Synchronization of Us

This will be short but sweet, its late and we need to be up early tomorrow (DH starts his PhD so will be dropping me off at the hospital before he starts at 8 . )

Today has been nothing but positive news, we are a little worried about getting to excited as it seems for every good day there is another bad. BUT for the moment she is doing really well, her hemoglobin levels have stabilized so a blood transfusion is looking unlikely now. Her urine is a lovely sunshine yellow (and yes i kept looking at the bag of urine today with a smile on my face, bet that will never happen again in my lifetime lol )
The EEG results look normal and if appears the immune/blood cells issue is “sorting itself out” - they think it was a reaction to the medication she was on. They have stopped some stuff and played around with amounts and so far she is seeming happy with it.

We are not out of the woods but for the moment she is doing great and on the mend. She was taken of the vec (the paralyzing drug) again and was interacting with us today. She can answer some basic yes/no questions and there is nothing better than holding her hand and having her squeeze back.

I let alot of stuff get to me yesterday. The ICU Rebecca is in is a horrible place to be, its not like the one she was in as a newborn (it was a smaller room with 4 other beds all newborns and preemies) . This is a big room (at least 20 babies/toddlers i would say) and these kids are all seriously ill. Alot like us in away as not so long ago there child seemed healthy and happy and then out of the blue it all went wrong.
Yesterday i found out one of the babies had died the night before, just that day i had been talking to his family. Another one of the babies whose family we will talk to had taken a big step back in her recovery (she was finally taken of the ventilator and able to breath by herself before stopping to breath again) . Everywhere you turn there is a family grieving, mothers crying over there children and it just brings the cold ,hard facts to light. Loss of a child is a much to common things in those walls and i was terrified my daughter would become one of them.

Today im much more optimistic, with the good news and getting to see /interact with her again . Also seen another little girl moved from the ICU to a ward (while her mother cried with happiness behind her) made me realize that success stories are much more likely here. Rebecca is in the best possible place she could be , she is just making sure that everyone is kept busy and noone forgets about her.

I just don’t have it in me today, right from the get go i could not face getting out of bed . I wanted to snuggle up under the covers and pretend none of this is real. I just could not face going to the hospital and facing another day of bad news.

I did go though ,in the end Rebecca is my girl and im not going to stay away . The need to kiss her and breath in her sent was just to strong.

“CT Scans, Brain bleeds, EEG’s , Fits , Blood Transfusions, Erratic Blood Pressure and Heartbeat, Immune Issues , Red Blood Cells, Anemia ” . All words used in conjunction with Rebecca today.

Its not been an easy day, they thought she may have been fitting during the night so arranged the CT scans to see if anything was wrong - thankfully everything there came back great, no sign of any damage or bleeds or that she was fitting before. They also done the EEG but we don’t have the results for that yet.
The scan of her kidneys came back normal, the blood in her urine is thankfully clearing up nicely.
Of course the issues don’t end there, they think there is something about her blood. Im not great at remembering everything but its something to do with the red blood cells being attacked . She is now anemic and will more than likely need a blood transfusion soon as her hemoglobin levels keep dropping . Again this could be something to do with the Pneumonia or may be separate issue altogether . The doctors themselves are not to sure , she keeps throwing curve balls at as all and they have declared her a “mystery”

I have been feeling in a pretty dark place today, i can no longer be cheery and happy and don’t want to be around anyone. I just don’t have the energy to put on a brave face and pretend everything is going to be fine.
I know noone would expect me to, but i do. I don’t want to scare and worry people and if the mother seems happy then things cannot be that bad can they? In reality Rebecca is one sick little girl and each day im getting more and more frightened . I can no longer stop my mind from wandering to that forbidden place . Each day something new is being discovered and what if her body cannot take it anymore ? What if its all part of a much bigger problem?

No one has gave the slightest indication that she will not make it through all this , and both DH and i avoid asking . Everyone seems hopeful and optimistic but today i just can not feel this way. Im just down right terrified , i cannot imagine life without my little girl and we all need her back .
Im hoping tomorrow we will receive nothing but good news and we can start looking at the situation positively again.

