The Ups and Downs of this week

Every week these days have these ups and downs, it's pretty crazy... but this week has had some good moments and some not as good moments and I thought I'd share them with you :)

My biggest bummer moment this week is that I found out that my favourite doctor is being transferred to the general pediatric ward so he won't be our NICU go-to guy any more! I loved this doctor because he was a bit more "Western" in his "style of doctoring" (if that makes any sense). He was born and raised in the UK (although he is Chinese), so he seems to understand where I'm coming from better than most of the other doctors because he's practiced in the UK - he actually just moved to Hong Kong a few months ago. Although maybe there are good things about him moving to general ward - I usually talk most to him because he's the easiest to talk to, but he is more junior so he can't make any big decisions. With him gone, I'll probably talk directly to the doctor in charge - and then maybe that will actually yield more results, I don't know. 

One "crazy" thing that's going on right now is that we just decided to enroll Lana into preschool. The first month, she will be attending three mornings a week, and I will accompany her to the school. This will hopefully get her used to going. Then starting in November after she turns two, she will be going five afternoons a week, unaccompanied. I know that she will love it - and this is something that I've been thinking about doing for a while but put it off with all the pregnancy concerns, planning to look more into it when Maddy came home from hospital. But with Lana's 2nd birthday coming up next month, and with Maddy being in NICU indefinitely, I thought we should start actually doing something about it. So we start next Monday - wish me luck! I'm going to be really busy for those four weeks. It will be "easier" for me after November because Lana will be at school the same time that I'm at the hospital, if Maddy's still there. 

There's actually a lot of stuff going on at the moment. We've got two birthday parties over the next two Saturdays, and also one of Bernard's best friends is getting married on the 10th, and Bernard, Lana and I are all in the wedding party. October is going to be a crazy month!! And I've still got to fit in pumping as well as daily trips up to NICU in between everything else.

One thing that is bothering me a bit about Maddy is that her "ear bubbles" are now hardened - I'm a bit frustrated because the hospital did not manage the cysts the way that we were advised, leaving the bandages off them for a lot of the time - and I'm a bit worried about how her ears will heal. Other DD parents - once they start to harden, will the remaining lump decrease in size, or is it like that for life? Can massaging the lumps decrease the size? Is there anything that can be done at this stage? We spoke with the hospital over and over about the issues but they did what they thought was best rather than what we specifically asked them to do. And since we weren't about to remove Maddy from the hospital and we couldn't physically be there to manage her ears the way we thought they should be managed, our hands were tied.

One of the best things of the week happened today - I've been asking the doctors at the hospital a few times to consult with a DD specialist somewhere. I even provided them with a couple of contacts. Yesterday, I asked them whether they had consulted with anyone and the doctor said that they emailed one guy but he never replied. Bernard's been telling me for a while that I should just get in touch with one of them myself - and so today, I did. I decided to find the email for the professor who runs the Skeletal Dysplasia clinic at Westmead Children's Hospital (where we will take Maddy when we move back to Australia). He has a lot of experience in this area and is probably one of the most, if not THE most, respected doctor in this area in Australia. Plus with there being an actual Skeletal Dysplasia clinic, all the doctors there collaborate together regularly on the issues involved in these kinds of conditions (kind of like those rare multidiscipline meetings that the doctors have set up for Maddy).

So anyway - I emailed him an outline about Maddy's situation and asked whether he would be able to consult with the doctors, and whether we would be able to bring Maddy to him when we visit Australia. I told him we planned on bringing Maddy there when we move back, and it may be helpful both for the doctors there and the doctors here to be able to collaborate a little. He replied to me within a few hours - and not only is he willing to help, but he will also be in Hong Kong in the first week of December and would like to see Maddy then!!! I forwarded the emails onto our doctors and they plan to consult with him. I am so glad to be able to start to get a bit of a second opinion - even if at the moment it's from a distance. Maybe this will help to get that ball rolling again a bit...

It's been so frustrating the past few weeks, we're pretty much just waiting for Maddy to get bigger and stronger so that she will get these tests done - and so from day to day, Maddy's condition is exactly the same. It's a bit frustrating that nothing is being done day to day - I want to see results, and this feels like a case of "a watched kettle never boils"! It can be so draining - but every now and then something happens and reminds me that this is not forever :) And we can make it through this time.

