Big Progress for Little Smidge and Smudge

{EAV:78941844a133c763} It’s been too long since either of us posted an update on Smidge and Smudge’s progress, and we’re sorry about that. No news is good news though, and that’s exactly what we’ve got for you on this update!

What’s Happened

Hold on to your hats, as here’s everything that’s happened:

1. Phone call from Southampton hospital to say that they are going to try and get Smidge moved up to Basingstoke hospital, with Smudge to move a few days later. False alarm as no transport team available, and bed is then taken by another baby in Basingstoke.
2. Another phone call from Southampton a few days later to say that a bed is available, and they hope to have Smudge follow-on within 48 hours.

3. 

   Smidge gets transported up the M3 to Basingstoke the next day. Doesn’t enjoy the journey one bit and apparently screaming blue murder by the end of it. Otherwise arrives fine.
4. We get our first visit to Basingstoke Neonatal ward. Clearly smaller (half the number of beds) and less equipped than the university hospital and regional centre in Southampton. First nurse we meet is friendly though.
5. I raise concerns to a couple of the nurses about different maximum alarms for oxygen saturation between Southampton and Basingstoke, since over saturation of those less than about 34 weeks can lead to sight issues by increasing retinopathy of prematurity. Come back next day to find maximum alarms levels have been reduced satisfactorily.
6. Having experienced what a neonatal ward could be like, we notice that communication isn’t Basingstoke’s strong point. At Southampton, we were given lots of information about the ward, and prem babies in general, and had regular talks with the doctors to discuss progress. The initial week at Basingstoke we had nothing – and if we hadn’t have had the info at Southampton, we wouldn’t have known what we were missing out on.

7. 

   Smudge in Southampton starts to have periods off of her CPAP and onto the high flow breathing support.
8. Basingstoke neonatal ward gets unusually busy, stretched over capacity. As soon as someone leaves, more medical priority babies arrive. There is no bed space available for Smudge, and as she is safe and in a bed, she is left where she is.
9. As we’re split between two hospitals (Katie visiting both every day) we’re arriving late at Basingstoke. Combined with a busy ward, we have a bad experience with one of the nurses at Basingstoke, who initially refused to let us have a cuddle with our son, despite him being awake and with no medical reason why he shouldn’t come out. Totally disappointed with the nurse’s actions and attitude.
10. By this point, we’re actually wishing Smidge was back down in Southampton, in more familiar and friendly surroundings.
11. Smudge is moved from the intensive care room at Southampton to the special care (generally lower levels of support needed) room next door.
12. After a week at Basingstoke, we finally get to meet the doctor. Understanding about our split hospitals issue, she suggests seeing if Winchester hospital (about halfway between Basingstoke and Southampton) would have two beds free and would take both Smidge and Smudge. Winchester are happy with the idea, but don’t currently have enough space either.

13. 

    Not having been communicated to as to who the boss of the unit was, we eventually find out from the doctor about the Nurse Manager. We arrange to sit down with her later that day, and for over an hour we gave her feedback about that nurse, the general lack of communication, our frustrations and our experiences so far. She was very understanding and we felt we had been listened to.
14. Smudge is now at a stage where she is spending half the time on CPAP, and half on high flow.
15. Smidge in Basingstoke is being weaned off the ambient oxygen, but can’t shake the last 1-2% without having desaturations. When he comes out for cuddles and breastfeeds, we have to hold a neopuff oxygen mask somewhere near his face.

16. 

    Finally, after 11 days split between two hospitals, we walk into the ward at Southampton and are told that Smudge will be going to Basingstoke, later that day. We can’t thank the staff (particularly the wonderful nurses) there enough for all they’ve done.
17. Smudge takes a while to get settled into the transport incubator, having been put back on CPAP for the journey, but does indeed leave Southampton that day. Smudge did not like the CPAP having been spending most of her time on high flow for the previous couple of days.
18. Over the next few days, Smudge doesn’t cycle between CPAP and high flow as she was doing at Southampton, but stays on high flow to be weaned off that by reducing the pressure and oxygen level.

19. 

    Smidge eventually reduces his need for extra ambient oxygen, so is changed from an incubator to a heated cot.
20. Smidge revealed to have a hernia that will need operating on once he’s discharged. Only told by a doctor by way of “Well, you know he has a hernia…”. Actually, no, we didn’t, as no-one had bothered to tell us.
21. The opthamologist checks over the twins and identifies some retinopathy of prematurity (ROP) in Smudge’s left eye.
22. Smidge has an unexplained setback. Doctor thought they heard Smidge being sick, but no sign of it so query inhaling it. Chest x-ray reveals nothing, but Smidge starts desaturating regularly and clearly isn’t his usual self. Worse, he is completely quiet without his usual snuffles and squeaks. He ends up back in an incubator with oxygen to help him recover.

23. 

    The twins move from the intensive care room at Basingstoke to the special care / high dependency room next door. Another step closer to the front door.
24. Smudge’s heart murmur is now inaudible, as the valve in the heart that wasn’t shutting previously (PDA) is considered to have finally closed.
25. Opthamologist checks their eyes, and is less concerned with Smudge’s left eye. Smidge is discharged from ROP screening.
26. Smidge takes his first bath. In, out and practically dry within 1m 15s, according to the video. He seems non-plussed about being in the water.
27. Smudge allowed to take her first bath a few days after Smidge, and a different nurse guides us through a more thorough bath, so it takes Smudge considerably longer. Some squeaks of discontent, but seemed happy when the water was being splashed on her.

28. 

    Both go for an ultrasound head scan. Apparently their first scan at Southampton showed some areas of lightness around the brain, which could be indicative of oxygen starvation. We were not informed of this at the time. The scans at Basingstoke come back pretty much clear, with the sonographer saying that she probably wouldn’t have spotted the abnormality if she didn’t know from the notes that it had been present.
29. Their weight has been progressing nicely during this time, and they were on fortifier until they weighed over 2 kilograms. Smidge’s weight didn’t go up as much as hoped one week, so he was put on to Nutriprem 2 and he responded accordingly. Their weights are currently 5lb 6oz (Smidge) and 5lb 8oz (Smudge).

30. 

    Smudge moves into a cot with a low flow nasal cannula for her oxygen, to try to get the last little bit gone. There was no other reason for her to still be in an incubator and handling her was getting tough in there due to her size.
31. As of this morning, the twins have been allowed to share a space for the first time since their arrival, with Smidge being placed with Smudge in her cot.

What Next?

The next step is perhaps the most exciting and nerve-racking thing so far. The plan is for both of us to stay in hospital this Monday (27th Feb), sleeping in a individual room with Smidge, so he can be fed during the night. The intention is then to have Smidge discharged on Tuesday (Day 90), so they he can come home! He’ll still be spending most of his days at the hospital, as Katie will be there also feeding Smudge, who, I’m guessing will need another 10-14 days to be ready to come home.