Saturday, February 28, 2009

Silliness

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Operation: Wean Lily Off of Reflux Medication = FAIL

At Lily's 9 month well-check our Pedi recommended that we "try" to wean Lily off of her medications (Prilosec and Axid). We had about a month of no spit-ups or vomiting. It seemed like a good idea at the time, after all, we know Lily should grow out of her reflux and the only we to tell, is to try and wean her off her meds.

But part of me was feeling like "please....we just ridded our house of vomit and we finally don't have to have a bib on Lily 24/7, not to mention, neither me nor Chris had been "hit" in a while".

We started by eliminating one dose of Axid, and depending on how that went, we would slowly take down all her doses of both medications.

Well, after a week of fussiness and back arching (no smiles either), last week Sunday the vomiting started again, after 4 vomits in one day, we decided to go back up half of the dose.

Last Tuesday Lily had her first appointment at New Berlin Therapies for her PT/OT. One of the therapists mentioned that sometimes children's developmental delays have to do with their reflux - because they don't feel very good they don't do a lot of things that would make them feel worse (rolling, tummy time, etc.). She also thought that Lily might be tightening her shoulders to deal with her reflux. She suggested going back to what was working with the meds, this way she will be feeling good and getting some therapy, both of which, should help with those tight shoulders.

After a week of being back to her original dose, we are still covered in vomit. In fact, this morning when we went to wake-up Lily we noticed that she must have vomited in her sleep, there were, what-once-were-carrots, all over her bassinet, her pj's and the cover of the bassinet, so she really aspirated hard - poor thing. (fun morning for mom and dad too)

Then we went to the March for Babies ice cream social this afternoon and when I went to get my cutie out of her carseat, there was vomit everywhere. Of course I started sweating and thought everyone was staring at me wondering why I would dress my child in puke.

I guess we will wait to see how this week goes, and then we might have to go up on meds again ::sigh:: Best Blogger Tips

Mason Takes Care of Lily

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Thursday, February 26, 2009

Congratulations Daddy

My Daddy has been promoted from Detective to Sergeant! That means he will be supervising other officers...hmmm! Congratulations! Best Blogger Tips

Tuesday, February 17, 2009

9 Months + Developmental Clinic Update

Lily celebrated her big 9 month birthday on February 10th! She is currently 15 pounds 1 oz and is 27 inches long. She has made it onto the normal charts (always was on preemie growth charts before), although only at 5th percentile for weight, 25th percentile for height and 75th for her head size (sometimes I am glad I didn't have to push that head out). For those that have been asking...she is currently wearing size 3 months, she has very small shoulders and is very thin, and usually grows out of things because she is too long. But, she is getting too long so she will be moving into 3-6 months clothes soon! In this picture the dress is newborn size, dresses tend to fit in a smaller size because she is so tiny through her shoulders.

She is still sleeping through the night (our little angel), talking a lot, smiling, laughing and loving life! She started swim lessons and loves them! She is eating, eating, eating, it seems like that's all she does. She is doing lots of finger foods (diced bananas, peaches, avocado, chicken, toast, waffles) now and can feed herself. We had her 9 month pics taken on Valentine's Day and we just keep looking at them and both of us keep saying "she is the cutest baby", "she is so happy". It feels really good to look at her and know she is such a happy baby even after all she has been through.


Developmental Clinic Update

I have been meaning to write this, but wanted to wait until I was "together" again....

We had Lily's Developmental Clinic on Thursday. It is basically a follow-up with the NICU, Lily would meet with a Occupational Therapist this time to access how she is developing. She will have one at 6 months adjusted age (this one), 18 months adjusted age and 30 months adjusted age (she is currently 7 months adjusted, there was a wait to get her in). It is held at Aurora Sinai downtown.

I was really looking forward to it, and although we have been told that it will take Lily approximately 2 years to "catch-up", I was really hoping and praying that we would get a clean bill of health for her and I could stop worrying so much about her....well, I guess that will never happen.