Today also, I received one of the sweetest, most thoughtful gifts that I've ever been given. I went to visit one of the girls from my bible study group, and all the girls had put together a "In need of... box" for me! It's a box with seven different bags inside, each with a different label. There's one which is "In need of encouragement from friend", another one which is "In need of a good laugh" and so on. I'm meant to take a bag with me in the cab when I'm going to the hospital on days when I'm feeling down, or when I'm feeling in need of that particular thing. I had to resist the urge to open them all at once, but I think it will be better to savour them one by one. It reminds me a bit of "PS I Love You", where the husband wrote all these letters for his wife to be delivered to lift her up after he passed away. It made me cry!! And now probably seven different cab drivers are all going to experience my tears on the way up to the hospital on different days over the next couple of weeks ;) It was so thoughtful though and I feel so blessed :) :) Thank God for good friends who know the right things to say and do to encourage me and give me that little "pick-me-up" that I need :) :)

My Firstborn

When I was pregnant with Lana, I never kept a journal or anything like that. When she was born, I didn't write down the dates that she first smiled or when she started walking. I thought briefly about starting a blog back then to let family and friends back in Australia know how we were doing - but there was nothing "different" about us then. Bernard and I had already been married for three years, so having children was a natural progression. People get married and have babies all the time, and I figured there wasn't anything interesting enough about us having a baby that would make people (other than our immediate family) want to read about it. 

Even now, when I blog, 95% of the time I'm talking about Maddy and her medical issues, or my thoughts on the social issues that she will face, or my thoughts/feelings throughout a kind of pregnancy that most women will never experience - the kind that no one thinks they will have to go through, and everyone hopes that they won't have to go through. 

I don't blog about Maddy because she is my entire life - I blog about Maddy because she is "different" to the norm. I am aware that most people know next to nothing about the kinds of issues that she is facing and will face during her lifetime - and I hope that me writing about them will help other people to be able to relate to her, or that it will be able to help other people who are going through similar struggles. 

All that said, I wanted to talk about Lana for a bit. I blogged about her before in this post - and that seems like such an eternity ago now! At this age, they grow up so fast. The first year of their lives seems to be mostly physical development - and once they start walking, they start learning so so soooo fast that it's hard to keep track of! There was a time when I could count the number of words that Lana could say - now, I wouldn't even know how to estimate. It'd probably be 500 or so - with more new words every single day. 

Lana's still a ray of sunshine in our lives - she sings nearly 24 hours a day, all kinds of songs - from The Wiggles, to nursery rhymes, to songs that they sing on Playschool - even a few church songs. Then she makes up songs, or changes the words of them. Instead of singing "I will worship, I will worship, worship Jesus", I've heard her sing "Macaroni, Macaroni, Macaroni Jesus", or "I will worship, I will worship, worship (fill in random person's name here)". Instead of "Celebrate this happy day, Celebrate let me hear you say", she sometimes sings "Watermelon this happy day, Watermelon let me hear you say". I don't know the rationale behind everything that she sings, but it always makes me smile to hear her cheerful little voice singing at the top of her lungs. 

When I'm pumping (which is six times a day, for 15-20 min each time, so quite a lot if you add it all up!!), Lana loves to jump on our bed and we'll sing together, both of us belting out "THAT'S ELMO'S WORLD!!!" Then when I'm finished pumping, she'll scramble to try and grab the pump and sit in my spot so that she can "pump" too. 

I think Lana's pretty smart - although I know I'm probably a bit biased. But at only 23 months, she knows her alphabet and can recognise at least 5-10 of the letters, she can count to 10 and count some objects one by one (although she often will either miss some, or count others twice), she knows most of her colours and shapes, and she talks in full sentences already using words like "I", "me", "you" instead of always saying "Lana", "Mummy" or "Daddy". And most of that, she's been doing for months already (although the pronouns is a more recent development).

I know that having Maddy in the hospital has been difficult on Lana too. The hardest thing for her is that I'm leaving her every day so I can go to the hospital. There are days where she says to me "No hospital today Mummy, Mummy come to the park!!" - that's the kind of thing that we used to do in the afternoons before Maddy was born. She knows that Maddy is her sister and she knows that Maddy is in the hospital. We've talked about how Maddy is going to come home to live with us, but I think it might still be a bit of a shock to the system at first - I know that Lana will adjust to it though...

