Mum is now is a plane making the long journey to the other side of the world for the second time in 6 weeks. Only one sleep till she joins us here in Bristol and meets her second Granddaughter. Eva is of course very excited about this and wonders just how she will sleep tonight.
Eva was just ok today. Her heart rate only dropped a couple of times but her oxygen level wasn’t as good with her relying a little more on oxygen. Pam, the consultant who admitted Eva to the NICU, saw her today. Pam was pragmatic about Eva’s condition saying that it was probably just her prematurity and also mentioned that the increased oxygen use may be a sign of Eva developing Chronic Lung Disease.
We found out today that Eva again grew Staphylococcus in her blood the other day but her infection markers have remained stable. Thus she doesn’t seem to be suffering from a sepsis with this bug. Hopefully her antibiotics can finish soon.
Eva seems to be most bothered by her reflux at the moment. Some feeds she tolerates well but others cause her pain and distress. Her stomach and bowel are the most immature of her organs, which is logical as they are the least priority for the body to have formed at 25 weeks. They will continue to feed her to try and mature her gut. Pam asked her feeds to stay at the same amount for 24 hours to not put any more stress on her.
Andrew had the pleasure of another cuddle today. It is a delight to see him enjoy such special time and chat away to his daughter. These moments seem to give him the inspiration to get to the next weekend with this small thing of work in the middle! Eva had her eyes open for some time and enjoyed wriggling to get into a comfortable spot. Eva behaved for about an hour before dropping her oxygen level and needing to go back.
Although I may not get to choose cute clothes to dress Eva up in I do have fun choosing a different blanket daily. These blankets have been donated and due to infection risks Eva needs a fresh one in her crib daily. It’s my little bit of fun finding new blankets from the box daily!
Eva’s nurse today wasn’t very good at communicating and not very good at using logic, which was frustrating for both Andrew and I. I also imagine that we are not the easiest parents to have! I am certainly gaining a lot of experience at being the patient/next of kin. I can see how obvious it is when each nurse does things slightly differently, which can be very confusing. It’s nice when we have nurses for several shifts in a row. It is much more relaxing for us when we know their routine. Some nurses like us to be fully involved and some do mostly everything for Eva. I imagine this is what my patient’s experience every shift!
Today we were invited to Christmas lunch with friends from church Lizzy and Jason. It will be a fun day I’m sure and maybe Mum will be able to make a pudding before she leaves. At church baby Eva was in the prayer requests for strength to fight her infection. We feel so much strength knowing this request is reflected around the world in many prayers and thoughts.
December 1st is World AIDS Day and Eva has a red ribbon attached to her crib blanket. Please support this fundraising cause if you see ribbons for sale. At church today they told us that every 6 seconds someone contracts HIV, that’s a lot of people every day!
A crying baby is a healthy baby, Britta, Eva’s nurse, told us today. Well today Eva was being quite the Diva and threw a few big tantrums. A good sign after yesterday. Britta said she’s got quite a temper on her!
We both slept well last night which was great – thank goodness for rescue remedy. When we arrived at 10 Eva hadn’t had any episodes since 5am so we were very pleased with her. Britta suggested while she was settled we get her out for a cuddle. Andrew hadn’t worn a button down shirt as he didn’t want to tempt fate so instead he just had to take his t-shirt off! Andrew and Eva had about 45 minutes of settled cuddle time where she behaved except for slowing her breathing slightly a couple of times. Andrew again felt that this skin to skin time was magical and felt reassured that he could easily touch her back to get her to breath more rhythmically. He felt so sorry that I had missed out on cuddling 3 days this week as it is such a special time.
Then I was to feed her. I forgot to check the tube placement and when I put the milk in it came straight out of her mouth and ran down Andrew’s chest. The end of the tube was sitting in her mouth instead of in her stomach. Of course I felt awful about this but Britta calmly reassured me that Eva couldn’t have inhaled any into her lungs. Well young Eva expressed quite passionately her grumpiness at this situation. I was in such shock that I didn’t think to video the tantrum! Shortly after, when she calmed down, Britta easily passed another tube ready for the feed. Not long after this she had an episode of bradycardia and aponea resulting in her dropping her oxygen levels and loosing some of her pink colour. Britta very calmly returned her to the crib where Eva regained her colour and when placed on her stomach settled very quickly. Since we had seen this over the past few days Andrew and I were actually not too panicky about the episode.
We fed her safely and without issues then took ourselves to lunch to give Eva some time to rest. On return Daddy had a dirty nappy to change and she had another feed. Britta gave Eva her antibiotics through her cannula in her arm. This was obviously very sore as again she was very upset. Britta soon removed the cannula, which is good as it was quite red. The end of her of her tantrum during the removal of her cannula can be seen in a video on Flickr. This involved a clenched fist thumping down on her sheets and lots of crying!
The next big thing for today was that her CPAP mask and tubing was changed. This gave us a wonderful opportunity to see our precious Eva without a mask or hat for the first time in 2 weeks. She coped extremely well just lying there without CPAP or any other support. Britta was ready to give her oxygen if necessary. Andrew and I both were able to touch her head and feel her hair. Of course many photos were taken. Eva’s face and head are quite dented from where the mask is held on tightly to get a seal. It must feel good to have it off. Eva’s hair is quite light and perhaps with a reddish tinge!
