Today is Lila's due date. It's crazy how you can look forward to a date for so long and then once you get there circumstances have changed so much. We are still in the NICU. Who would have ever thought that we would be here this long? Especially with no end in sight. It seems to be a balancing act with Miss Lila. If we take her off her oxygen then she stops eating as well. If she eats well then her oxygen levels go down. I keep waiting for that "light bulb" to go off that all the nurses keep talking about. They have done chest X rays and labs and everything is checking out normal, but it is hard for me not to jump to conclusions, that she may have some genetic disorder that they are not finding. This really has been the most trying experience of my life. I apologize to those of you who have called and I have not returned your calls, I fear you would not be able to understand me through all the sobs. I am trying so hard to be strong and not fall to pieces but I'm not doing the best job at that. This experience has brought a whole new perspective to my life. The only thing that truly matters in this life is the health and happiness of your loved ones. If you happen to be lucky enough to have strong and healthy children please don't take it for granted. I would do anything to get my little girl home and in good health.
Lila- if you read this when you are older, you should know how many people love you and pray for you and think about you constantly. You are my whole world now, you and your dad. I love you more than anything. Nothing matters as long as you are alright.
8 comments:
I hope that Lila will be able to come home soon, and that everything will be fine with her! I can't imagine how hard this is, but I know it will only make you a stronger person. I love you guys and hope you get good news soon!
oh kris, I ache for what you are having to go through. I wish so badly that I could be there for you in person. Please know that we are thinking of you and praying for your little family. Lila will get better, she has such a strong mom and she will be home soon. This will just be a memory. XOXO
Quinn and Kristi.
My heart aches that you guys are still there. It was hard for me to take my little one home and see you guys still there. I hope for the best and that she will be out of there. I know it is hard to look at it this way but there is a light at the end of this trying time. Keep your head up. Our prayers are with you.
It was good to get to know you while we both had baby girls in there.
Kirby Walker.
send me an email so I can add you to my blog.
klwsoftball13@yahoo.com
Love you three....
I am so sorry you guys are going through this. We are thinking of you and you are definitely in our prayers. Love you!
I thought I'd come check on you guys again. (oh and I used to live in the ward you do...so that is how we have a mutual friend). anywho.
Has your daughter been seen by an actual pediatric pulmonologist? Have they done a High Resolution CT Scan of her lungs? Have they checked for CF and surfactant disorders?
IMO that is where you should try and start pushing. It's not unreasonable after an aspiration to need to be in the NICU for a few days...but you've moved past that...and they need to be looking beyond the box now.
a xray is not really going to show damage to the lungs...which is why they need to do a HRCT scan...where they intubate and blow air into her lungs while taking the scan. They also should consider doing a bronchoscopy of her lungs while they are there (after the scan)...to see if anything sheds light that way.
If your needing any help with the lung stuff...my email is coriannes.mom@gmail.com...or ask Jenny Simmons to get in touch with me.
Sarah
This comment is for "coriwes". You may think that you are being helpful. But you are not. This blog is a place for Kristi to voice herself to her friends and to let them know what is happening. She does not need advice from someone who has an expertise in such a limited are. Do not confuse me. I am not belittling the knowledge that you have gained over the last three years with your son. However, you need to understand that I am a pediatric nurse with 10+ years of experience, and nothing is more frustrating than when people start tagging other people's children with diagnosis that apply their own kids. I am Kristi's sister. I have been in this process closely since day one. And even though this process has been very traumatic to Kristi, I can assure you that Lila is o.k. Which is what I tried to delicately to tell you last time you commented. Since you did not get the hint, I will say it more plain, please refrain from commenting again. Lila is OFF oxygen. She is eating. She was misdated in utero and was born a month early, not two weeks which was originally thought. So until you can fully understand everything that has to do with pediatrics please leave the care to the doctors who are trained in neonatology. - By the way, Lila's uncle and grandfather are also physicians and are also closely involved with her care. We are on top of things. - I am sorry to be so blunt, but it really is not helpful for you to put fears into my sister's head when her child is progressing normally. Thanks.
Yeah!! So excited to go to dinner with you tonight!
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