I know that there are going to be things that will be difficult for Lana because of Maddy's condition. Already, people always ask me how Maddy is doing. A bit less frequently is how Bernard and I are doing, and least of all is how Lana is doing. It can't be easy being a sibling of a child with special needs - and I don't want Lana to ever feel like she is less important, or that her needs are less important than her sister's. And just because I don't write about her as much as I write about Maddy doesn't mean that I don't care about her as much.

I wrote in March that I was glad that she was already in our lives before our difficult pregnancy - and I am so glad that she can still make us smile and help our lives at home these days to be filled with joy and laughter. I think that the whole NICU journey would be a much darker time without her around to have fun with at home. Our home these days is still a happy place, filled with more smiles and laughter than stress and tears - thanks to Lana. 

I'm so blessed because of our first born. I love you, Lana Joy!!

Chris Errera

I recently came across this story of a composer/pianist with Diastrophic Dysplasia (the same as Maddy). There is a 7 minute video which I found very uplifting. And I love how he plays piano better than me, with my long, slender "piano fingers", 10 years of training and 20 years of experience. 

I was moved to tears when his Dad was talking about the emotional time of Chris's birth. I can relate to those feelings - even though a lot of it was still unsaid.

I love how Chris said "Don't pity me. I'm doing just fine. I've lived a life that I'm very proud of, and I'm happy... If I feel sorry about myself, then people are only going to know how to feel sorry for me. It's life. I'm in the game... I don't want them when they look at me to see the disability, I want them to look at me and see the ability. The ability of what I have. The things I can bring to society. How I can be an actual player in society that benefits people... And that's my job. And that's what I feel is my gift."

I wish all of that for Maddy - the strength of character and the ability for her to find that area in which she can excel and impact people in the unlikeliest of ways.

I've been realising that people who are born with things like this have both a blessing and a curse - it is a blessing because people who are "different" are memorable. People will notice Maddy. People will watch her and give her more attention just because she's not what they expect to see. On one hand, that's an amazing opportunity as well as a difficult struggle. It's an opportunity because she will have peoples' full attention, and if she can capture it, it will be able to open doors for her that may not have existed if she were "just like everyone else". However I also know that Maddy won't be able to have "off days" where she can slip under the radar and go do her groceries without being stared at, talked about or approached about her differences. I know that all that attention can also be intrusive and even cruel at times. But I also know that it is what you make of it. And here's praying that like Chris, she'll learn how to make lemonade :)

Check out Chris's homepage here - he has more videos of his songs there.

When Sisters Meet

I mentioned in my last post that I was thinking of asking the doctors whether Lana and Maddy would be able to meet, but I wasn't particularly optimistic knowing how strict the hospital system is over here. Well yesterday when I was at the hospital, my favourite doctor was there and he was quite chatty, so I figured I'd ask him - and he asked the nurses, and they set it up so that Lana could meet Maddy today!! It's technically not really "allowed" so they had to move Maddy to an isolation room around the back, and they set up all her monitors over there, and then Lana had to use the back entrance - but for the first time in Maddy's life, our family was all together :) 

Lana was very gentle with Maddy and seemed quite fascinated by her, and Maddy had big grins for Lana too. I'm so happy that they were able to spend some time together - even though it wasn't for particularly long. I'm looking forward to watching them grow up together and play together in the years to come :) 

Moving towards Acceptance

I've been thinking and writing a lot lately about my desire for Maddy to come home from hospital - but after a lot of discussion with practically every NICU pediatrician, I realise that it's not going to happen in the near future. And I think that it's a lot "healthier" for me to come to accept it (at least in part, even if I still disagree in principle) than to fight it so much. I don't want to be so stressed and upset about it that it hinders my ability to be a good mum to both my girls.

Anyway, I've been thinking - maybe I need to try other ways to get what I want... I'm not going to change the hospital system here, as much as I think it's pretty horrible. I'm not going to be able to magically extend the visiting hours, or the people who are allowed in and the people who are not allowed in. So I need to be a bit creative...

