Excerpts from a NICU diary

Today I thought I'd share some excerpts from a keepsake diary we wrote in while Popette was in the NICU to give you an idea of what the days are like for a NICU parent. While most days were repetitive, such as dropping feeds off, watching monitors, and talking to Popette. It was the days when we got to have a cuddle for the first time or when I gave Popette her first sponge bath that made the visits to the NICU even more special. 

The pages in the diary are addressed to Popette.


Day 1: The day after Popette's birth

Today Nan, Pop and Daddy visited Mummy in the Acute Care ward. Nan and Pop gave Mummy a small pink bear, and a card with a 'baby girl' balloon for you.

Later that day Mummy was moved to the Maternity Ward and taken down to the NICU to visit you for the first time, where Mummy & Daddy named you.

Day 2:

During the day you were visited by Mummy & Daddy, Nan & Pop, Uncle N, Aunty K and cousins.

Mummy received some beautiful flowers from Daddy, and your Aunties & Uncles.

Mummy started expressing milk for your feeds.

Day 3:

Daddy came to the hospital early to spend all day with Mummy and you. Some more relatives and friends visited us, and you received some lovely presents.

Mummy and Daddy felt sad that you were born premature, but are happy that your progressing well.

Mummy visited you at 3am as she felt upset and couldn't sleep. Mummy felt so much better after seeing you!

Day 4:

The nurse took Daddy's wedding ring and placed it on your wrist! It looked like a bangle!

Mummy & Daddy love you very much and can't wait for you to get big and strong so they can take you home.

Day 5:

Daddy came in again for the day. We visited you a couple of times, each time bringing down lots of milk for you to have at your feed times.

Mummy & Daddy learnt cares from the nurse looking after you. Mummy helped clean your face and bottom, take your temperature and change your nappy.

Day 7: 

Mummy gave you your first sponge bath where she got to wash your hair. Daddy then helped Mummy change your nappy. It was Mummy's last day at the hospital so she was really upset to be leaving you, but happy she was going home with Daddy.

Day 8:

Today Mummy & Daddy had their first cuddle with you! One of the nurses took you out of your crib and placed you on Mummy's chest, then Daddy's chest where we had skin-to-skin contact.

Today you were off CPAP# for 3 hours and given 4 mils of Mummy's breastmilk at feedtime*.

Day 12: 

Mummy & Daddy had a cuddle with you, then Daddy read you the 'Winnie the Pooh and the Honey Tree' little golden book.

Mummy & Daddy were happy to hear that you had put on weight (1144gms) As of 2pm you were off CPAP for 40 hours.

Day 13:

Yay off CPAP for good!! You passed the test and have been taken off it for good. Mummy had 'Kangaroo cares' a skin-to-skin cuddle with you, which she enjoyed very much! You're now on 8ml feeds every 2 hours.

Day 17: 

Last night the central line was removed from your foot as you no longer required the supplements in the black bag, and you were taken off the caffeine for increasing heart rate and blood flow to stop sleep apnoea from occurring.

Day 18: 

Mummy & Daddy dropped off some milk, and spoke to the dispatch nurse about transferring you to the hospital near us so we would be closer to you, and we wouldn't have to drive so far to see you (40 minutes each way).

Mummy & Daddy were surprised to hear that the hospital had a bed available, and that you could be moved there today! While waiting for the ambulance to arrive, Mummy & Daddy did your cares and read you a story. Mummy then went with you in the ambulance (your first car trip!) to the hospital with Daddy following behind in the car.

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Popette was in hospital for a total of 50 days, once she was moved to our local hospital (less than a 15 minute drive from our home) I didn't keep up with the journal as I found myself spending more time at the hospital.

#CPAP - continuous positive airway pressure
^*feedtime and cares - is performed every 3 hours and was the only time we are able to change Popette's nappy, give her a bath as well as have her removed from her crib to have a cuddle.

Feedtime consisted of a tube inserted into Popette's stomach through the nose, and was mostly a mixture of breastmilk and formula, as I wasn't always able to produce enough breastmilk. 

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6 tips for dealing with parents of a premature baby

I remember different people's reactions when Popette arrived early. People often say things that can be quite hurtful and upsetting without even realising it. I had one relative ask me if Popette was going to make it. Of course it was on our minds, but we didn't want to discuss the possibility of her not making it. We wanted to show off our beautiful baby girl!

