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. 

NICU Equipment

This is a list of some of the equipment we saw in our NICU. Your mileage might vary! After a while in the NICU you’ll get familiar with all the equipment, what it does, and how changing equipment can signify changes in your babies condition, I’ll expand on that in a later post.

Nicu Incubator

There are many types of Incubators used in the NICU, a quick google will reveal the many different types. Our baby had a GE Healthcare Giraffe Omnibed (pictured). These are used to keep the baby warm, as premature babies struggle to maintain their own body temperature, and also humidify the air. As well they provide easy access for the many cables and tubes a premature baby needs. Some have their own built in monitoring, others use external monitors.






Monitoring Equipment

Monitors like the one pictured (which is what our baby had) are used to monitor vital stats of the baby. They can be configured to display in many different formats, but typically I found in our NICU they showed heartrate (the top line in the picture), Blood oxygenation level as a percentage (the middle line in the picture) and then also breathing rate (not pictured).

They do this via various monitors stuck to the babies body. 3 chest monitors are stuck on for the heartrate. The blood oxygenation is measured via a red light that is usually strapped to the babies extremities (hands and feet), it measures the colour of the light on the other side and determines the blood oxygenation level that way.





Infusion Pumps

Infusion Pumps like the ones pictures are to assist with slowly pushing medication (sometimes injection just 15ml can be done over 4 hours for example). I was always fascinated with these. The first one pictured is to handle IV infusions, the second one (as you can see in the picture) handles syringes.

 

 

 

 

 

 

High Flow Oxygen Support

This equipment is linked together to help the baby get oxygen. Basically oxygen and air are hooked up to the Air-Oxygen blender, where they can set what percentage of oxygen should be pumped out. That goes to a device to say how many liters of air per minute should be pushed out. This goes to a humidifier (pictured below) to add humidity to the air which is then sent via a tube to a nasal canular.

 

Worth noting, with our baby his lungs had issues with humidity so we had to keep a close eye on the tube coming out of the humidifier as it would build up drops of water which would go via the tube into the nose and into the lungs, so we had to monitor that and ask the staff to clear out the water from time to time.

 

 

 

 

 

 

 

Ventilator

If your baby has to be forced to breath on a schedule (as is likely when first born, below 34 weeks or so) then he will probably be on a ventilator. This machine will work similar to the above, but the tube will be inserted into the lungs, and the machine will force inhale/exhale. The one we had had two modes of working, that would force the baby to breath, and another that would wait for the baby to breath and would assist. Clever stuff.

Handling emotions in the NICU

Emotionally, life in the NICU is tough. Watching your baby in an incubator, with tubes stuck into them, monitors onto them, handled largely by nurses, fed by syringe dripping via a tube into the stomach only being able to talk and touch through the bay doors in the incubator is difficult. Add to this the often conflicting, intensely complex medical information being provided by many different sources, and its an emotionally charged environment. We wanted to be with our baby as much as possible. To check every little detail which was often overlooked (water in his nasal tube delivering oxygen is probably the most common one we experienced, that we were constantly prompting the nurses to look into) we felt like we should be there all the time, which also takes a toll. Once I came from work to the NICU, during the time our son was diagnosed with a list of issues and my wife was a tightly wound coil of stress. I packed her in a taxi to the nearest Day Spa for a massage and some pampering, which was probably amongst the best money we’ve ever spent.

Emotionally, you have to deal with guilt, fear, confusion, anger, stress, and to face the fact you have very little control or power over what happens is very difficult. But there is also pride, joy, and happiness in some quantities as well. The feeling when our son was extubated, for example, or first breastfeed at 33 weeks, was quite something! Its definitely a rollercoaster of emotions.

My advice is to focus on the positives. Sometimes it feels like its all negatives, with the doctors talking about the various conditions your baby faces, the complications, the problems, but very little about the positives. If the situation has any positives, focus on those.

Intro and Tips for When your Baby is in the NICU

When you have a premature baby, for the period of time your baby is in there, your life is completely changed. One thing that surprised me was the lack of information available, both from the hospital we were at, and on the internet.

As I state in my profile, I am not a medical professional. Always listen to the advice of your medical practitioners. This blog is purely for advice from a parents perspective.


I’ll be going into much more detail in later posts but I thought I’d start with my key NICU tips:

• Learn the rules of the NICU (do they have somewhere to store your stuff? What hours can you visit? Who else can visit? Hand washing routines etc)
  
• You can ask the nurses and doctors anything. In my experience, they like to educate the parents. You can ask them to repeat things, explain in a different manner, drop medical terminology etc. You are the customer and the NICU should respect your role as parents.
  
• Respect the other families in there as you would like to be respected. When their babies are having x rays, leave the room without complaint. Don’t play loud dance music when you get good news about your baby (as one family did just as we were getting quite bad news about our baby). Don’t pry too much into their personal lives and try not to judge, as its difficult to know what they are going through.
  
• Be polite and respectful with the staff, but firm. At first I wanted to make life easier for the nurses and doctors. It took me about a month to toughen up and realise that some of them would slack off totally given the chance. But never be rude with them unless absolutely necessary. They are the gateway to your childs care and it is important to establish a good, but professional, relationship.
  
• Try to learn what is happening to your baby, bit by bit. At first I focused on the monitors, what the heart rate, blood oxygenation and breathing rate signified and their interactions. Then the weight chart that the nurses kept. Then other medical factors, such as the level of oxygen being supplied, the types of drugs being administered, their dosage and frequency.
  
• Seek information. Our NICU had a copy of various medical tomes, which, though laden with medical terminology, were invaluable for understanding the various conditions and diagnoses we were hearing about.
  
• Utilise the downtime. When being with your baby, there are periods where they will need to sleep uninterrupted by your talking or touching them. Having something to do while sitting there is good. A book, a game, an iPad, something!

Any other tips or thoughts? Share it in the comments!