One thing that I REALLY want is for Lana to be able to meet Maddy - maybe I will ask the doctors if I would be able to take Maddy out into the waiting area so she can meet her sister. I know that they are pretty likely to say no, but I also know that there's not really any medical reason why she couldn't - and I can always ask at least... (and I think I know which one is the softest, so I'll ask him!!)

Another thing that I am a bit afraid of is that Maddy will have trouble bonding with us after she is released, particularly if she is there for another few months. Yes, she sees me every day but only really for about 1-2 hours. Bernard can't get up there every day because if he did, he'd never see Lana as he'd be getting home after her bedtime. One thing that we are planning on doing is making some audio clips of us reading stories, maybe try to get Lana to sing a few songs or something like that, and then the hospital can play them when we're not there. 

Maddy already has two toys up there that we will bring home with her - hopefully she will notice and when she does come home, she won't feel "out of place"... 

Maddy's NICU stay isn't like a premie's NICU stay, even though that both are often around 3 months long. For a premie, they are still so busy still developing that they don't do much interacting and responding etc (I guess - I've never had a premie, I've just observed the other babies around Maddy...) - but Maddy really needs that stimulation. She loves looking around and responding to things - I don't know if she recognises faces yet, but she definitely will while she is in there. When we visit her, I try to spend most of that time holding her and talking to her, and I love that I can now bath her, even though I still feel pretty clumsy (for Lana, we had a bath which had this kind of hammock in it so we didn't have to hold her so awkwardly, she could lay half in the water supported by the hammock thing. Wet babies are so slippery!!) We need to bring up some books to read to her - we haven't done that yet, but we've talked about it.

Anyway - I want to find creative ways of helping her to know that we're her family... any suggestions? Please leave a comment or email me!!

I'm not that inspiring...

I've been getting a lot of emails and messages from friends and strangers, people I know, people I knew years ago but haven't stayed in touch with. And a lot of people have told me how inspiring we are.

I don't really get that because I don't think we're inspiring at all. I feel tired, worn down, emotional. I have days where I'm used to the whole routine of the NICU thing - but I have days where I just hate our current situation and wish there was something I could do to change things. I'm constantly frustrated at the hospital. If we could somehow go back in time and change things in our past, I would have done just about anything so that Maddy could have been born in Australia rather than here in Hong Kong - but she wasn't and so we're pretty much stuck here and can't do anything about it. 

Today was a pretty bad day for me - I had my 6 week postpartum check up at 11am at the hospital. I know these appointments always take forever and I expected to be there for around 1.5 or 2 hours. So yesterday I arranged with the nurse to go and see Maddy at 1pm and give her a bath. Visiting hours don't start until 3pm but they agreed to let me since I was already going to be at the hospital. As well as the postpartum appointment, today was the day scheduled for the multidisciplinary meeting about whether Maddy would have the MRI tomorrow or not - Bernard and I were "uninvited" from it (the doctor yesterday told us that they only had 30 minutes so they didn't want us there asking too many questions because they needed to be very punctual) - but we were anxious to find out what the next step would be.

Well the postpartum check up was in itself a bit draining - the doctor was talking to me about Maddy and I was explaining my frustration at her being in hospital, pretty much just in case there is an emergency. In other countries, Maddy probably would have been allowed to go home with some in-home nursing, an oxygen tank just in case and an oxygen monitor. I was asking the doctor whether Hong Kong has in-home nursing at all, and pretty much it doesn't provide that option - it is possible to get nurses to come, but it's extremely expensive. So already I know that if we want Maddy to come home, we either need to do all that ourselves (probably needing someone to be with her 24 hours a day in case her O2 stats go down), or we'll need to pay for the in-home support ourselves.

I got to the NICU about ten minutes late (my appointment went later than I expected) and the nurses wouldn't let me in - they said that they were too busy and that they'd already bathed Maddy so I couldn't bath her anyway. Even though I'd already arranged it the previous day, they wouldn't let me in. And the nurse who told me I couldn't come in was the same one who said yesterday that I could! I was so upset that I just walked away in the middle of talking to her. I hate how strict the visiting hours are and how they won't let me see my own daughter if it's not convenient for them!!

