Yesterday sucked.
Today really, really, really sucked.
AND the best part of all, we are only just beginning. There will be many, many, many more really bad, truly awful days.
Kyle has been sick with Swine Flu since last Friday. This particular flu is not so bad unless you are Carolena. She hits all the high marks of being high risk of death from Swine Flu if she gets sick. She is less than 6 months old, she has an underlying condition with her congenital heart defects and she has no spleen which means her immune system is missing one of the vital organs in fighting the flu. Seriously.
Of course as Kyle gets better, Todd gets sick. Yesterday I got to pick him up from school for the first time in over 2 weeks. As soon as he gets in the car he sneezes. As I look back at him I can just see that he does not feel good. By the time we get home he is running a fever and admits that he feels a little sick. I am so over the flu.
Kevin and I both just went to get our flu shots. I figured while I was there I would triple my vaccination fun and get pneumonia and tdap as well. Yes. I am crazy like that. Just one of the joys of having no spleen. Apparently I should be taking a low dose of antibiotics as well (just like Carolena) but I do not. I guess I just like living on the edge.
So today begins with no sleep as Carolena had a rough night and I get to deal with all of it as Kevin is still sleeping outside in the scamp with Todd to keep him and his germs out of the house. Totally sucks. Then I get to feel like a truly terrible mother as Todd is dropped off at my sister in laws house because we just cannot risk Carolena getting sick. I am now kicking both of my older kiddos out of the house when they feel just awful and want nothing more than mom and their own bed. To top it all off, I take Carolena to the pediatrician for a follow-up appointment and learn that I am totally failing in my care of her. At now just over 2 weeks old she should be close to if not at her birth weight. Well, she is not even close. Even better, she has lost even more weight than when we took her to the doctor last week.
Weight is key when it comes to heart babies. If she is not gaining weight then there are all kinds of problems. Her heart could be failing. She could not be getting enough for her brain to develop correctly. And on and on and on. So even though she has been nursing every 2.5 hours it is not enough. She is not getting enough food. On top of everything else I now have to ramp up her feedings. I am at a very low place right now and I cannot even think how much worse this is going to get.
Occasionally I think it would almost be better if she were still in the hospital. At least then with it staring me right in the face I am not able to get any grand ideas about how normal she is. Carolena is not normal and she never will be.
The other day I prayed to God that I will accept whatever He has chosen for Carolena but please, please do not let her suffer. I think daily about losing her and it sucks. And with more confirmation making it real for me it sucks even worse. I am being humbled by this whole experience of having such a sick baby and do not think for one minute that Carolena is not a very sick little baby because she is. And this is something that I cannot let go. She is home for now but I do not know how long that will be. I still have not completed her nursery because the more I do the more attached I am to her. I am scared everyday and today truly sucked.
9 comments:
Sending you one heck of a germ-free hug...it sounds like you could use one.
Ashley, I cannot begin to imagine how exhausted and frustrated you feel right now. But what I do know is you have not failed Carolena! The antibodies and immunities that you have passed to her through breast milk will ultimately help her immensely. I wonder if she is having to work so hard to get it that she is expending too much energy and therefore not gaining? My friend had a baby with heart problems and she pumped and supplemented with breast milk in a bottle, so that Christopher could get nourishment without much exertion. Don't know if that will help, but wanted to pass it on.
I know that you and Kevin are having a hard time right now (understatment of the year, I know), but it will get better. Carolena couldn't have better parents in her corner and Kyle and Todd will be fine. I know your heart is torn between them, but even with a "normal" newborn, everyone has to take a temporary backseat to the baby. Prayers are still being sent heavenward for the lot of you. Know that we love you and wish we could be there to help. Sending you bigs {{{hugs}}} and much love across the miles.
I think "failure" is a very strong word. You, my dear sister, are not failing in your care of Carolena. You and Kevin - from the very start - have done everything in your power to give her the very best care. She will begin to gain weight. She is a strong baby, and you are a strong Mama. I know things are really rough right now...and that lack of sleep on top of the stress is taking its toll. Hang in there, sweetie. Yes, there will be many bad days; but, they will be fewer than the very good days. I love you. xo
I can only say a hearty amen to all that has been said before my comment. EVERYTHING looks more bleak when you are tired. You and Kevin are exhausted.....
I agree with your sister. Failure is a very harsh word when it comes to you and Kevin and Carolena. You have given her the chance to be, you found the best doctors, the best hospital and you are doing what needs to be done to make sure she is as protected as she can be. There is no failure there. I am and have been in awe of the strength you two have shown with dealing with the issues being thrown at you right and left. I love you all and will be there to help you out this weekend.
Yep. This day sucks. And, there will be other days like this.
I remember when Kate was a newborn and crying over EVERYTHING and bleak about EVERYTHING and sad about EVERYTHING. This to shall pass.
You have got to give yourself some credit. You are doing a great job - and when you look back on this you will know that you did the best you could with what you had. The boys will be ok - this is one illness of many but they will be ok. Carolena need you more. They may not understand, but they will.
I agree with Aunt Laura, that the antibodies given while nursing make up for everything else. My good friend from college has a heart baby, too (hers is not as severe but she has already had a heart cath and will have open heart surgery in late October) had trouble gaining weight too. Her heart is just working so hard it's burning calories. You aren't failing - she may just need more help with the calories...
Get any sleep you can. Things always look better after some sleep. Remember that you are post-partum, too! I love you and still pray for you every day!
Lots of hugs and prayers to you. You are doing the best job you can. I like the way you look at things. I know from my niece and friends how difficult it is to have a baby with the heary defect. But evry day is a new day and God will take care of her He has a plan for Carolena. Hang in there., I wish I lived close to help out. I feel you are family even though its been a while since I saw you. Love to all.
Ashley, Hi you don't know me but I was Kristi's roommate at Faulkner & she thought it would be a good idea if I send you a message. Our daughter, Emma, has congential heart defecta as well so I fell your pain. She has multiple VSD's (holes in her heart) + its levo-rotated (tilted to the left). She will be 10 months old tomorrow only weights approx 16.5 lbs. We have struggled with her feedings & weight her entire life + she is on a high calorie diet. Keep in mind their bodies are working a lot harder than the average baby (which I am sure you know) so that is why they lose weight or don't gain. Emma has had & continues to have those same struggles. She has had 1 surgery & is scheduled for another one Oct. 28 to repair her holes. Being a first time mom with a baby with heart defects is so hard but thankfully she is a very happy & active baby. If you ever need someone to talk, vent or cry with feel free to contact me. God will walk you through all of this as he has for us with Emma.
Most importantly I forgot to say that I hope your boys get well soon & your + your hubby stay well. I know what you mean about trying to keep the baby well. Flu & RSV season is a bear for the little ones with heart conditions. We are still waiting to take Emma in for her flu shot.
Ashley, being scared everyday is a hard way to live. My heart just aches for you. I know it is so very hard right now, with the boys getting the flu on top of everything else going on. I know you all are exhausted. And I know that everything always looks so much bleaker when you're that tired. I just don't even know what to say except that I called Pappi this morning and offered to fly down there and help in any way I can. I don't know what I could do, but I know I could help. I've already spoken with my boss and can get on a plane anytime you need me. All you have to do is let me know. I love you . Aunt J
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