Friday, February 18, 2011

Hope

I love this idea! Franchesca from Small Bird Studio has created a blog hop. It will be hosted on the 19th of every month. Its purpose is to clebrate hope. The promises, things, people, places, memories, signs, anything that brings us hope.

This week's question:

What small {or big!} miracles have brought you hope lately? I hope you'll share a piece of your journey by joining the blog hop :)

From the start of this grief journey hope is what allowed me to survive. I mentioned it in a post recently. "In those first few weeks my husband and I talked a lot. Planning and talking about the future seemed to help. It gave us a lifeline of hope to cling to." At the time I was not sure it would ever be possible to be happy again. All I could do was hope that someday in the future we would again feel joy.

Our son JJ kept us going. He supplied us with a reason to live when it felt like we had died. When we were expecting JD it gave us hope for the future of our family. He has brought some new energy and lots of additional love to our home. We are grateful and blessed to have him here.

Very slowly over that first year of grief colors started to show through again, aromas smelled sweet again, the taste came back in food...I laughed. At first it hurt to laugh. Then I felt guilty for laughing. Eventually those feelings faded. It felt good to be able to enjoy parts of life again. Although these senses made a comeback none have returned in their original state. It has been 21 months. I hope one day to see the world and its beauty as I once saw it.

"When great souls die, our reality, bound to them, takes leave of us. Our minds formed and informed by their radiance, fall away...And when great souls die, after a period, peace blooms, slowly and always irregularly. Our senses, restored, never to be the same, whisper to us. They existed. We can be. Be and be better. For they existed" -Maya Angelou

As each of these senses returned I worried Janessa was slipping further away from us. I was blessed however to receive some beautiful signs from her. These brought some comfort to me and let me know she is still around me...

While picturing her face a pure white feather floating by me, glancing up when my heart is heavy and seeing an angel and a butterfly in the sky...


...a butterfly flying around us on the beach, a hummingbird flying up to our heads as we broke ground in Janessa's garden, while standing at her grave asking for a sign feeling a warm breeze that wraps around my body like I've never felt before, capturing the faces of babies in the clouds on International Babylost Mother's Day with two other babyloss mamas...(all three of us became pregnant shortly after)...


...thinking of her and in the next moment having a beautiful butterfly knock on our window in the middle of the night...



...a sense of pure peace that fills that my soul every so often. In those moments I know she is close by me. I can feel her. Those moments give me hope that she is not completely gone. She may be gone from sight but not from my heart. I beleive she is in a place far beyond my comprehension. I beleive she can feel the love I send to her each and every day.

I hope one day to see her again. I beleive I will.

I read a quote soon after Janessa passed. It gave me a perspective that I cling to. I hope that one day she returns to my arms. The hope that I will see my daughter again makes it easier to continue on.



"They say that time in heaven is compared to 'the blink of an eye' for us here on this Earth. Sometimes it helps me to think of my daughter running ahead of me through a beautiful field of wildflowers and butterflies; so happy and completely caught up in what she is doing that by the time she looks behind her to see if I am there...I will be."



Thursday, February 17, 2011

Update on JD

Because so many of you are so sweet and have cared enough to check in with me about JD...

JD is doing slightly better.

We have had two doctor appointments since my last post regarding the ER trip. She wanted to keep a close eye on him in case he started to get worse. On Friday January 11th he weighed in completely naked at 9 lbs 11 oz. Four days later on the 14th he weighed in at 10 lbs 12 oz! He definitely hit his 6 week growth spurt! He did that for his 2 week spurt as well.

He is a champion eater. He eats 5-6 oz every 2 1/2 hours during the day. Every 3-4 hours during the evening and night. He is on special formula due to his intolerance of milk based and soy. In the begining he didn't even tolerate breast milk very well. He eventually was ok with it but was extremely gassy. There was talk of me cutting out all dairy. I couldn't do it. The formula he is on now is broken down more than regular ones. Its considered "predigested". His body basically does not need to do anything but absorb it so it does not hold him very long. This is why he eats so often during the day. I really admire all you breastfeeding mommas. I couldn't hang! Yup. I'm a drop out.

He has now been sick for almost three weeks. Thankfully he has been free of any wheezing or temperature since the start of his cold. He is still congested but it is now very loose. He has a little cough but I think its from the post nasal drip. He seems to cough to clear it out. He cannot lie flat or he seems to be overwhelmed by the amount of mucus. He is taking his time bouncing back from this. I wish he would just feel better. I hate to se him sick. He is just so little and it worries me. I definitely would never intentionally plan a winter baby. Too many germs during the cold and flu season flying around. My son brings home the schools germs & both my husband and mother work in the school system as well.

Concerned big bro

Since day one JD has not been comfortable lying flat. We have had to have him inclined all the time. He spits up small amounts very frequently and we believe he has some reflux going on. His adversion to lying flat and possibly his panting episodes could be from him being uncomfortable. His panting has been happening less often the past few days which is nice. If the spit up continues we will deal with the reflux issue in the next week or so.

