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Monday, April 16, 2012

Hello Sunshine!!

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Just thought I'd post early today since Little Miss is napping!

She had physical, occupational, and speech therapy today! She will continue with it every day! YAY! 
I'm jumping for joy with all the progress baby girl is making!!

Today she stood with help.

She colored a beautiful picture !

She drank from a straw. She choked, it seems to go down the wrong pipe. Her speech therapist added thickener to the water. It still caused her to cough a wee bit. 
Later today they are going to try again while watching with an ultra sound. This way they can see exactly where the water is going and if she is just perhaps still not healed enough to be drinking.

Foot notes from mommy: Kinda negative but I need to vent a little and then move on...
When I walked in to Ivy's room this morning she was sitting in vomit...  Her little shirt was off and she was sitting up by herself in her bed and the sheets were soiled with formula and her face was crusty white and her chest and neck and hair full of crusted white stuff.

I asked the nurse if she had thrown up and she said no.... 
It was very dry... and her little shirt was soaking in a bucket of water on the sink. With white formula all over it?
The respiratory therapist came in a few minutes later. Have I shared how much I love all the RT's here??? I have had 6 until today, our new one today makes 7. Every one of them is MY FAVORITE!!!! And Ivy is sooo sweet to them which is not normal because kids do not like to get EZ paps and be suctioned through a tube down your nose. So they have very deep sweet spots for Little Ivy who nods her head yes when they ask if they can give her a treatment. 

Anyway, the RT asked me if Ivy had thrown up any more? Thrown up??? I told her that the nurse said she didn't know anything about it? RT said she had thrown up at 4 am so they did not do her 5 am EZ pap. The nurses meet and talk for a good 30 minutes before they change shifts. It was all in the notes she left her as well. In fact she read it from the other nurses notes during rounds. So my guess is that it happened again and the new nurse never noticed it. She just wasn't checking on her so she missed it. What makes me sad is that it was completely dry! The bed and everything. The stuff in her hair and on her body, completely dry. When the RT spoke with her about the episode from 4am she said she vaguely remembers it now? So RT tells me that her night nurse bathed her, changed her sheets and requested that they come back later for her EZpap so she could recover.  Todays nurse also did not remember to call for Ivy's diuretic. She was taken off the lasix drip and put on every 8 hours and then has one other. She was supposed to call the pharmacy about the other but she forgot :(
Ivy has not peed since 6pm yesterday. 18 hours!!

So while I was on my soap box I asked if someone could please rewire my baby's nose!! It is bleeding because they have her feeding tube lifted so high and her poor nostril is being cut and stretched by it. And this cannula?? Hello? This is an adult size cannula on her! The RT told me not to worry, she would do it all for me, not to even wait for the nurse. (we have had this nurse 3 times now :) She is very experienced... been nursing a really long time... and she has lost her love for it :(
It's very obvious when she talks to the nurses about her other patient, using potty talk to describe how mad the child gets when they change her lines and such. She made my niece cry last week, my niece was with Ivy while I was out of the room and she told my niece that she didn't need to stay in the room, that the baby would be better off if she left :( Ya, she's really not a sweetie, bummer!! But we try shower her with sweetness in hopes that she is reminded of how rewarding and fun it is to be a nurse at a children's hospital. She is, after all a huge part of these kids life right now. 
Any way, ~my favorite~ Respiratory Therapist got Ivy a newborn cannula (PERFECT FIT), moved the feeding tube to the other nostril and taped things so that her nostril and is not being hurt in any way! I feel so much better now!!! See, I'm human... I complained today. 
Now back to my awesome little champ who happens to have been moved in to a crib because she is getting stronger every day and might just jump out of that big bed they had her in. I much prefer the bed... I can't get in her crib. But her nurse said even though we are always here, the second someone takes their eyes off her she would be climbing out of her bed... lol

Thankful for this day!! That Bryan or I are able to be here every day! That God is with her every second and he is SHINING!!!!!!!!!!!

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sierrasmom said...

OOOOh that would have made me mad too!! It brings out the Mama bear in us!! It does this family's hearts so good to see Ivy Joy looking so wonderful!! I fi nd my self anxiously waiting for the next update. Thank you for keeping us posted!!!

Sharon Ankerich said...

Sorry you have things to vent about BUT SO thankful you know you can tell us. :) Glad little Sunshine is having such a great day!!! Blessings to you all! XOXO

Anonymous said...

