The sleepless nights begin

Yesterday afternoon Phil and I wheeled our gorgeous little chap into the parent room we will be making our home for the next three nights. We ordered some takeaway, and enjoyed our night in. Or at least that was the plan.

We found ourselves sleeping next to what sounded like an array of small farm animals. Sniffing, snorting, squeaking, and clucking....and that was just daddy! Jokes aside, we certainly weren't used to this little noise making machine by our bedside. When Jensen was making a noise, we took turns trying to settle him, and when he wasn't making noise I was sat staring at his Grasbey monitor to make sure he was still breathing. Every time I realised I had drifted off to sleep, I woke myself in a panic to watch the flashing light of his breaths. I was a little more paranoid than I believe I would have been had his monitor not alarmed earlier in the evening. We ran and got the nurse and doctor but Jensen was fine, and it may have just been the monitor, or Jensen breathing shallowly. Scary nonetheless and unsettling, particularly on our first night alone without the nurses.

Jensen ended up feeding a lot last night, whether he was extra hungry, or I just thought he was because he was making noise. We've mixed up his supplements and medications so they are just to be administered during the day, not overnight, so essentially now if Jensen feeds well at midnight and 4am he shouldn't require top ups, as these were primarily for supplement intake. This makes life a little easier in the wee hours.

We have had a nice day together today, trying to catch up on sleep when the little man was. We tried Jensen out in the car seat, and both agree it fits him nicely. We took him out with us for some breakfast, then came back for a bath and weigh in. Little fella lost 4 grams this week, which worried me initially, but now realise it's most likely due to a combination of burning extra calories on all feeds, now just having 6 or 7 feeds rather than 8 due to demand feeding, and dropping his calories from 26 to 24.

Tomorrow daddy is playing the waiting game at home for the oxygen to arrive, and finishing off the last minute jobs around the house for little fella's homecoming. Two more sleeps people, two more sleeps!

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Can't even wait!

So I'm not sure if any of you are doing anything exciting on Tuesday.......but we are. Our little man is coming home!! Yes, in 5 more sleeps we finally get to push our little and so special bundle of joy out the doors of the NICU, into the car and introduce him to his new life, in his new home, just where he belongs. We can't wait!!

For the last week or so I've felt like we were going on a big holiday and hadn't started packing yet. I've been running around like a mad person, writing lists, and lists for lists, of things to do to get ready for the day we've been waiting almost 18 weeks for. I have managed to cross most things off these lists, and am feeling more prepared and very much ready for the big day. Phil and I are just bursting with excitement.

Yay! I'm going home with mummy and daddy!

So the plan goes like this....

Little man is having another download tonight to ascertain the level of oxygen he will be coming home on, so the discharge nurses can order the oxygen tank. We are not sure how long he will need to be in oxygen for, but is likely to be 2-3 months. We will have one installed in the house which has 9 metres of tubing, so we are mobile enough around the house, we will also get a portable one in a back pack so we can get out and about with the little scrap....if we are brave enough!

We are rooming in with Jensen in the parent rooms Saturday, Sunday, and Monday night. This means Jensen, Phil and myself, will stay together in the room so we get used to looking after him ourselves and feeding through the night etc, while the nurses are still at hand should we freak out about anything during this transition period. Phil and I are both much more confident in the care of our little man now, so I don't predict us needing the 'nurse' button. We can still plonk him back in his little bed space should we need to get out to do things, or take a break. We can take him for dinner in the parent lounge or downstairs of the hospital, and enjoy every minute of him.

The oxygen arrives Monday, so Phil will be at home awaiting delivery and instructions for use. Once it arrives, daddy will bring the portable tank back to the hospital, and with a nurse, we will make a return visit home with Jensen to make sure it all works correctly and we have what we need. Back to the hospital for one more night together, then we will be discharged on Tuesday morning, when we can finally start our life as a little family, in our home, rather than part-time parenting in the hospital.

