Laura's Story\

Laura’s Story – Part 30 – The greatest hurdle

Being home was amazing. The three of us were becoming a real family – we went for walks (if it was warm enough), we played, we read stories, we ate together. It was these small things that we didn’t know if we would get to do. There were many times when we had to wonder if the hospital would be the only life that Laura would know and we thanked God every day that she was at home.

About a week and a bit after our discharge, it was time to head to the Pediatric Outpatient department for the first of many clinic visits. The morning would begin at 06:00 when I would get up to pump and A.J would start Laura’s feed and then shower. We had to wake Laura up at 06:30 to get her dressed and ready to meet some new people. We left the house at 07:00 to make sure we wouldn’t be late to our first appointment.

Once at the hospital, we went to the lab first for Laura’s blood work. We handed in our requisition and sat in the waiting room to wait for her turn. They were quick to get her in and we were surprised and glad that they were able to get what they needed from her with only one poke!

Then, it was time to head to the pediatric outpatient department to meet up with the cardiology nurse. “A” was amazing. She was kind and really good with Laura. Laura was excited to be around so many people after having only spent time with the two of us for the last week and was hamming it up to make sure that she made a good impression. While we waited for our turn with the sonographer (to do the ECHO) we saw Dr. P – she had done Laura’s cath back in October and was happy to see Laura looking much better than she did then! We were happy and also sad to see that she was expecting! Happy for her but sad that she would be gone on maternity leave soon.

Laura had her Echo and an ECG while we talked with the cardiology nurse about Laura’s history and how life at home was going. She asked us about Laura’s meds and we went through doses, times and weaning schedules. She asked how Laura’s withdrawal was and we told her that it was under control – she had some mild symptoms but nothing crazy. We took Laura’s blood pressure (which was a bit high – as usual) and her sats (which were 100!) and then it was time for the cardiologist to come in.

Dr Ph(we’ll use two letters to avoid confusion with Dr P) was taking care of Laura’s clinic appointment for the day. He did his assessment and then it was time to go through everything. We spoke about Laura’s history and the questions and concerns that come along with having had 127 minutes of cpr and two runs on ECMO. We talked about her development which at this point was very behind. We spoke about her muscle mass which was pretty well non-existent – she was hypotonic. He explained that he wanted to make sure that Laura had a full assessment done at the child development program to make sure she continued to go in the right direction. He also wanted her to have an appointment with neurology to discuss whether Laura needed an MRI to see if she had any damage from her surgeries, cardiac arrests, LVADS or ECMO runs. We discussed her weight which was slowly coming up which was great. And then came the question we had been dreading… feeding.

Is she eating anything orally?

Well…kind of? Over the last few days she had stopped taking her bottle – she had decided that she hated it and wanted nothing to do with it. All of her food was coming through her NG tube. Feeding was the biggest pain that we experienced with Laura – she would scream when anything came near her and she had no desire at all to drink her milk. The only thing that worked was that she would suck tiny amounts off an oral swab but that didn’t amount to much. She liked the taste – she just hated bottles and cups.

This had been a thorn in our side because people do not understand a baby that doesn’t drink milk. Maybe you just need to try another bottle! Maybe she needs to breastfeed. Have you tried the Dr Browns bottles? Maybe she’s just not hungry. She’ll eat when she wants to. The list goes on. People really like to give their input even if they don’t understand the problem. Babies have a natural suck reflex for the first 3 months of life – after that, they have to decide to eat – Laura had a behavioural issue that would take time to fix – there was no quick fix for this.

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Laura being hilarious

Then came the conversation that we had been pretending wouldn’t come… “in the future, if she still wasn’t drinking anything, we may have to think about a G tube.” A G tube is a feeding tube that is surgically placed in the stomach. This is much more permanent than an NG tube and it involves another surgery. For kids that really struggle with eating, it can be a God-send because it means no more tape on their face and no feeling a tube down their throat but we were really not interested in going the G tube route – at least not yet.

Dr Ph wasn’t suggesting that we go for a G tube right now – that would be silly because we had only been trying to feed Laura orally for about 2 weeks but it was something worth thinking about.

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Laura “eating” after her appointment

The rest of the appointment went smoothly and we were able to leave the hospital around 11:30 or so. We were going to stop at a medical supply store on the way home to pick up a few more NG tubes, some cavillon wipes (the best things ever that they don’t use at the hospital in Saskatoon for some reason) and some more oral swabs for Laura’s nystatin (mouth rinse).

In Saskatoon, Nordon Medical is the place to go for medical supplies. We went in and found a woman to help us out. She showed us where everything we needed was and some extras – we bought a 1 gallon container of Isogel to refill our small containers and also got some more syringes (you can never have too many syringes). We were talking to her a bit about Laura’s problems with eating and how she hated bottles but loved her soother and the lady suggested that we try putting a premie NG tube in her mouth beside the soother and use a syringe to push the milk in. At this point we were willing to try anything and she gave us the tiny NG tube for free.

When we got home we got to trying this tiny NG trick and she drank 40 mls her first try! It was a pain to do… A.J would hold the NG tube and the soother and I would fill the syringe and slowly push the milk through the tube but she was drinking! We were so excited that it worked that we genuinely didn’t care how annoying the whole process was. We decided that this is what we would try for a while and then maybe we could get her to take a bottle after that.

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At least there was some hope…

 

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