As new parents all we wanted was our baby to be healthy and well enough to take home.

Those first few months were an emotional roller-coaster ride for my husband and I. We didn't know anyone who had had a premature baby, so couldn't ask them for their advice or help. All we knew is what the doctors and nurses told us, or what we read from books or researched on the Internet.

Its a time when you really need the love, support and understanding of your family and friends.

Here are my 6 tips for dealing with parents of a premature baby.

1. What not to say 

Lets say your closest friend has had a premature baby. Please don't respond with "Oh bugger, how awful" or "Is she going to make it ?" I heard both these remarks!

Remember your friends are scared and extremely worried about their baby. They don't need to hear insensitive remarks or to be asked questions about mortality rates or long-term health effects.

Don't say "Oh look how tiny she is" or "How's little Johnny doing?". Your friends are aware of how tiny their baby is, you don't need to constantly remind them.

At this time, what your friend needs to hear is your concern and interest in their baby. Focus on how the baby is growing and developing.

2. Be a shoulder...

For a while your friends lives will revolve around visits to the NICU. They may not be interested in anything else until they know their child is thriving and can come home soon.

This is an important time for you to be there as a friend. Your friends need you now more than ever. Don't turn your back on them because they haven't called or text to see how you're doing or check how your overseas holiday was!

Remember they are going through a traumatic time and need the love and support of their families and friends. You don't need to say something to make them happy whenever you see or speak to them. You just being there and listening will be enough.

3. Help out if you can

I know everyone's lives are busy with careers, families and social lives. But what means a lot to parents with babies in the NICU are the little things. For example, when your friends get home after spending 4-5 hours at the hospital each day, the last thing they will feel like doing is cooking. They are probably sick of buying take-out, and would be grateful for a home cooked meal that they don't have to cook themselves.

Other ways you could help;

* If your friends have older kids offer to babysit so they can have a moment to themselves.

* Offer to pickup some groceries for them when you do your grocery shopping, even if its just bread and milk.

* Offer to do some of their clothes washing for them.

If your friend's baby has come a few months early, they may have not finalised the baby's room or bought things they need for the baby. Maybe ask them if they would like any help.

4. Remember they are still new parents

Just because your friends have had a premature baby doesn't mean they don't want to show off their precious newborn. Yes you can see photos they've loaded on Facebook, but if you can, go and visit them in hospital. Some NICU's allow 1 visitor (not just family) to escort 1 parent into the NICU. If your friend ask you if you would like to see their baby, don't be afraid or put off by the NICU. Say yes and be happy to see your friends sweet little baby.

5. This should be an exciting time for them but its not

If your friends are new, first-time parents, they are probably disappointed not to experience the joys of having a newborn and showing their beautiful newborn off to family and friends. It is hard hearing other people's friends being congratulated on their newborn, and to see deliveries of balloons, teddies and flowers arrive for new Mumma's when you have a newborn in the NICU. Try and make your visit special for your friends too!
                                     
6. Don't compare your full-term baby to your friends premmie

Popette who was a relatively healthy premature baby took approximately 2 years to catch up to her milestones. While she had delays with crawling, sitting and walking, she was doing all the things other full-term babies were doing by the time she reached 2.

Unfortunately some premature babies  may be born with development issues and other long-term health problems and take a lot longer.

Depending on how early they were born, lets say your friend's baby was born at 29 weeks gestation, that makes her baby 11 weeks early (approx. 3 months).

While its ok to be happy about your own child's milestones, try not to compare your little one who may have started walking early with your friend's premature baby, especially if they were supposed to be born the same month. This doesn't help your friend whose baby might be only rolling at the same time.


I can't stress how important your love and support will be to your friends through this tough time. I was lucky and had the love and support of my family and close friends, but unfortunately there were some people who didn't realise how stressful a time it was for us and didn't know how to support us.

Don't expect your friends to get over their child's birth (especially it if was a traumatic time for both mother and baby) or time spent in the NICU quickly. It took my husband and I a long time to be able to talk about Popette's birth without us both getting emotional and teary. Its a thing you never forget.

