F/U Lilith and Tracheostomy (Long)

JoJoGee

Hi Ladies,

First, I just want to say that I can't express how much your kind thoughts and words have meant to my husband and I as we have been on this crazy journey.  Thank you all so much.

Now for the update: On Monday March 28 Lilith began a regiment of steroids and anti-inflamatories in anticipation of Monday April 4, when she would be scoped and taken off of the vent.  When I arrived at the NICU Monday, April 4 I find out that Lilith has pulled out her ventilator tube.  They put the tube back in her airway for the scope.  The neonatologist notes that there is still a lot of swelling in her air.  The scope later on in the day confirms this.  The ENT tells us that it is worth trying to extubate one more time but he thinks she will fail and we are headed for a Tracheostomy.  Because of her self-extubation earlier in the day they waited until Tuesday to take her off the ventilator.

Fast-forward to Tuesday.  They decide to try Lilith on the cpap instead of the cannuals.  When the nurses use the stethescope to listen to her chest and airway they don't hear any stridor - this is a first.  For an hour and a half, there is no stridor.  She breaths easy and is hardly agitated.  The absolute best moment of the past several weeks - I hear my daughter cry for the first time.  I leave to pump. When I return she has developed a little bit of stridor.  It isn't very audible, but you can hear it when she is agitated.  The nurse listens with the stethescope and tells me that her stridor is very mild.  I go to lunch.  When I return from lunch, Lily is upset.  She can't be calmed down.  I suggest that I hold her because that normally calms her.  She calms down for a little bit.  The ENT visits and is pleasantly surprised at how Lily is doing.  By this time, we are all thinking, this just might work.  But, Lily becomes more and more agitated.  The position of the cpap mask makes it very hard for Lily to stay comfortable for very long when I hold her.  After an hour and half of me trying to calm her we put her back in the isolette and the respiratory therapist suggests that we switch to the nasal cannuals... perhaps it is the head gear and mask that is agitating Lily so.  After switching to the nasal cannuals Lily finally goes to sleep, but you can still hear the stridor, and it is loud.  So loud, it sets off the noise indicator each time she breaths.  I go to pump.  When I return from pumping, the doctors and nurses have decided to re-intubate her.  It's late, 6:00, the attending ENT is off duty.  The on-call ENT doesn't know when they will do the Tracheostomy... sometime Friday he thinks.

Finally, today we learned that the Tracheostomy will be Friday.  We still don't have a time.  I don't quite know how I am feeling about all of it.  All I could think about yesterday when they were preparing to re-intubate was that this would be the last time I would hear Lilith cry for at least a year.  Going into yesterday I thought I was ready for the tracheostomy, I was looking at the extubation as just a formality.  But, then I heard her cry, for the first and last time... and I lost it.  I'm not as sad as I was yesterday, but I am still sad.  I've been preparing myself for a Tracheostomy for several weeks, so I wouldn't say I am as scared as I was, but I am still a bit scared.  But, I know a trach means that we are one step closer to home, so I am also strangely happy in a way.

I know people have gone through worse in their life and with their child.  So, I feel a bit weird being upset and posting (I feel like a bit of a drama queen).  But I thought I would give you all an update and let you know how we are doing.

JLPT830

Oh my goodness....please don't ever feel like you are a drama queen.  I can't even begin to imagine what it would be like to be in your shoes and I greatly admire your strength.  Your daughter is a lucky girl to have you!  I am so sorry that you are faced with this, but that's good that it will be a step closer to you getting home.  I will keep praying for you and Lilith and your family.  ((HUGS))

ETA: spelling errors

CincyBride08

I agree with the pp. You are not a drama queen! You are going through a lot right now and you are certainly allowed to feel the way you do! Stay strong. You're daughter is an amazing fighter and it sounds like she gets it from her Momma. I'll definitely be keeping you in my thoughts and prayers.

Mommy2Max

First of all, you are not being a drama queen.  You are a mother who is concerned about your child and you are looking for the support that you need to get through this.  Trust me, I have been there.  Please don't ever feel that Lily's complications are minor to someone elses, because to you, they are severe and upsetting.  Never feel bad for coming on here to post.  We look forward to your updates and we pray for your entire family that things will start looking up for Lily. 

