More growth

I have a little man lying on my shoulder. Idive in at night to administer the bottle while I still can! He weighed in today at 2960 grams - an increase of 150grams since last week's 240gm increase. Good progress given that he's doing his best to breastfeed. It's amazing how much energy/weight is used up doing this. Again we have seen wonderful answers to prayer on that front with him currently managing to have goods feeds from the breast twice a day of six or seven feeds. Looking to up the feeding now over the next week with the best midwife on the planet.

First 10 days at home

There was a point somewhere in early September when writing this post would have seemed extremely unlikely. At that point our little boy’s stomach was blown up to three times its normal size, he was being pumped around the clock with 4 antibiotics, blood transfusions and lungs fully ventilated. There was a very real likelihood that he would not make it and our doctor prepared us for the worst. Now he is at home. Pause to consider the miracle that has taken place. I do. Often.

It may be difficult for those of you who, like us up to 3 months ago, have only experienced the joy of having a term or near term baby to comprehend the absolute elation that our family has experienced for the past 10 days. For the first time in 3 months we are all together in the same house. Matt thinks it’s Christmas having his mom and dad back with him. He wasn’t so sure about his younger brother at the start - his first two comments in the car on the way home from hospital sitting next to Sam were: “Who is THIS?” followed shortly thereafter by “This car is very full of people!” Thankfully that only lasted for the car trip and he now dotes on him more than anyone else. He has claimed the lower metal tray of Sammy’s hospital trolley as his “bunk bed” and often has little naps there below his sleeping brother.

It’s brilliant starting to feel a vague sense of normality after so long in hospital and to be experiencing some of the normal things of early parenthood, like the exhaustion of continued sleep deprivation or lying in bed at night listening for your newborn’s breath. The normality gets rocked a bit by the continued breast pumping, the breathing monitor and the three medicines and five supplements that he needs daily.

I’ve been sporadically updating this blog. Do you know if you type SamuelBerry as one word into Google it's the first hit! If you’ve been following it you’ll know that Sammy is coping very well with being away from his corner in the NICU. He had his first visit back to his beloved nurses and doc on Wednesday for his 1 week checkup and had gained 250grams to 2.7 kgs. Big up for the boy and his amazing mom who has now pumped more than 70 litres of breastmilk to sustain that growth rate! Everything hinges around weight and infection control at the moment so we continue our best efforts to emulate the NICU conditions with full-scale germ warfare and limiting visitors to grandparents, our sisters and medical staff. Our hands are beginning to feel like crusty old leather from all the handwashing going on.

As an encouragement for the hundreds who have prayed for Sam and us (and for those who still doubt there is a God who answers prayers) I did a little scan of the blog and counted eighteen specific prayer requests since his birth in August. Only two were not answered within the space of three days. Anyone in the know will tell you exactly how much can go wrong with these littlies: eyes, heart, brain, kidney, lungs, liver, intestine, bowel, infection. Prayer is certainly in no small part also the reason that Mich, Matt and I remain relatively whole, in body, mind and spirit. More than 90 meals have helped too! We continue to be blown away by the support and love that has surrounded us so faithfully all this time. We’ve heard so many heartening stories from parents of their kids taking on Sammy as their evening prayer project.

I’ll be keeping the significant updates coming mainly via the blog and occasional emails, particularly around weight gain. On that score and the continued manageability of this all for us, please pray that Sammy’s strength will increase to allow him to breastfeed the whole time. Currently he can only manage one or two shots a day. Getting this right would slash the amount of round the clock effort required on the breastpumping, equipment washing and sterilising front. Apart from that we just continue to be very, very thankful!

With love and thanks
Terence

One week checkup

Sam had a little outing this morning back to hospital for his first checkup. It was a great success - he weighed in at 2720grams (up 240grams on a week ago). Paul and the nurses were very happy with his progress. It's hugely encouraging for us that all these long hours of feeding are paying off in the form of good weight gain and staving off infections.

So far we've been almost 100% successful in maintaining the quarantine of our house and our hands are beginning to feel like crusty old leather from all the handwashing going on. Thankfully we have all been fully healed of our colds.

