Getting Ready to Leave the NICU

When it was the end of our time in the NICU I know we felt a lot of different emotions. Joy that the 3 months of having every day in the NICU was coming to an end, and that our baby was well enough to go home. Stress and nerves that perhaps we weren't prepared.

In our NICU, the nurses did a lot of the work, especially initially. Our baby was very small, very delicate, and there were long periods of time we weren't allowed to do kangaroo care, so of course we weren't able to feed him (the nurses help the tube which went to his stomach), change him, give medicines etc. So a lot of it was what I call "parenting by proxy". We would watch the nurses change nappies, clean, sometimes sooth, and perform other normal parental functions. Its a strange feeling, often I felt like I wasn't really needed that much. I tried to channel my desire to actually do something into keeping up with the medical details of our sons care, doing kangaroo care, playing music for him, talking with him etc.

So when the time came that we were starting to think about discharge, suddenly we were mixing medicines, giving medicines, feeding, changing, bathing and pretty much all the things the nurses were doing previously. It took a bit of practice, and overcoming some nerves at first but I came to enjoy those moments.

Theres no way of avoiding it though, its a strange feeling one day to have your baby in a room with limited visitors, everyone washing hands 10 times a day, a very strictly controlled environment to them handing your baby over and saying "time to go home now". Theres also the rush to get everything. As we were in hospital much earlier than anticipated, we hadn't done any shopping. So we had to rush around (between feeding times) and get a stroller, cot, clothes, linen, and all the other things a baby needs at home.

In summary, getting to go home with your baby is a strange mix of excitement, joy, nerves, fear and stress. For us it was an amazing feeling having our little baby finally home with us and not feeling like the hospital was our second home.

If I had to get some tips they would be:

• Do as much as possible for your baby while still in the NICU (once you are allowed). With the nurses and doctors to guide and monitor we found it easier to build confidence, get advice etc.
• Try to take time to buy the things you need, we rushed around a lot and ended up missing some things, paying too much for others. Maybe they can give the baby tube feedings to give a few more hours for baby shopping.
• Ask questions. Lots of questions. I was always asking the nurses if the way I was givign the medicine was right, or if there was another way, or a better way, or tricks they had for swaddling etc.
• Get clear lists of requirements for your baby. For example, the medicines, the times they have to be given, udner what conditions (30 mins before a feeding etc).
• Get the checkups written out for you, so you have a clear list of dates to adhere to for followup with the pediatrician and any specialists.
• Expect a mixture of emotions and don't be too hard on yourselves.

Kangaroo Care

Kangaroo care is where the mother or father hold the baby in their bare chest, enabling skin to skin contact. The first time the doctor asked us to try it, even though I’d read briefly about it, it was hard to believe it was a good idea. He looked so secure in his incubator, so safe and isolated, how could he possibly survive outside it? He had so many cables and tubes attached to him, I wondered how they could safely move him! The doctor assured me, that it was very good for the baby. He said “you wait, see how his heart rate and breathing are a bit unstable? Within 10 seconds of going on to your wife's chest it will stabilise”. To my surprise he was 100% correct, the monitors showed that within a few seconds of going on my wife's chest his breathing slowed and deepened (good for expanding the lungs), his heart rate settled to a lower number and he rested. My wife also relaxed, up to that point she had had headaches and been quite tense. As soon as he was placed on her chest you could see her visibly relax.

The doctor explained some of the other benefits of kangaroo care. Studies have shown it improves the babies health and improves their overall health. They gain weight more quickly, are discharged earlier and suffer fewer complications. The mothers body will adjust automatically to what the baby needs. If the baby is cold, the mothers body will heat up. If the baby is too hot, it will cool down. It’s a truly amazing experience.

I too got to try the kangaroo care, and though I was a little nervous at first when he settled on my chest it was an amazing feeling as he settled in and fell immediately into a deep sleep, and seeing the monitors showing his heart rate and breathing settle was comforting.

A few times during our stay they stopped Kangaroo Care if he was unstable. Its quite surprising how much it affected us having to stop doing it, its really forges a special connection and its tough to stop for a period of time.

A tip for dads is to do as much Kangaroo care as they will let you, as if your baby is still in the NICU when the baby starts breastfeeding there won’t be much time for you to hold your baby.

NICU Reading Material

One thing I found invaluable during our stay in the NICU was the copy they had of Neonatal-Perinatal Medicine - Diseases of the Fetus and Infant by Avroy A. Fanaroff and Richard J. Martin.

