Is it time for home?

I figured the best way forward was to keep myself to a routine and this structure would help me manage my feelings of loneliness. I headed to the dining room to cook my dinner and I noticed the ladies who were alone and the couple/families together. One family was sharing ice cream with another little boy and I thought how nice to see them sharing. I longed for my best friend's company. I had a quick dinner and headed back to my room. I set my alarm to wake so I could express milk overnight and went fast off to sleep. My routine was to get up really early, have an early breakfast and make it to the NICU for the change of shift so I was there for handover. This is what I did each day. I didn't think that I could make it by myself but I did and it wasn't long until the weekend approached and my husband would return. We spent the weekend together visiting Faith and enjoying having each others company again. It was nice to have someone to share with and talk to. But again the time came when hubby drove off in the distance and I was alone again. Faith was given this big homemade pinkish cat and it was so cute. It folded out into a pillow. I sat it on my bed and it made me feel like I had a little bit of home with me.

The neurosurgeons were happy with Faith's progress and were happy for Faith to go home but the wound was what was now keeping us in the NICU. There was talk of sending Faith to the Children's hospital which would not only mean out of NICU but I would be able to stay with her 24hours a day and care for her. At first I was apprehensive as I would be leaving my safe zone and starting over somewhere else. But the exciting part was I would be able to care for Faith. I could see this as a positive. The babies ward didn't have any available beds so we would just have to wait. The week past and my husband was to return. We also got the news that the babies ward had a bed for Faith and we were being transferred. Wow, how exciting. So just as my husband arrived we were moving to the children's hospital.

It was so different, just like a normal hospital, not like the mother's hospital at all. I suddenly was thrust into the full time care of Faith, for the first time.  She conveniently pulled out her NG tube, so I would be now breast feeding. Wow, what a change. This also brought the challenge that Faith was expected to sleep on her back but she had never done this and I wondered how she would settle. It wasn't possible anyway, as the wound was still serious but it was strange how the nurses just expected her too. The VAC machine was still on and the majority of the nurses had no idea how to work it, it appeared it was up to me. My first night there was a disaster, Faith barely settled and I had had no sleep and by the next morning I was sick, I had caught a cold.

Faith was having bottles when I was not there so I thought it might be best though I felt so much guilt not to stay that next night. I didn't want to give the cold to Faith or any other babies. My husband said that it was a good idea as I needed to care for myself during this time. I felt horrible and felt that they don't know her and how are they going to look after her. The next day, I anxiously ran over there in the morning and was feeling better. As we were past our maximum stay time in our accommodation we had to move out so my husband stayed and relocated our things to another temporary room until other accommodation could be found.  When I arrived, they were using the wrong teat for Faith's bottle and they had lifted the VAC machine above her to sit on the table, it was alarming. The VAC machine is always meant to be kept below the patient. I asked how long it had been alarming for and the nurse said when she had started her shift. They didn't know what to do with it. If it is alarming it needs to be fixed and if it cannot be fixed, it has to be taken off the patient as it can do damage when it isn't working. I was so annoyed. They should have called the plastic surgeons but as it was a weekend they didn't. The plastic surgeons came in unexpectedly and fiddled with it and it worked again but only for a short while and it alarmed again. Oh, so frustrating. One of the nurses realised I knew what I was talking about and so we took the VAC dressing off. I said if the dressing is off and it is just being changed daily this is something that I can do at home and there is no need to be in hospital. She agreed with me and contacted the plastic surgeons. It was the weekend so to get discharged on the weekend is a challenge. I managed to get Faith weekend leave, for us to return each day and we could stay at our accommodation the rest of the time. Our accommodation situation was a mess, it was meant to have been re booked but an error occurred and we had to keep shifting rooms which was tedious. The staff couldn't care and didn't offer a hand.

