Smidge and Smudge – Learning to Breathe

The immature respiratory systems of Smidge and Smudge have taken a bit of time to get started, but after some progress, and setbacks, we’re definitely making giant leaps forwards.

The Setbacks

Smidge and Smudge both had some infections, which knocked them sideways. Smidge’s gut had slowed down, and he was very restless for a few days but the nurses took bloods, found out what the infection was and could treat him.

Smudge had a partially collapsed lung due to a collection of air in her stomach. She was on the ventilator for about 10 days in total, and wasn’t coping well with being weaned down to lower pressures. However, she has now stabilised, and has come off the ventilator and on to the CPAP breathing support.

Breathing Support Levels

The levels of breathing support are:

  1. Ventilator – this machine does all of the breathing for the baby. The tube goes down the throat and into the lungs.
  2. Bubble – a breathing support machine that uses water to provide a constant high pressure (and literally does make bubbles) – the baby is doing the breathing though. Uses a mask over the nose.
  3. CPAP (bi-phasic) – Continuous Positive Airway Pressure – two-pressure levels that support the breathing in, and the point at which they’ve breathed out ready for the next breath. Uses a mask over the nose or nose prongs.
  4. CPAP (single phase) – maintains a level of pressure in the lungs to keep them partially inflated, ready for the next breath. Uses a mask over the nose or nose prongs.
  5. High flow – Prongs up the nose with a high flow of oxygenated air that keeps minimal pressure in the lungs.
  6. Low flow – as for high flow, but with an even lower pressure. Babies can be sent home on this.
  7. Just increased oxygen in the incubator – no mask or prongs on the nose, but increased oxygen (~30%, air is 21%) in the incubator
  8. No support – baby out of the incubator and breathing normal air.

  9. When they were born, both progressed from level 1 to 3 or 4 within a couple of days, but as they progressed, they developed chronic lung disease, a common condition for premature babies. Their lungs became less flexible meaning they got tired and had to go back on the ventilator for a few days for a rest. We were told to expect this apparent step-back, but it still felt disappointing.

    In the last week or so however, they have progressed from levels 2-4 to having a couple of hours a day on the high-flow (Smudge, level 5) and just the incubator and oxygen (Smidge, level 7)! This is the most positive progress yet, and the blood gases show that they are tolerating it very well.

    As they’ve been more stable, we’re starting to have more and more cuddles with them, with the plan that well be able to have a cuddle with each of them once a day. So far, I’ve only had two or three cuddles with each of them – my first cuddle with my son was on Christmas day 🙂

    Feeds

    Both Smidge and Smudge are on full breast milk for their weight, now up to 19ml and 15ml every 2 hours respectively, meaning that have come off the TPN (highly concentrated liquid nutrition), and they are tolerating the milk and added fortifier, caffeine and vitamins fairly well. Having all this milk means that their weights have gone from 735g / 1lb 10oz to 1.36kg / 3lb (Smidge) and 825g / 1lb 13oz to 1.23kg / 2lb 13oz (Smudge) in 5 and a half weeks.

    Eyes

    Today they had a routine appointment to get their eyes checked. I’d been slightly concerned, particularly about Smudge, that they might have some sight issues, but they were given the all clear, with another check up in a few weeks. Various levels of the breathing support, and in particular not having a steady level of oxygen saturation can affect some cells at the back of the eyes, hence the need for them to be checked regularly.

    Registration

    We’ve now also registered the births, and officially given them names with the registrar, so the twins now have alter ego names used by the doctors and nurses when they don’t want to be overcome with the celebrity status they got from this blog…

    What Now?

    The plan over the next week or two is to have both of them extending the length of time that they spend off of the CPAP support each day, as well as coming out for cuddles. At this stage, everything is set to just keep feeding them and growing them until we can lose the enclosed incubators for good.

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Gary Jones

Gary Jones is a UK-based WordPress Engineer, code consultant, and father of extremely premature twins. Driven by a passion for excellence, he creates elegant WordPress plugins and theme solutions for clients, and provides services, including code audits, for other designers and developers. Gary is a key contributor to the Genesis Framework and has contributed to all except one major branch of WordPress Core since 3.3. He has contributed to many open source projects in the community, and is a co-host on the UK Genesis podcast. A former teacher in schools and prisons, Gary's goal is to educate WordPress professionals on how they can improve their code. His motto is knowledge is power.

  1. Chris Ford on 2012-01-10 at 00:25

    So glad to hear they’re getting better! My niece was in NICU for the first 6 months, and I know the hardest part for my sis and BIL was not getting their cuddles in, so I’m glad you’re going to be seeing more of those soon!



  2. Hayley on 2012-01-10 at 08:16

    That is fantastic news, I take it their ‘release’ date is still looking good to.
    Hugs and kisses to you all xxxx



  3. Heather Raggett on 2012-01-10 at 10:18

    So happy for you both to hear this news and glad that they are gaining weight – lovely to see the pictures of you both with them too!!



  4. Anu Davies on 2012-01-10 at 11:35

    great news and so pleaed for all of you. keep up the good work S &S!!
    kep these posts coming Gary



  5. Kate Millin on 2012-01-10 at 13:50

    Good news about their progress and weight gain, and thanks for explaining the levels of ventilation. Best wishes to you all, and here’s hopin for more cuddles very soon.



  6. Becky on 2012-01-10 at 14:10

    Great news. Go babies! Hopefully you will be off oxygen by the time you are due to come home.



  7. Maria La Chica on 2012-01-13 at 12:06

    Gary and Katie, many,many many congratulations!
    This is great news… I had started to wonder how everything was going, especially after not having any updates from Katie on the blog in the last few months…and it turns out that the twins have already been born!! I can’t express how happy I am for you both.
    Best of luck and please keep us updated!



  8. Sue Eastick on 2012-01-14 at 19:43

    Great news & it is good to see Katie looking so well.
    My love to you all we are all thinking of you & wishing you well.



  9. Cindy Allen on 2012-01-15 at 06:38

    I followed a link of yours from a WordPress forum and find myself reading in a stunned state. My son Matthew was born December 6, 2000. He was due March 3, 2001. We always joke that he came not only the wrong month but the wrong year. I can hardly believe we share such similarity in due dates and level of prematurity.

    I know you’re wrapped up in talk of Brady’s, PDA’s, PVL’s, apnea and more. And it doesn’t always end in the NICU. Search the Internet for writings by Helen Harrison. She’ll give you a glimps and some insight into the amazing future of Smidge and Smudge. It can sometimes be a little extra work raising our VLBW miracles but the rewards include occasional peeks into the awesomeness of nature that “regular” parents miss out on. And you’ll soon realize, if you don’t already, that when “regular” parents talk about the miracle of birth and the joy their child brings they don’t have a clue. I think our extra little “vision” into the miracle is Gods way of rewarding us for the extra care demanded of these early arrivals.

    Please feel free to write if and when you’d like direction toward some helpful readings or web groups. You’ll find a lot of experience and guidance out there if you look.

    All my best thoughts, wishes and prayers. And congratulations!