At last the surgery is over with, and Rebecca is doing well.

Its been a crazy ,long day though. Surgery was scheduled for 2pm - so when the hospital phone around 7.30 saying that it had been moved and would more than likely be in the morning instead (offering no guarantee, it could still be afternoon) our house broke into chaos.
Ever tried to get yourself, your one year old and your hubby dressed (and fed in mine and Eilidhs case) and out the house in record time? . We had to drop Eilidh off at my mums and thankfully made it to the hospital just after 9.

Rebecca was awfully awake when we arrived, because she was on nil by mouth her oral sedative had been stopped letting her come to a little more. We don’t think she was in pain but definetly uncomfortable (more from the wires and how she was lying ) , if daddy took so much as a step away from her she would panic. (Yes even semi unconscious she is still a daddies girl) . Just before eleven she was taken away….

Surprisingly the time passed relatively quickly, by 3 o’clock she was back in the ICU and by 3.30 we got to see her again. Her ventilator had been moved from her mouth to nose and some wires changed about but for the most part not much had changed. The cuts on her chest and neck looked horrible and so bright against her pale skin , all to used to these things been bandaged up and hidden straight away. She is back on the paralyzing drug for the night at least but will come off that tomorrow.
Dr K was happy with her though, it went well and couldn’t of gone much better. Although he did admit that the real results could not be seen till next week when we took the ventilator out.

All good isn’t it, yes that part has been a dream and could not of gone better . Finally out of the woods with nothing left to worry about . HA HA when is it ever that easy for Rebecca

Not long after she returned we took a walk to make some phone calls, family members were waiting eagerly to here how she was doing . We returned to some not so good news, she had a dirty nappy while we were gone. The poo was very watery but more worryingly full of blood. Wanting to try and isolate the issue (is it the poo or pee) they put a catheter in .
They could tell straight away that it was an issue, her pee was bright red and worrying to them all. So on top of everything we are looking at a possible kidney issue. It could be one of a few things but its more than likely a “side effect” of the pneumonia , one of these things that happens according to the Renal doctor.
This may or may not be something to worry about, the doctor seemed optimistic and that given a couple of days it should clear up on its own. By the time we left her urine was already looking less bloody. We need to wait for the blood tests to come back and for a u/s scan to be done on her kidneys tomorrow. They are keeping her fluids down (to not work her kidneys to hard) and checking her hemoglobin levels carefully - if they fall to much she will need a blood transfusion.

Yet again its been a day full of ups and downs , the blood in urine shocked us all and i couldn’t help but cry as i curled up as close to Rebecca as i could get . No child deserves to be ill i know that, but i still keep thinking why her? Why now?
This was suppose to be such a wonderful week, DH was off work and the house was to be fully decorated (instead of barely done) . These last few days before he starts his PhD were meant to be family time. We had so many plans and Rebecca could not wait to get all that daddy time.
Everything is so confusing right now, i miss Rebecca so much it hurts but i also spend so much time missing Eilidh. She is left all day every day and while she seems to be loving it i hate being away from my baby so much . What i want is my family back, me and my two girls hanging together not spending a moment apart.

Guess what happens tomorrow? No its not Rebecca coming home but going with the “best news we could get thats based in reality” it is great. She is having her surgery tomorrow at 2 o’clock.

Why is this so great, well for one her Pneumonia is cleared and she is over that and even better its another step closer to her coming home. There is a big difference between Friday (when we thought she would be having the surgery) and Tuesday - it means i will be able to hold her 4 days earlier and even better she will be home 4 days earlier. If all goes well (which please pray it does, she has been through way more than she deserves already) she could be home in as little at 2 weeks on Wednesday.

So yes we are all excited and happier than we have felt all week. At the moment we feel like nothing is happening, just playing the waiting game. Once her surgery is done she will be on the way to recovery.