After "playing" with Lily for about an hour the OT gave us the scoop. She thought Lily was an interesting case. There were some things Lily was doing really well, like sitting for long periods of time. That didn't really make sense because the OT could tell that Lily had a "weak core" and was overcompensating for that with stiff shoulders, this would explain why I am unable to get her to clap or hold her bottle, it actually is very uncomfortable for Lily and sometimes she cries. This would also explain why she is not rolling and likes standing so much. She does great on tummy time and can get around but does not crawl and the OT thinks it will be 3-4 until she crawls. The OT was also concerned with the way that Lily grasps for things, she tends to use her fingers but her thumb is folded under her hand and apparently that is a "primitive" way of grasping, by now her movements should be fluid and easy, Lily is jerky and really needs to focus on something to pick it up. The OT was also concerned that she does not use both of her hands together, she uses one or the other.

All of this was assessed by her adjusted age of 7 months, and even for her adjusted age she is showing some delays in development, she is more at 6 months. Although it's not much, everyone was concerned that if we waited until her next clinic she might be further behind and none of us wanted that.

They didn't see any "red-flags" for cerebral palsy, but were quick to say they couldn't rule it out yet either. We have known from the beginning that Lily might have CP (she has several risk factors: prematurity, low birth weight, my blood clotting disorder, protein in my urine towards the end of pregnancy and high blood pressure towards the end of pregnancy), but again we were hoping that maybe they could clear that up too.

So they are suggesting Occupational and Physical therapy. I left the appointment crying. I really thought that she was going to be on track. After all that we have been through I really just felt like I could not handle one more thing. It seemed like another setback, when things had been going so good. I feel like I have failed Lily so much by not carrying her to term and now here is something else that is affected by that. I work with Lily almost every night on some kind of exercise and sometimes worry I am pushing her to much. I just wanted to hear that she was fine and all of the exercise and worrying could just stop.

I was really upset, not because I don't want her to go, but just because I hadn't prepared myself mentally for this appointment to go any other way than good. Just like every mother I am trying to do the best for my daughter and give her the best opportunities. So I have made calls to insurance and to therapy places, so we can get the ball rolling. In the end, this will only help her.

The good news is that she excelled at sitting, vocalization, looking at herself in the mirror and smiling and her head is as round as can be (most of you remember me obsessing over a flat spot for at least 2 months).

I am doing better now too.

My Blood Clot - Update

Last week Tuesday I had another venous doppler done on my arm. My hematologist was very sure that the clot would still be there. She was right. It has gotten smaller, but it hasn't gotten bigger either. It doesn't look like it will travel to my heart or lungs, and so, it will just be a part of me now. They have taken me off of Coumadin - woo hoo! So the excessive bleeding, bruising and hair loss are all finally over after 10 months - that's reason to celebrate!





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Saturday, February 14, 2009

Video of Lily in the NICU



I just found this video of Lily in the NICU, embedded in a file with some pics. I believe my mom took this with her digital camera and it is her and Chris in the NICU with Lily the day after she was born, before I had seen her. They are feeding her through the tube that goes down through her nose. There is sound, but you need to turn your speakers up to hear it (and pause the music at the bottom of the page). Best Blogger Tips

Friday, February 13, 2009

Happy Valentine's Day


This year Lily stole our hearts!
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Saturday, February 7, 2009

Our Little Fish



Lily started parent/child swim 3 weeks ago through Greendale Park & Rec of course! And I have been waiting to post until we got our underwater camera pics developed...I picked them up from the store today and was so disappointed that none of them turned out :(

Luckily we had taken a couple with the digital and I did take a video of her going under. She loves the water! It is a little cold, but that doesn't stop her, she is our little fish! Chris and I are loving it too and look so forward to Tuesday nights when we go.

Now that I know I need to use the digital, there will be more pics coming of her in the water, so stay tuned!

Lily goes under water
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The Many Faces of Lily


Shopping and trying on sunglasses

The cutest kiddos - Mason holding Lily on his lap

In mama and daddy's bed

Early morning before work

Milk Coma - is this the cutest face ever?