I hope by sharing my experience and stories, anyone who has friends or relatives going through a similar situation will find these posts useful. Read other posts from this series:

* An introduction to my series: Having a Premmie
* The arrival of Popette: my experience with pre-eclampsia & HELLP syndrome
* Letter to the new NICU Mumma

Letter to the new NICU Mumma

Hello Mumma,

I know it sounds strange to be called Mumma when your baby should still be in your tummy.

I know you are scared, terrified, anxious, worried about what you did that could have caused your baby to be born early. 

Nothing you did made your baby come early.

Be kind to yourself Mumma. I know its hard. 

Please don't feel like a failure because you couldn't bring your baby to full term. Its not your fault. 

If you had a choice your baby would still be all snug in your tummy, growing and getting all the nutrients it needs. 

You gave your baby as much as you possibly could. Please don't beat yourself up.

I know it hurts not to have your baby in the room with you, or to be able to hold her, nurse her, or when you hear the joy of other new Mumma's with their newborns in the room. 

Its okay to be angry, to cry, to be disappointed. 

But also remember the joy when you first saw your sweet baby's face. The moment you got to hold her tiny little finger and hear her cry.

Spend time talking to her, let her hear your voice, tell her your dreams, read her stories. 

Touch her through the portholes of the humidicrib so she knows you are there and she's not all alone.

Help the nurses with changing her nappy when you are able to.

Believe that her doctor and nurses are doing their very best to look after your little one. You may not believe it when they say she can come off the oxygen machine and can breathe on her own. Rest assured they know what they are doing.

It will be worth it once you get to hold that sweet baby in your arms and eventually take her home.

You may question the doctors time and time again, and worry about all the different alarms and monitors going off. Remember everything they are doing is for a good reason, and is so your little one can soon come home.

Mumma, make sure you sleep when you can, eat healthy, drink water and try to think positively about your sweet baby. You need to look after yourself.

I know you are finding it difficult, but you need to rest and make sure you have plenty of strength to get you through this difficult time. 

Be there for your partner, cry, talk, hug, share your thoughts and worries.

I know this isn't the start into parenthood you wanted, but its here now so make sure you treasure every moment with your little one.

Lots of love, Julie
ex-NICU Mummy of Popette (6 1/2 years)

I am linking up with Essentially Jess for IBOT

The arrival of Popette: my experience with pre-eclampsia and HELLP syndrome

Welcome to my new blog series “Having a Premmie". Throughout this series I will be sharing my experience and knowledge on what it is like to have a premature baby in the NICU. 

By sharing my experience and stories here, I hope anyone who has friends or relatives going through a similar situation will find these posts useful.

My Husband and I left it late in having children. We had been married for 13 wonderful years, was paying off a mortgage, had travelled overseas numerous times, enjoyed going out with friends and taking long-weekends away. We both had fairly good careers and were really happy. It took us some time to realise, that what we both wanted was a family of our own.

So in late 2007 we started trying for a baby. We had been trying to conceive for over 12 months, so it wasn't until I was 35 before I finally fell pregnant. 

We were both thrilled, and couldn't wait to see our little tiny baby on the ultrasound. Unfortunately it wasn't meant to be, and at 5 weeks gestation I miscarried. As you could imagine we were devastated. 

Due to my age and history of Polycystic Ovarian Syndrome (PCOS), I was considered a high risk pregnancy, so after talking with our GP he put us onto a wonderful obstetrician. The obstetrician placed me on Metformin (to help with insulin levels) and monitored me closely over the next couple months. Thankfully within two months I was pregnant again!

I was pretty fortunate not to have morning sickness throughout my pregnancy. I was eating healthy, doing light exercises, generally I felt great. I loved seeing my little bump getting bigger and bigger. I loved the feeling of Popette (the nickname we gave our bub early on) kicking me. It always gave my Hubby and I the biggest thrill when we felt her kick.

At around 18 weeks gestation, I started to develop Pregnancy Induced Hypertension (PIH) that caused my blood pressure to get extremely high during my pregnancy. Before I was pregnant, I never had issues with my blood pressure.

During my 2nd trimester I was a frequent visitor at the Fetal and Maternal Assessment Unit (FMAU) located at our local hospital where nurses took my blood, checked my blood pressure and tested my urine over a 4-hour period for possible signs of pre-eclampsia.

