How do you say Goodbye?

First of all sorry in the delay in the story continuation.. life just seemed to get in the way. But then given the title of this part of our story that’s an incredibly good thing.

When we left off Gwendolyn had just had an ‘exciting’ ambulance ride back to the JR after being in Southampton for her surgery. We’d gone home for a couple of hours that night to mainly shower, change our clothes & try & take a deep breath. The next day her blood pressure had improved but her lungs were inflamed from surgery & she was struggling with her oxygenation even whilst ventilated.  Over the next 2 days she got worse & worse & we found ourselves spending every waking minute at the hospital. The poor doggies only saw us to sleep, although I think they got spoilt rotten by our local friends!

Morning of Sunday 3rd August she was on 100% of any machine she could be hooked up to to try & help her get enough oxygen.  The Doctors & Nurses were constantly trying to think of anything at all they could do to help her or make her more comfortable. I actually felt guilty as I could see how much they were investing in her physically & emotionally& were doing everything they could think of to try & give her time to recover from the surgery.  With nothing else left to try the decision was made to start her on a course of steroids & more diuretics but we were told to prepare ourselves. Watching her saturation levels on the monitors gradually dropping lower & the levels we were willing to accept dropping lower & lower, I think we’d begun to think to ourselves that maybe we need to start preparing ourselves. Having seen so many other parents leaving the ward to call family & friends to ask them to come & say goodbye, I was now the one putting on a brave face on for the other parents on the Unit as I headed out to make some phonecalls.

Within a couple of hours of the phone-call our closest friends had rushed to be by our sides. Now all of a sudden here we were being the parents with the screens around the incubator. Every kind of emotion goes through you by I actually felt guilty. Part of me hadn’t & wouldn’t accept that we were saying goodbye so I felt unfair. Unfair on the nurses looking after us as Gwendolyn’s needs increased. Unfair on the other parents who were trying to be optimistic about their own babies. And most of all guilty about having to ask people that we were so close to to come & say goodbye, knowing that they would never be able to forget being in that ICU to see such a helpless tiny baby.

That night (day 29) Gwendolyn had her first pneumothorax.  The team sprang into action around her, inserted a chest drain & managed to stabilise her as best we could.

Day 30. 4th August.

Our parents arrived that morning to see her & we took it in turns to take them in. We both seemed to go into practical mode, being factual & trying to keep our parents calm in that situation.  It was when I took my brother in last, that it happened. Everyone else was sat outside the ward in the family room waiting to go to coffee.  Rob & I had been stood there for maybe 1 minute before I saw her sats drop significantly. Her nurse, Emma, was immediately doing suction to try and help her.  I could see from the looks on their faces that this wasn’t the same as the other periods of suction over the past couple of days.  I turned to Rob & calmly told him that we should leave them to it as it would take a while. As I ushered him out the door she crashed.  I have no idea how I stayed so calm. I asked Jon to get everyone together & point them in the direction of the coffee shop but that I was going to stay there & he should come back once the family were off the ward.  Even with the crash alarm sounding & our consultant Anna running down the corridor, Jon & our families had no idea it was for Gwendolyn. I think I stayed calm because I’d kept saying to myself that if Gwendolyn felt me panic, she’d panic. She was hardly aware of what was going on around her because she was on so much pain relief & sedated, but I felt like the only thing I could do to reassure her was to stay calm for her.

Jon came back and we waited in the family room for news, supplied with biscuits & tea from Rachel’s stash. After a short while one of the girls came out & told us that they had her back but they were in the process of inserting another chest drain as she’d had another pneumothorax. Eventually, our Anna & Emma came & joined us.  It was the second time that day they’d had to tell us that she wasn’t good but this time this conversation was the one that no parent wants to hear.  Her saturation levels could be raised above the low 70’s at this point & there was nothing else to do. Any parent that has ever had to agree to a do not resuscitate will know how it suddenly hits you that there might not be a way out of this. This might actually be it. Anna & Emma were amazing.  I wanted to hug them as I could see how this was affecting them. But now we had to decide how to say goodbye.  How do you say goodbye? How can a parent ever prepare themselves to do that. After talking at length to Emma & Anna we decided to have her blessed that afternoon. We thought that it would be to do it rather than regret not doing it.

The ICU chaplain was with us within the hour.  He was very gentle with us & talked to us & Gwendolyn.  One difficult question was whether to take photos. Emma took photos & I’m so glad she did as looking back now it was a moment that needed to be marked.