The discharge nurse is busy making all our follow up appointments, and we will be back only a few days after leaving to visit the Neonatologist in the Baby Clinic. Home visits will commence the following Monday, with plenty more in between.

I'm sure it'll be a strange feeling not making our way to the hospital every day, but I am certainly looking forward to little things like staying in my pyjamas past 6am, eating breakfast and lunch at home, and not having to leave the house again after dinner, instead settling in by the heater. We are very much looking forward to becoming full-time parents, and just wasting our days away staring and cuddling our gorgeous little soldier.

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Four months old

Today little man is four months old....and is starting to behave just like one. He is awake more often, lets everyone know he is hungry, and is very alert.

We have commenced 3-4 hourly demand feeding today. Rather than waking him for a feed third hourly, he is now calling the shots and can wake anywhere up to fours hours for a feed, and if not we will then wake him. This can also work the other way with less time between feeds...perhaps two hours. This change occurred today as he woke at 2am rather than 3am, demanding to be fed by nurse Dana, so she had to top him up with an extra 10 mls, pushing his feed to 59 mls instead of his usual 49 mls. The nurses think this is because he is getting more from a breast feed than a bottle.

I had my first experience of people making me feel like my choices were not quite right today. I know this is common amongst parents, especially first time mothers, and I didn't enjoy it one bit. We had his car seat fitted today, but a few comments have made me think this seat won't be suitable for him until he is another kilo or so heavier. We will try him out in it on the weekend and if this is the case, will hire a capsule for a month or so. I had done so much research on these products and felt a bit deflated with this backward criticism. These people are letting everyone know what worked for them, and bottom line is they haven't had a baby born at 23 weeks, so all rules go out the window. I've been given advice about swaddling, blankets, beds, and car seats all in the matter of a few hours. I'm sticking with our decisions......

Today one of the nurses that was at Jensen's birth, Alexa, was on so I asked if I could have a chat with her. As I have had to postpone our debrief meeting with the obstetrician again (it was booked for the day after we get home), it once again brought up the issue of should we go or not. I thought if I could ask some questions about the birth with someone I know, it might help make up my mind. I asked her to tell me what she remembered of the evening Jensen arrived.

She said the NICU team came into the birthing room when I was pushing. .. I thought they were all there when we arrived. The main thing I wanted to know was if Jensen was breathing when he was born. She told me he was. His heart rate was very slow, but that is not unusual for any baby straight after birth. She said he was very active, particularly for someone of his gestation, and this took her by surprise. She said he didn't need any form of resuscitation...usually such preemies need compressions, or adrenalin, none of which Jensen needed. He made a small noise, and was then intubated immediately. The doctor made a comment about losing the heartbeat, but she wasn't sure if the doctor had lost it, or the baby had. I did not hear this comment, but he was saying it to the NICU team. Alexa went home that night, never having been at a birth of a baby of such a young gestation, particularly one so feisty, and thank God and our angels for his feistiness......

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A breath of fresh air

Today Dr Mary said we must get out of this place for a walk......with Jensen! No arguments here. We rugged little man up, connected ourselves to the portable oxygen tank, jumped in the hospital pram and off we went....strolling down the hall we have walked thousands of times alone, this time with the reason we walk those halls so often....our little Jensen.

Now that Jensen has had his saturation probe removed from his foot, and is now on the apnoea monitor he will go home on (the grasbey), we are much more mobile, and can take him on little walks throughout the hospital grounds. The monitor hangs off his pram, or our wrist, and alarms should he not take a breath for 20 seconds. We walked the long way round to the main entrance of the hospital and entered the big wide world of the outdoors. Our little man took his first ever breath of fresh air. We found ourselves a little nook away from patients, visitors, and any other potential germ risks (on the middle of the shrubby roundabout) and enjoyed our time in the sunshine...that was until a little girl came frolicking past and sneezed. We made our way back inside. We plan on doing another little 'outing' tomorrow, maybe when grandma and grandpa are here.

