Sarah-Hope's first week at home

Sarah-Hope's first week at home   has been absolutely hilarious... she is just surviving being parented by   us.

First night…Rich on duty for the   midnight feed which usually gets started at around 11.30pm... Comes to bed at   2am!

Leigh: "Rich, what have you been   doing?!"

Rich: "Changing her nappy….I   haven't got this parenting thing down yet…it actually took 1.5 hours, 3   nappies and about a kilogram of cotton wool!"

We've had a couple of trips to   NICU at night for help with the feeding tube, making sure it stays in its   place as we wouldn't want to be throwing milk down into her lung!   This can be a bit of a nuisance... but, on the other hand, we   are VERY grateful for it as it gives us the advantage of getting food   into her even when she's sleeping / exhausted from drinking from the bottle   for few minutes. Also, we don't have to fight to get her medication into   her... we can just 'drop it down the tube'. Of course, this should be done in   accordance with the medicine schedule that we were given when we were   discharged from the hospital.

Rich: "Hi, this is Richard,   Sarah-Hope's dad... yes; it’s going very well at home... oh the only thing is   that we didn't give Sarah-Hope her medication at 3pm... or at 6pm. Can we just   add them to her 9pm meds and put it all down her tube now?" When we left NICU,   we recorded the staff on video saying "call us any time of the day if you need   anything, have any questions...” I don't think they expected to hear from us   as much as they have! But great to have nurses we can call 24 hours a   day.

We've been quite busy organising   our space for the new addition to our lives. You know a father's love for   his daughter when, in an instant, he's prepared to give up   his "man-cave" for her. And it doesn't stop there. One of the things we   learnt from the nurses at NICU was creating a nest for your baby, which they   do with rolled up towels covered with receiving blankets. Rich has taken this   on... building nests for Sarah-Hope in the moses basket, the papoose, the car   seat etc to ensure her ultimate comfort and support. I had to really put my   foot down when I saw Rich putting our best bath towels into Sarah-Hope's   nests! The next day, I couldn't figure out why I only had about 2 towelling   nappies (when I thought we had about 15?). You guessed it - all her nappies   were being used as nesting material. So towelling nappy donations are very   welcome, we still need plenty!

Thanks for my very first nest at home, Dad

Sarah-Hope’s first Christmas stocking thanks to Granny Christmas

Cuddle time

Caught napping

Bonding with mom

Update letter - Sarah-Hope is home for Christmas!

Dear friends and family

We trust this email finds you well?

We never imagined that we'd be celebrating Christmas this year at home with our daughter but we had the absolute joy of bringing her home yesterday!

We had an amazing hospital experience and received such compassionate care. Since we didn't prepare to bring a baby home, it's been quite helpful having a couple of weeks to learn about changing nappies and bathing babies with 24 hour nursing support right there... and get our heads around the fact that OH MY, WE ARE ACTUALLY PARENTS!

Up until now, Sarah-Hope was in the neonatal intensive care unit where she was monitored and assessed in order to get a better overall picture of her health. The most significant features at this stage are:

1. The small size of her lungs, which manage to maintain oxygen saturation beautifully but have to work about 2.5 times as hard as a typical newborn. This diminishes the energy she has left for other activities such as feeding (she has a feeding tube as a result). Also, a chest infection at this stage is a serious risk for her.

2. A very low blood platelet count which means she bruises easily and could be at risk of spontaneous bleeding or at worst haemorrhaging.

The good news is that her lungs will grow as she does and her platelets can stabilise in later years. In the meantime, since she is still vulnerable, we'll be taking precautions such as limiting her exposure to sick people, avoiding crowded situations, asking visitors to wash/sanitise their hands, and 'handling her with care'. We're really going to have to restrain ourselves as we're so looking forward to introducing our darling Sarah-Hope to you all (she's so sweet! See picture attached!) but will have to take it slow.

We want to thank you so much all for your love and support and for celebrating Sarah-Hope's life with us. By the way, you may have noticed it was first name 'Sarah' and second name 'Hope' before she was born... her father didn't want people to 'lose the Hope' so officially registered her as 'Sarah-Hope' so that HOPE remains! Our prayer for you this Christmas is the same as for our daughter: "We pray also that the eyes of your heart would be enlightened in order that you know the HOPE to which he has called you" (Ephesians 1:18a).

In His arms,

Richard, Leigh and Sarah-Hope

P.S. Once again, apologies for not being able to respond to your messages (which we love!)... If you'd like to receive updates, please contact Carol, who can send you little bits of news every few days - Carol is still our main point of contact for now. Darlene can be contacted with regard to providing help / meeting needs.

On our way home for Christmas

Thanks for setting up my nursery Aunty Carol and granny

Reflecting on the birth experience

Reflecting on the birth experience is humbling – what a God ordained day! The lead up to the birth, complete unity in our marriage regarding the decisions about the birth and care plan, the team of doctors which came together around us, the timing of the birth and God helping us with our work and leave in such a way that we could fully give ourselves to the moment and have space to see where things would go, the compassionate response and staff at the hospital, and then the unexpected outcome!