Lily and Mason in the morning at Grandma's

Lily channeling her inner Ashlyn (trying to get some hair)

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Just Standing Around



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Sunday, February 1, 2009

What We Went Through and Continue to Go Through

I guess I am posting this because I didn't start this blog while things were really bad in the beginning and I want to be helpful to other parents of preemies or parents that encounter a NICU stay - both are horribly traumatic experiences. I also know that besides my closest family and friends, some of my other relatives do not know how hard our situation was and how much it affected us and continues to affect us on a daily basis. It seems every time I talked to someone I tried to be really positive, and still do, while on the inside I was falling apart.

Having Lily early was truly on of the hardest things Chris and I have had to go through as a couple. We were very unprepared for what happened to us. At the time I went into the hospital I was just 28 weeks. In a lot of ways I have felt "cheated" of the ways things are "supposed to happen".

Nothing was how it was supposed to be. We had not finished the nursery (nor had it even been cleaned out), we had just started a baby class and ended up missing the rest of it, we had no time to mentally prepare for our baby's birth, we did not have bags packed for the hospital, I never got to "nest", we missed really getting to know Lily's personality in my tummy, we didn't get to experience all of her kicks, I never felt her hiccup, my tummy never got so big that I wanted that baby out now, we don't have very many pictures of me pregnant, we didn't have many visitors in the hospital or at home and I had my shower after Lily was born.

And I think the most traumatic thing, for me especially, is that I never saw Lily enter this world, neither of us did. I was told later, after waking up in excruciating pain after a crash c-section (my epidural was stopped and they could not give me pain meds until my blood transfusions were finished), that I had had a baby. I did not believe anyone. I still felt her kicking inside of me. No mother should ever have to feel like that. I did not know it at the time, but I was going to be experiencing a lot of things that no mother should ever have to, while Lily fought to live each day in the NICU.

Before I had a preemie, I thought preemies were "just small babies", like I think a lot of people do. I did not realize, even when I was in the hospital being told that I was having a preemie, what that actually meant. They are not "just small babies"! They are babies that are still supposed to be growing in a perfect environment - mommy's womb. They are ripped from their quiet, dark, warm surroundings, not having learned everything they need to know (most importantly, how to suck, swallow and breath), not having developed everything they need to live, mostly their lungs and brains, they have not put on enough weight, they can not maintain their temperature and they cannot breath on their own. Instead of being placed in her mommy's arms, Lily was put into her plastic box with a vent to help her breath. She had an iv in her arm and a Picc line in her head. She had a feeding tube attached to her umbilical cord - it would later be moved to her nose. She was attached to many machines. And I know that she didn't even have it as bad as a lot of NICU babies do.

Seeing your newborn baby like this, isn't even the worst of it. The worst is not being able to hold her right away, not being able to stimulate her, having all of your first moments supervised by a nurse, not being able to nurse her, not being able to have visitors hold her and the worst - not being able to bring her home, when you leave the hospital. None of this is "supposed to happen".

Here we had had our baby, and we still didn't know if she would make it. I do not wish a NICU stay on even my worst enemy - it is horrible. You literally live moment-to-moment. Each time the phone rings, you wonder if it will be a call from the hospital about your baby. You feel like you aren't doing enough, but all you can do is pump and visit. You feel like you don't visit enough. You feel guilt that you didn't do everything you could while you were pregnant to give your child the best chance. You feel guilty that nurses are taking care of your baby. You feel happy one minute that things are going good and then the next time you visit you get a bad report and you feel like it will never get better. You feel jealousy toward other babies that are getting discharged, you wonder when it will finally be your turn to take your baby home. You feel scared that your baby will never be normal. You wonder if she will remember all of this. You wonder why all the other moms look like they are able to handle it, you realize you look the same way to others, and you are falling apart inside, so they must be to. You wonder if you will ever be the same person after this. You wonder if you will get the nursery done in time. You prepare yourself for the worst news each time you visit the hospital. Your mood is based on the report you get about your baby. You hate the nurses one day and love them the next. You put your baby in someone else's hands and you pray. You pray while you cry yourself to sleep each night, that tomorrow will bring good news. You miss your baby every night. You call the hospital to see how she is doing constantly. You don't feel like you deserve to laugh at a joke because your baby is suffering. You are hopeful that things will get better, because the reality of what could happen (your baby not surviving), is not something you can face. You are in denial. You are sad. You are sometimes angry. You are helpless.