For almost 17 weeks now the nurses have been encouraging us to have a night off from this place. Tonight is that night (well almost). We said once we had a date for coming home, we'd go somewhere nice for dinner to celebrate and have a date night..(before life at home turns into feeding and sleeping in minor increments). We left the hospital early and had a lovely meal in the city, and caught a few of the Vivid lights while we were out and about. Mummy had two glasses of wine, and that night pumped and dumped. We did of course drop in on our way home to say goodnight to the little chap.

Each and every day we are getting that little bit closer to home. Little man is now getting used to 7 sucks a day, only one more to master.

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The wheels are in motion

Little man weighed in at a hefty 2130 grams this morning and enjoyed his morning bath before a feed and sleep. He has moved on to six sucks today and seems to be enjoying feeding for himself. I feel like the whole feeding thing has just clicked with him now. He wakes up sucking, so I believe he will do well when his feeding tube is removed in the coming days.

We had our discharge meeting this afternoon. Mummy turned on her 'teacher' and entered the meeting with a clipboard containing a two page table document full of questions and comments on every facet of Jensen's being. I'm not sure what other parents do in these meetings, but we had many comments on the quality of our questions. We covered everything from his lungs, oxygen requirements and expectations, his thyroid, his burn, his bowel, and his hernia, to feeding, eye tests, physio, OT, and colds and sniffles. Dr Mary says it is likely we will present ourselves to the hospital 6-8 times in Jensen's first 12 months home ('no we won't' mummy says to herself). This is mainly because of the condition of his lungs (Chronic Lung Disease), meaning should he get a little cold or sniffle, it would likely escalate into Bronchiolitis, or other respiratory issues quite rapidly. In this instance we need to go to Emergency. As it is coming in to winter, we will be in lockdown for sometime, only allowing minimal visitors, and only those with a clean bill of health. He's not to have any contact with small children, particularly those in day care or school. He's also not allowed to be put in any form of childcare for at least 2 years, which is most definitely not in our plan anyhow. There are also lots of rules and procedures that have to be adhered to regarding the oxygen tanks. It is likely he will be on oxygen for 2-3 months after coming home. We have to notify the local fire brigade and strata of the building. For the first month after discharge Jensen will still belong to the NICU, so we can call anytime with any queries, have weekly home visits and many doctor follow ups. Jensen will be part of the hospital's follow up program for all babies born under 29 weeks. They will see him until he is 5, and ready for school, alongside regular appointments with the Paediatrician, Physiotherapist, and various other specialists.

The plan is for us to be home in the next week and a half to two weeks. We do have a discharge date, but we want to make sure closer to the time that this will indeed be the time we depart the NICU, as of course the whole process is Jensen led.

Today, after 17 weeks, I finally worked up the courage to ask the question I'd been wanting to ask all along, but was too fearful of the answer........Is he going to be alright?

The answer we got today was a definite 'yes'...

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Hip hip hooray! I'm zero today....

After 16 weeks and two days little man has finally reached his due date. The day we were supposed to meet our bundle of joy for the first time, the day Phil and I were supposed to become parents for the first time, the day we were looking forward to, and planning around from the day we knew we were expecting. Instead we have our beautiful little Jensen, 6 days short of four months already, who we know so very well. A little man as brave as a lion, strong as an ox, and as determined as Wylie coyote. A now healthy little man on the road to coming home.

A little man with the biggest birth day cupcake in town...

Mummy turned up at the hospital this morning, giant cupcake in one hand, 'birth' day balloon in the other, telling anyone who would listen, Jensen was zero today. Lots of hugs, congratulations, and visits from friendly nurses.

