Yesterday mum and dad ventured back into the NICU Westmead for Zoe's eye check and weight assessment.  This time we knew we were only to be there a short time (which went quickly with the staff coming to see how Zoe was doing now at home). Her eye check results were good with the ROP still resolving.  The specialist is pleased with her progress and so Zoe will now go to fortnightly assessments.

Zoe Hope has gained weight since being at home and is now 2415grams. We are so happy to see that the comforts of home are helping.

Life at home with Zoe Hope was a little daunting for the first few days adjusting to the oxygen as well as making sure she was still breathing etc. Not too much different from bringing home a newborn.

Zoe Hope was due to be born on the 24th April so her corrected age is 5 days old. Seems unreal to think of it that way but that will be the age that will be used for her milestones in the many months to come.

We are thrilled to have her home. Tyler and Henry adore their sister. As for Zoe Hope she is settled, sleeps really well during the DAY and at night like to snuggle with mum. She is adjusting to the environment at home however doesn't like to sleep in the dark so we have a light on for her every night. She loves to be in the family room with all the noise of the day too.  We are just so blessed to be enjoying her and getting to know everything about her.

We sincerely thank all of you for your messages and thoughts and prayers.

Week 1 at home

A little bit of tummy time in the morning for Zoe.

Day 109

Today was a great day for the Dippies. Zoe Hope was finally discharged into mum and dad's hands 24/7. Her eye check went well with a followup to be done again Wednesday next week. Zoe Hope had a few laps around the NICU this morning so that she could say farewell to the wonderful team of Doctors and Nurses. Due to shift work not all staff were on however we did see a few of the nurses that spent a lot of time with Zoe when she was so sick in NICU.

Where one journey ends another begins and so it is that we are now home and getting to know our daughter more and more. She has lots of medicines and feeding routine that takes quite some time not to mention getting a routine with the moving around using oxygen etc. Henry is quite glad to have his little sissy home and Tyler is excited and can't wait to see her when he returns from his dad's on Thursday.

We would really like to again thank all the Doctors, Nurses, Office staff and cleaners for making us feel like one of the team. We spent many days and nights walking the halls, sitting at Zoe's bedside and chatting, crying and even laughing with both staff and other parents. Wow what a journey and one that we will never forget. Thank you for being so professional and "Fair Dinkum". We appreciated your honesty, support, inclusion in Zoe's daily medical routines / progress and your kind friendship.

Thank you also to our many many followers for believing in Zoe Hope and sharing our journey thus far. We will continue to update the blog each week with new milestones and photos. We hope you will join us on the new journey away from NICU as Zoe Hope grows.

God Bless each and everyone of you.
Love the Dippies
xxxxx

Day 108

Zoe is still on track to be discharged tomorrow after her eye test. It has been a very long journey for Zoe in nicu but she has done extremely well under the circumstances. A big credit to mom, the nurses and doctors and everyone out there near and far.

Day 107

Zoe must have had a great day yesterday as she got to spend most of it with mom. As of 5pm last night mom has 'taken over' from the nurses and spent the night at hospital with Zoe. Only one more sleep before Zoe comes home, we are all very exited and looking forward to bring our daughter home so we can all be together.

Day 106

Zoe had a good day and she is looking forward to mom spending time with her as of tomorrow morning, untill she is due home on Tuesday after her eye test.

Day 105

Zoe had a good day and should enjoy her sleep for the first time without a feeding tube. Not long now.

Day 104

Zoe Hope has had another good day. She had x-rays of her lungs and a few other routine tests today for her respiratory physician. She is going well on the new level of oxygen so will probably go home on it.

She already has a team of physician who will be seeing her over the next few years so appointments are being organised and set up for all the follow up care once we are home sometime next week.

Please continue to pray for Zoe Hope as the road ahead is not necessarily an easy one. We will have to focus on keeping her healthy and free from illness.

