing if they would ever be filled again.
We drove to the local shopping centre where we had wasted time a few days earlier. We ate breakfast between bouts of tears and the waiter must've thought we were nuts. After an hour or so, we couldn't stay away any longer and headed back.
We sat a while longer, watching people come and go, and then decided we should go and sign in at the Ronald McDonald. Only minutes after we arrived, my mobile rang. I was terrified to answer it. The voice on the end of the phone simply said "is that Lucy's mum, can you please come back to the Intensive Care Ward". and that was it. No, "she's out of surgery", "everything went well", your baby is still with us". Nothing!
We hadn't finished completing the registration forms and the lady at the desk was, for want of a better word, an arse! I quickly explained our daughter was out of Surgery and we had to go right away, to which she told us, if we didn't complete the forms, the room would be given away. I couldn't have cared less what they did with the room and would really have appreciated a little bit more sympathy however she did agree to hold the room and we raced back to the hospital.
We arrived within minutes of receiving the call and were shown to the parent's room to await the Surgeon. Still we knew nothing. The room was small and dark. We waited and waited and waited some more. Eventually, I opened the door in case they had forgotten we were in there!
About an hour after we arrived, Lucy's Consultant Cardiologist who had been overseeing her care since she was born, walked past. She stopped and came back. She was smiling. She said she had popped up after her shift to check on Lucy and was happy to see her looking so pink!!
She explained that the surgery had gone really well and they were settling her into NICU but having problems getting the necessary lines placed. I didn't care! She was still here! They had indeed brought her back to me.
Her Surgeon came and told us a little bit more about the Surgery and how successful it had been. They hadn't needed to put her on the heart and lung bypass machine and had managed to complete her Glenn with very little complication. I hugged him! So did Adam! He was a little taken aback but he had given us everything and there was no way of ever showing him how much and so it just felt right to give him a cuddle! He then took us to see our baby girl.
Seeing her for that first time, hooked up to various machines, wires and tubes everywhere, and so swollen from all the gases, was horrific. But she was here! The Nurse taking care of her was the loveliest wee Irish lady who had made her comfortable, cut her plasters into love hearts and placed Ed the Ted in her bed beside her, complete with bandages of his own!
We spent a while sitting with her before there was an alarm at another bed and we had to leave the room. We waited outside for 2 hours before I couldn't wait any more. Obviously I wanted to the other baby to be okay, and would want the same for Lucy, but I needed to be with her.
We were finally allowed back in and spent a few more hours just watching her and watching the Nurse take care of her. Eventually around 11p.m. she sent us away. She told us we needed to be well rested for Lucy's sake and that she would take great care of her. She said she would phone if there was anything at all and I knew she would. No one could have looked after her better at that time, me included. That Nurse has a piece of my heart forever.
We returned to the Ronald McDonald House and got into bed. We had made it. The toughest day of our lives was over and for now, we needed to sleep. And we did! I don't know how but we did! And I slept more soundly than I had in a very long time.
We woke early and Adam phoned the bedside to check on her. She had had a very settled night and was even taking small amounts of milk. I was so proud of her. We showered and walked the 5 minute walk back to the NICU.
Lucy was awake when we arrived. She was still very swollen and to be honest, I couldn't see much change in her colour, but I was so pleased to see her eyes. I gave her a feed (they have to limit her fluid intake) but she wanted more and more and when the Consultant came to do his ward rounds, he said to us "she won't be in here very long" and told the Nurse to make the arrangements to take her back to the Ward! This was less than 24 hours since her open heart surgery!!
By 11 a.m. we were back in the ward, in the 4 bed room by the Nurses station but it was a step in the right direction.
We went to get something to eat while they settled her back in and I phoned home to let everyone know that she was doing well. When my dad answered the phone, I knew instantly that something was wrong. When I asked, he told me that my Gran had passed away that morning.
I was devastated. I wanted so much to be at home. I wanted to be there for my mum. I wanted this not to be happening but at the same time, I felt like she had gone to let Lucy live. She waited until she knew that Lucy was okay before she left us. I know that might sound a bit odd, but it gives me great comfort to think she loved Lucy so much she gave up her life so that Lucy could have hers.
I spent the next 2 nights sleeping on a chair by Lucy's bedside. She developed the most painful headaches (due to the changes in her blood pressure system) and the only relief she got was by one of us holding her head. Unfortunately there isn't much else they can do and it just takes time for these headaches to settle but it was hard to watch.
We did notice that every time she cried, coughed or had hiccups, that there was a weird popping sound from her chest. It turned out to be the breastbone popping in and out from where it had been stitched back together and although it sounded bad, it wasn't actually causing her any pain.
On the Saturday afternoon, we were transferred back to our own room and little by little, tubes and wires started to disappear. On Sunday night, the Senior Nurse was in checking on us and I told her Lucy was getting so annoyed with the oxygen tube in her nose and kept pulling it out.
She checked her chart and said she didn't think she needed the tube anymore as she was on so little oxygen anyway and pulled the tube out. At the same time she gave us a wink and said "aw Lucy you've pulled that tube out again"! She knew what she was doing and I'm so grateful to her. I think if she had left it in place, we probably would have been in much longer.
By the Tuesday, Lucy was ready to go home. We were all ready to go home. Adam went to get some tasty treats for the Nurses while I packed our bags and waited for her discharge medication. Once the papers were signed and the medication supplied, it was time to say goodbye. Only 5 days after major open heart surgery, our warrior was in her car seat and once again, we carried her out the hospital ready to start all over again at home.
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