Mini Milestones

Beginning of January, apart from Nico's "episodes", also brought with it some fabulous, tangible progress, or at least token signs interpreted as progress.

• He reached 1.5kg
• He got to wear clothes
• He moved to cot
• He had his first bath

Until 4 months ago, I never would have thought dressing my baby would have been called a milestone. Surely it is a given: have baby, dress baby. Obviously not. I walked into the Bay and saw an open cot squeezed in between Nico and his neighbour ... I thought "Hmm.. obvioulsy tight for space!" which had I thought about it, would have realised was a ridiculous assumption. A NICU is not somewhere you can just squeeze in extra beds. Each station has so much built in equipment, if it was to be full, new babies have to get moved to another hospital. The open cot was for Nico!

I was so excited. Not only would this make touching him and seeing him so much easier, I also knew it meant CLOTHES!! He was in hospital clothes the first day since no one had told me he was moving, but the next day I couldn't wait to fill his litte drawers with his tiny clothes. I couldn't believe he almost fitted shop bought clothes! 00000 were almost the right length although they swam around his middle.

About 4 or 5 days later, I was in for my second surprise "Are we going to bath him today with his weigh?" the nurse asked me. I grinned and told her he had not had a bath before... I thnk she was almost going to say "Well we won't do one, maybe there is a reason" but the ecstatic look on my face must have persuaded her otherwise. I was too scared to actually hold him in the bath so two nurses did that part, and I washed him. Again, who knew this would be a milestone? He did so well...he didn't have any big desat's, he didn't require any higher oxygen and when we put him back in bed, apart from a bit of a grump as I dried him off... he was a happy lil man.

The next bath, 2 days later, I held him and washed him while the nurse held his prings in... and the 3rd bath, I did all on my own. Finally I felt like a parent! Saying that sounds like I hadn't yet bonded with Nico, but that would be far fromthe truth, I had bonded, but felt entirely useless and like a bystander in my baby's life. I'd gotten to change nappies and check temperatures regularly and give him cuddles of course, but nothing had felt quite as "he's really my baby and he WILL come home with us!" as that moment.

I don't like Thursdays

The steroids got weaned down over the course of 7 days, His oxygen requirement had come down well... it wasn't at the perfect 21% but it came down to low 30's, his lowest since the honeymoon first week he was born. One fact about oxygen I forgot in a previous blog is this "Parent's mood and attitude to the world directly correlates to their neonate's oxygen requirements" Low 30's therefore made us see beauty in the weeds growing along the freeway.
I also neglected to mention that Christmas fell during this time. If I were a psychologist, I would think the fact that I neglected to mention it may also be a reflection of my guilt. Our 21 month old got a few presents and a big girl bed etc etc but she didn't get a Christmas. She got breakfast with our new neighbours, a trip to see her brother and some ham for dinner, but she didn't get a Christmas. Ok, she is not even two, she will not be scarred for life, I know this. If I was in a less woe-is-me frame of mind I would even realise that it was never going to be a big traditional Christmas as I was meant to be 7 months pregnant so we were not going to visit our family in NZ, it was always going to be just the 3 of us.

Anyway... boxing day, at 11 weeks old, my husband had his first cuddle and things were looking pretty good. Pop quiz : What happens when roller coasters go up?
New Years Eve. Thursday. We are having a barbecue at our place with 4 couples and their toddlers. I called the hospital for my update and although Nico was fine, the nurse told me that 2 hours ago they had had to resuscitate him! I asked if I should come in but she said that there was really nothing to worry about, he was doing fine until it happened and he was doing fine again now so it must have just been something in his airway. I hung up not feeling fantastic but I also knew I needed a night with good company so I tried on my happy face mask and made it fit. I called the hospital every 1 or 2 hours and got the same report, he was settled and well. To state the obvious, it played on my mind all night and even when we went to the hospital at 10am the next day I couldn't shake it. All i was thinking was "Did he actually die?" I couldn't talk to my husband about that kind of thing, he would tell me to stop being melodramatic and secretly go into a darker place than he (we) already was. It took about 3 days til I just had to tell someone what I was thinking. I chose carefully as the 'wrong' answer (ie the one I was not fishing for) could have made me feel worse, but also not someone who would just go "Of course not honey" just to appease me. I asked a wonderful person via Facebook chat, she had been here on NYE so knew what I was talking about. She took a moment to think, talked to her husband about it and came back with the perfect answer
Q If you get resuscitated, does that mean you died? A: No. It just means you could have if they hadn't intervened.
When we did go in the next day, it was the same nurse looking after him who had been there when it happened. She said it was actually quite amazing because usually they are slow to pick up after something like that but her words were "Once he came back, he opened his eyes and looked at us as if saying 'Umm... excuse me. What are you doing? Back off' and was back to his normal self"
I approached the doctors to ask if I should be concerned and they explained it was 'purely mechanical' and there was no problem with him, he must have just had some secretions blocking an airway.
The fact that that happened then, in hind sight, was the best thing that could have happened. If it didn't happen, there would have been chaos the following Thursday. The whole hospital would have heard a call over the PA "Adult Code Blue, NICU Bay 8. Adult Code Blue, NICU Bay 8" as I had went into cardiac arrest.
After arriving at the hospital at 6am (as I usually do on Tuesdays and Thursdays to have a full day with our almost 2 y/o) I was elated. His oxygen was great, he was really settled and looked fabulous. While his nurse was doing handover at her other crib, I watched his SpO2 (blood oxygen saturation) drop and drop and not climb up like it should. When it got to 50% I motioned quietly for one of the nurses waiting her turn to come over and check him. She looked, said he was ok and we both watched. Next thing his heart rate plummets from his usual 170 to 40 and still dropping. Docs are called and come running. Around a crib that can hardly fit 3 people around it, there are 2 doctors and 4 nurses. Needless to say, I was not in the huddle. I was pacing around reminding myself of last Thursday and how it had been perfectly fine, so fine they hadn't even bothered to call me to tell me it happened, just waited til I rung.
5 -10 minutes later, I was beside him again, he had slightly high oxygen requirements but was settled and behaving normally. When I called that afternoon, his oxygen was even better than it had been pre-episode. The nurse and I concluded that the doctors hypothesis was incorrect, there was no blocked airway, Nico simply did not like Thursdays.