I decided that rather than sitting around for two hours at the hospital doing nothing, I might as well go home. I decided instead to go and see Maddy with Bernard after he got off work (it meant going to the hospital twice today, but it was better than sitting by myself in Starbucks for two hours!!) I was expecting the doctors to call and see where we were as I was meant to discuss the results of the meeting with them. I saw one of the doctors this morning and told him I'd be around in the NICU between 1 and 2 and that we could discuss it then. When they didn't call looking for us, I told Bernard "I bet they've cancelled the MRI". 

Sure enough, we get to the hospital and the doctor told us they have cancelled the MRI (the one that took two weeks to book).  Basically, they don't want to risk the bronchoscopy as long as Maddy is stable - they want to leave it as long as possible, and so they don't see the point in doing an MRI now since the orthopedic doctors say that even if they can confirm that the cervical spine is stable enough for the bronchoscopy now, they can't say that it will still be stable in one months time. The irony of it is that if Maddy were not so stable, they would need to take action and do something now - but because she's stable, they are willing and happy to leave it. 

Also when we were at the hospital today, Maddy's oxygen levels weren't so good. They're meant to be above 95% ideally but tonight they dropped down below 80. It's the first time I've seen them so low since she was a week old or so - and they put her on oxygen (which helped her stats go right back to normal again) and ordered another x-ray to check if her lungs were ok. Maybe it's a little reminder that as much as I don't like it, Maddy is better off there than at home at the moment. 

So all in all, it wasn't the greatest day today. I'm so tired of all of this - and the end isn't even in sight. I feel like I'm barely juggling NICU and still being a good mum to Lana. I don't know how I'm going to manage another who knows how many more months of this (although I know that I have to, one way or another)... And I don't know what's so inspiring about all that.

Two new firsts :)

Today when I visited Maddy, we had two more "firsts".

Today was the first time that she was DEFINITELY smiling :) :) For the past week or so, there have been some times where I thought "Was that a smile, or was it just gas?" but today she was really smiling and responding to me talking to her. It was soooo sweet - I wish I had my camera or video. I know it's really hard to catch those first smiles on film though (why do we still say "film" when everything's digital now?) - I remember that from when Lana was the same age... but it was so precious that it brought tears to my eyes :)

The other "first" was slightly less charming - when I was about to bath Maddy, half way between her bed and getting her in the bath, she peed all over me! Now I'm feeling a bit more like a "normal Mum" than a "NICU mum". It's a good feeling to have :)

Firsts

I've slowed down a bit with my blogging because not much is happening at the moment! Maddy still has an MRI scheduled for next week Wednesday to assess the stability of her neck, but the doctors are not even 100% sure if they will go ahead with that. The MRI will include a bit of movement of the neck and they are not sure whether that movement may press on the narrow airway and block it. The pediatrician is setting up another multidiscipline meeting, most likely on Tuesday (the day before the scheduled MRI) to discuss whether that is the best next step. It's been really difficult for him to schedule because at the meeting, there will be something like five doctors who are all the heads of their departments (pediatrics, ENT, anesthetist, pulmonologist and orthopedics, I think). Because Maddy's case is complicated, they need all of the best doctors in their fields working on her. We are meant to be meeting with all of those doctors next Tuesday to discuss what we will do from here. I'm hoping that the meeting will provide us with a bit more of an understanding as to how long Maddy will need to be in hospital, and what steps will need to be taken in order for her to be able to come home safely...

We found out last week that Maddy is actually the FIRST case of Diastrophic Dysplasia ever in Hong Kong! I guess because the mutation is much more rare in Chinese populations, that's probably why there hasn't been a case here before now - and it took my Western genes and Bernard's weird mutation (another first there) for it to happen. What are the odds? We should start buying lotto tickets!! 

Part of Maddy's condition means that she has these cysts on her ears - it happens in most cases of DD within the first month or so of life. It seems like it's pretty painful and uncomfortable, the doctors and nurses have been applying compression bandages to them (the standard way to treat them so that they heal well), but Maddy doesn't like the bandage being changed, or anything touching her ears for that matter. The doctors have found that the bandages that they were using were causing some pressure sores on her ears, as well as slightly elongating Maddy's head because the skull of an infant is still not fused and pressure can move the bones around a bit. They've been experimenting with other ways of compressing the cysts without causing Maddy as much discomfort and they are currently using this clip kind of thing which only applies the pressure directly to the ear without pressing on the rest of the head. Here's a picture of Maddy's ear cyst on her right ear. She's had this for a couple of weeks now...  