Serene would be a good way to describe how I was that day. I was at peace and interested to see what God would ordain for Sarah-Hope’s life (and ours!). Rich was buoyant and excited to meet his daughter. We could still feel her kicking away so we were pretty sure we would get a chance to meet her alive which is what we had hoped for.  

How did we feel that she was here to stay? At the actual birth, Rich got the first opportunity to hold her after she had been checked out (I was still being stitched up). He describes that moment as one where a heavenly love for Sarah-Hope literally invaded his heart. He was totally captivated. Receiving God’s love for Sarah-Hope was a tangible experience of how perfect love drives out fear – all the worries we had about what we would do if we she survived seemed to disappear. Love was stronger.

There were still ups and downs. A few days later when her platelet count was found to be very low (an infection was suspected – and many babies born with hydrops die from infection), we weren’t sure what to think and remained guarded as her medical condition was being monitored. But we felt full of purpose – we had started our family and it was the most fulfilling experience of our lives. No one expected Sarah-Hope to come out “ready to go” – and while this amazed doctors (especially those who had tracked her condition throughout the pregnancy), for us there was such a sense of God in our midst. He released us from the burdensome decisions about life support – He had given her life. The presence, peace and grace of God that we knew at that time was enthralling. Yes, there was pain and we still had a long road ahead, but God was with us and we felt thrilled to be on this adventure with Him. We had fallen into the hands of God!

Update - 11 days old

Sarah-Hope is a delight... The only tube left is her feeding tube, which is going to be with us for quite a while as her oral feeding ability is constrained by her respiratory function (but lungs do grow!). BUT exciting news is that her doctor says he'd like her to be home by Christmas! Hoping Santa visits Sarah-Hope in a big way cos we didn't plan for this:)  

Update - 7 days old

The nurse on duty yesterday insisted on trying the first half of one of her feeds with a bottle so we got the opportunity to see Sarah-Hope suck and swallow which is crucial to her feeding in the future. The nurses have noted her strength and attitude in her medical file... So we clearly have quite a character on our hands! Leigh is pretty busy 'putting food on the table' (expressing) for Sarah-Hope, Richard is hogging all the cuddle time!

Whatcha looking at?

Still getting used to bath time…

Born with a few extra chins

All this attention is exhausting!

Update - 6 days old

Today Sarah-Hope moved out of her incubator (the disco-box as Richard named it after she got some light therapy for jaundice a few days ago and spent some time under those funky lights with a pair of ultra cool shades) and into a little cot in the neonatal ICU... AND she came off her oxygen (which hasn't been enriched but just giving her lungs some support ito flow). We also dressed her for the first time (yes a sleeveless babygrow, bless her) as she's been in a nappy only for the last 6 days baking away in the disco box AND we learnt how to swaddle her. Its so nice getting rid of tubes one by one.. Means she's able to get even closer to us. We so appreciate all the love and messages we're getting... Grace to you all, from the adoring parents of Sarah-Hope.

From my disco box…

Into my very own cot!

Update - 3 days old

Sarah-Hope's still breathing and feeding fine, her platelet count is low so she had a platelet transfusion and is on antibiotics. Ultrasound showed that spleen, liver and kidneys all look structurally sound, and x-ray showed that pelvis and leg bones all looking good. Leigh has begun expressing breastmilk for feeding the precious bundle, is up and about and recovering well from the op. We’ve really enjoyed feeding, changing nappies, and skin-on-skin cuddle time. Rich is an extraordinary dad. He has the NICU staff all a flutter every time he takes his shirt off to have skin-on-skin time with his daughter.

Skin-on-skin with dad

Letter introducing Sarah-Hope Berg

Dear family and friends

We'd like to introduce you to our precious Sarah-Hope, who was born on Friday afternoon by c-section weighing 2.65kg. The birth was an amazing experience and we're all being really well looked after. She's in a stable condition, especially when she's on mom's chest.

She came out 'pink and feisty', and demonstrating a serious will to live! She has blown everyone away with the hurdles she's overcome, notably:

- her lungs, though while on the small side, are working hard but fine which is remarkable given that they were severely underdeveloped half way through the pregnancy

- her heart is beating away happily

- almost all the hydrops/swelling has been absorbed (she has gorgeous extra skin rolls to show for that around her tummy and neck)

- she already has more hair than her dad, and deep blue eyes.

She does still have some significant physical challenges as her limbs are severely handicapped. Notably, she has no arms although she has sweet little hands. It’s difficult to say at this point what her limb functionality will be, but given Sarah-Hope's determination we're sure she'll overcome this.

The journey from here has many unknowns, so we're just taking things one day at a time while getting to know our special child.

Thanks again for your love and support. Although we may not be able to respond individually, we do so appreciate all your messages. Leigh's sister, Carol Whyte or Darlene Cons can be contacted for updates.

Richard and Leigh

The birth of Sarah-Hope

Waiting for Sarah-Hope

First precious moments as a family

Paediatrician describes her as “pink and feisty” and she scores 8 and 9 for her Apgar tests!

ICU in my very own room for the first few hours after birth