While Lily was in the NICU I met with a therapist at Lily's bedside, this was a tremendous help. I knew that I needed to talk about what had just all happened and work through what was continuing to happen with Lily. I needed someone to tell me that I was normal and my feelings were normal. My therapist said that I had Post Traumatic Stress Disorder. The sounds, smells and sights of the hospital set me off and reminded me of everything that had happened. It was hard to go back each day, but I had to see Lily.

While I was hospitalized and while Lily was in the NICU we received so much support. We will never be able to thank people enough. The day Lily was discharged I did leaps in our living room, I wasn't able to stop smiling, this had been the moment I had been dreaming of! We couldn't wait to examine her little body, introduce her to Boots and Beans, rock her in her room...we had been patiently waiting 44 days!

When she was finally home, I think everyone, me included, thought everything was going to finally be "normal". It was only then, when I finally had time to come up for air and think about what just had all happened, that my emotions overwhelmed me. And it was horrible. My baby was finally home now, and I was crying - about what? I wanted it to be over and get on with our lives. I blamed myself so much and thought that if I could have just done more, we could have lasted longer. I felt embarrassed that there was a certain way she had to be fed, that didn't look "normal". I felt embarrassed and sad that breastfeeding was such a struggle. I felt guilt that we didn't have a lot of people visit her in the NICU, but that cut into our precious time with her. Even though she was home....everything that had just happened wasn't going to just go away.

I used the support of my mother, my sister and especially Chris to work through my emotions about what had just all happened to us. When I went back to work, things felt worse. I wanted to be at home with my precious Lily and I didn't want to miss anymore, I had already missed so much. I had 17 weeks off of work and had burned all of my sick time that I had been saving for babies, but only had 8 weeks off with her at home - it wasn't fair. Stress at work wasn't something I could "handle" anymore, I was already handling too much. I was still a mess, why wasn't I getting better, when Lily was doing so good? I called my therapist up and set-up another appointment.

Through all of this I have finally realized, that it's okay to be sad about what happened. It has only been 8 1/2 months. We went through something traumatic. For a long time I wondered if I would ever be the same Shana everyone used to know? Would I ever be the goofy mother I had always imagined myself to be? Or would I be serious and worried all the time? Chris even said in our last therapy session that there was a time when he wondered if he would ever get his wife back? That broke my heart. But, I am starting to get back to the old me and I can feel it. I am getting better. And I know that I am not completely healed, but I will be in time. I might never be the same, this has definitely changed me, but I will be a new, improved version of my former self. I know that this experience, as hard as it may be, makes me a better mother to my daughter. I am grateful for every moment we have together.

Through all of this I know one thing for sure...Chris is the best person I know. He stood by me and always believed in "us". He even goes to therapy with me (even though I know he doesn't need it). He has supported me in my journey to get over all of this and has helped me come to terms with what happened. When some guys would have walked away because it was too hard, he didn't. We are a stronger couple than we were before and have a deeper love for one another. Before this we didn't know what "hard" meant. Lily will grow up surrounded by our love that is deeper and richer than it used to be, and that is something I am so thankful for.

If you have floated here from thebump.com preemie message board I post on, and are going through something like this, I just want to give you hope, that someday it will get better. And to those ladies on that board - thank you...for listening, giving advice, supporting me and others - it is the one place I know I can go when it seems like no one understands what I am going through. Thank you for making me feel that I am normal.

To help you better understand what we are going through, or anyone that has had a preemie is going through, these sites explain it well:

Grieving and Coping After the Birth of Your Premature Baby
Ambiguous Loss Best Blogger Tips
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