Her whole time in the ICU up to this point Gwendolyn had been a pickle & this was definitely not any different. In true Gwendolyn form about half way through the blessing she made sure she had everyones attention. Her sats dropped & dropped & I could see the nurses poised to rush in. But it seems that once she had the attention she was happy as her numbers improved ever so slightly as the chaplain finished talking.  Well that or she had her own opinion on blessings!!

blessing

 

I spent the rest of the afternoon holding her on a pillow on my lap or holding onto her hand.  She made it to the evening.  The staff must have known that we’d never leave that night as they made up 2 beds in a room next to the ward rather than us crossing over the road to the welfare house. I think at about 0230am they convinced us to try & sleep. I lasted until about 6am before I sneaked back onto the ward. She’d done it.  She’d made it through the night.

Blue light Surgery

Until this point I’d felt like I’d kept things together.  Even when we were being told she had such small odds of surviving pregnancy I felt like everything was going to be ok.  It was at this point that I started to have that knot you get at the bottom of your stomach.

There wasn’t any parent accommodation available at Southampton hospital so one the drive down we were desperately trying to find somewhere to stay.  Success with the premier inn.  Southampton is a really good hospital but so completely different to what we were used to.  We felt like a fish out of water.  They have a lot of older surgery babies in their ICU so we could hear babies crying which you didn’t get at the JR as they all tended to be ventilated.  Gwen seemed to have coped with the transport relatively well so after checking on her we left her for the night and went for a big glass of wine.

Day 25 –  Surgery day.  after having a day for them to get used to Gwen, run tests on her and make sure she was strong enough for the surgery.  So surgery day.  Thankfully all done on the ICU ward and nice and early in the morning.  When he came out to tell us that the surgery had gone well I’ve never been so relieved.  She was still paralysed from the surgery & they would keep her that way until she’d been transported home and she was on medication to ensure her blood pressure remained high enough after the ligation but she was ok.  She was a stubborn little madam even then as later that afternoon she was already trying to move despite the paralytics.  The JR didn’t have any empty beds in the ICU so we were in for another stay.

Day 26 – Helen and Claire arrived in the neonate ambulance to take us home.  I could have hugged them.  Funny how you start thinking of the JR as home.  Gwen’s oxygen requirement increased a bit when she was moved into the travel incubator but she seemed to settle a bit after a while. They said we could head off now and they would meet us at the hospital.  We headed back to the car to drive north leaving Gwen in their incredibly capable hands. Not long after they called to say they were waiting a bit longer before leaving as Gwendolyn’s blood pressure was a bit low so needed some more medication.  Around 1830 they left Southampton hospital.  It was getting to late evening so Jon and I picked some fish & chips (excellent chippy in Headington) & went to sit on the bench outside maternity.  Not long after my life went into slow motion.  Now there are 2 neonatal ambulances at the JR but when I saw one blue lighting up to the door I just knew it was Gwendolyn.  We headed over there & they were so so calm taking her out of the ambulance & shepherding us in.  On the journey back Gwendolyn’s blood pressure had crashed, her heart rate had increased tremendously & she had a temperature.  Rather than turn back to Southampton they’d spoken to the consultant at the JR, & they’d made the decision to bring her home & blue light her all the way. When we first went in we sat in the ICU waiting area while they assessed her but it was literally less than a minute before one of her doctors was coming out to get us so we could see her.  I then saw the most incredible people spring into action, all over this tiny little baby.  In my time in the RAF I’ve seen some incredible teamwork in some horrible situations but this was on a different scale.. Gwen had severe hypotension and they were trying to work out why with the medication she was on, whilst treating her for the signs of infection she was showing.  Her blood pressure was so low it couldn’t be read with a cuff, only with an arterial line. They talked us through it all and I think by then, knowing us, they knew understanding the medical side would help us process what was going on. It looked like it might be sepsis and they were having to place a new long line into her scalp. By the time we left that night her blood pressure was coming up again.  I think that night we went home for about 4 hours sleep and a shower & change of clothes. Just to try and prepare ourselves for what might happen the next day.

5 Days to first Cuddle

With the nature of Gwendolyn’s delivery Jon and I weren’t aware of what happened in the first few hours until much later.