He is a restless sleeper because at night we lay him flat in his bassinette. We were given this cosleeper contraption that has a slight incline and we have been trying that out the past week or so. He is sleeping a little better.

His doctor thought it was a real possibility he may end up hospitalized. She had another little baby with the same original symptoms and he ended up admitted. She was reassured at our last visit so we do not see her until his 2 month check up which is scheduled 2 weeks from today. He is already 7 1/2 weeks old!

On a sidenote I am happy to share that JJ made honor roll for the second time! :)

And for those who faithfully follow my blog, little Eleanor is home safe & sound from the NICU!

Wednesday, February 16, 2011

Monday, February 14, 2011

In Honor of Valentine's Day

I wanted to take a few minutes and write about my amazing husband. I have only written about him a few times. (Here & Here.)

I have been in love with this man for over 13 years. In 1997 I was 14 and a freshman when we really met for the first time. We had been introduced once before in passing. He was an upper classmen but ended up being in one of my classes. I remember watching him walk in the room and being surprisingly happy that he was there. He sat next to me in the back of the class. I spent the rest of the year trying not to fail that class from distraction.

A couple weeks after school started that year & on my fourteenth birthday a friend of mine asked if I would tag along on a trip to the mall with some friends. My husband was along for the ride as well. We ended up going off on our own that day and there were sparks from the start. We had a rather complicated first year until we became an official couple almost exactly a year later. I always dreamed that I would marry my high school sweetheart.

November 1998 (I think)
There are times I long for the carefree days we spent together as teenagers. The days before responsibility with only the wonder of how we should spend our day together. The days before bills, real jobs, adulthood....grief.

In 2002 we moved in together and in 2003 our son JJ was born.


In December 2007 after 9 years together we were engaged. Finally


We were married 10 months later on October 18th, 2008.


We found out a couple weeks later on our honeymoon we were pregnant with Janessa. She was our little wedding night baby.

The rest you know. We had one heck of a first year of marriage.

May 9th, 2009
5 days later....

May 14th, 2009

Oh how quickly life can change.
I read about a study done in 1985 which found that up to 80-90% of couples who lose a child get divorced. I found that piece of information very shortly after Janessa died. It terrified me. Although, I do find that to be an extreme figure and am almost positive it is not that high. The thought of another possible loss in my life was something I knew I could not handle. I was worried about the coming weeks and months that layed ahead of us. I had no idea where the depths of grief would take us. I worried it would take us apart. At that time I was too broken and emotionally weak to do anything precautionary to make sure it did not.

We both grieved differently. What I believe held us together was our acceptance of each other's grief. We did not hold any expectations of what our grief should be like or how we should each act. We communicated and supported each other. I am immensely grateful for the relationship we have. He really is my best friend.

To say I grieved hard would be an understatement. To this day, almost 2 years later I am still grieving. Intensely at times. I have now accepted from endless readings that I will grieve for the rest of my life. It will eventually be subtlety intertwined in our lives..but subtlety is far in my future.

I am relieved to say that Janessa's death brought us closer together. It showed us how strong our relationship was. I found his presence to be incredibly comforting. I remember not wanting him to leave my side for about a month. I would beg him not to leave when he had somewhere to go. He ended up taking quite a few weeks off of work and I was grateful for that. We spent most of those days together. We ventured out to distract us. We talked a lot. Planning & talking about the future seemed to help. It gave us a lifeline of hope to cling to. I took solace that he was the only one in this world that knew my pain firsthand. He was the only one who loved her & missed her in the way only her parent could. I found my only peace in his arms and the hugs from our son JJ.

I had always imagined that the loss of a child must be the most stressful and emotionally painful event a human could experience. I now personally know this be true. It was always my biggest fear in life. I had thought about it many many times. It would make me physically ill. There are still times I cannot believe we were handed this card. I never thought I could survive the death of my child. I also never thought I would have to. The fact is your forced into survival mode. To a large degree a lot of me did not survive it. There are gaps in my soul & spirit. Those personality traits died the day Janessa did. I hope that one day the holes will be repaired. I am sad JD will never know who I once was. I liked that person better.

What I am grateful for is that I have had my husband by my side. I am positive I would not have made it without him.

I love him.

I love him for loving me through all my flaws. I have plenty. I love him for accepting me for who I am. I love that I can be my complete self around him and never fear judgement. No one knows me like him.

I love him for the way he treats me, the way he loves me. The way he listens to me babble on and on. (Or is he listening?) I love him for the father he is, the person he is.

I am not sure how I became so lucky. I sometimes do not think I deserve him.

Tuesday, February 8, 2011

JD's first trip to the ER

JD has already made his first trip to the ER at 5 weeks 6 days old. Hopefully this will be his last. Or atleast for a very long time!

