Before we go for these appointments we are sent a questionnaire to complete. These questions range from speech, movement, food and social interactions. We completed Tahnee’s questionnaire when she was only 7 months old and already then she was doing everything an 8 month old baby is “expected” to do.
So on the morning of our appointment we prepared and we on the road by 830am for a 950am appointment. The freeway driving was steady and we arrived early for our appointment. We were also lucky enough to get a parking bay straight away!! We headed up to the Outpatients department for our appointment. We also had Lucas in tow, for the first time. He loved being able to play with the playdough, read and colour. But he got sick of it all pretty quickly!!
Standard neonatal paed appointments include a weigh and measure of Tahnee. Her weight is still hovering around the 25th percentile and her length is still around the 50th percentile.
After the measurements were recorded we went in to see the paediatrician, Dr David Baldwin. While we were walking to his office, he turned to us and said he remembered from our time at KEMH. We were a little shocked. Tahnee had only been at KEMH for 15hours, and that had been a while ago. And we also didn’t really remember him, although we thought we recognised him.
Once we were settled in his room we were able to talk about Tahnee and her development. We quickly bought him up to speed on Tahnee and her medical history. He then checked out her hips and legs and attempted to listen to her heart and lungs while she screamed! Her screaming gave us a good opportunity to ask about her abdominal hernia. For those that may not know, Tahnee has a protruding abdominal hernia which is more prominent when she is upset. The doctors and her surgeon have agreed to give it time to heal on its own. However, I have been quite worried about letting her cry too much as I didn’t want to do any damage to internal organs or have something such as a blocked bowel happen. So I asked him what the likelihood of something horrible happening, and he basically said next to no chance and we can let her cry as hard and as long as we want to! This is great news as it really shows the hernia is not life threatening, unlike her original diaphragmatic hernia. Dr Baldwin then went on to say that yes it will take time to heal, as long as years, and if it doesn’t heal on its own the doctors probably wont do anything (i.e. surgery) until Tahnee is either nearing school age or at school. We then asked if there were any exercises we could do t help her and he said no. But her sitting and crawling will all help and indicates that her hernia may already be healing itself.
We then asked about her foot, which has been slightly turned out since birth. The doctor checked it out and again said not worry. She turns it the right way when putting weight on it.
Finally we discussed the issue of weight gain. Many people who read the blog and who have spoken with me would know that I have been very worried about Tahnee’s weight gain. The rational side of my brain tells me she looks healthy and she is doing well, so not to worry. But the irrational side of me says she is small and doesn’t gain a lot of weight, what does that mean, is there something else wrong with her, is if the CDH….? Everyone assures me she looks great and I don’t need to worry … but PMH put a lot of focus on weight gain, so I was preparing myself to be told that Tahnee should be put onto formula, like we were told to put her on solids at 4 months. However, this was not the case. The doctor wasn’t really concerned about her weight at all and said she was tracking nicely around the same percentile!! It was such a relief :) and it was good being able to talk with someone who was fairly relaxed about Tahnee and her health. Hopefully the next 4 months are less stressful for me, in regards to Tahnee’s health.
At the end of the appointment the doctor said we would need to come back at 12 months for a full developmental check where children are given a range of activities and then assessed. And in regards to long term appointments, after that 12 month one we will be told when to come back, but it more than likely be around the time Tahnee turns 2!
After our appointment we headed to the café to meet a friend for coffee. We enjoyed a good chat before all heading up to Ward 6B to visit with the nurses and give back the empty milk bottles! It was great being able to see the many familiar faces of the staff on NICU. Sadly we found out that my favourite nurse was now working at KEMH so we were unable to see her.
Around lunchtime we headed out to the car and decided to stop past KEMH and see our foetal medicine specialist, Profession Jan Dickinson. She has never seen Tahnee in person, and we thought it would be good to go as we had the time. So we drove over and I jumped out to check if she was actually in the hospital. After checking with Enquiries, the Clinic and finally Ultrasound I discovered that yes she was there and she was available. So it was back to the front to get Chris and the kids, and then back down to Ultrasound. Jan was very excited to see Tahnee and have a cuddle! We also got to see 2 of her midwives attached to the GOLD team, and it was very special being able to bring Tahnee back, especially as they don’t often get to see “their babies” once they are born as they are more concerned with antenatal.
After seeing Jan we prepared to leave KEMH and were walking through the main corridor when we happened to see our usual paediatrician walking towards us! So we stopped to have a little chat and a quick cuddle, before continuing on our way out. After continuing on our way, we talked and decided to turn back and see if our favourite nurse was working. I looked after the kids while Chris went into the NICU to ask for her at the front desk. And it so happened that Bec was working! She was relieving someone else, and was quite excited to see us and Tahnee again.
After a quick visit with Bec we headed back out of the main entrance. Then for some reason we had to stop right outside the café windows and as I glanced inside I recognised another face – this time it was one of Tahnee’s neonatal registrars who had been with her for most of her time at PMH. Dr Tobias recognised us too and we had a quick chat with him too.
After finally making our way to the front entrance again, Chris turned to me and asked if there was anyone else we wanted see. We discussed it and decided to go back in side (again!) and check if the midwife who delivered Tahnee was working. This trip inside took us up to level 1. At the front desk we asked if Laura was working and found out she was! As we were waiting for her to be contacted, we heard a code blue over the PA system and were asked to step outside of the birthing suites. As we were doing thing we saw many medical personnel running to assist with the code blue. It hit home a little as that could have been us that triggered the code blue alarm all those months ago.
We waited for ten or so minutes before we saw Laura walking towards. She hadn’t known who was waiting for us and was super excited to see us. She recognised us straight away. It was lovely being able to see her and talk with her again. People look at me weirdly when I saw we had a great day the day we were in labour with Tahnee, but its true and it was mainly due to Laura. She is a lot of fun and on that day she took our minds off Tahnee, her birth and her life threatening condition. In retrospect she made the day less stressful, which was exactly what we needed after the stressful pregnancy. I can remember so much of that labour day, talking and laughing with her! And we discovered she has fond memories of that day too and thought it was fantastic to see one of her babies that she delivered :). The only downside was that Tahnee was sleeping so she was unable to have a cuddle.
Once we had finished visiting with Laura, we made our final walk down the main corridor and this time made it to the car!! We loaded both of the kids into their car seats and made our way home. Thankfully both of them slept the whole way home!
All up it was a very good day. It was good to get answers and have some stress relieved. It was fantastic to see all the people we knew and introduce a few to Tahnee and it was especially special to see Laura again.
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