Monday, September 5, 2011

Putting it all out there: The past year, my pregnancy, our NICU experience, to the present.

I don't really know why I am writing this. Maybe as a sort of therapy. Maybe to let people know how it really is. Maybe if I get it all down in print it will stay there. The bad, anyway.

Let me start off by saying that I am eternally grateful for Eliana. She is a gift from God to me and the whole world. God's hand has been on her since before her birth and I firmly believe he has something very special planned for her. She has already touched so many lives and she is still a little baby. Her first name, Eliana, means "My God has answered me." Her middle name, Elizabeth, means "gift of God". Indeed she is.

A little history

I was diagnosed with PCOS about a year after my older daughter, Jasmine, was born. Infertility is often associated with this. So, the chances of my becoming pregnant have been seemingly stacked against me. Not to mention the fact that I have an incompetent cervix. Through nutrition and exercise I have been able to pretty much overcome the PCOS, as became evident last year when I became pregnant with Eliana. Nothing can be done about my cervix, apart from having it stitched closed during pregnancy. (Or before, but that is a different surgery altogether and not done many places.)

My pregnancy with Eliana

The cerclage lasted exactly 24 weeks, when Eliana was born at 1:01 AM on March 1st. I had known that the cerclage was problematic for a week or two beforehand, but hadn't decided whether or not to get it redone. Thankfully I didn't, because it was discovered that I had an infection of the amniotic fluid and that could have killed us both had it gone on any longer or gotten any worse.

It is a good thing we don't know what we are going to have to go through or we may not have the strength to face it. That goes for Eliana, as well as our family.

I am so thankful for the technology that keeps preemies alive this day in age. I am so thankful for the hospital employees who care and do their best with a true heart, and even for the ones who do it without a true heart, as God has used all things that have happened to work for our good.

NICU Journey
Eliana's road in the NICU was bumpy to say the least. She started off doing well, thank God. No infection was detected at her birth, but she was put on antibiotics anyway. When she was about a week and a half old a hole was found in her intestine during an xray of her lungs (thank you God for it being found), and she had to have an operation to correct that. (She still needs a further reconnection operation.)

Her lungs were damaged by the conventional vent as a result of them being so fragile and she was put on a jet vent for a while (a long while it seemed). She was then put on a cpap for another long while. Finally she was able to come off of that and was put on oxygen until her body could keep its oxygen saturation up in the (mostly) 90s by itself. This in itself was a long and stressful journey, but the end result is that her lungs have healed to the point where she needs no breathing assistance at all. That is miraculous and I give God the glory for that!

During her stay she also had a valve leading to her heart manually closed. This particular valve closes shortly after birth and did not in her case.

She also had many complications that could have been avoided, such as a PICC line infiltration that caused a clot and collection of fluid (and a very large mass)in her abdomen (fluid situation now mostly resolved), fractured bones that occurred during PICC line placements, oxygen saturation going down to the teens when she needed blood transfusions and the doctors not giving the order for her to have one (devastating to say the least-even to this day) ((Imagine sitting for hours (usually on Sat. nights-why I don't know) watching your child struggle to breathe, breathe periodically, get very lethargic, have LOW LOW LOW oxygen saturation and  bradys, basically on the brink of death until someone DECIDES they will allow her to have a transfusion. There is so much more I have to say about this. If you want to know, just ask.)), and weeks of constant crying and pain due to food additive intolerance. There are also strange things that occurred like the time she was left covered up all night (probably under a heat lamp) and was presumed to have a fever and went through hell the next day for it- not being allowed to eat, spinal tap, etc. But as I have said before this all worked out for her good because the special attention she received led to the discovery of the PICC line infiltration.

A lot of good happened as well, as she is here with us today. It was quite a struggle to get her out, and she wasn't exactly released willingly. They wanted to have her surgery before she left (surgeon said no), were set on a g tube (she drank 2 full bottles today- 80ccs, about 20 extra per meal.). She doesn't always drink all of her bottle and we often use a feeding tube because she has had severe stomach pain that has many times left her not interested in eating. I refuse to push the matter with her. I offer her a bottle at the beginning of each meal. Sometimes she drinks all, sometime some. If she doesn't drink it all the remainder goes in her feeding tube.

