Wheezing

We’ve just had our first case of respiratory illness since Talia came home.

When she was discharged from KEMH, we were warned that her chronic lung disease meant that it was very likely she could end up back in hospital with some sort of respiratory infection. So we took every precaution the first winter, staying away from shopping centres and zealously avoiding people with colds. It paid off - not even a sniffle. This year she had a flu vaccination and avoided all but a few minor colds. So I guess we should be very happy that it has been 16 months since she came home before she actually contracted anything even slightly worrying.

Last weekend Talia started coughing, a nasty chesty cough, and by Tuesday she had developed a most impressive wheeze. Maybe not quite as bad as Darth Vader, but loud enough that I could hear her breathing from the next room, over the top of my husband’s electric shaver.

When I called my GP on Wednesday morning they said they were full for the day - but when I said I had a one year old with a bad wheeze they managed to find me a slot very quickly! The doctor thought it might be bronchiolitis, but said that our options were limited. I could try and administer ventolin via a spacer (something I could see Talia struggling against and hating) or if her breathing became more laboured, I could take her to PMH.

Fortunately Talia’s condition remained stable and although the wheezing continued another couple of days and the chesty cough is still with us, I didn’t need to rush her to hospital (thank goodness!) She was tired and not the happiest of little girls, but otherwise handled the week very well.

Now it is a waiting game to see if she develops a wheeze with future illnesses - a possible symptom of asthma - but fingers crossed, hopefully not.

Why I love reading to my baby

Some parents read aloud to their baby in the NICU. It is the sound of the parent’s voice and not the subject matter that is important, so you can read anything you like. The nurses at KEMH told me about one father who read his premature son “The Silence of the Lambs”! My husband and I preferred to sing to Talia, and only started reading to her some months after she came home.

Here are some of the things I love about reading to my baby.

- Board books. Wow, such a big change since I was a kid. Now you can safely leave books at floor level without the risk of them being torn to shreds because your child loves the sound of ripping paper. (I use junk mail for that activity!)

- Books with flaps, textures and mirrors. Even more wow! Talia cannot get enough of looking under flaps, putting her fingers through holes, touching squishy/fluffy/scratchy things and (best of all) looking at her own reflection.

- Making up new words. Some books just have too many words per page, especially for a baby who likes turning the pages quickly. It’s good to have your own “short version”, especially if you’ve read that particular book three times today.

- Finding things in the pictures. Some days the illustrations are more fun than the story line. I point out the mouse, the boat, the sun, the flower, etc in the background. Then I ask Talia to find those items for me.

- Silly noises. Reading to a child gives you complete freedom to make as many silly animal noises and other sound effects as you like. So I mooo, pop, bang, miaow, grrrr, brrroom, woof, oink, squeak and boo to my heart’s content. Go on… you know you want to!

- Opportunities for karaoke. Are we on a page with a star? I launch into Twinkle Twinkle. Is that a picture of a frog? I start singing “Galumph went the little green frog”. Your baby will love it. Well, mine does anyway! If you’re in WA and you received a copy of Baby Ways from your local library or child health nurse, you can sing the entire book to the tune of Here we go Round the Mulberry Bush.

I’m listing some of Talia’s (and my) favourite books on Talia’s Bookshelf - this will be updated as time goes by.

Some other good reading links

Mem Fox’s Read Aloud Commandments

“Reading with babies” , also available as a leaflet from your local child health centre in WA

Talking late

According to the development reviews we’ve done so far, communication is the area where Talia is most delayed. Until very recently, her spoken language involved some fantastic babble but almost no actual words. At 12 months corrected she occasionally used “gat” to mean cat, but not consistently, and that was it. She was late to point and even now (15 months corrected) does not nod or shake her head.

Read my lips... no more pavlova...

We have received a referral to see a speech pathologist but are still waiting for our first appointment. In the mean time we continue to talk, sing, read and (to a lesser extent) use sign language with her. We are not particularly concerned, in fact we think it’s likely that she’ll be a complete chatterbox once she does finally get the hang of talking. But there’s no doubt that having a baby who’s a late talker can be a source of anxiety.

In the last month I’m relieved to say we have seen a huge change and improvement in both her spoken vocabulary and the number of words she understands even though she doesn’t try to say them herself. Her favourite spoken words are “boo” which means ball, balloon or bubbles, “woo woo” which means dog (woof woof), “dut” which means duck/swan/coot (our local park has many of them), and “gat” or “tat” which means cat, cow, elephant, giraffe, parent or any other random passing animal which is not a woo woo! She also says “shzz” for shoes/socks, a slightly different “boo” sound for book, “fuff” for flowers, “fish”, “shut” and “gak” for cake or biscuit. In the last week she has started to say “okay” in response to questions. So we are suddenly at 10 words (and more), although interestingly none of them is mum, dad or no, which are supposed to be the most common first words.

Talia’s receptive language has also grown in leaps and bounds this past month. She can find a particular toy or book, and point out all sorts of objects on the pages of books when asked. She is starting to distinguish colours and a few parts of the body, and can respond to simple questions. Even though I know it’s normal, I still find it really quite impressive that she understands so much more than she can say.

I started taking Talia to sign language classes (Signing Hands) earlier in the year, predicting that she would be slow to talk. Unfortunately I didn’t factor in that she would also be very slow to sign! She will indicate milk via sign language, but that’s been all so far. It has been an interesting experience for me to learn some Auslan, and now I have the tools to sign more if required in the future, so that (hopefully) she can communicate with us without too much frustration if she still finds speaking difficult.

Necrotising enterocolitis (NEC)

What is it?

Necrotising enterocolitis (NEC) is a condition where the bowels (intestines) become infected and inflamed. “Necrotizing” means the death of tissue, “entero” refers to the small intestine, “colo” to the large intestine, and “itis” means inflammation.

