I'm always reading about Heidi's new milestones but haven't posted. Take care of yourself first so that you can be there for Heidi and your son. If it means taking that extra day/days to make sure you are healthy then so be it and it will ease your mind. Having said that I'm sending all the love and healing thoughts I have your way. Best wishes for your family
Thank you for checking in on us & your supportive words. I've been floating around reading & not posting - I just haven't had the energy to write what has been going on for Heidi these last few days. I don't really know where to start to be honest, its just one thing after the next for the poor little chicken.
We went in Wednesday hoping that things were looking up, and tummy wise, it looks like she's recovering from the infection. But as many of you who have travelled this road before would understand, as these tiny little bubs get treated it usually results in one step forward, a few backward and a couple off sideways in a completely different direction. Wednesday morning we arrived and they advised us they were going to re-tape her ventilation tube. Usually a fairly simple & straighforward thing, but the docs discovered that the tube had actually moved too far into her little lung and was in the incorrect position. DD didnt tolerate them re-positioning it, she had a fairly major episode which appears to have contributed to a small pulmonary haemmorhage (bleed on her lung). That same day she had to have her eyes tested to check for any deterioration of the blood vessels (routine check they do) but its not a pleasant procedure for them and it was just coincidence that it happened the same day. So she was put through the ringer big time, it was a very hard day for all of us.
She's had very little luck with the central lines & IVs they've put in - they either can't get them in the right position or they start to puff up at the insertion site. Wednesday they removed an IV for the same reason and Thursday they had to remove a poorly positioned central line and insert a new one in the other side of her scalp. Thankfully they've got it into a great position and fingers crossed it lasts her through all this treatment and won't have to be removed. It means they've shaved both sides of her beautiful little fuzzy hair though, which is so hard. Minor in the scheme of things I know, but hard. Overnight on Thurs she went downhill again and the ventilation tube had moved AGAIN which meant it had to be re-positioned but she tolerated it a bit better this time. It was at that point they x-rayed her chest as they were a bit perplexed and the bleed on her lung became apparent. It may also be partially related to a small opening in one of the heart ducts which is too tiny to warrant treatment but there all the same. They say that her lung will heal over time, but its not ideal when her lungs are already under so much stress and strain already.
She's had a fairly restful & settled weekend though which has been a relief after a few days of trauma. She very much needed a break and some time to keep recovering and just to be left alone for a while. Tomorrow and the next few days will see more tests and a decision about how to proceed from here with her ventilation etc. From a tummy point of view the docs are fairly happy that she is past the worst from the NEC infection but they do suspect she has a blockage in her bowel somewhere. Its day 14 of her ABs & nil by mouth treatment tomorrow and she hasn't moved her bowels so they think something is going on still. They're going to put some dye down and xray to see whether things are moving or not and decide what to do from there. If her lung remains stable they may consider taking her off the ventilator which will be a positive step, but we just don't know how she'll go. I can tell she is so annoyed with the tube and she kicks up a big stink when they try & wean her from the morphine. She gets alert enough to realise what is happening and lets the nurses know that she's not happy. Which is a good sign that she's got some fight in her, but I just hate seeing her so uncomfortable.
So keep her in your thoughts as we get through the next few days. I'm just clinging onto whatever I can hoping that this week brings some positive steps forward for us. I'm all over the shop, I can't concentrate very well right now. People talk and I'm just in la-la land most of the time, trying to listen but not succeeding much at all! I'm struggling to sleep. Even if I do get some light sleep in, I'm constantly aware and thinking about her and what is happening. I'm over the cold/chest infection I had but struggling on so many other fronts, I'm just trying so hard to keep it together for Heidi. I can't plan anything in advance right now, just going hour-by-hour as everything is so changeable. We're up to day 45 now and I just cant even begin to fathom that there might be an end in sight at some point, I'm just feeling very lost & scared right now. I'm scared for my girl and what all this means for her in the long term. I'm still grieving so much and miss her so dearly. Its been over two weeks since we had a cuddle and I just wish I could crawl into her crib and lay next to her beautiful tiny face and tell her how much I love her. And now that I've made myself cry I'm going to tuck myself into bed and see what the rest of the night holds. Good night all I'll update as the week progresses.
Thinking of you this week as you are strong for your tiny girl. that the drs and nurses caring for her are able to give her the very best of themselves and the treatment available so that she can fight the challenges that are before her. I hope you have some good news to cling to soon.
Oh honey I have been thinking about your little girl over the weekend, noticed you hadn't been posting and wishing that everything was OK. It sounds like a harrowing week for all of you but there is some good news there - she had a pretty settled weekend, she is showing she is still your little fighter, and hopefully she is over the worst with the NEC. All you can do is what you are doing, take it one day, one hour at a time as you need to. You are doing really well and if you need to curl up in a ball and cry then go for it. All of us here are in your little girl's corner cheering our hearts out for her to make a full recovery and be home with you soon.
Oh sweetheart my heart is in my mouth with every post I read. It is such an awful rollercoaster. If you ever need to talk to someone who has been in a similar situation pm me and I will phone you.
My prayers and positivity are being sent to you every day.
oh infinity that sounds like such a massive week and 45 days of hour to hour is long and i can only begin to imagine how tough so big big to you all xx
sending Heidi all our strength and hope and love for a speedy recovery and onward journey to home xx
Heidi had another bleed on her lung overnight. So we almost go through the weekend with no hiccups, but in the end it was not to be. I talked to the surgeon this morning and they are concerned enough about the blockage in her bowel that we're starting to plan for a scenario if surgery becomes necessary. She had some gastric dye administered this morning and they'll x-ray her at 12 midnight and 12noon tomorrow to see where things are being held up and hopefully shed some more light on what we're dealing with.
Inanna thank you for the offer to chat, I may well take you up on that one of these days. Right now I'm strugging to string more than a sentence together in real life, so I'll definitely PM you when I feel more able. Coming in here at least allows me to blurt things out without any pressure or feeling like I have to answer a barrage of questions. You would think nosy family memebrs would understand that I don't want to regurgitate every last detail and would stop pounding us with questions but apparently not. I know they care, I'm just having trouble staying sane right now.
Oh Infinity, I just read your previous post about Miss H being more settled and relaxed and just saw your most recent post about the bleed on Heidi's lung.
I have a lump in my throat reading each update on the ups and downs you and the family are going through, in addition to what Heidi is going through. I hope the x-ray's shed a bit of light on what is going on. She is such a fighter and I pray daily for her.
I will light that candle again for Heidi this evening in the hope it will 'bring some light' to the Doctors treating your little princess and provide a course of action to get Miss Heidi home.
I can imagine the dark tunnel you are facing at the moment, and I wish there was something I could do to brighten it for you, unfortunately only time may do this. Please do let me know if there is anything I can do. PLEASE!
Keep fighting little Heidi, get better so you can get some Mumma cuddles really soon!
Infinity, it is a tough, tough road. I think and pray for you and Heidi often. Heidi seems like such a fighter. 45 days on... she's still here, doing as well as can be expected. Sure there are always bumps in the road... but I hope you will have her home very soon.
Oh darl, thinking of you and your baby girl often, I'm just not on here much these days. PLEASE take Deb up on her offer to chat, it will help you more than your know, she is an angel xoxoxoxo
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xxoo
that the drs and nurses caring for her are able to give her the very best of themselves and the treatment available so that she can fight the challenges that are before her. I hope you have some good news to cling to soon.
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