Our planning for discharge keeps going along nicely. We have our discharge consult on Friday, where anyone ever involved with Jensen gathers in a room to discuss ongoing progress and management. There will be the dietician, physiotherapist, speech therapist, a nurse, a Fellow, the consultant, social worker, burns specialist, eye doctor, surgeon, Endocrinologist, and who knows who else. I have compiled a two page list of questions and comments for said meeting. It's the only consult that I have looked forward to, as all the previous ones where often met with news we didn't want to hear...

It's all onward and upward from here....

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16 weeks

Today little man is 16 weeks old.

The last couple of days have been pretty uneventful. Little man doing extremely well breast and bottle feeding and is looking at increasing his suck feeds perhaps in the next day or two. Mummy was shown how to administer Jensen's vitamins today, as he will be coming home on quite a lot of supplements. These include iron, a multivitamin, his extra calories, Thyroxin, and a few others depending on the next blood test. These go in his bottle and makes the milk look terrible, but taste of sugary loveliness....needless to say, little man drinks it down a treat.

More talk of discharge today with more preparations taking place. We are to hire a monitor called a Graseby tomorrow for us to take home. As Jensen will be coming home on oxygen, he must be monitored. I very much like this idea, as the machine not only monitors his oxygen saturation, but ticks on every breath he takes, and alarms if he doesn't after 20 seconds. You can turn the tick off if feeling confident, and would like a 'tickless' few hours of sleep. The monitor is very portable and hangs off your wrist or crib, it also downloads the data for the nurses to check periodically. The discharge nurses will visit us three days after arriving home and once weekly for 7 weeks. We also have the support of visits from the local Baby Health centre, Lactation clinic at the hospital, and Miracle Babies Foundation if need be. However, I am still feeling nervous about bringing the little chap home. I've turned into a cleaning psycho germaphobe...besides washing everything in sight, I've now started disinfecting everything...even employing the scrubbing hands of my mother to help wash down walls! (Thanks mum).

As we will be coming home on Oxygen, we have to inform the local fire brigade, and the strata. We also have to be careful with open flames etc in the house. The tank will be set up somewhere central in the house and has 9 metres of tubing. We are hoping this will reach both the bedroom and lounge room. We will also take home a portable back pack tank to take with us on outings. Hopefully our pram won't be too much longer so we can venture out for a little walk on a sunny winter's day. Other than that we will be bound up inside escaping the winter cold (and germs), until we become used to being parents, with our beautiful baby at home.

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The countdown begins

Tonight little man is having what they call a download. This is where he is put on a different monitor for 12 hours to gauge his true oxygen requirement. Nappy changes and feed times are taken into account where saturation levels may dip, and in the morning his oxygen level will be adjusted according to the results from the download overnight. This is done in preparation for going home, to ascertain the size of oxygen tank required to bring home for Jensen.

This morning we commenced the discharge checklist....a very detailed list of what needs to be done and achievements he has to reach before coming home....yep, they are getting us ready! Mummy has been running around in a flap today trying to get organised and sorted for his homecoming. Our house currently looks like we have been ransacked!

Another bath and weigh in today, little man fell 20 grams short of the 2 kg mark, but won't be long now. He's doing well with his four breastfeeds and is waking up for feeds and looks eager to suck, however Dr Jenny says give him a day or two before going on to five. He's burning a lot of calories feeding for himself, rather than gaining a full tummy by tube.

Jensen had his hearing test today and passed with flying colours...next one is only necessary when he is 12 months corrected age. Often preemies don't pass their first test and require two or three more tests before leaving the NICU, not our little Jensen. Even when he was ventilated we noticed he'd move his head to the direction of our voices, so we have never been worried about his hearing.

Yesterday was International Kangaroo Cuddle Day. We arrived to kangaroos everywhere, and the head nurse in a kangaroo suit. We have a challenge to give the most kangaroo cuddles, so we of course are doing our best to add to the hospital's tally. Jensen was even given a little kangaroo to help signify the importance of the day. If only we could back date our cuddles 15 weeks or so...

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It's a suck fest

Little man has outshone himself today.