This is a medical volume used by the Neonatologists as a reference guide. Surprisingly some sections are very easy to read, while others are laden with medical terminology and are quite hard for the layperson to follow. For example, the section on metabolic and endocrine disorders is extremely complex, whilst the section on transfusions is quite easy to read.

I liked it as it helped keep things in check, explaining conditions that our baby was facing, how they are diagnosed, how they can present, how they can be treated, risks for that treatment, alternatives etc. Sometimes the doctors wouldn't mention all the risks to us, or alternatives, so it was nice to be able to point to a section in the book and ask them to explain a bit more in depth.

Its an expensive book to buy, so I'm glad our NICU had a copy of it that they let us read.

Another book we had access to was Neonatology: Management, Procedures, On-Call Problems, Diseases, and Drugs. While nowhere near as comprehensive as the book above, its much more affordable, and I found it useful when I wasn't really interested in skimming over pages and pages of tables, statistics, or historical information and just wanted the nuts and bolts type of information. Again sometimes over my head as a layperson and not a medical professional but quite readable generally.

In the NICU: Asking Questions

As I mentioned in my first post you can ask the medical staff questions. So what kind of questions did we ask while we were there?

Many are specific to the conditions our son had, and the tests he had to undergo, and how they affected his care. But there are some routine questions we asked. We always asked the nurses to check our son if we thought he was uncomfortable. He was very particular about his position, to the point where if he was in a position he didn’t like, his blood oxygenation would plummet. It was like his way of showing us he wasn’t happy! So position was very important to him, and if he looked uncomfortable, we would ask.

We often asked about his stats (heart rate, oxygenation, breathing rate etc.). Over time we got a feel for what was normal (for example, higher heart rate after caffeine) so if we saw something unusual we would ask what might be causing it. Sometimes it was because a medication was withheld, or dosage changes. Other times we got wishy washy vague answers and then you have to push a little harder or speak with someone else.

For all the major procedures that he went through we always asked about risks, alternatives, side effects. Its also quite good to look some of this up on the internet as we found sometimes some of the risks weren’t really spelled out clearly, and when you are signing that waiver to perform procedures its good to know what you are getting into.

The neonatologists were more responsible for planning. So we would ask them the criteria our baby had to meet go home home, how were we aiming towards those criteria, what had to be overcome. Its difficult to get a consistent strategy with them on shift rotations so I found knowing this pretty useful to keep them on the same track. We would also ask them to keep us updated on the results of his x-rays, blood tests, heart ultrasounds, cranial ultrasounds etc.

Its difficult to keep on top of everything, and the medical jargon thrown around can be overbearing at times. So I never shied away from asking them to repeat something in plain English.

Handling the NICU Staff

At fist this might seem like a non issue. Everyone knows what they are doing, they are trained medical professionals, why would this become an issue at all?

Its true that they are trained medical professionals, and that they have dedicated their careers to helping babies and families. I am forever grateful for their expertise that saved my boys life and have given us the experiences we have today.

However as a parent, it took me a while to realise that the situation takes handling. As I said in my first post, at first I just wanted to agree with them and make their life as easy as possible. I thought their goals (my babies good health) is my goal so why get in their way?

Where it takes management is in the information and the details. Firstly, getting consistent information with so many health care providers is very difficult… we had 8 neonatologists who were on shift rotation, and maybe 20 different nurses also on shifts. Add to that the pediatric ophthalmologists, endocrinologist, cardiologist, and it’s a bewildering array of information about our son from different sources.

As things progressed, we were more and more involved in having information about what was happening. But the doctors would often have quite conflicting styles of communicating information and often quite vague responses which didn’t fill me with much confidence. For example, my son had Retinopathy of Prematurity (ROP) which is very common among premature babies. The ophthalmologists told us controlling levels of oxygenation in the blood is very important. A day later our baby was having wild fluctuations in oxygenation levels and we asked the doctor on shift about its relevance to the progression of ROP and he gave us a very vague “oh we are monitoring the situation” type response. I had to push (referencing some of the literature available) for a more detailed response, and the doctor didn’t look too happy about me questioning on this line.

In summary: Surprise! Doctors are people too and they all behave, communicate, and react differently and learning to manage them as individuals is very useful.

