Any of you that know me and follow my blog know I try to remain as positive about things as possible, even in bad times.
I want to start this post off today with just that. I can't even begin to describe how much I love this picture and it brings tears to my eyes every time I look at it:
This was taken yesterday at our evening visit with the girls.
Well I am not really sure where to start this post, so here I go. Olivia is doing amazing and is now over 4lbs, had her OG tube removed and now has a dandy NG tube. She drank a total of 14mls out of a bottle yesterday. They seem to think she may be home before Halloween. Wonderful news!
On the other hand, Lilah is not doing so well. She is only 3lbs 4 oz as of today and is almost one month old. I met with the Cardiology team yesterday and they are concerned. It looks like she is going to need multiple surgeries and the first one could be as early as this week coming up. They want to go in and put a band around her artery which is also known as a Pulmonary Artery Band. This is major surgery and she will need her chest cut open to have this done. To say I am scared shitless would be a HUGE understatement. Is this a very common procedure? Yes it is. Do they perform many of the procedures on baby's that are 3lbs? Yes they do. Will it help her have a better quality of life and gain weight until her patch surgery? Yes it will. Is an amazing surgeon doing this surgery? Yes he is. In fact OU got this surgeon from the Mayo Clinic and he specializes in both these surgeries on premature babies. Does any of this make me feel better? No it really doesn't . I am having nightmares of my daughter dying. I try to be strong for everyone around me and mainly for my children. I am a mess inside. I know we have to do this surgery. In fact I know she needs this surgery to survive. I am just at a total loss right now. I also feel like a huge failure to my girls. I wish I could have carried them longer. I wish I could go through this surgery so Lilah doesn't have to. I wish I could carry all the burdens for these babies and they could just come home right now as healthy little girls.
I have found myself lately looking at other families while getting gas or going through a drive thru. I see them in their everyday life, doing their everyday activities. I sit there and wonder if that will be us someday. Will I have my little girls at the gas station pumping gas and heading to the park for a fun afternoon? Right now our lives consist of full time jobs and going to the NICU multiple times a day. I had a nurse and doctor tell us that " you guys are always here and you know what is going on with the girls better than anyone". After we left I told Al that in fact we are not there all the time and I feel I could be there so much more. The guilt of not being there all the time is unbelievable. I have never felt such guilt in my entire life. I find myself crying when I am alone because I am so overwhelmed with different emotions and I just don't know what to do . All I can think about is the "what if's"? What if I did things differently and both my daughters were here healthy. I asked about congenital heart failure and what causes it. Studies have shown that babies with these problems often had mothers who:
Took many medications during pregnancy X
Had gestational diabetes X
Had a family history of heart disease X
Yes I had all of the above. I know it will never be known why this happened and I know that the only thing right now is getting Lilah better so she can come home.
I would love to hear from any long term NICU moms and moms that their babies had one or multiple heart surgeries at such a young age and weighed so little. Please comment or email me at
tonisharapp@yahoo.com
Thank you.
I LOVE that picture! How sweet!
ReplyDeleteI am so sorry your daughter has to go through so much! You can't blam
Oops! I wasn't done with my comment...
ReplyDeleteYou can't blame yourself for your daughter's heart. You would do anything for your babies- I hope you can get rid of some of your guilt because your girls are so lucky to have you as their mom!
Thinking and praying for you!
Thank you Jennifer.
DeleteI will start with the positive. I love the photos of you and Al hold Olivia and Lilah. These are so precious and incredible treasures. I'm also so glad to hear that Olivia is thriving and doing so well. She's a tough little cookie.
ReplyDeleteNow for the scary stuff. Hon, my heart hurts knowing what is coming. It hurts because of how scared I am for you guys and I wish I had a crystal ball to tell you how all of this would play out. I don't have it, but this is what I do know. I know that Lilah is a fighter. And a feisty one at that. I know that your doctors are incredible (you and I both have those emails). And I know that if you could trade places with your little girl, you would do so without thinking about it. Love can do amazing things. Love is what brought your two angels into this world and I hold on to the faith that this is what will see all of you through.
I know you're scared because I'm scared too and it's likely only a fraction of what you are feeling. But I promise you, you are not alone in this. And you are doing everything humanly possible to make sure that your girls get through this and come home.
Holding all of you in my heart. And know that I am a phone call away.
Thank you Christy. I will answer your email shortly. Just getting around to reading. It means so much for your support. I have said it many times, but it really does.
DeleteFirstly, what a gorgeous picture! An amazing moment captured.
ReplyDeleteI am so sorry you are going through such a frightening time.
Re: your guilt, you are doing everything in your power right now. It sounds like you are doing a stellar job at being their Mama. This is not your fault- at all! You are doing your best amidst some big challenges. That's all any person can do. It's okay to cry and feel overwhelmed. You have been through hard stuff before. You can do this. One minute at a time. One task at a time.
I'm sending you a flood of positive vibes for you, hubby and your beautiful daughters. Xo
I am working on the guilt aspect, it is so very hard.
DeleteAll I can do is pray for you and pray for your girls and especially sweet Lilah. Hoping her surgery is a success and that she improves. Please try to stay positive and strong! Hugs!