Good for you for speaking up for Ivy.....Gyll, Grandmother to Ryleigh (XinYi)

DiJo said...

I will try to not say anything about the nurse who has lost her love for her job.... However, I do think it is ok for you to request that she NEVER be Ivy's nurse again! You can do that in a loving way with her Supervisor!!

Secondly, whoever made you that gorgeous hospital gown for Ivy should start selling them. It is so precious on her! All Children's Hospitals should have them as an upgrade option! :) She looks so beautiful in these pics! I am smiling about the crib, because remember I did have a child who tried to launch herself out of her bed! Such a great post!!!! And, big hugs to the sweet RT who has made Ivy comfortable today!!!!

I look forward to more great news soon!


Heather N said...

I would be so M-A-D at that nurse. Poor baby girl!!!

Still praying.

the meaklims said...

You are human and yes you should be mad about that incident. You are so modest.

So thankful Ivy is doing wonderful. My daughter prays daily for your daughter, and I love that she's even starting to sing the song on your blog now. :) "Loved you for a thousand years..." That tells you how often I visit it!

reading and praying.

dawn said...

Ok so maybe I am not as sweet as your other readers. Maybe I have spent too many months being the advocate for patients but it IS NOT all right. IT just isn't.

This is your baby and she has gone through so much already in her short little life and this should not be happening. You don't have to be rude and nasty ( you would never be that way anyway) but you DO have to bring this to someones attention.

So thankful for the wonderful RT.

Yay Ivy you are amazing little one, truly amazing.

Paige said...

I'm so sorry, makes me sad too. when my past husband was in rehab we had alot of different things happen and I came away from that understanding that some people need to change careers, they just don't realize how hurtful it can be to those watching a loved one suffer. Praying for a sweeter nurse tomorrow:) Thank heavens for your RT!!
So very thankful Ivy is improving daily!!!!

Nicole said...

I wish her progressive healing. Peace!

Leslie Desjadon said...

Oh, hang in there! Dealing with burnt out nurses is so hard. When my son was having his first cleft repair surgery at 5 months old, the nurse allowed his pain meds from surgery to lapse because she would have to go get them and only gave them to him after they ran out to the point where he was screaming bloody murder. When she finally decided to medicate him she actually said to me that, that she guessed she better to it before he ripped his face open because she didn't want to clean that mess.....Sad but true. So, really hang your doing a great job! I'm a future mom to my waiting China boy and I've been following Ivy's journey....praying for her everyday!

One Happy Mama said...

Mary ... Little Ivy Joy is such and answer to prayers. My girls and I pray for her daily! She looks so alert - I see that spunk in her eye!!

K said...

How great that Ivy is finally recovering. Please make a formal complaint on the nurse. Her lapse with the diuretic could cause the death of a child and no one should be left to dry in their own vomit! Don't worry that she'll take it out on your daughter. In fact, I encourage you to let the nurse supervisor know that you no longer wish for this nurse to care for your daughter. The supervisor should be very glad that you care enough to take the time to let her know what happened since it all comes down on her head if something goes wrong.

Please don't hesitate to vent on your own blog, especially about this kind of thing since it educates others whose children will face the same things.

Angie - Kentucky said...

What an amazing journey to watch. Ivy has touched and blessed more people than she will ever know and because of her and you and your openess so many will forever be changed. I can't wait to see what GOD has in his plans for her! The SKY will be the limit for that special girl! Prayers going up for everyone!

nancy said...

Little Ivy Joy and your family are in my prayers each day. She seems like she is getting so much stronger as time goes on. What a precious baby, Our Dear Lord is truly watching over her. Blessings.

andrea said...

i've been following your blog....i've been a neonatal open heart nurse for 30 years....i am angry that your sweet angel had to sleep in throw up....your right the nurse has LOST her love for the BEST job in the world....good for you for posting this and getting it off your chest ;)
our daughter emma lael (adopted sept. 2010) was born with tetrology of fallot, she's had two open heart surgeries and will have 2-3 more. she is 4.5 years are amazing and even after all these years of having the pleasure of caring for heart babies i continue to be in Awwww how great they recover and do post operative.

praying for a quick recovery and a sweet home coming.

god bless you guys

Mary and John said...

