Today has not been the best for me. I have spent the day crying and lying around doing nothing at all. I can't even get myself to go pump. I just don't want to do anything. I haven't ate anything yet, even though I am hungry. I just can't do it for some reason. Hormones? Depression? I don't know.
We went to see the babies last night. I got to hold Sh.awn for the first time. They were changing his bed to an isolette, and I got to hold him while the all the furniture movement was going on. He was nice and threw up some gunk on me. He wasn't very pleased to be taken from me and put into his new bed. He actually cried! It was cute. I did hear today that he was having some apnea issues last night. I am hoping that this doesn't cause him to backslide back to the CPAP.
Ja.son, on the other hand, is back on his vent. I wasn't surprised to see it because he did look like he was working pretty hard on the canula. The doctor said they would try again in another day. I am worried about Ja.son. While I don't like to compare, he seems to be progressing so much slower than his brother. Plus, I worry about how long he is staying on that vent.
I talked to the NICU doctor today because they had head ultrasounds. The news, and the resulting doctor google search, has left me panicked.
Sh.awn has a grade 4 and grade 2 IVH (bleed.ing in his brain). The doctor said the grade 4 bleed was slight, but any bleeding in the brain is a bad thing. Apparently, the bleeds look like they are starting to "organize" and breakdown. But, there may be two cysts that have developed where the bleed was and that would mean brain damage.
Ja.son also has IVH bleeds in his brain. His are grade 3 and the swelling looks like it has enlarged some. The doctor said it was most likely hydrocephalus (sp?). The doctor is hoping the swelling will relieve itself without any further action. We wait for next week's ultrasound before anything will happen. They are also checking the boys' heads regularly for abnormal growth.
Doctor google talks about how serious this is and the probability of brain damage, learning difficulties, cerebral palsy, etc. I am scared to death that my boys will also have one of these conditions. I work with kids, and I know what these things will mean if the boys have them.
I feel guilty that I had them so early and now look what they could be facing. Look what my family could be facing. Somehow, just writing it down makes it so much more real. Now it is written; therefore, it is so.
Was it too much to ask that I have healthy children? Why are we continuing to struggle through more and more uncertainty and challenges? I am not sure I am strong enough to deal with all of the things that may come.
I know that there is nothing written in stone here. I know that there are no guarantees about what this will mean for the boys. The "what ifs" of all of this are wearing on me. I just keep asking, "Why?" anyway.
What you feel is completely NORMAL!! It is hormonal, and hormonal 'depression' related and part of this is stress, and part of it is sheer exhaustion. It is all about how difficult a situation you are in. It is very hard to have two premature babies in the hospital. You get a lot of information everyday, and it changes constantly, and it all means something, or it doesn't and that can be good or not good, but you don't really know, and it is just so VERY hard. (One apnea episode here ended up being dried mucous in a baby's nose...) Not to depress you, but there are going to be days like this, real panic days, and not just when they are babies (driving??). Unfortunately, you don't know at this point what it all will mean ten years from now, so in the meantime, just try to get up and do your best everyday. Some days that may mean just going to the hospital and loving your boys as much as you can. Others it may mean spending some time by yourself for a while, or spending time with a friend. I know the feeling of needing to be there all the time, but it is ok to need some time for yourself, too. One thing that I learned is that you can ask the nurses to be more involved in the care of your babies. If you are holding Shawn and you think you want to keep holding him, ask if you can rather than returning him to the isolette just because it is ready for him. I compared mine all the time, how can you not, and you know what? At fifteen they are both great kids who are very different from each other. Take care.
ReplyDeleteI agree what you are feeling is hormonal. There is no harm in going on anti anxiety/depression meds for a little while. There is no reason to suffer through it. It only makes dealing with what you are even more difficult.
ReplyDeleteI am so sorry you are going through so much uncertainty at this point. All I can say is 'I'm so sorry'. It's so unfair.
I agree that your hormones are certainly not your friend right now. That post delivery crash is brutal, even under the best circumstances, and I remember long hours crying my eyes out and wondering what in the world I had gotten myself into.
ReplyDeleteThe advice you're getting from people who have been in your position is invaluable. I've known my two cents since her twins were a year old and can honestly say that she gives some of the best advice around.I know that a lot of your readers know first hand what you're talking about.
The problem with motherhood that no one tells you about ahead of time is that it's one worry after another. It never stops, and as Gilda Radner said It's always something. Always. Just as soon as I start to relax about one thing something else pops up. It's the price we pay for these children we would die for. And it's worth it. But, oh man, can it kick your ass.
We are all here for you. Just move one day at a time.
Thoughts and prayers are with you daily. Hormones will play major havoc on you and don't get down on yourself for struggling some days. Look what you have been through. IVF isn't easy, you got through it, AND you were able to get pregnant (something i havent been able to do); you were able to carry twins, and that isn't easy either. You've been through the ringer girl, give yourself time to heal, emotions from a pregnancy will set you crazy even if all is going perfectly. Slow down, enjoy what you do have, 2 beautiful boys, a loving husband and try and remember tomorrow is a new day. I agree if you think you need some meds to help calm you check with the doc and see what they can do for you. There are so many options these days. Do not be ashamed or embarrassed. We need you to be strong for the babies, but you are allowed weak times too. You are not perfect -remember that and if you can remember that, it should lessen some of the stress you feel.
ReplyDeleteOh stacie, I am so sorry that you are goiing through this. Maybe you should get some meds from your doctor- I def would. There will be good days and bad days. My husband always says- not to worry until the doctors say that something is final. Everything is still up in the air- which is hard, but take it one day at a time. I know the feeling of "when will all the hardships end?"- but GD does not give us anything we cant handle. Please try and stay positive. we r here for support.
ReplyDeleteI am praying for those boys and hope that the bad days will be out numbered by the good.
ReplyDeleteMake sure you take care of you. There is NOTHING wrong with getting yourself some medication to help you through this. Talk to you doctor. Hormones, stress, bad news, good news....this yo yo is enough to put any of us over the edge. It is ok to admit that you might need some help.
I will be thinking about you and your family.
Big Hug !
Dear Stacie,
ReplyDeleteI am de-lurking from Florida to tell you that what you are going through is harrowing ... but it can end up with a good result. Can you stand a success story? My SIL had her twin girls at 24 weeks and got through the brain bleed alerts, the hole in the heart, the traecheotomy, the fears about scarring, etc. Now she has two beautiful 2 1/2 year olds with minimal problems (one still has underdeveloped lungs and needs a traech) but they are happy and healthy. Take care of yourself. Ask for help when you need it. I've been following your story for all these many months. I know you can handle this. I'll be praying for you. Best wishes,A