In other firsts, the nurses asked me the other day whether I would like to start giving Maddy her daily bath - so I've been bathing her for the past couple of days! It's so nice to be able to be involved a bit more in the practical aspects of caring for Maddy. Here are some pictures of Maddy's bath time :)

And one last picture of Maddy in her bed,

Fun with Grandma

Bernard's mum was recently in Hong Kong and she visited with Maddy last weekend. She was only the 4th person other than doctors and nurses etc to meet Maddy because of the strict visiting rules at the hospitals here in Hong Kong. Here are some pics of their time together.

You can see from the pictures that they're trying to give Maddy a more stimulating environment now that she's getting older. She has a little seat that she can sit in so she's not just laying in the bed all day - she can be a bit more upright as well, and also she has a funny little mobile that they set up for her. She's actually quite fascinated by it and loves to stare at the hanging toys :)

One Month

I don't have a lot to say today but just wanted to write and say

Happy One Month Birthday Maddy!!

Maddy celebrated by meeting her paternal grandmother. One of the "benefits" of being in NICU for a month or more is that grandparents are now allowed to visit her. Maddy only has one grandparent living in Hong Kong (Bernard's dad) - but Bernard's mum is visiting at the moment so they were able to meet and spend a bit of time together today :) The visiting hours for grandparents are even more strict than the visiting hours for parents so Bernard's dad is planning to meet Maddy next weekend. 

This past month has been completely crazy - but I'm glad that our little girl is here and that she's safe and getting stronger in the hospital. I wish more than anything that she was able to be home with us - but I'm just thankful that she's here... 

How can I help?

I found this great link yesterday when I was looking up random NICU information. I agree nearly 100% with it so I thought I'd post it over here too... It's mostly specifically about premature babies (as probably 90% of NICU babies are there because of prematurity - that's my estimate from my limited experience in NICU anyway). But whatever reason a baby is in NICU, I think the principles below generally hold pretty true.

from http://www.prematurity.org/baby/preemie-baby-helping.html

1. Don't judge the parent's reactions. There is no right or wrong way to deal with a premature birth.

2. Don't compare the baby's needs to those of a full-term baby OR to other preemies.

3. Don't just say "Call me if you need something." Do something! You can provide dinners, do yard work, go grocery shopping, offer to drive them to the hospital, and/or clean their house.

4. Be available when parents ask for help. If we ask for help, that means we needed it a long time ago.

5. Don't discuss the possibility of death or severe complications unless the parents initiate it.

6. Be inconvenienced. Helping someone should not always be bound by our comfort zones and busy schedules.

7. Buy appropriate gifts for the family, such as disposable cameras, calling cards, rolls of quarters, snacks, magazines, photo albums, journals, scrapbooks, and gift cards.

8. Support and praise a mother who is pumping breast milk during the baby's hospitalization. If is very difficult to maintain a milk supply when the baby is unable to nurse directly from the breast.

9. Baby-sit free of charge if the parents have older children. You can do this so parents can visit the hospital together or go out on a date.

10. When asking about the baby's progress, always listen carefully to the parent's response. Then, the next time you speak with them, refer back to the last thing they told you.

11. Offer encouragement during setbacks and gently remind parents of previous obstacles the baby has overcome.

12. Don't ask "when is she coming home?" The parents want the baby to come home too, but there are no quick fixes in the NICU. Besides, they will let everyone know when the time finally comes!

13. Don't be fooled by smiling faces. Just because the parents are smiling doesn't mean everything is going well.

14. Don't offer too much unsolicited advice.

15. Show interest in the baby and the parents throughout the hospitalization and after the baby has been home a while.

16. Make sincere compliments about the baby whenever you're visiting the hospital or looking at photos.

17. Don't compare their experience with someone else's hospitalization.

18. Offer a hug when the parents are expressing grief.

19. Avoid discussing disappointing news or concerns within hearing distance of older siblings. The older children are suffering as well.

20. Nicely recommend that counseling be sought when parents show signs of losing control.

Not going to happen...