Ivy looks FABULOUS!!! Made me smile when I saw her face. Then your post made me very sad. As others have posted, PLEASE speak to the PICU supervisor AND ask for this nurse to NEVER care for sweet Ivy again. You are quite justified to do this and this nurse needs to be "written up" .. I'm an RN and I would have no qualms doing so. As for Ivy's swallowing issues: our Juls had swallowing issues after each of her open heart surgeries - the nerve that controls one side of the throat/vocal chords/swallowing muscles also runs right down past the heart - it can become inflamed or, worse case, permanently damaged. Juls used thickened fluids after both surgeries and regained her ability to swallow in weeks, for one, and months, for the other. Continuing to pray for Ivy and praise God for her progress! :)

John & Michelle said...

I'm not a violent person, BUT, if I lived near where you are that nurse would regreat leaving Ivy sitting in a mess like that!

If she has "lost her love of nursing" she needs to not be there!

Still praying in Athens, AL

jen gallagher said...

Mary, I am SO SO happy for you and for beautiful Ivy! Have been praying so hard for her, and I just cried to see her so alert and happy and WELL!!

As for that nurse, GRRRRRR! I cannot imagine the heart that isn't moved by dealing with such special little kids!! How sad for her, really!

Continued prayers for little Ivy Joy from the clan in NY!!


Luciana said...

Vent away girl. You are always so positive and sweet even when you're venting. I'm glad sweet baby girl is being well taken care of by the therapists. And that she has her wonderful family looking after her and showering her with love every moment she is there.

Luciana said...

Oh, and Ivy still has the sweetest, bubbliest, chunkiest, sweetest, chubby cheeks ever and I wish I could squeeze them (gently).

Sonnie said...

You have every right to vent. Just vent away, that is what we are all here for. We pray for you daily for strength and comfort. Just the best thing to check to see how sweet Ivy is doing and see her sitting up in bed and looking wonderful. So glad the therapist is there for you.

The Harlicka Family said...

Oh Mary, you are such a better person than I...God Bless you! :) That nurse would not have liked me one bit, that's for sure! No one should be working with children, especially under the circumstances in a children's hospital, that aren't loving, kind and sweet, no matter what their experience! :( I'm so thankful Ivy has had so many other wonderful nurses and RT's that obviously really love these sweet kids and what they do and are made to be there!!! :) We will pray you do not get that nurse again and continue to pray for Ivy's steady recovery! Big hugs and kisses for Ivy Joy from Atlanta!

Paige said...

Those eyes. Oh my, those eyes. They are now filled with what looks like peace and contentment. It is like having watched Jesus breath life right back into her compared to some of the early post op days. Ditto what some other posters have said~there is nothing wrong with asking that nurse not be assigned to Ivy again. If you don't desire to file a formal complaint, you can definitely make an official request that she not be left to care for your angel. One day you will have to post video so we can hear her sweet voice and laughter.

Bebe said...

I work in hospital administration; I beg you to report the nurse. She is a danger to your child & others if her attitude is not right. You have every right to monitor those caring for your child and to advocate on Ivy's behalf for what is best for her. So glad to see her improving.

ashley said...

We continue to pray for Ivy! She looks so beautiful! My heart broke for her, and you, reading about that sweet baby not being tended to properly. I am so sorry about that, and I pray she does not ever have to have that nurse again.
Continued prayers for Ivy Joy! We love her so!

Annie said...

Oh joy is the Lord to keep coming back to your page and see these photos of Ivy sitting up and with color in her face!! My heart sings!

I totally understand this frustration. When Katie Grace's nose tube was offset and pushing up so hard on her nostril for a couple days, I kept trying to push it down and re-tape it myself, knowing it was causing her great discomfort as her nostril was getting so red and irritated. I finally got RT to change it and we both felt better. We had one particular nurse who was a bit short with her answers and like you said, a little older and maybe lost her joy, but our others were fantastic!

Lee and Sarah VanGrunsven said...

Everytime I see her eyes open, I want to jump up and down with excitment!!!
I'm so sorry Mary, I would be incredibly angry and frustrated as well. Someone mentioned reporting the nurse. I'm not normally someone who escalates things to management, but in this case I definitly would! Poor Ms. Ivy:(
Continued prayers!! Love, Sarah

Blessed to be MeiLeigh's Mom :) said...

How wonderful your sweet baby girl is looking in today's pictures!! What an awesome God we serve... Prayers continue for you all!!

Gale said...

You are such a wonderful mama...and do not feel anything but pride in the way you stood up for your baby. You are speaking for one who cannot...standing in the gap for your baby girl! She looks so good!!!

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