Friday, September 28, 2012

NICU Follow-Up

Madison had her NICU follow up on Wednesday and it really wasn't what I would have expected. A doctor from the NICU was there, one whom I've seen quite a bit and I think have mentioned she took care of me as a preemie although she was on a different team most of the time Madison was in the NICU she knew everything that was going on with her.

She looked her over and said she looked/sounded good after checking her weight, height and head circumference. Apparently she is long and skinny. Then it was time for "play time." Let me paint a picture for you. Playtime was in the same place as you would bring your kid to see the pediatrician in. There is a examination table, a sink, trash bins oh and a desk and chair. The chair for me to sit in and hold Madison and a desk to put the toys on. How do you expect a child to feel comfortable and want to play while sitting uncomfortably on mommy's lap? You don't and I wouldn't expect her to.

I was asked questions about things she does/doesn't do and we were marked down on paper for that along with how she was responding to toys being put in front of her and things like that. After all was said and done my husband mentioned something to me along the lines of the lady saying "she's behind in somethings and I can't say really until we are done."

She starts off with saying some of her skills are below were she should be at and others are above where she should be. Like sitting, Madison cannot sit on her own she tries to but is unsuccessful how ever she gets on her knees, pulls herself up and pretty much crawls. I believe the major issue was the sitting part. She goes on to say I would like to see her again in a different atmosphere, a playgroup type of thing before she sends in the report. She asked me if that is the way she acted or if she does a lot more in a more relaxed atmosphere to which I said of course she does more. I REALLY wanted to add in the part about how do you expect a child to play in a non-child-friendly play area? I really wanted to decline the invitation because we have Early Intervention (EI) coming every other week and it seems ridiculous BUT to prove them wrong I agreed to the meet up. I REALLY don't think I need to see her for a month or 4 weeks I hope is what she meant by month.

Neurologist was also mentioned...yeah I don't want to think about that right now.

Friday, September 21, 2012

Wednesday Night

Started out nice. The husband and I decided to eat out somewhere. Not that we had the money because I'm drowning in bills BUT I think we needed it. We ordered our food and somehow Dexter came up in conversation.

The hubby started saying things like "Could you imagine if Dexter was here taking care of two kids?" and in my head I said "I sure could it wouldn't be easy by no means but maybe I'd be a lot happier than I am, maybe I wouldn't have so much guilt." I responded by saying "So your thankful we only have her huh?" Clearly that is how I took his comment and I really didn't see any other way of taking it at that time. We both clearly teared up in the restaurant. He started talking about "what-ifs," and I told him to stop. I didn't want to talk about the "what-ifs," because they weren't going to happen.

I know something deep in him is making him not feel caring towards Madison and I think it has to do with not having Dexter. I told him when I was still pregnant and after we found out about the cervical issue that there could be a possibility of delivering one twin and trying to save the other and he responded so harshly with "So it has to be Dexter, we'd have to lose him?" Something along those lines and I feel like he might blame me for his loss or blame Madison for being the survivor. Sometimes I see the unconditional love in his eyes towards her but its more not than anything.

I don't know how marriages survive losing a child because it feels like it's one whole blame game and you will always be tied together because of that loss. We never cried on each other's shoulder when we lost Dexter maybe a hug with some tears but clearly there has been no closure and no connection between us for Dexter.Maybe it's because so  much family was around that we could take our own personal time to mourn and we still can't because we still aren't alone.

6 Month Eye Appointment Check Up

After we left Madison's 6 month check up I was kind of upset. As some of you know or may not know because of how premature Madison was and how long she was on oxygen she developed Retinopathy of Prematurity (ROP)

This is what Wikipedia has to say about it:
Retinopathy of prematurity (ROP), previously known as retrolental fibroplasia (RLF), is an eye disease that affects prematurely-born babies. It is thought to be caused by disorganized growth of retinal blood vessels which may result in scarring and retinal detachment. ROP can be mild and may resolve spontaneously, but it may lead to blindness in serious cases. As such, all preterm babies are at risk for ROP, and very low birth weight is an additional risk factor. Both oxygen toxicity and relative hypoxia can contribute to the development of ROP.

Normally, maturation of the retina proceeds in-utero, and at term the mature infant has fully vascularized retina. However, in preterm infants, the retina is often not fully vascularized. ROP occurs when the development of the retinal vasculature is arrested and then proceeds abnormally. The key disease element is fibrovascular proliferation. This is growth of abnormal new vessels that may regress, but frequently progresses. Associated with the growth of these new vessels is fibrous tissue (scar tissue) that may contract to cause retinal detachment. Multiple factors can determine whether the disease progresses, including overall health, birth weight, the stage of ROP at initial diagnosis, and the presence or absence of "plus disease". Supplemental oxygen exposure, while a risk factor, is not the main risk factor for development of this disease. Restricting supplemental oxygen use does not necessarily reduce the rate of ROP, and may raise the risk of other hypoxia-related systemic complications.[citation needed]
Other physicians have suggested that supplemental oxygen, specifically oxygen tents given to pre-term infants specifically causes ROP. The hypothesized mechanism involves the degradation and developmental cessation of blood vessels in the presence of excess oxygen. When the excess oxygen environment is removed, the blood vessels begin forming rapidly again and grow into the vitreous humor of the eye from the retina, sometimes leading to blindness.[1] This does not preclude the dangers of hypoxic environments for premature infants.
Patients with ROP are at greater risk for strabismus, glaucoma, cataracts and myopia later in life and should be examined yearly to help prevent and treat these conditions.

So with that said Madison had laser surgery in both her eyes. I was told she may have to wear glasses, everyone in this family has glasses but that's no big deal. We are supposed to go back for another 6 month follow up and I was warned that, that may be the time when she will get glasses. According to the doctor the prescription is "very strong," and there is one type of frame for kids. So I took that as her having coke bottle glasses. That part upset me. He took it as no big deal but to me she sees fine. She looks at everything she gets to the things she wants across the room I don't feel like there is anything wrong with her vision and I don't want to put glasses on my daughter's face until she can tell me whether or not see can see these things or not.

My husband was upset too and was talking about getting a second opinion, I think its a good idea but I just don't get the whole "let me examine your eyes and I can tell you need glasses," deal without a child being able to respond. I understand looking in her eyes and checking out how the vessels in her eyes are but that doesn't state whether she is blind or not. I just hope between now and then Madison will prove him wrong. Either way I don't think he can tell if she can see by just looking at vessels.

Monday, September 17, 2012

It's Crazy

Madison's personality is really starting to shine through. She is the happiest baby...unless she doesn't want/like something but she is too adorable! She smiles over anything now and she's starting to crawl and everything. We caught her on her knees pulling herself up and looking over her pack n' play so we lowered it now to "play pen" status. She gets into anything and everything. She's doing so much more than I ever thought during those NICU days. We do have a miracle on our hands and I'm so thankful for her.

Saturday, September 8, 2012

Friday, September 7, 2012


I realized I never updated you all on the red lumpy bumps situation. I think I put ice on it a couple times and now It's pretty much all gone. Now she is having a pooping issue these last couple weeks. I have her on prune baby food, prune juice I'm only feeding her cereal once a day and some fruits and veggies twice a day until she does a good sized poop. I don't want to bind her up anymore.