ReplyDeleteWe can use all the prayers possible. Thank you.
DeleteThat picture is so precious. Your girls are so beautiful. I know you're scared, but know you've got lots of people praying and God is watching over your precious baby daughter. XO
ReplyDeleteLove the picture :)
DeleteI am sorry you and Lilah are going through this. Thank God you have such a good doctor... Sending you a big hug.
ReplyDeleteThank you. Having a great surgeon does make a difference.
DeleteHello, I came over from Cristy's blog and just wanted to let you know that I'm praying for your sweet girls and your family. We had a relatively short NICU stay so I know my experience is nothing like yours, but it was hard. So I know your road right now is hard. Try not to feel like a failure about not being there. I know it's so hard but you're working now so you'll have time later. And your babies know that you are there.
ReplyDeleteThanks for stopping by Donna. I am sure that a NICU stay is hard on any parent, regardless how short.
DeleteI am praying so much for sweet Lilah! I can only imagine this must be so very hard for you and your entire family.
ReplyDeleteThank you.
DeleteLifting your family – especially Lilah up in prayer. I can only imagine how terrified you are. I’ve watched my nieces and nephew be born prematurely (27, 29 & 31 weeks) due to NAIT (the platelet issue I have). Even as their aunt my heart has broken and I have cried many tears at watching them endure surgeries and such. I can only slightly imagine how much stronger that ache is being the mother of a little one going through so much. You are a strong mama – you are doing everything in your power to care for and protect. May God continue to amaze you with your own strength and His healing powers.
ReplyDeleteI don't think I have ever cried so much in my life.
DeleteDylan had a PDA Ligation when he was just 3 weeks old (28 weeks adjusted and just over 2 lbs). It's a clip placed on the PDA valve that sometimes doesn't close in preemies. I have no idea how it compares to a PAB. For his, they went in from his back and side. He has a sickle-shaped scar that runs the length of his shoulder blade.
ReplyDeleteIt was scary as he'll because at that point he was still on a ventilator and we didn't know whether he would make it in general, not just with the surgery. The first week after the surgery was really tough. He was in a lot of pain and didn't improve much. But then we started steroids and his progress never stopped.
We spent 143 days total with just one heart surgery (on Halloween 2012), but Dylan is turning two tomorrow!
Please don't hesitate to contact me if you'd like more info or more connections. I know a ton of preemie/micropreemie moms.
I would love any connections you could give me. I am not sure what to expect with her stay in the NICU and especially with recovery from the surgery. I do know they will cut her chest open and go in to place a small rubber band on the major atery going into her heart. This will help restrict the blood flow going in and help with the excess going into her lungs. Therefore helping her to burn less calories to breathe etc. and gain weight so we can get her patch put on.
DeleteThat photo takes my breath away. Praying for you, Al, and the girls. I can't imagine what you are going through right now, but I am thinking of you often.
ReplyDeleteI just ordered some prints of that photo. It is my favorite so far!
DeleteThat picture just melts my heart! I so hope that things go smoothly for Lilah. I simply cannot even begin to understand what you guys are walking through. Praying that it's a short season you're in and that all your needs, and then some, are met! Both of the girls are just perfect!
ReplyDeleteThank you so much Morgan. I will take all the prayers and thoughts people can send us.
DeleteI don't have any surgery wisdom to add, but just wanted to let you know that you absolutely should stop beating yourself up with guilt right now. It isn't helping you or Lilah, and you definitely don't deserve to feel that way. You did everything you could to have those girls, and nothing could have stopped them from coming when they did. You are there for them and thinking of them day and night, so right now you just need to focus on keeping positive and supporting little Lilah. I can't imagine how hard it must be to be in your situation right now, but please know I'm thinking of you and your family all the time.
ReplyDeleteI promise that I do sit down and tell myself all the things you just said. I also know it is not healthy for me or the girls and promise I am working through things.
DeleteI agree with Aramis. You have plenty of time for mom guilt in the coming years (ha!)- right now you need to focus on your girls and staying positive for Lilah.
ReplyDeleteI love love love the picture of the girls with Al.
I am a shitty commentator these days, but I just want you to know that I am thinking about you and praying for your girls daily.
ReplyDeleteI cried so much during our NICU stay and the following weeks at home. Of course we weren't dealing with impending surgery, but that just adds to what you're dealing with. Let the tears flow! It's okay. It is a very stressful time. Here's what I want you to remember though:
ReplyDelete1. The meds you were taking is what helped you carry Lilah and Olivia into this world in the first place. They helped your body to successfully grow 2 little baby girls.
2. There is nothing you did to cause your gestational diabetes.
3. Your family history is out of your hands and also not anything that is your fault.
Those girls have the perfect parents to love them and see that they get the best care possible. You are doing a PHENOMENAL job of balancing all the tough things going on right now, and one day, you WILL be past this point and having to stop at the gas station to pump gas with your little ones in the car. Someday, somebody else will be looking at the normalcy of your family and wondering if that will ever be them. They will have no idea what you have been through to get to that point, same as you don't really know what those other families have been through. You are a fighter Tonisha. You are a strong woman, and you and Al will raise your daughters to be the same.