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Dying inside....

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Christine Mary:
hi to all.

it has been,what seems to be forever since ive posted on here. please know that i did not abandon you. i have started working again and been very busy.

Today we were told by lauryns hemo. that she needs to start transfusing. Her tx appt is for april 2nd. please believe me that even though she looks good, I knew something was going to go wrong at the drs appt. i was very anxious, and tense.(this was before the dr even saw her). i was paranoid and very irritable. i just knew something was not right. after the dr assessed her, he came back in and simply stated,"this is the time where we need to start talking about transfusing". My heart fell 50 ft into the ground. i was too in shock at first to cry. (i noticed my husband across the room,was trying his hardest to fight the tears from pouring out.)
Lauryns hgb fell from a 9.1 to a 8.3 in 3 weeks. her spleen is enlarged to 2 cm, and her blood pressure is lower than normal.
her coloring is ok, and her eyes are fairly white. but she is slowly showing signs of hemolysis.i dont know what to do?
i am so selfish. we have had the gift of seven months w/o transfusions, and now i am angry? why am i so shocked? did i really think this day wasnt going to come? am i in denial? is this normal? all the thal parents who read this(and any parent really for that matter),will understand when i say that  my heart is broken into a trillion pieces. the love of my life will soon begin her journey of all the things i feared most.
the dr wants us to consult with a pediatric surgeon for the port! i refused.i think of all the thals ive spoken to, who have managed w/o one. why is my baby the exception? is it that simple? not as the parent its not! then he mentioned a picc line. then he said it will really hurt lauryn if we dont "make it easier". easier for who?! the nurses or my child?!!! he said i might not have much of a choice. I felt like shaking him and saying, how bout we take YOUR kid and cut her open and put a foreign object in HER heart?!
please help me! i am so lost, and desperate for strength. i am losing all faith and i need to be strong for lauryn.
i dont know why i am being so negative and short. it is not directed to anyone in particular by any means...can you help me find the courage to accept reality, and help me with the decisions we need to make???
like the title of the post states.... I am dying inside. I dont know where to turn....

Sharmin:
Hi Christine,

I know what you are feeling.  This is a difficult time without having anyone pressure you to do something you are uncomfortable with.  Our dr. encouraged us to not use a port etc.  Our son fussed in the early years while getting his IV, but after the age of 2 he was fine.

I know that this is not what you wanted.  To some extent us parents, even when we know that certain things are inevitable, we wish that miraculously things will be different in our children's case.  I just want you to know that I know how you feel and I hope that you feel better soon.  Your daughter will be fine, I promise.  I hope and pray that there will be a cure soon for all of our kids.  In the meantime, take care of your little one and yourself.  Our miracle will come.

Sharmin :hugfriend :hugfriend :hugfriend

Danielle:
Christine, I wish I knew what to say to make things easier.  My parents are still in denial until this day, and I'm 30 years old.  My mother is always crying about my illness and constantly worrying about me, but then she also blocks a lot of stuff.  My father is completely in denial.  He doesn't talk about it, never sat there with me when I was getting transfused, except for briefly when I was little.  He still refuses to believe that I am sick. I don't think my mom was able to block everything like my dad because she was always the one by my side through everything, and still is.    :dunno

I don't think it ever really goes away or gets better for a parent.  What you have to keep saying to yourself is that there is nothing you can do about Lauryn having Thalassemia and it's not your fault. It's not like you wanted to give it to her. All you need to do now is love her, support her, and give her all the care that she needs.  If she gets her transfusions and does what she has to, she will live a long life.  Just keep in mind that these transfusions are going to keep her here with you.  You had given birth to her for a reason.  Lauryn is supposed to be here.  I know that it's going to be hard watching her go through all this, but it's going to help her.  You guys will be ok.   :hugfriend

We are always here if you need to talk, vent, or whatever you need.  We know what you are dealing with in some way, shape or form.  It's perfectly normal for a parent to be in denial.  It's a coping mechanism.  :sadyup

Even though the port would lessen the amount of needle sticks, I don't think it's necessary.  It has the potential to cause more worries than you already have, and it's not worth dealing with.  You have to worry about infections, clots, heart issues from the catheter being very close to it.  I just don't think it's worth it.   :sadnope  That's only opinion, though.

Please stay strong.  Lauryn needs her mama here with her, and needs you to be a fighter along with her.   :hug

Bostonian_04:
Hi Christine,

DO not feel sad. I know very well what you are going through right now ... we were at this juncture five months back ... in September, and our baby was only 2 months old at that time.

Over the last 5 months she has had a number of transfusions ..... initially it was once every two weeks and then once every three weeks and now, hopefully she is stabilizing at transfusions once every four weeks. Every time she goes in for the transfusion, it breaks our heart. But we steel ourselves with the thought that it is for her own well being. So, for Lauryn, both you and your husband have to be strong. Take it one day at a time and once you go through the first transfusion, I am sure you will be able to handle the future transfusions as a much stronger person that what you are now.

As regards the requirement of port, my daughter did not have to get one till now. I would like to thank the nurse at Children's Boston for that. He takes extreme care when he is inserting the IV in order to minimize the pain that our daughter may have to endure.

I may have mentioned it one of my earlier posts, make sure that the nurse who is inserting the IV takes all her time to locate Lauryn's vein and does not rush the job. Also, ask her to warm up the area where she is planning to insert the IV. It seems it helps in increasing the blood flow in that area, which in turn makes it easy to access the veins to insert the IV. Also, make sure that Lauryn is well hydrated the morning of the transfusion as that too helps to make the veins easily accessible.

I may not be able to alleviate all your concerns and your apprehensions about the impending transfusion, but I will surely take the time to share my experiences and thoughts with you. Please let me know if you need to know anything else and if I know I will surely try to help.

Love to Lauryn ...

Take care and be strong.

Bostonian

Courtenay1826:
 :( Oh, Christine, sweetie...I know its hard to have a little one who is sick - albeit not thal major - but seeing them stuck with IVs and blood sticks and all that stuff is really heartbreaking.  It does get easier, tho...with time.  Like many people have said, with age comes patience and acceptance, with some parents...but mostly the patient.  It got easier for me with age - all the blood draws, etc.  I hope you find solace that because my Mom was with me the entire way, it made it so much easier, as I am sure you will with Lauryn.  God bless you and yours...

Courtenay

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