Secondly, I am sorry that you have to go down the scary and unknown world of the trach.  I remember hearing Max's cry for the first time after he was extubated and it broke my heart but yet it made my heart happy at the same time.  Hold onto that sound.  I have seen and heard little ones still talk and cry with a trach.  She's not going to know any different, so you never know what she may surprise you with.  The day she is able to laugh, talk and cry will be so much more sweet to you and your husband.  It gives you something to look forward to and to give you strength to continue down this journey. 

I am praying for you guys.  Please keep us posted on how her surgery goes on Friday.  Max and I will be at the hospital on Wednesday (the 13th). If you need anything, please don't hesitate to ask. 

Chin up mama. 

teacherjess

You are NOT a drama queen. This is the kind of thing that can emotionally drain a person, and you are being incredibly brave. Your story about hearing Lilith cry brought tears to my eyes. I am so sorry that this is happening, but hopefully the trach means that she will be home sooner and can be with you 24/7 sooner rather than later. Please keep us updated on her progress as I know we're all wondering how she has been doing. Stay strong and keep doing what you're doing. I think it's wonderful that you are able to spend so much time with her, but make sure that you are making time for yourself to rest and come to terms with things-- maybe take some time in between pumping and get a massage, if you can? I think the stress on NICU moms has to be overwhelming. Hang in there.

KYMelissa06

I'm so sorry.  I've been thinking about you since I saw you yesterday (yes that was me, but you probably didn't realize it).  I'm praying for you and your family.  <<hugs>>

JoJoGee

Melissa, where would I have "seen" you.  I'm curious.

Moesten

What an emotional journey you're on! My thoughts and prayers go out to you. I hope your darling girl's procedure is uncomplicated and that she is on the mend soon. Be strong, Mama. 

cat81305

Thoughts and prayers are with you, Lilith, and your family!!  I am so sorry you are going through this!  Take care of yourself!

Denise2005

Ditto to Mommy2Max and others.

You are NOT being a drama queen in the slightest bit!  I know how sweet it is to hear their first cry, moan, anything, weeks after they have been born.  I love how Mommy2Max put it as it is that much sweeter and makes you appreciate it a lot more. 

I just graduated nursing school - went back after my sons NICU stay - and although being intubated might seem less invasive the trach is so much more comfortable and better for the patient.  I'm sure you know all of this but just hoping it provides you some comfort. 

If definitely sounded like you were on a rollercoaster ride that day.  Thoughts and prayers for Lilith and your family.

PirateGirl04

T and P for you and Lilith!

RFKD82909

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Miller238

You are definitely not a drama queen.  You are going through something that is very emotional and draining on a person.  Your story brings tears to my eyes.  You are so strong and your little Lilith is so lucky to have you as a mother who is there for her always, is exhausting herself pumping, and who loves her unconditionally.  Thoughts and prayers are with you tomorrow.

allobosc

Big Hugs!  You are in my T&Ps tomorrow.  I admire how strong you are too, not a drama queen at all.

awinning

I'm a bit late but wanted to say you all are in my thoughts and prayers. I agree with pp, you are not a drama queen at all. Keep your chin up and know that we're all here for you.

 

mag2point0

I'll be thinking of both of you!

curlypie1

I wish I could give you a huge hug. I can't imagine how you feel. I hope in time, you'll be able to overcome some of the sadness and frustration you are feeling. I hope and pray for all the best for Lilith's care and health and for your family. I'm thinking of you.

megntom07

Thank you for the update! We will continue to keep you all in our T&P! Lillith is so lucky to have you as her mommy!

tpo1118

I'm sorry to hear this. Big Hugs 

gandcnky

I'm late to this so hopefully you'll see it.  Don't worry about what other people have been through and how you should react based on this.  This is your "worst" right now, so you have every right to be upset!  I hope the procedure and the following days go smoothly for you.  I know how emotional it is to see your baby struggle and to have to try to hold everything together, so you are definitely in my thoughts and prayers.  I hope you can get off of this roller coaster and onto smoother ground very soon!

doodlebug914

Please do not feel like a drama queen!  Thank you for taking the time to update us.  I can't imagine how frustrating this is and the emotional rollercoaster you have been on.  Thoughts and prayers for you and your family.