We're dealing with what seems like a milk catastrophe in that every bottle we are defrosting is tasting a bit off. So we've probably thrown away 20 bottles before I stopped to consult the Internet on this and lo and behold the first Google hit for "frozen breastmilk tastes sour" was a gem - see http://parents.berkeley.edu/advice/nursing/grosstasting.html As you will see a number of pumping moms from the Berkeley (California) Parents Network have been engaging with this problem and conducting all sorts of experiments with their milk. Some of it's very amusing if you have ever experienced the joys of long term breastpumping. Given that we're sitting on around 30 litres of frozen milk we are VERY interested to know how to play this one and the hospital staff don't know of the problem. If anyone has any other ideas out there please post a comment.

Here's a shot of the Berry Boyz the morning after their first night at home together.

Three glorious days at home

<-- Matt, Mich, Sister Alison and Sammy crossing the threshold Matt's first comment when faced with the sight of his baby brother on the car seat on the return trip from hospital: "Who's this??" Followed shortly thereafter by: "This car is very full of people!" ;) It feels like our house is as well with two little men ruling the roost most of the time.

We're just loving having Sammy at home with us. He's been coping quite well with the semi-sterile, non-airconditioned, quiet and dark-at-night environment. Matt thinks it's Christmas having his brother and both parents at home together.

Suck or Starve worked! The bottle feeding is going well and the only breathing worries have been during feeds when he has twice choked and a bit of revival was required, but nothing near warranting our newly honed CPR skills. Mich and I are truly enjoying the relative normality of sleep deprivation, the hours of rocking, sitting trying to burp a little lump at 4am, typing with one hand, lying wide-eyed at night listening for the breathing and other typical wonders of the early days of a baby at home. The seven different medicines during the day, visitor quarantine (limited to his grandparents, our sisters and the medical staff) and continued breastpumping tend to bring us back to the reality of the miracle that this little boy is!

We will continue to honour our God who creates all things and the amazing NICU team at Vincent Pallotti for saving and sustaining Sammy all these months. Though we're not missing the living in two places we are sorely missing the NICU team who loved and cared for Sam, Mich, Matt and me through this trying time.

Day 83 - Homecoming on Wednesday

Sammy B seems to have taken his doc’s Suck or Starve (see previous post) threat seriously. It in fact commenced yesterday and the boy is managing to survive without the nasogastric tube – he even gained 10grams yesterday (to 2490grams). So we were told today to get ready to bring him home on Wednesday morning!!! Mich is rooming over at the hospital tomorrow night with Sammy in her bed and then he’ll cross the hospital threshold early on Wednesday morning. Hallelujah!

I’ve attached an at- birth and a today shot just to remind you of the absolute miracle of this little chap’s life and healing. We’re so thankful to Our Creator for him.

Our house has gone into full battle mode with the final preparations for his return and making sure that we thank all of the incredible staff at the hospital properly. Just to make life interesting all three of us at home have a cold. Please prayer for our healing before Sam gets back and that he will continue to suck his bottle and boob and not sleep on the job as he prone to doing.

Limited brain capacity for much more. Thank you for helping us along this road we’ve walked sometimes but been carried mostly.

With love and immense gratitude
Terence

Day 79 - SOS from Monday

Hospital fatigue is finally hitting us and we are desperate to get our boy home! Suck or Starve is what the good doctor calls the next tactic. It's all about getting little boys with double chins to drink on their own without a tube down their noses. We've pretty much jumped the weight and breathing hurdles - feeding remains the issue. With the tube in he continues to grow nicely - around 2.4kgs currently - which is excellent news on the infection protection front. He's getting the hang of feeding, but it's slow going. So on Monday the tube comes out for 48 hours to help kickstart him into feeding without it.

I often look back over these posts and past months and reflect on how many prayers have been answered. OK so we're still in NICU but we have a little boy who is alive and made in the image of his Creator. We're so grateful to God for Sam and for you, the spiritual, physical and emotional rocks upon which we stand. Please pray that our boy learns how to suck the bottle. or better still the boob!