It took us a long time to realize that we could have some control and say so in her hospital stay and we were labeled negatively for it by many people. However, know that you have a say in the care of yourself and your loved ones in a hospital setting. Doctors bring a lot of expertise, of course, but if you want things done differently or don't want something done, that is YOUR CHOICE. We have not had vaccinations done on Eliana and of course they all think that is horrible. Me, not so much. I have done a lot of research and with all her little body has gone through I will not have her injected with poison at this point.

We also had an episode a week or 2 ago where we decided to keep a watch on her left eye (retina slightly detached, even after 2 laser surgeries). The doctor obviously disagreed as she had social services come to our house due to her claim that we were neglecting our children. IMAGINE THAT! I am an extremely overprotective mother- this I know. Neglect, NO WAY. Things have turned out well with this as her retina hasn't detached any further and the doctor office social worker has tried to make amends with us. But people, ALL OF THIS HAS AN EMOTIONAL EFFECT ON US. Jasmine, in particular, was devastated by the visit (to say the least), and Billy and I looked at it as a slap in the face.

Why do I lay everything out there now? I say, why not. If you or someone you love go through something similar, maybe this will help you. I am not the same as I was before, and I suspect none of us will ever be. I feel that most things could have been handled better by a lot of people. A few people have been exceptional. Eliana's primary nurses were the BEST and we will be FOREVER GRATEFUL for all of the love and care that they gave. Not to mention understanding. There have been some really good doctors as well.

I personally think we are all suffering from some form of posttraumatic stress disorder, including Eliana. She is rehabilitating at home for sure. She is learning to love, trust, and not expect pain.

These days I myself don't have it in me to play games on any level. I tell people what I think. I do what I call 'keeping it real'. Sometimes I feel jaded by remembering needless sufferings and harshness. I remember the countless times it felt like my heart literally fell out of my body and poured onto the floor into a puddle. But then I look at my Baby Girl and know I WOULD DO IT ALL AGAIN.

In time, maybe I will soften back up around the edges. Who knows. Doesn't really matter I guess. Experiences play a part in who you are I guess. I can still see the beauty and humor in things. I still lean on God like crazy, and sometimes find shelter where ever else I can.

I am now caring for Eliana at home (YES). She requires a lot more thoughtful care than your average newborn but I LOVE DOING IT. She is my Baby Girl and I thank God for choosing me to be the one. I am so thankful for my Jasmine as well. I have an older child in heaven, due to my incompetent cervix. I think of her everyday as well and I love her. Eighteen years doesn't change that. No amount of time ever will, until I see her again.

A song Cissy posted on Facebook the other day reminded me of Eliana. She came from staying in the hospital for about 5 months, often having a different caretaker every 12 hours. She endured painful procedures and emotional neglect. (Not from primaries, and maybe even not on purpose from others, but she did.) As I said before, she has just in the last 2 weeks or so really started coming around to trust. I feel we have to earn her trust, and this song kind of reminds me of the situation:

We are planning to wait until she is almost a year old for her next (and hopefully final) surgery. That way she will hopefully not have to stay in the hospital long and there will be more time and distance between this NICU experience. As grateful as we are for it all, it is something I think we need to seriously get over. 


  1. That is a beautiful song,it does speak of what Eliana has gone through, but Praise God, she is Home with her loving family now .

  2. Thank you for sharing your experiences Angel. I knew from yur FB posts your family must be going through more than you were saying. Of course, you had to write - that is part of the healing process, and you've done a beautiful job laying it all out there. This article could help other people, and also give people with no experience in NICU some insight. I hope your will write more about this in the future.

    We take so much for granted. Blessings to all of you and expecially Eliana! I will keep her in my prayers. She is truly a miracle and it's apparent that God has a purpose for her life.