If anyone is interested the surgery is called a Laryngotracheoplasty . Im not sure that everything there is 100% but it sounds pretty close to what the surgeon has described he is doing. Although thankfully a Trach is not involved in our case.
And for those who have asked for the password, i will email soon . Im just not spending anytime on the computer and have not replied to any email in days.

And in this case no news is good news, got to give her another bath today and wash her hair . She is opening her eyes more and for a few moments got to “connect” with her.
The feeling of missing her has not stopped though, i have no idea just why its so strong at the moment but everything makes me think of her. Even now i hate being on the computer as on a normal night i would be worrying about waking her with my typing.

I have a couple of pictures im going to post, i have chosen to password protect the post. I cannot explain just why i am going to do it, i guess i feel that Rebecca is just so vulnerable in the pictures and i just cannot bare strangers looking at her.
If you have the password from before its the same, if you don’t please just comment here or email me. I have no problems sharing its not to keep YOU from seeing them . Even if i have never heard from you before aslong as you have a blog/webpage i can check out then i will happily share.

These i have decided are *very* tough. After 3 years of Rebecca being right there and getting me up on her schedule being allowed to come to on my own is not a privilege.
I wake up in the bed which is suddenly much to big and my heart just sinks. I miss her smiles and laughter and the annoying way she would be up and bouncing before i had even came to.

Rebecca was always crazy in the mornings, we would come through the living room and she would pretty much demand control of the TV. I know given in is not the greatest thing i could of done but it was an easy decision - after all she would watch her shows and we would snuggle on the couch together (where i could normally catch a few more moments sleep) . Of course Rebecca would not just sit and snuggle, instead getting up and playing (you could guarantee the naked dance at some point) and munching her way through the fruit bowl (i would be trying to sleep which getting apples shoved in my face telling me to peel) .

Eilidh would join us and the fighting would begin, “My turn” is a very popular phrase around here. Whose turn was it to watch the tv? Sit beside mummy? Put the teabag in my tea? . When making morning toast Rebecca would sit on the floor with her toast and butter and just had to do it all herself - how i miss those silly giggles as she and Eilidh helped themselves to samples of butter when i turned my back.

I miss the thousand bowls of cheerios she demanded, i miss the way she would only get dressed when SHE decided it was time - then spin around and around so i could see how pretty she was (although a good part of the time she was dressed back to front or inside out) . I miss when Eilidh went down for her morning nap and how bossy she would become again - demanding what seemed like her own body weight in food .

Overall i just miss her, Rebecca was not a loud child in the way she spoke but her presence was deafening. I know she will come home, im aware of how lucky we are compared to thousands of other families . For the moment though it doesnt help, i just want her here and with us.

One more down and god knows how many left. Although the end of each day is a good thing because it is only bringing us closer to the “prize” .

Its been a positive day, i say positive as in we received no more bad news . She is holding up well and no longer struggling with temperatures and all the nasty dirty gunk in her tube. All signs that the pneumonia is clearing up .
We spoke with Dr K and he seems happy if regretful for us , its not the most common of conditions and this type of reaction is even less so. I know they are doing the best for her though and trust him 100% . He will see us again next week and will reschedule for then, it depends on when he can get the theater space - we are thinking Friday although he did seem to imply it would be before that - just don’t want to be disappointed if its not.

I got to do her care today which helps alot, just playing mum i guess. Got to give her a (sponge) bath and brush and style her pretty hair plus change a few nappies . All the stuff you do day in and day out that takes a magical quality in situations like these.
Feeling pretty upbeat tonight, im sure the next few weeks are going to be a roller coaster of emotions but for tonight im just thinking of how wonderful it will feel when she is home.

Tomorrow im not going to spend much time at the hospital and feel guilty for it , DH is going to go in early and spend the morning with her. Eilidh and i will again take some mummy and daughter time, just hang around the house and maybe go for a nice long walk. I will go through with my parents when they go and visit (my dad has been on holiday so none of them have seen her yet) , although Eilidh and Courtney cannot go in im sure the lovely play area will keep them more than happy.
As hard as it sounds both Craig and i will return home early and have dinner with Eilidh, i know it will be heartbreaking just being the three of us BUT i think a bit of normal will do all of us some good. It means apart from maybe 2 hours im not going to be away from Eilidh all day .