Can we go just go home ... I am so over it!!

So the steriods were given... little Nico and his failing lungs needed to grab on to this opportunity and grab it quickly as there was no Plan B. I was calling every few hours and the oxygen requirements were coming down but oh-so-very-slowly. From all accounts, it was possible that he could show marked progress after 24 hours, by 12 hours he was better than ever and still improving.
I was on the top of the world and decided that I would be starting the nursery. Obviously this had not been something we were in a hurry to do before his early arrival and not something we wanted to do the first few weeks in case it served as a permanent reminder should all not go so well. The rollercoaster was on rapid climb... unfortunately there are rules known by all roller coaster fanatics. There is only one reason for a climb and that is to plummet somewhere twice as fast.
A side effect of steriods, and one we were well aware of, is that it lowers the immune system. Giving Nico steriods when he wasn't even finished antibiotics was not optimum. The next phone call we got was to advise me Nico had a cold and " we have put him in a box." It was pretty obvious that this was not a literal term but it still didn't paint pretty pictures in my mind. A "box" is simply a tape square on the floor around his isolette where nurses and visitors must wear mask and gloves when opening his little portholes. It was more for the other babies in his Bay than for him. The steroids were stopped after 2 days of a 5 day course. A cold was not a big deal but it would be unwise to continue. Another slow 3 weeks ensued and he remained in the box. No cuddles. Barely any skin to skin touch. They did allow me to not wear gloves after a few days but it was limited.
So many times I fantasised on walking in, putting him in a car seat capsule hidden perfectly in an oversized bag and walking out. I was done. I could look after him at home, I had watched them long enough. SpO2 goes down, turn O2 up. Simple. We'd be fine. Then I would reprimand myself for even implying that these absolutely inspirational miracle workers in the NICU had such an easy job.
His oxygen requirements climbed slowly but steadily and I was anxious to get the steriod course done again. He finally got 3 negative test results in a row and the steroids were allowed to be reattempted. 3 days later he was extubated (tubes out) at 10 weeks old and put onto CPAP - basically allowing him to breath on his own by keeping his lungs slightly inflated to make it easier for him, like a balloon that has already had a breath put in. It is given through nasal prongs and therefore much less invasive. The CPAP didn't last long but thankfully they were able to avoid reintubation and be ventilated through the prongs.

10 days went by peacefully...

The worlds longest rollercoaster begins

The change to HFO ventilation felt like a huge, horrible step backwards... a sign things were not going well. Then came the next hit, knocking our spirits for 6 - the heart duct had to be surgically closed. Our little man, not even a kilo in weight, was having an operation. This time I didn't need to be prompted to ask questions. I had a million of them. How often does this op get done? What are the risks and side effects? What will they do? Could it not work? What if they didn't do it?

The PDA ligation was one of the most common operations on prem babies and involved keyhole surgery to put a little clip on the duct. It was as risk free as any operation could be and had no side effects. If I had have gone with my heart, I would have been an emotional wreck, so I put on my pragmatist hat and sucked it in. I sent Geoff along on the morning of the operation to sign the consent forms. There was no way I could go in today, all I would have thought as I looked at his tiny face would have been "Is this the last time...?"