Day 103

Zoe Hope has had another good day. (It may sound repetitive however good days are fabulous compared to where we have come from). She has had her oxygen level lowered to test if she can come home on that level. This will be reviewed over the next few days prior to Zoe Hope seeing a respiratory specialist. Zoe Hope will need to have oxygen 24/7 until her lungs grow and develop more lung tissue. There is no time set as it all depends on her keeping healthy. As winter is upon us Zoe Hope will be confined to a germ free environment at home as the usual colds we can all deal with are very serious for her because of the Chronic Lung Disease. She was again reviewed by the Occupational Therapist who looked at her gross motor. Zoe Hope will continue to have these checks every 4 months for some time. The Therapist was very happy with her progress thus far. Zoe Hope now has two sucks to a tube. She is coping with this very well. Overall she is doing remarkably well. Thank you to you all for your constant support, love and encouragement. Your prayers are also very special to us. Remember to thank God for all that you have each day.

Day 102

Zoe Hope has had a great day. She had a lovely bath today and was weighed. her new weight is 2265grams. What a fabulous weight gain! She has had some of her medicines ceased and has had the breathing and heart rate monitor turned off. Zoe Hope has had another eye test which continues to show improvement. She will be re assessed for her eyes again next Tuesday. Her hearing was tested today and all results showed Zoe Hope to have passed the test. This will be re assessed again when she is 11 months old. Today the doctors discussed a discharge plan with us. Now Zoe Hope will continue to work on her feeds and hopefully if all goes well will be home sometime next week.

Day 101

Zoe Hope has had another good day in Special Care. She is doing well with her feeds, oxygen and sleep. She has her eyes checked tomorrow and we hope they continue to show improvement.

100 Days Old Today

Zoe Hope has had a lovely day celebrating her 100th day with Dad, Mum, Tyler, Henry, Oupa, Ouma, Grandad and Nana. She was moved into SPECIAL CARE over night and is doing really well with her feeds. She now has one suck feed to a tube feed. Ouma and Nan baked cakes for the Doctors and Nurses to help them celebrate with us.

Keep up the fantastic work ZOE HOPE.

Day 100

Happy 100 Days today "Fairy Princess"

You have given so many people Hope.

Your strength and will to live is amazing for one so so small.

May you continue to grow and enrich ours and the lives of others.

We all LOVE you.

You are another example of God's many miracles.

Day 99

Zoe Hope had a great day Saturday with a bath and lots of sleep. She now weighs 2110grams. She is coming along leaps and bounds.

- Your Cross-

The young man was at the end of his rope. Seeing no way out, he dropped to his knees in prayer. "Lord, I can't go on," he said. "I have too heavy a cross to bare." The Lord replied, "My son, if you can't bare it's weight, just place your cross inside this room. Then open that other door and pick out any cross you wish." The man was filled with relief. "Thank you, Lord," he sighed, and he did as he was told. Upon entering the other door, he saw many crosses, some so large the tops were not visible. Then, he spotted a tiny cross leaning against a far wall. "I'd like that one, Lord," he whispered. The Lord replied, "My son, that is the cross you just brought in." When life's problems seem overwhelming, it helps to look around and see what other people are coping with. You may consider yourself far more blessed than you imagined. - Author Unknown-

Day 98

Zoe Hope continues to thrive on her breast milk. She will be weighed again tomorrow and we know has definitely reached 2+kg. She is enjoying the swing room and sleeping well. Her eyes are looking a real crystal blue at present and her hair is a little more strawberry. We are so lucky to have such wonderful care at Westmead and are very thankful to all the nursing staff and doctors. Not only do they take fantastic care of Zoe hope but they also support us on our journey as best they can. :-)

Day 97

Zoe Hope continues to blossom. She is coping on three hourly feeds. Her oxygen has been reduced slightly and she is really settled when not disturbed. Miracle babies were there again today for parent support group and it was again another worthwhile time spent talking with other parents of premature babies. Please continue to pray for all the sick children who are fighting illness and disease. Life is so precious and we should live everyday as a new day and continue to be thankful for what we have.

Day 96

Zoe Hope had yet again another great day. She is now on three hourly feeds and appears to be enjoying them. She had a bath today. Her baths are now every three days. She really relaxed and enjoyed it. Mum enjoyed it and also dressing up her bed with the many colourful covers and wraps to choose from that have been donated.