This is the latest development in the drama that is our lives just now. Can my poor girl not catch a break?

High temperatures and a whole lot of chest gunk lead to some blood cultures being done on Rebecca, the diagnosis was Pneumonia . Think she picked it up as her throat has been so narrow and swollen and nothing could really escape.
A course of antibiotics should clear it up fine but the surgery can not be done till its gone. So we are looking at about a week or so before that.

If Rebecca is home before the end of next month we will be surprised She is going to be ok though, in the end she will be fine and well and im sure we will soon forget how horrible this has all been and be back to normal.

They did wake her up a little today, if its going to be a week they don’t want her completely paralyzed. She is still sedated and drugged but can move a little .Honestly it is a relief ,when paralyzed she just seemed an empty shell , nothing of my little girl was there. Now she moves and responds to your voice and actions, you hold her hand and her fingers move. Hopefully when the swelling around her eyes goes down she will be able to open them and we can stare into those big brown ones of hers.

Im doing ok over everything , i spent an amazing morning with Eilidh. She got up and she, DH and i spent the morning playing and enjoying each other. I then took her to the local children’s zoo and park (the weather is of course lovely here just now) and we spent an hour and a half together indulging in some much needed Mother and daughter time. That was a breath of fresh air , i think made me realize we will all get through this and it will not be long (in the grand scheme of things) till Becca is home and joining us on these outings.

Before i go i just wanted to thank each and every one of you for your lovely words, they all mean the world to us and knowing we have so many people all over the world thinking about Rebecca is such a comfort

It seems we are in this for the long haul. Im not sure what i was expecting today but it honestly was not what we were told.
What i wanted to hear was Rebecca is fine, tomorrow we will be taken her off the vent and she will be home the day after. Yip you guessed it i was living in a dream world.

Whats really going to happen is Friday morning she will be taken for surgery, they are going to attempt a reconstruction of her vocal cords - its the same surgery she had done as a baby. They will be taken some cartilage from her ribs and using them to hold the vocal cords apart (this will be done through her throat ) . We are unsure how long it will be afterwards before she gets home, we are expecting at least 10 mores days on the ventilator after surgery then at least a few days recovery after that.

Looking at the very least 2 weeks but more like 3 before she is home. For the moment she is settled and doing well, on a cocktail of drugs keeping her from feeling pain and moving. The vent is doing all the work for her , her body has to do nothing but recover .

I am a bit of an emotional mess, the thought of not being able to hold her for such a long time is just heartbreaking. I just want to scoop her up in my arms and hold her, i want to be smothering her with kisses and having her melt into me like she was doing just two days ago. I even want the bad parts - i want to be fighting with her, getting frustrated and annoyed at how she is acting . I just want her home and well. Im not going to be whole again till she is with me.
Of course we also have Eilidh to consider, Rebecca needs us but so does she. Im so grateful for my family and there babysitting help , we just need to find the balance of spending time with Rebecca and not neglecting Eilidh . Tonight as hard as it was we left the hospital around 5.30 so we could get home in time to bath her and put her to bed (i think both Craig and i just needed to be around our youngest for a short while) .
Tomorrow we will not go in till almost lunch time and spend the morning with her , Eilidh needs to know that she is still a priority to us and very much loved. Ideally we would take turns going in and staying home but with my not able to drive its almost impossible - i would have no way to get through and we cannot afford for Craig to be making the journey twice. We have asked about temporary housing near the hospital but doubt we will qualify as technically we live to close .

It was *so* much easier when we only had the one child, we could spend all the time we needed with Rebecca without worrying about going home. I really do appreciate all your kind words and will try and keep the blog updated as much as possible, but for now im going to take a long hot bath and not look at the empty bed behind me.