After a visit from the speech therapist, a successful bottle feed, and vast improvement in breastfeeding, Jensen has gained permission to slowly commence some bottle feeds. These are not full feeds to replace breastfeeding, but he will be topped up afterwards via the bottle on occasion rather than by the gastric tube. Effectively this is another step closer to coming home.

Yesterday on his first go he finished a bottle of 25 mls with minimal choking and spluttering...a very impressive effort. Today, we moved on to four suck feeds and three bottle top ups. By the fourth one he was so exhausted we finished off with the tube. He's done so well, and everyone is so impressed with him, exceeding their expectations yet again. So from here on, we are carrying on with the four suck feeds, and need to gradually work our way to 8. When this is accomplished we can come home.

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Week 15

Blogs have become few and far between of late. I'm so tired. Our days and nights have become very busy with feeding, cuddling, bathing etc, and home time consists of preparing for the little man's homecoming with washing all of his new little outfits, bedding and anything else that sits still long enough..

Jensen is now 15 weeks old. He weighs 1944 grams, and has a head circumference of 30.5 cms. Yesterday he started a new medication for an under active thyroid. This is not exactly the problem. He has enough of the hormone but the thing that makes the hormone is high, signifying that he is working very hard to make enough Thyroxine.

The speech therapist tried the bottle with him this afternoon and she has given him a gold star. His breastfeeding has improved more than she'd hoped and he did much better with the bottle, only de-saturating minimally, and recovering quite quickly. We are moving onto four sucks a day tomorrow and trying to give his top ups via bottle rather than by tube. So fingers crossed.

That's all for today. I need to sleep.

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Mother's Day

Today is Mother's Day, my first Mother's Day. The extra one Jensen gave me by arriving so early in the year.

Phil and I had planned to go somewhere for lunch, but unfortunately, this meant spending Mother's Day lunch away from my baby. We ended up spending the morning, afternoon and evening at the hospital with little Jensen having cuddles, and snuck off for a few hours for a quick lunch and a little more shopping.

When we arrived this morning Jensen had a couple of cards in his cot. He had given mummy a voucher for a much needed massage and a lovely poem with some footprints. In comparison to the footprints on my birthday card, his little feet look massive.

He got naked and was weighed today, weighing in at 1882 grams, and daddy gave him a bath. Things are so different here in Low Dependency or special care as some call it. The purpose of this part of the unit is mothercraft, so the focus is bathing, feeding, settling, sleeping etc. It's also very hands on. We can pick Jensen up whenever we like, wheel him to the bath (minus his oxygen) on our own, dress him, feed him, bathe him, whatever we like. This is taking some getting used to, after months of asking permission to touch or cuddle our son and when allowed, only minimally.

Jensen is at a weight where we can take him home, he can also come home on oxygen, so here our aim is to work on feeding. He's doing three suck feeds a day, which he is now taking all three offered, he needs to be doing eight, and having minimal top ups. The top ups need to be with bottles, not the gastric tube. This is what we need to work on, here in Low Dependency.

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What an exciting day!

What started out as a bit of a stressful day, turned into a very pleasant, productive, and extremely exciting one. Phil and I had set aside today to do the majority of our baby shopping, buying Jensen's cot, bassinet, bedroom furniture, and many other necessities. Initially I found it to be a hard day, with feeling ripped off again as we had to scoot around in four hours to buy the things we needed, rather than it be a leisurely and exciting experience. It was exciting once completed, but there is a reason women are pregnant for 9 months...to organise, shop around, and plan the décor of a baby's room, and not have to conquer it all in one afternoon. Nonetheless we have what we need, and are feeling a little more prepared for Jensen's arrival home.

This is very lucky because when we returned to the hospital from our shopping trip (where Phil didn't complain once about my endless indecisiveness), we were informed we were moving to Low Dependency! So off we rolled down to the hallway, one step closer to the exit, to our new little home for the next little while. A very exciting time and we can really see the finish line of our time in the NICU.

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