Day 95

Zoe has had another great day. Her eye test came back with further improvement of the ROP disease so we are all very happy. She will still be on the oxygen therapy and the specialist will see her again next week. She continues to feed well on three sucks every 24 hours. She is still on two hourly feeds to be reviewed tomorrow.

Day 94

Zoe Hope has had another great day today. She is now on 3 suck feeds a day. She had her first attempt at breastfeeding today followed by her push feeds. Doctors are awaiting the results of her eye test tomorrow. We pray that her eyes are still on the mend. Zoe Hope is coping with the lower oxygen on the slow flow. She still has a lot of times where she breathes up (breathing fast and shallow). This is due to her Chronic Lung Disease. Zoe Hope will need time to grow and develop her lungs and get them stronger. Doctors say that her lungs will continue to improve as she gets older and moving around. She is at a higher risk and more vulnerable to any lung infection that comes her way meaning colds, flu, coughs etc Thank you to all of you who are supporting us in prayer, love and friendship.

The first of many spa treatments!

Can I please sleep now?

                                                           

This water is so so relaxing.....

Day 93

Another good day was had by our Fairy Princess. Zoe Hope enjoyed her bottle feed of breast milk this morning and a bath in a big tub. She was also able to have Kangaroo Care and enjoyed having her nails cut "Thank you nurse Rosemary". Zoe Hope has had the caffeine stopped (it was to help her remember to breath as she grew but as she is now corrected 37 weeks today she no longer requires this reminder). She has put on a good amount of weight in the past week. She now weighs 1998grams. This is an amazing growth from her birth weight of 550grams. Well done Zoe Hope! We have seen a lot of changes all positive in the past 7 days. Now it is all up to Zoe Hope to continue to improve. Her oxygen has also been slightly reduced again today and doctors and nurses alike are calling her a "little champion". Now Zoe has to wait until her eyes are checked again on Tuesday PM. Her other focuses will continue to be her saturation, suck feeds and extending time between feeds. All this means that both doctors and nurses are preparing Zoe Hope for the road home. From the beginning of Zoe's care neither doctors, nurses or ourselves have discussed the time frame of Zoe going home due to how sick little Zoe Hope was when she was born so early. It has only been since her coming off CPAP and moving to a proper feeding schedule that both doctors and nurses have really begun to prepare us for the journey towards bringing our little girl home. Although this may still be a while off we know that the staff at the NICU only have Zoe's best interests at heart and will make sure she is ready when she is ready. We have been so lucky that this journey which we are still on has allowed us to form very strong relations with the staff at the NICU as it has also become our second home. We admire all the staff we have dealt with thus far. We also thank the wonderful ladies who are and have been knitting and sewing for the NICU. Your voluntary donations of time and much needed bedding and clothing have been greatly appreciated by the nursing staff at the NICU. Thank you also to you from us as we get to see all your donations everyday and Zoe Hope is able to make good use of these items whilst there. Please thank God for all the miracles that surround us all and also for continuing on this very special journey with Zoe Hope.

Day 92

Zoe had a good day in the swing room and she is doing well with her bottle feeds per day. She is getting 10 push feeds per day and two bottle feeds. Dad had a good 2 hours with Zoe tonight with his first bottle feed and also his first kangaroo care session with Zoe, most enjoyable and relaxing. Tomorrow is full on again, with cares and a bottle feed at 10am, bath at 12pm, Kangaroo care with mom at 4pm ( I think) and then bottle and cares at 8pm.

Day 91

13 Weeks old today! Zoe Hope is continuing to cope with her two hourly feeds. She will keep this feeding schedule over the next 24 hours and all being well will be adjusted to third hourly feeds early next week. Her oxygen has been turned down again and she is still maintaining good saturation for her eyes. The Speech Therapist came in to assess Zoe Hope today. Unfortunately she is unable to assess her speech however will focus on the breathe, suck and swallow skills needed in order to get her feeding orally. She will be able to have an attempt at a bottle over the weekend just to help start the idea and see how she goes. Zoe Hope has all the reflexes required so just needs to be given time to coordinate these life skills. (The things we take for granted once learnt!) We have met so many lovely families in the NICU all having different journeys with their child/children and pray that they continue to be strong and positive.

Sorry about the missing photos will try to fix asap. :-)