When she was delivered by c-section she did not breathe and was blue so the neonatal team went to work on attempting to resuscitate her. Her first gasp was between 2-3 minutes after she was born.  Initially they struggled to intubate her but as her heart rate improved with the neopuff they successfully intubated her 6 minutes after her birth.  She was then whisked off to the Neonatal Intensive Care Unit (NICU).  Her first few hours she kept the staff very busy and it wasn’t certain that she would survive the first 24 hours.  The next afternoon I was wheeled round to the ward to see her.  She was so so tiny I was scared to touch her.  Her nurse that day was Lizzy, who explained how she was doing (although with my morphine cloud I just remember nodding in agreement with everything!) and the machines around her. They’d reduced her nitric oxide and she was doing much better than in the few hours after birth. I just couldn’t believe how tiny she was and that she was still alive.

Gwendolyn - 2 days old

 

Day 2 – Over the next 24 hours her oxygen requirement had dropped a lot so they extubated her and instead she went onto high flow oxygen.  I couldn’t believe it at that stage that she was actually breathing for herself after being told so many times that her lungs would have a high chance of just not working!! Jon was able to start learning how to do nappies on her while she was still tiny ( standing was still a bit emotional for me!)

Day 4 – Moving Day! As Gwendolyn was doing so well and her oxygen had been able to be reduced, she was transferred over to the High Dependency Unit (HDU) across the corridor.

Day 5 – My first ever cuddle. Gwen had remained stable and with me able to move a bit easier her nurse suggested we have our first cuddle.  I was completely petrified.  I know most mums can’t wait to hold their newborn but she was so so tiny and delicate I was terrified that I might break her or something!  Words cannot explain what it felt like to feel her tiny chest breathing next to mine.  I didn’t dare move incase she wasn’t supported properly.  I completely understand why skin on skin is so important for them – but its definitely scary when they’re that tiny!!!

Gwendolyn - 5 days old. first cuddle

 

Day 9 – The first week had gone so well with her improving but the second week saw her oxygen requirement beginning to creep back up with increasing number of bradycardia and desaturations.  Every doctor and nurse will tell you not to fixate on the machines when you first arrive on the unit but for those first few weeks, when its your baby setting the alarms off, you can feel your heart pounding as you wait to see if she can recover herself.

Day 10 – Due to her increasing oxygen requirement, combined with anaemia, Gwendolyn is given her first blood transfusion.  An echocardiogram (heart scan) diagnoses her with a PDA (Patent Ductus Arteriosus). By this point Gwendolyn is on a CO2 monitor as her levels seem to be creeping high and higher.

Gwendolyn - 5 days old

Day 11 – Gwendolyn is moved back to the NICU as her oxygen requirement and CO2 levels are both rising and she’s having an increasing number of apnoeas. She is started on a course of Ibuprofen which is known to sometimes have a side effect of closing the PDA, which is responsible for making her lungs having to work that much harder at the moment.  She’s put onto CPAP a machine that whilst letting them breathe for themselves, provides a constant air pressure to keep the lungs inflated.

Day 12 – Gwendolyn’s CO2 levels have continued to rise and are now over 15.  The decision is made to intubate her – and strangely I’m almost relieved.  Watching her fight the CPAP machine and how hard she’s working to breathe, its almost better to see her not have to do all that work and have the effort made for her. We’re both thinking at this point that maybe the rest will help her and give time for the ibuprofen to start working.

Day 14 – Its only in doing her nappies that we notice that she’s not seeing anymore despite fluids going into her.  She’s gone into renal failure.  A scan shows good blood flow to the kidneys so its just wait and see while the diuretics are increased.

Day 16 – Gwendolyn goes into renal failure again. The ibuprofen is stopped and she is given more diuretics for her lungs.  The doctors start talking about maybe sending her to southampton hospital to have the PDA forced closed with surgery but as she is still so tiny, they want to try and give her time to grow bigger and stronger.  By this point Jon and I are at the hospital all day, everyday.  Our job as parents seems to be to wait to see if anything changes, just to hold her hand or change her nappy.

Day 22 – Gwen’s not getting any better and is still on the ventilator…. Her CO2 levels are rising again as is her oxygen.  A cardiologist comes to scan her heart again and he says the PDA is quite large which is putting extra stress on her lungs.  With her condition he recommends that she has the surgery to force the duct closed to try and give her a chance.

Day 23 – It all happens very very quickly and before we know it Gwendolyn is being prepared for ambulance transfer to Southampton for surgery.  Off we go to a new hospital to see if they can help her..