Why does it occur?

Most cases of NEC occur in premature babies, typically within the first 2-3 weeks of life and usually after the baby starts receiving milk feeds. The exact cause is not clear, but it seems to occur when a baby’s immune and digestive systems have not yet properly developed. An immature gut may have difficulty absorbing milk. If a baby’s intestines are weak due to low oxygen (due to the body prioritising oxygen to other parts of the body) or poor blood flow, then the stress of food moving through it may result in bacteria that would normally not cause any problems invading and damaging the walls of the intestine. In addition, a premature baby’s immune system may not be able to deal with the resulting infection.

NEC is less common in babies who are fed expressed breast milk rather than formula, possibly due to the anti-bacterial and anti-inflammatory properties of human breast milk.

Why is it a problem?

If a NEC infection becomes severe, it can cause serious damage to or holes in the intestines, and/or infection of the blood or the membrane lining the abdomen. This can be life-threatening in a tiny baby with an immature immune sytem. Even when a case of NEC is mild, doctors must stop milk feeds until the infection clears up, resulting in a baby failing to gain weight at a critical time in its life.

The lower the birth weight and earlier the gestational age of a premature baby, the more likely they are to develop NEC, and the higher their chances of dying from it.

How is it treated?
For babies who have mild to moderate NEC, treatment usually consists of
- “nil by mouth” - stopping milk feeds and using intravenous feeds (ie through a vein) while the bowel recovers
- a course of antibiotics, and
- removing extra fluids and gas from the intestine via a naso- or orogastric tube.
This treatment usually lasts between 3 and 10 days.

If the baby’s abdomen is so swollen that it interferes with breathing, extra oxygen or a ventilator may be used to help the baby breathe. If the baby does not improve with treatment, or if he or she gets a hole in their intestines, it may be necessary to use surgery to remove damaged parts of the intestines.

Unfortunately NEC is difficult to diagnose quickly, as the earliest symptoms can be quite general (eg apnoea and bradycardia, temperature instability) and vary depending on how severe the condition is. Later symptoms include a swollen belly. A diagnosis of NEC is usually confirmed via x-ray (showing air bubbles in the intestines) and blood tests.

Hospital staff try to minimise the risk of a baby contracting NEC by carefully regulating the amount of milk a baby receives, increasing the volume of milk slowly, encouraging mothers to express milk for their baby, and maintaining strict hygiene standards in the NICU.

Are there ongoing complications?

Most babies who develop NEC recover fully and do not have further feeding problems, but in some cases, scarring of the bowel may occur, particularly if surgery was required. This can lead to future problems such as malabsorption (the inability of the bowel to absorb nutrients normally).

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This is one of a series of articles I’ve written for the L’il Aussie Prems newsletter under the heading of Premmie Health. Read my disclaimer here.

Immunisations for premature babies

Talia had her 18 month vaccination this week - the regulation shot against chicken pox, but also an extra dose of Hepatitis B vaccine. I hadn’t realised until I opened her purple health record book that morning that there was a handwritten amendment to her vaccination schedule indicating that she needed this additional shot. The nurse at the central immunisation clinic at Rheola Street told me that it was due to her extremely low birth weight and that babies born under 1000g require this extra shot.

Then I found the following information online at http://www.immunise.health.gov.au Common questions on getting immunised I have highlighted the vaccines they mention.

Premature babies especially need the protection of immunisation because they are more prone to certain infections. In general, babies born prematurely receive the same immunisations as other babies. However, very low birth weight babies may have a lower response to hepatitis B and Hib vaccine. The immunisation requirements of a very low birth weight baby should be discussed with your paediatrician and may include having their antibody response checked after immunisation, a delayed immunisation or an extra dose of the hepatitis B and Hib vaccine. As well, premature babies born at less than 28 weeks gestation require an extra dose of Hib vaccine and pneumococcal vaccine.

So Talia’s hepatitis B has now been taken care of, but what is supposed to be happening with regard to Hib and pneumococcal?

I borrowed a copy of the Australian Immunisation Handbook, 2008 edition and the answers (text taken either directly from the book or summarised as accurately as possible) are as follows:

A fourth dose of Hib vaccine is recommended for preterm babies born 28 weeks gestation or earlier, 1500g or less, if they are vaccinated with PRP-OMP. When other Hib vaccines, including Infanrix hexa, are used, no change in the usual schedule is required. [p136] So if you’re prem and in Perth, you don’t need to do anything because the WA government uses Infanrix hexa (DTPA-IPV-HepB-Hib) for Hib vaccination at 2, 4 and 6 months, plus there is a single Hib shot at 12 months.

All preterm babies born at less than 28 weeks gestation or with chronic lung disease should be offered the 7-valent pneumococcal conjugate vaccine (ie the current pneumococcal vaccine for babies and young children) at 2, 4 and 6 months of age (as per the schedule), with a fourth dose at 12 months of age, and a 23-valent pneumococcal vaccine (the older standard pneumococcal vaccine) booster at 4-5 years of age. [pp89, 244-247] So I need to arrange for Talia to have this fourth dose.

Preterm babies do not respond as well to hepatitis B-containing vaccines as term babies. Thus for babies born at less than 32 weeks gestation or less than 2000g birthweight, it is recommended to give vaccine at 0, 2, 4 and 6 months of age, and give a booster at 12 months of age (unless antibodies are measured and found to be in high enough concentrations).[p157] This is the booster which Talia ended up having this week, at 18 months.

In case you were wondering, Talia has never had any problems with any of her vaccinations. She wails indignantly for about 10 seconds, and then the nurse blows a stream of beautiful bubbles and distracts her completely.