On my last FMAU visit, a week before Popette was born, the Head Nurse told me to get some clothes together as I was being admitted into hospital for a few days evaluation. At the time I was experiencing terrible migraines, oedema (swollen ankles), high blood pressure, and protein in the urine. Just some symptoms of pre-eclampsia. I was 28 weeks gestation + 2 days.

It was 3 days after Christmas, and my husband and I were making plans with our friends to see the fireworks in the City as well as celebrate my birthday, which also happens to be on New Year’s Eve. However my blood pressure had a mind of its own and didn't show any signs of lowering, so I was forced to stay in hospital missing New Year's Eve (my birthday), and New Year’s Day (my husband's birthday).

At 29 weeks gestation + 2 days, a week after I was admitted, the doctor's noticed that my platelet levels were dropping. The first reading at 14,000 then to 11,000 million per millimetre (ml) of blood, the next reading was as low as 7,000 ml. A normal number for platelets during pregnancy is around 150 and 400 million per millimetre (ml). 

I was told by my renal physician that I was developing severe pre-eclampsia and that the baby may need to be delivered soon. 

My husband and I were then given a bunch of fliers on what to expect if our baby was born early. There was details on what it was like having a baby inside a NICU, a list of long-term problems associated with premature birth (i.e. blindness, cerebral palsy etc) and a graph showing the mortality rates for premature babies born at different gestation periods. Reading through the information terrified us both. We didn't want to have our baby now we wanted her in 3 months time when she was due.

The night before Popette was born, I remember having terrible back pain and experiencing reflux. I hadn't been pregnant before so thought it was a normal sign of pregnancy, what I didn't realise was that my body was going into HELLP syndrome. By the morning, the doctors could feel my liver protruding through to my stomach. I was experiencing a lot of pain. My face became swollen and jaundice due to my kidneys failing.

Me the morning of Popette's birth

My doctor's told me that the placenta was rejecting my liver, causing my liver and kidneys to shut down and that it was critical for the baby to be delivered. Due to a lack of beds in the hospital's NICU, I was transferred to another hospital.

I burst into tears as I rang my Hubby who was getting ready to leave for work, and told him the news.

"Popette" was born at 29 weeks + 3 days (11 weeks premature) via an emergency cesarean. 

Although she was tiny, weighing 1.148kg, she was remarkably healthy for a premmie. After the delivery, I was moved to acute care for 27 hours. I had not seen my husband since the operation, or knew if the baby was a boy or a girl as they whisked her away after the cesarean.

The Polaroid photo of Popette

During the course of the evening, I was monitored around the clock by nurses, who had me hooked up to an automated blood pressure machine that took my blood pressure every half an hour, a drip containing magnesium sulfate to reduce the risk of me going into seizures or full-blown eclampsia, a catheter, and epidural.

Before my husband left me for the evening, he gave me a photo of Popette that the nurses had taken when she was first born. This was my introduction to my sweet baby girl.

We sticky-taped the photo to the side of my bed, which I looked at throughout the night wishing I could go see my little girl.

Finally meeting my gorgeous girl 27 hours after she was born

Popette spent a total of 50 days in the NICU. We are so grateful that we had such good doctors and nurses looking after my daughter and myself.

Its hard to believe that was 6 1/2 years ago. 

Popette is now in Year 1 at school and is a healthy, happy little girl. Thankfully she has no long-standing health problems from being born early.

You can find further information on Pre-eclampsia and HELLP syndrome via the links below:

PEARLS
http://www.preeclampsia.org.au/faq.php

Australian Action on Pre-Eclampsia
http://www.aapec.org.au/index.php

Questions about Pre-Eclampsia
http://www.aapec.org.au/Pre-Eclampsia/index.php

Austprem
http://www.austprem.org.au/austprem_2.shtml

Austprem - HELLP general information
http://www.austprem.org.au/journey/pregnancy/hellp.shtml

Austprem - Pre-eclampsia general information
http://www.austprem.org.au/journey/pregnancy/pree.shtml

Please note, I am not a medical professional. This post is a description of what I have experienced, and intended for your information only. Please check with your healthcare professional for further or more specific information on how this condition might affect you throughout your pregnancy.

I am linking up with Essentially Jess for IBOT