In terms of managing information we started writing it down. I used a format like:

Condition:
Symptoms:
Treatment:
Risks:

This leads me to the details. Some of the doctors were hardly ever with the baby. In fact we wouldn’t see them at all unless we asked the nurses to see them. If you decide to spend a lot of time with your baby you get to know the ins and outs, and you will notice details the nurses and doctors simply won’t (but probably should). For example, I quickly learnt that when my son was red, with a high heart rate and high respiration, he was probably too hot inside the incubator.

The next time it happened there was no doctor with us, and the nurse gave me another vague response of “no its to do with his medications”. I bought that for 15 minutes till I could see my sons behavior was not what it normally is, he looked distressed and his stats were all over the place. I called for the doctor who had quite an angry conversation with the nurse about why she didn’t check the temperature. He ordered hydration for my son and the temperature in the incubator to be lowered.

This is just one example of the way small details can be missed and can impact on the care of your child in the NICU. Don’t be afraid to ask about them, trust your intuition and ask for the nurses and doctors to actually look, check and verify that everything is OK.

I don't want to be down on the staff, they do an amazing job, deal with really difficult situations and families of all sorts in their darkest hours. And I would say 99% of the time I was really happy with the staff.

NICU Rules

Each NICU will have different rules. When my son was in the NICU, I did have to visit another NICU ward and was surprised at, even in my brief visit, how different some of the rules can be. For our NICU there was no pamphlet or any written information, we had to learn it as we went. Here's what I found to be the key things to learn

• When can I visit my son?
• What do I need to ask permission to do?
• Can I talk, sing, touch my son?
• Is there somewhere private for my wife to express milk?
• Is there somewhere to store my things?
• Can I ask the doctors/nurses questions?
• Can visitors come? What are the requirements? Who can and can’t come to visit?
• The hand washing regime, and also putting on medical gowns before seeing my son (don’t forget to take them off like I did once, walking down the street in my medical gown!)

There are also processes for handling unusual requests. For example, I wanted to play the guitar for my son. I asked one of the nurses, who asked the charge nurse, who asked the doctor, who said it had to go to the head of pediatric care in the hospital! Eventually I got the all clear.

If your NICU doesn’t have any information then you’ll have to ask and learn. But don’t take anything for granted (the grandparents, for example, might only be able to visit at certain hours, or one at a time, or even might have to look through a window into the NICU and not be allowed to enter).

NICU iPhone Apps

If you have an iPhone I found two NICU related apps that help parents:

NICU Words

This one is free, and a great resource. From the description on the app page:

Having a child that is born premature exposes you to the world of NICU (Neonatal Intensive Care Units) and SCN (Special Care Nurseries) where it can seem like people are speaking a foreign language. This app created by the Australian premature baby support charity the Life’s Little Treasures Foundation provides easy explanations to the words, machinery and medical terms that you hear in NICU/SCN.

NICU Words is a glossary designed to provide clear explanations of what medical terms, medical machinery and what medical roles are in NICU and SCN.

Features of this app
-Concise list of medical terms and medical machinery
-Description of roles of medical personnel in NICU
-Search function to help you search for words
-Over 170 words and terms featured
Easy to use and a great tool for parents with a “little treasure” in hospital going through the NICU/SCN journey.

By the same makers is this next excellent app:

Premature Baby Journal

This one costs $2.99. I found it really useful for tracking all sorts of stats. Again quoting from the app page:

Having a child that is born premature can be a very traumatic rollercoaster ride and this app created by the Australian charity the Life’s Little Treasures Foundation provides a place to store all your baby’s medical progress as well as a journal section for you to record your feelings.

The Premature Baby Journal is designed to track your baby’s progress through hospital and beyond. This app makes it easy to also track your baby’s feeds and when you (the mother) need to express.

Features of this app
-Records baby’s birth details
-Keep journals for multiple babies
-Converts actual age into corrected age (weeks)
-Tracks weight, feeding and temperature in graphs
-Tracks milestones and allows you to upload photos
-Records number of feeds, time of feeds, amount of feeds and method of feed
-Records total feeds given to baby per day
-Records number of expresses and amount expressed by mother
-Set alarm for when next express is due
-Record your feelings of all family members in journal section
-Set reminder for questions to ask to match the doctor’s rounds in hospital
Easy to use and a great tool for parents with a “little treasure” in hospital .
This app can be used world wide with settings for both imperial and metric

Both of these apps are by Lifes Little Treasures. I’ve got no affiliation with them, but I applaud them for doing something to reach out to parents and to pay for the creation of these apps.