Day One
After a total of about 3 hours sleep, we were desperate to get back to the babies to find out how they were and anything additional the Doctor's could tell us. All the information we received today was that the doctors expect all babies to do well in their first 24 hours, and this isn't an accurate idea of the real situation. We were also told that the following 3-4 days we could expect the babies to show signs of getting worse, and the best we could hope for at this time would be for them to be stable, even if their 'obs' were slightly below ideal, rather than them being up and then down.
Our babies managed a stable first day, so we were relieved that they were behaving as expected as it was the most we could hope for at this point.
Before leaving the babies for the evening, the nurse looking after them for the evening kindly let us give the babies a kiss. I can't begin to describe how much this meant to us, it was a real boost to do something normal with our babies, who even now at Day 6 we have not been able to hold.
Day Two
The babies remained stable over night and the news from the Doctor's during rounds was that Jacob and Lilian were both doing as well as could be expected. Lilian was doing slightly better than Jacob in terms of her 'Obs' (slightly better blood pressure etc.), but we were told this is common as pre-term boys usually don't do as well as girls.
During the day we were invited to help care for our babies to begin bonding with them. This involves doing their 'Cares' which means we get to swab their mouths with sterilised water and then with my breast milk, and changing their nappies. With the babies being so small we were shown how to 'containment hold' them to provide them with a feeling of security while we care for them. This involves putting light pressure from one hand over their head/face and gathering their feet together and putting light pressure on them too. This gives them boundaries and something to push against as they would have experienced in the womb.
Day Three
The magical words 'the babies had a good night' were uttered again this morning (those simple words mean so much and can never be said too often!). Jacob was started on some of my expressed milk today to see how he gets on. Lilian wasn't yet ready for milk as she was still on medication to keep her blood pressure up.
As part of their treatment, tests were carried out today, these tests found that Jacob has a bug on his skin. Lilian was also found to have a bug on her skin. Her routine blood tests also showed that the bug was in her blood and we were advised she may need a Lumbar Puncture to check for any further issues in relation to the bug (namely for infection in the fluid around the brain / spine). It was expected that she wasn't suffering from an infection from the bug though as her 'obs' were consistent with her being as well as she could be.
Day Four
Jacob had a very good night, as he remained very stable. The Doctor's have decided they are going to take him off his ventilator later to see how he gets on breathing for himself, he was taken off at around 6pm, though we were told he would likely go back on it before the morning. He was started on caffeine at this time too as we were advised that the most common problem for pre-term babies when they come off ventilation is that they forget to breathe. Jacob has started digesting the milk I am expressing for him which should help with the development of his gut.
Lilian had a Lumbar Puncture during the night and we were told that she coped very well with it, and that the initial signs were very good and suggested no issues. We will get the results in the next few days and she is still in a very stable state.
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| Lilian still going strong |
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| Jacob without his ventilator |
The babies have been coping so well so far and we are so proud of them. We, as I'm sure you will understand, have a constant fear of anything changing. The Doctor's have been very good at managing our expectations and we think that that has helped to keep us sane so far.We are well aware that anything could change anytime and are so appreciative of anything that isn't negative.
Day Five
Jacob was put back on his ventilator last night as he was working a little too hard. He was off for about 5 hours which the Doctor's were very pleased with. He is back on minimal ventilation again already, so this is really positive, but they have told us that they wont take him off again for a few days just to give him a rest. They will be increasing his feeds to every 2 hours as of today as he is digesting well. Jacob's antibiotics are also being stopped today, as there aren't any signs of his blood having an infection.
Lilian had a very good night, and had her dopamine reduced but she was struggling to maintain her blood pressure so it was put back up. The Doctor's are looking to reduce her Dopamine as soon as possible as she needs to be weaned off this before she can start to take my milk. One of Lilian's antibiotics is being stopped today so she will only be receiving one antibiotic as of today (she will need this for the next 14 days).
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