The exciting thing was we were taking Faith for the weekend, our first night alone with her and no nurses. It felt so strange. We carried our little bundle across to our room and settled in. She immediately had a sleep. So beautiful seeing her lying there. My Aunt and Uncle arrived with a porta cot, this was exciting. Night time came and Faith was so distressed she just wouldn't go to sleep. She wouldn't sleep, she didn't seem to be feeding properly, minutes turned into sleepless hours. We had no idea what to do. We couldn't go back to the hospital as there was no lactation nurses on during the night to provide advice. So we thought the best idea might be to try a bottle, maybe she was confused. So we gave her a bottle and off to sleep she went. Since we had been moved from the mother's hospital to the children's we didn't have that chance for Faith and I to be together to make sure she was feeding ok. So Sunday night came and it was slightly better.

We went back to the hospital on the Monday and got the all clear from the doctors. The plastic surgeons wanted us to come back the following Friday for a wound check. It had also be arranged that we would see a wound nurse back home. But this was true? After 9weeks we were going home! Faith was 6weeks old and we were heading home. It is true, yes, it is. This was the moment we had been waiting for. Praise God! It was late in the evening when we finally got the car packed and the all clear from the hospital but we were off. Homeward bound!

Shunt Malfunction

Over the next few days, when we telephoned overnight to check on Faith, we were told she was restless and confused with night and day. There were mornings we went in and the doctor's were not happy with her progress and days that were ok. Some days I stood at the doors of her room and was scared to go in because I didn't know what I would find. Sometimes it would be that Faith's condition was stable and other days I would just burst into tears as something had gone wrong. One of the days that stood out was the first Saturday, we were out at the shops buying some food. We got a call from a well spoken neurosurgeon, who explained that over the last few hours Faith's head size had increased a substantial amount. They were going to have to take her back to surgery as the neurosurgeon said it was a shunt malfunction. It had only just been put in, surely not this soon. I found this hard to take in, so I gave the phone over to my husband for it to be explained to him. This was not good. Faith's shunt valve was at the wrong pressure so they had to make an adjustment to it. Thankfully, the surgery was a success and we could come and be with her again.

The next day as we walked down the corridor of the hospital to see Faith I heard this cry and I said to hubby, that is Faith and I started walking faster and faster. When we arrived it was Faith crying and they had taken her breathing tube out so this had to be a good thing. I just had this instinct that it was my little one crying. It was an amazing feeling. The same day unfortunately, Faith had a seizure that the doctors were extremely worried about and had to relieve pressure in Faith's head by removing fluid. What an intense day but it wasn't over yet. We were quite shocked as when we turned up to see Faith they were changing her wound dressing where the flap of skin was moved. The wound had broken down extensively, it was a triangle shape and it had turned into a cavern in her back. We asked what was going on and we wanted to speak to the doctor about it, as we were not told of the seriousness of the situation. If the wound deteriorated too much more it could progress to the spina bifida site and leak cerebral spinal fluid (CSF) and it would mean the shunt would need to be replaced. This was such a shock. I have never seen anything like it.

We spoke to the plastic surgeon, who we were not impressed with, and they were going to keep a close eye on it. This happens apparently. A couple of times a year the doctors see this in the hospital, but it didn't make us feel any better. We would have to keep a close watch on the situation. I think it was at this point we had to start taking more note of what was being done, medications given and things like that. It is so much take in, particularly only 7 days after the birth of our first baby.

Over the next several weeks, there were days the doctors didn't know what was going to happen. The same routine every day. Back to our accommodation and back to the hospital. This was our world and we didn't know much that was going on outside of it. We got to know nurses, doctors, cleaners and many of the staff very well. I even had a health scare in that I had chronic pain in my back and was admitted and had to have an MRI to check there was no damage done from the spinal tap, but thankfully it was fine. I think it was all the walking and activity, not enough rest but there was nothing I could do about that.