Eva’s feeds have gone up to 8ml 2hourly. They go up 1ml every 12 hours and when she gets to 12mls she will stop her TPN (artificial feeding). They are keen to stop that as it reduces her infection risks. Then her feeds will increase based on her weight increase.
Most of you will be unsurprised by the fact that we appear to take many more photos than any other parents. Our Eva has a well documented stay in NICU.
Today was a maximum of 4 degrees and it’s only November. I was so impressed that I wouldn’t have to get up in the night during winter but seeing as Eva decided to come early now I get to enjoy the minus degree nights. This weather also isn’t helping us to get rid of the colds that have been annoying us for 2 weeks.
So overall as you can see the day was better today. Perhaps I just get tired and emotional by the end of the week visiting on my own. Also we are have started to accept that these episodes she has are part and parcel of having a premature baby (once the possibility of infection was ruled out).
Nobody told us how hard it is to be a parent! Why is that? We have had a very draining day. Our daughter has been a real challenge today. Eva is certainly not behaving as she should. Today she has had more bradycardic (slow heart rate) and aponea (stopping breathing) episodes. The good news is that these do not appear to be caused by an infection at this stage. They are due to her being premature which everyone keeps reassuring us is normal. Today we needed your prayers more than ever so thank you all.
I am finding it hard to stay strong whilst sitting at the bedside but also finding it hard to leave her side. Eva is just so precious to us already any thought of not having her to walk the path of life with is unbearable. Conversely I wont let myself imagine our lives past tomorrow! I really tried to day to ignore the screens and when I heard the alarms go off I looked just at Eva and was mostly greeted with the nice sight of her looking pink and breathing normally.
When Andrew visited Eva before work today he found that they had commenced her on antibiotics through the night and taken blood samples to check for growth of bugs. While he was there Eva had a long bradycardia and he could see why I had been stressed watching that yesterday. David, the consultant suggested that if she continued like this she might need to be ventilated on a machine. Of course this was very upsetting for us but she has managed to avoid this to this point. Also her feeds had stopped.
By the time I got there Eva had been moved back into ICU and seemed to be improving. Throughout the morning her episodes lessened and her tests came back clear. The blood results were perfect and there were no signs of infection. Her chest x-ray came back clear so she doesn’t have a chest infection. James, the consultant came to see her and explained the possibilities for these episodes. Eva seems to have a blocked nose so clearing that using suction every 3 hours for 24 hours should help. Eva gets very grumpy about this and turns very red! Also our little girl has gastric reflux, which means after her feeds she is in pain as she suffers reflux. To help avoid this she has Gaviscon immediately after her feed.
Eva’s need for oxygen has been very variable today. She is sometimes just on room air (21% oxygen) and has been using 30% oxygen at her highest. The nurses are very good at changing the strength to meet her needs. However this means more alarms going off as the CPAP machine alarms with each change as does her oxygen saturation alarm. This was getting tiring to listen to today. However it is just what Eva needs so I really shouldn’t be bothered.
This afternoon Eva had to move back to HDU as there were 29 week twins being born that needed the beds. Of course all this moving must be difficult for her and is difficult for us as well. It is very disruptive for her care but we realise essential to the running of the unit. As a nurse I can understand the prioritising of patient care and the need to move but it is difficult to see her with new nurses who don’t know her. I feel a real responsibility to stay around and check they are up to date with her care. It’s not that I don’t trust them but they are not familiar with her current condition and care needed.
This evening from 5.30 to 8 Eva had several episodes of aponea where she stops breathing and you have to rub her back to stimulate her to breathe again. Apparently this is normal for premature babies. Of course poor Eva should be tucked away inside me just breathing through her amniotic fluid so all of this is hard work. It is awful to see and must be difficult for her as well as she has to catch up on her oxygen after it happens.
On a lighter note when she was more stable earlier today I took the opportunity to see my manager and visit the ward I was last working on. It really was lovely to see how interested everybody is and to receive their well wishes. They have obviously been anxious to see me but today was really the first day I felt like going. I had some photos, which everybody pored over. The one that fascinated them most was Andrew holding Eva in his hands so they could see her size. The announcement of her birth was on the safety briefly board for everyone to see. I felt very comforted to know so many more people are sending their love. One of the Indian doctors came up to tell me that Eva is in her prayers and she talked about how precious faith is. I realised that today I really called upon God lots and am so thankful to have a strong support that is ever faithful.
Looking back at the photos to choose some to print I couldn’t believe how much change there had been in Eva. Her skin has changed so much and she has put on weight, now her ribs don’t show through. I was surprised to see such change.
Andrew has been very busy at work today changing prices in the system to reflect the government’s decision to change the VAT. It seems it is a tedious job with little reward. There is still more work to be done over the weekend and Monday. I realise that this is a very important thing for lots of people and it has made their past few days busy and difficult but I would give anything to have something like VAT being the biggest worry in our lives.
So today has been a rollercoaster in itself let alone the journey being a rollercoaster. Every minute is precious with her and the situation can change so quickly. James, the consultant, looked me in the eye and told me not to worry. I guess he realises that as a parent this just isn’t possible, this is just the start of a lifetime of worries for us like the life of any parent.