I pottered around home playing with Brooklyn (20 months) watching the clock, waiting for the phone to ring... it didn't ring til 3 or 4 in the afternoon. Success, he did well but I was advised - for my own sanity - to wait an hour or 2 for him to really settle and not need so much monitoring. I was also warned he had a 'drain' in his side as there was a leak in his lung which would close on its own but the leaking air had to be diverted for obvious reasons.

From weeks 4 to 7 things were fairly slow, his oxygen requirements were up and down and his saturations were swinging all over the place still. There was an attempt to change him to regular ventilation again but it failed. He had several infections and was on and off antibiotics so often I couldn not keep up.

The 'novelty' had worn off and I was ready to walk in there, pack him into a car seat and take him home, I was so over it. The frustration was driving me insane. I had really thought that in 7 weeks we would have seen some progress but apart from weight gain... nothing. We had a family meeting with the doctors and I expressed my concerns. They assured me it was common and it was not neccesarily a bad sign. We talked about steroids and they said once the antibiotics had finished, if were happy to start, they would commence. The aim was to get his lungs stong enough to extubate (take out tubes) and have him on CPAP which is a form of nasal ventilation.

Side swiped once again, we got a call at 7pm, just 5 hours after the meeting, saying Nico had been in 100% oxygen and still not coping for the last 2 hours. They were starting the steroids immediately as an emergency intervention. There went another night's sleep.

Going home without my baby

The previous blogs were all written 3.5 months ago, when I came home from hospital and our son remained. I did not sleep more than 3 hours a night for 3 nights so stayed up and wrote it as therapy. It worked.

Now to get up to speed... I will likely miss a lot but I hope I can remember most things since I am doing this for myself so in years to come, I can remember how far we have come

Seeing Nico for the first time since delivery was a mix of emotions. I actually felt that I was going to pass out. I am not sure whether it was from being overcome by Nico's tiny little body covered in foil, the NICU environment (my dad describes it as walking into a space ship) or simply from getting up and having a shower less than an hour after delivery, cold corridor and then into the hot NICU bay.

He was in an open crib with a foil blanket (see previous post picture). A tube down his throat for ventilation, a line in his belly button for blood pressure I think, two IV lines, a sat probe around his foot, 3 pads on his chest for heart and breathing monitoring and possibly a tube down his nose for feeds but that may have been the next day or 2. His skin was transluscent and had no fat underneath making him quite a frightening dark red colour. I immediately became grateful for the time I had to ask all my questions before birth so it was not such a huge shock. I clearly remembered feeling so wrong asking "What will he look like? Like what do we need to be prepared for?" before he was born, as if I was worried he would be deformed or something. I was discharged 36 hours after Nico's birth. I was glad to go in some ways. After nearly a month, my own bed and real food was my idea of heaven. I hated leaving without my litle man though. It just happened that we went down the lift with a couple taking their baby home... and a pregnant women coming in the door as we left. I felt a bit jealous but I thought it would be worse. I had 2 friends due to give birth within the same week as me so it was nice to know I wouldn't crumble at the sight. And so began the transition to our new home/hospital life. The first few weeks I had the same emotions every visit. Anger as I arrived. Parents should not have to "visit" their newborn! Fear as I walked through the hospital. What if they tell me he is in a bad way Anxiety as I got to the door of his bay. Would I see 10 doctors swarming around him Intense happiness seeing my little man just fine, sleeping soundly in his isolette The first week was fabulous. He did so well. He dropped the standard 10% of weight (down to 640g!!) and although not breathing himself, was not needing much extra oxygen. The world revolves around oxygen requirements in this land and the lower the better. He had a Grade 2 bleed on the brain, this was fine and would likely resolve itself. He also had a duct to his heart that hadn't closed, again, this would probably resolve itself in time. Things you learn quickly about oxygen in NICU Oxygen saturation (SpO2) should be between 86-94% for bubs under 36 weeks SpO2 quickly tells you if you baby is 'happy' or not. High=happy, low=not SpO2 being at 100% for too long can cause blindness for Sp02 being low (less than 75 ish %) for a long period will cause brain damage The aim is to get oxygen requirement to 21%, air. High oxygen requirements are not good, means lungs not doing well Nappies were changed 6 hourly along with taking his temperature. Meds were given at their various intervals. We felt useless at first but then Geoff changed his nappy at 3 days old.. I was more hesitant and waited til day 6. Feeds started after a few days at 1 ml per hour. At about a week old we got a call at 10pm telling us he was not really coping on the standard ventilation and had to be changed to a High Frequency Oscillator. HFO. I just said "Ok...", hung up and wondered what it all meant. I didn't think to ask any questions and the next morning the nurse laughed and told me the doctor thought I must have been a bit bewildered since I didn't say much. The machine made his chest, and therefore his whole body, shake as it gave him 900 breaths per minute. Not a typo. 900. It also made a constant rattling noise. It was not until seeing him that I understood why they called. Not for permission but to stop parental heart attacks. Note to self: when hospitals call to tell you stuff, ask questions.