Family kindly brought us meals and encouraged us to keep praying and keep going as we will get there. I think what I found strange as my life at home continued on without me. Time was passing but I felt like I was just treading water. There were so many stresses at this time. Sadly, there were some family that didn't understand why they couldn't come and visit. They put a lot of pressure and guilt on us. I understand that it must have been hard for those that didn't understand the seriousness of our situation but we were so exhausted and concerned about faith. It was hard to find words to explain why they must just wait. There was going to be plenty of time in the future to see Faith. But I think some people forgot to look at the situation from our point of view and how we felt and what we were going through. We were doing what was best for Faith and what she needed and if that offended others then there was nothing we could do. We tried so hard to please everybody but it isn't possible. Some days were bleak and I would sit beside Faith and tell her about our life at home, about our garden, our pets and friends. We would talk about her life soon to be at home and the beautiful things we could all do together as a family.

I celebrated my 30th birthday at the hospital. I had hoped that we would have been home by then. I also hoped that I could just ignore my birthday as I didn't feel like celebrating. By my birthday coming it made it very real how much time had passed since I first arrived pregnant. But to my surprise I had my mum, dad, aunt, uncle and cousin arrive and spoil me with gifts. My friends back home had sent cards, letters and gifts to remind me of what I had back home. I was very grateful, I even received a bunch of flowers. It was lovely to celebrate this day with family I hadn't seen in a while. But it was still hard as I was sad and I wanted to be with Faith. The night we visited on my birthday we had a mean nurse who snatched Faith away from us the moment she started to cry. We were not even given a chance to settle her. It seemed we had no control over anything. As time passed we learnt to say no and not be put in that position. We did spend a lot of each day sitting by her side but it wasn't the same as having her all to ourselves away from the nurses. We had some amazing nurses who gave us a lot of control of her care and we loved the days we had them as it made it so much easier and we could enjoy her more.

The wound on Faith's back looked terrible and they decided to put a VAC dressing on it to promote healing. A VAC (vacuum assisted closure) dressing is a device that consists of a dressing which is fitted with a tube and attached to the wound VAC (a machine). Negative pressure wound therapy is most commonly used with chronic wounds which are not responding to other forms of treatment, and sometimes with surgical wounds which have reopened. It was a delicate wound as if the VAC dressing pulled too much fluid out it could draw the cerebral spinal fluid (CSF) out and then we would have to start again with the shunt having to be replaced. I learned as much as I could about this VAC dressing machine as it wasn't commonly used in the NICU and most nurses were not trained in the use of it. Alot of nurses were not trained in the care and maintenance of a wound this serious. When the wound nurse came every few days I would question her and get her to show me all about this machine and also care of the wound. At first, the wound got slightly worse and we were extremely worried and they were talking of taking Faith back to surgery. A plastic surgeon came every day but extremely early so I struggled to catch them, but this particular day I was determined so I got up early and made my way to see Faith. I got there just before this medium height, snobbish plastic surgeon arrived. When he got there and he was examining the wound; I was asking him how wounds like this heal and he said with a serious face its magic. I said that's not true how do they heal? He then made a joke with the nurse saying it just heals like magic and smart remark to the other doctor. I was completely disgusted by his response before I could say anything he was gone. I still didn't have my answer. I later asked the wound nurse and wounds heal from the bottom of the wound upwards. This was the day I realised no more, I don't deserved to be treated like this and I spoke to the wound nurse about this plastic surgeon. Within a few days the NICU was buzzing about a doctor who told a parent that wounds heal by magic, he appeared shortly afterwards but with the consultant and made an awkward apology. I would like to hope he learned from his mistake but I don't think he did. From then on he always treated me with much more respect and answered all my questions.

One night my husband said that he had no more leave and he had to go home. I knew it was coming but still hoped it wouldn't. I had hoped we would go home before this day arrived. We were a team and did this together. Even though Faith seemed to be progressing ok, it was a few steps forward and a few back. So, the day came and my love drove off into the distance and I was left at the window alone and wondering how I was going to make it through each day and manage it by myself. I was soon to find out.