I talked to the doctors today about the possibility of bringing Maddy home first and bringing her for the hospital as an outpatient for the MRI/bronchoscopy but they said it wasn't safe to bring her home. Even though she's been stable for the past few weeks already, because her trachea is so narrow, it would be very easy for it to become blocked. If it did become blocked for whatever reason (eg, a common cold could be dangerous for Maddy), they may need to take emergency action such as giving Maddy an emergency tracheostomy. 

The good thing about the CT scan is that now we know exactly where the narrowing is, and we know that the rest of her airways down into her lungs look ok - so if Maddy DID have to have a tracheostomy, it would completely bypass the problem area and hence (hopefully) solve the entire problem. However I'd prefer if we could avoid that altogether!! I guess that's one thing I can remind myself of - that if her being kept in hospital as a precaution prevents her from needing a tracheostomy, maybe that's a good thing. And it's definitely a good thing that they know what to do if Maddy's small trachea does happen to become blocked for any reason...

I've got mixed emotions about the whole thing. I am happy to know that Maddy is there for some kind of "medical" reason beyond just waiting for the tests - but I'm still frustrated at how long everything is taking. They booked the MRI for September 15th, two weeks away. And that's not even going to assess her airway (the main problem area) at all. So we've got a long wait to have any kinds of answers about what we're doing next. 

The doctors are going to have another meeting with the ENT and orthopedic doctors next week to discuss whether this approach (MRI and then bronchoscopy after that) is the best for Maddy - and given their past track record, I wouldn't be surprised if they end up changing it up again!

I really don't relish the thought of Maddy being in hospital for two months or longer, all up - but like I said in my previous post, I need to do what's best for her, not what's best for me... and I know that even though it doesn't always seem like it, the doctors aren't my enemies who are playing a tug-of-war with me over my daughter. They want the same thing that I do, and that is for Maddy to be completely healthy :)

CT scan results

Last Tuesday, Maddy had her CT scan. There were two purposes to it, a) to check the stability of the cervical spine, and b) to assess the airways to see if there was any narrowing. 

We got the results back today and a) the stability of the cervical spine was inconclusive from this test, and b) the CT scan showed some narrowing of the airways at the larynx (voicebox area). 

The main concern at the moment is Maddy's airways. Although she's doing great at the moment, breathing independently (she has been for weeks now), and her O2 stats are always very good (I haven't seen them lower than 95 or so for weeks), the narrowest part of the airway is about 1.9mm instead of the normal 3.5-4mm. The doctor explained to me today that this narrowing would make it very easy for something like a simple cold to be a serious problem for Maddy, and also if she were to get a bit of milk or something in her airways, it would be very easy for this narrowing to become blocked. So as a result, oral feeding is probably out for a while at least.

Because of the results, the doctors want to go ahead with the bronchoscopy which will give a better image of the airways than the CT scan, however they still will not do it unless the orthopedic doctor clears the cervical spine first. And the orthopedic doctors will not clear the cervical spine just based on the CT scan, so the next step is to do an MRI.

The MRI is a bit more risky than the CT scan. It takes a longer period of time and so it will require a heavier sedation, and also as a part of the MRI they will maneuver Maddy's neck to be able to get images of her neck in different positions.

The MRI will be done in a week or two, and then IF that clears the cervical spine, the bronchoscopy will be done a week or two after that. (If it doesn't clear the cervical spine, I don't know what the plan is then...) Then based on what they find in the bronchoscopy, we'll see what we need to do from there. But in any case, it still looks like it will probably be at least another 3-4 weeks from now... 

I'm getting more and more frustrated and down about the whole situation. It just seems like with each step that they take, the end seems further and further away. And Maddy is just there waiting for the tests, not attached to any machines, doing seemingly so well. When she was born, I knew that she would need to go to NICU but I was expecting it to be for maybe around two weeks. It has now been a month already, and it's looking like it will probably be at least another month... I think I would be happier about it all if I could see an obvious "reason" for Maddy being in there, but the only reason she's there is to get these tests done, and also because I don't know how to replace a feeding tube and she can't feed orally... 

I want to try to talk with the doctors and see if it would be possible to bring Maddy home first and then to bring her back to the hospital as an outpatient for the tests. I've already asked that question before though and they weren't very receptive to it then... I might try again though and see what the doctor says this time. I'm just getting so worn down by all this... but I do want what's best for Maddy, not just what is best for me...