I have watched my daughter go through so much. As a mother I hurt for her, I cry with her and I wish so badly that I could trade places with her. The list is long and growing of procedures and things that she has gone through.
She was born at 25wks 1lb 6oz and dropped down to 1lb 2oz
At birth her body was badly deformed
Her right lung collapsed and she had a chest tube put in
She had little to no fluid in the womb and has pulmonary hypertension along with other lung issues.
She was on life support- a jet ventilator for several months which caused a deep groove in the top of her mouth causing eating difficulties.
She had several blood transfusions
She was on the cpap breathing device for several weeks
She was on oxygen and heart monitors until Dec 2011
She had surgery twice for gtube placements because she can't eat by mouth
She had her feet and legs casted due to vertical talus in both feet
She has been through rounds of rsv shots and many xrays and ct scans
She has struggled developmentally both with learning and motor skills
I watched her struggle with tummy time, crawling and sitting
She was diagnosed with acid reflux and frequently projectile vomits full feedings
She had ROP in both eyes and had to go through several exams for that
She had jaundice after she was born and spent weeks under lamps
There were many sick days and several close calls
Many doctors said she'd never make it, many nicu nurses thought she wouldn't also
She has multiple joint contractures causing her joints to be too tight her left leg is severe and we aren't sure what they will decide to do with it in the future.
And now her hip surgery that didn't go well. The surgeon was supposed to be able to make a small incision in the inner thigh and go in and put the hip bone in the socket, close her up and cast her. If things would have gone that way she would be able to move around on the floor, do tummy time and sleep laying down. But when they got to the hip area things were too tight, they had to cut many tendons and ligaments more than what they wanted to. Then the area was still too tight so they say she runs about a 50/50 chance of the hip popping back out and if that happens it will be a much more extensive/painful surgery to fix it. So since the surgery went the way it did she has to be in the sitting position at all times even while sleeping for the next 3-6 weeks. There is no playing on the floor, no tummy time, no sleeping on her back. She is very aware of what is going on and is starting to get depressed. I look at my sweet baby and I don't see smile, laughter is rare, she just sits and stares. She rarely plays, it is killing me, she has even started crying in her sleep. My heart aches for her so badly, and she looks and me and cries mommy, like she's begging me to fix it, but I can't. That's what mommy's are for, to make the hurt and bad go away, but I can't help her, I can only try to make things as easy as possible. I try not to let her see me cry or get sad but I do at times. I try not to blame myself but I do a lot...if only my body worked right and I carried her full term like I was supposed to then she wouldn't have to go through all this. For now I am just praying for better days and hope that soon she will return to her normal, happy, sweet self.
She sure looks cute! Have you taken her oustide at all? I bet it would boost the mood to sit outside in the shade or something if you can. Abby had acid reflux and it's so hard. I can't even relate to you, but I felt like I was dying all the time with her. She would shoot all her food across the room as well!!!! Crazy!!! Glad that she's home! I hope she does better!
ReplyDeleteYea I understand that! Annabelle has acid reflux too. I take her outside every day it isn't raining =)
ReplyDeleteHi there ... I saw your link on the FB page (I'm waiting for confirmation to join the group). My daughter Annabelle is going in a spica in four weeks. Your story stood out to me since our daughters have the same name.
ReplyDeleteLove the name Annabelle =) Sending prayers for you and your daughter. It is by far the hardest thing we have been through yet! But we are making it, getting better and stronger with each day. The only advice I can give you is to sleep when she sleeps because her sleeping schedule will be crazy after surgery and just hang in there! Keep telling yourself that it is only a couple of months and then she can begin the rest of her life better and healthier than before. Good luck!
ReplyDeleteI'm so sorry you and your family have to go through all of this. I understand your pain and struggles about wanting to take away the pain, and how mommy is supposto make everything better! My daughter was born with asd. She had no wall in the top two chambers of her heart. Although she seemed normal, we had to take her to the doctor all the time. Needles, scans, X-rays, ect..... They told us it would need to be repaired by a simple catheter inserted into her thigh and up to her heart to close the hole. She cried every time she had to go and get check ups like she knew what was going on. When we got to New Orleans for her surgery They said we would be able to go home the day after. When they took her back and put the camera down her throat, the doctor came in and told us she had no wall at all and they would have to do open heart surgery. I was already a wreck and couldn't hide my tears from her as well as I thought! I found myself crying in the bathroom praying for everything to be ok. When we asked what would happen if we didn't do the surgery,they told us that when she became a teenager or young adult that her heart and lungs would have exhausted themselves and just quit. No warning!! So of course we went through with it! The hardest part was the wait. I didn't talk to anyone! When they came in and told us she was on bypass and they had stopped her heart I could swear I felt mine stop aswell! The hardest 6 hours of my life! When they said she was coming out in 15 minutes, we stood by the door and it felt like forever! The most amazing feeling was when I got to kiss her head when the rolled her out! Nobody else was around in my mind!!!! It took 2 months of extreme care before she could do things herself and didn't cry all the time! I could barely keep it together to clean her chest while my sweet baby cried and asked me why? And told me she wanted me to make the ugly thing on her to go away, because she didn't want it there. My husband was the only person for me to lean on and at times it didn't feel like enough. I'm so thankful for everything that was done for her and that they caught it early on. I don't think I could make it through life without her. But just knowing that I couldn't make it all better with a kiss and hug, and that she had to go through it just hurts my heart to think about. I pray for your daughter everyday! I just know that she is a strong little girl and will make it through all of this stronger than everyone! Just continue to be brave for her! She needs her mommy to let her know that God will take care of her!!! Good luck with everything!
ReplyDelete