He has had a stuffy nose absent of a fever for about 2 weeks now. He has been eating normally and still has his alert times throughout the day. He does seem cranky at times but I figured that may be due to his stuffy nose. He has always done this little "puppy dog" panting while breathing occasionally. He usually does that when he is hungry or irritated. On Sunday he had been doing that almost all day. By late afternoon I was getting worried. I happened to glance down while he was sitting in his bouncy and noticed around his mouth was slightly blue. I scooped him and brought him into a brighter lit room. It immediately went back to normal coloration. My husband came home shortly after and after expressing my concerns we decided to call the on call doctor. I had already planned on calling the pediatrician in the morning regarding his rapid shallow breathing but the momentary discoloration around his mouth made it clear we could not wait. I had timed his breaths per minute twice and got a reading of 44 bpm and then 50 bpm. That's in the normal range but slightly elevated for his age.

I did happen to notice afterwards that when we remove his pacifier the area around his mouth is slightly blue but once removed the skin turns back to normal. JJ never used one but I was pretty sure that it wasn't normal.

After discussing JD's symptoms with the on call doc he said it would be best if we brought him to be evaluated. I agreed. We fed him a quick bottle and then I left to the ER with him while my husband stayed with JJ. I arrived around midnight.

The nurse took his temperature and it was normal. He then did a pulse ox and it was at 99%. When the doc came in he looked him over and listened to his breathing which sounded clear. He then ordered a chest xray to rule out pneumonia but was pretty sure it was nothing serious and we would be good to go home.

After the xray I must have waited an hour and a half. I knew something wasn't right but desperately tried to fight off that feeling. When he eventually came back in he said that he had the radiologist take a look at the xrays. He said that everything was structurally ok but the radiologist thought that it was possible JD had viral pneumonia. He stressed that they were not positive. NO JOKE. They were not sure! He then went on to explain that since it wasn't bacterial pneumonia that it couldn't be treated with antibiotics. He said JD should get better on his own and be just fine. He told me to follow up with his pediatrician the next day. I was baffled. As those words came out of his mouth that JD may have pneumonia I felt as though someone had pushed me over. I distinctively remember leaning to my left and feeling as though I was not in my body. I had heard him because I knew what he said but could not play back his words in my mind so I had him repeat himself. When it registered that they didn't know positively I was furious. How could they send a six week old baby home with such a diagnosis!? Of course he didn't send me on my way until responding to one of my remarks that if it was his six week old he would be scared as well. That was reassuring.

It was 3:30 a.m. when they started discharging us. I took JD home and starting counting down the hours until we could see his doctor. I arrived home around four a.m. and curled up on the couch with JD and just cried. I was terrified. I have had major anxiety ever since accompanied by chest pain. Terrified is understatement on how I am feeling.

When you have lost a child everything that could happen to one of your living children becomes a more real possibility. As my friend Amanda stated a few weeks back: "About statistics: When you have been a one, no number of the other side looks big enough." I have learned first hand that "it" can happen to us. Thoughts of something happening to JD and JJ constantly fill my mind. The fear is always present. Add in a possible pneumonia diagnosis and what runs through a bereaved parents mind is everything they have been through in the past repeating itself.

Later that day I brought JD to see his doctor. The nurse took his temp which was fine and did a weight check. He now weighs 9 lbs 3 oz. That doesn't surprise me with the way he eats! When the doctor came in she did another pulse ox on his foot and his oxygen level was at 100%. What a relief. I told her about my experience in the ER hours earlier. She said she received the xrays and she did not see pneumonia on it. I was extremely  relieved. I still cannot shake the what if though from my gut. What did that doctor think they saw? What if they are right... She went on to tell me that she did not understand why if they thought he had viral pneumonia why they would send us home. She told me that they treat it the same as bacterial pneumonia just to be on the safe side. She also said there is no way to tell for sure from an xray what type of pnemonia it is. Why I keep going to the hospital closest to our home for ER visits is beyond me. Next time we are definitely taking the extra 25 minute drive to the hospital I delivered JD at. Maybe there will know what the hell they are doing.

She went on to check his ears and listen to his lungs. All were clear. Since his oxygen level was fine she thinks that the skin around his mouth being so thin plus the sucking on the paci may cause the discoloration. She did notice that on the bottom part of his ribs when he is breathing the skin is slightly retracting. She said to keep an eye on it and if the upper part starts to do the same thing to come in. She also said to watch for other symptoms of him sleeping more, not eating as much, increased fussiness and worsening of his breathing. She did express concern about RSV going around right now. She said to call with any change and had us make a follow up appointment for Friday.

It did not help to learn this morning that little miss Eleanor that I spoke about in my last post is in the NICU with RSV. Thankfully she is doing well now.

This is all so scary to deal with.

Today JD has been doing ok. He is still having episodes of his panting type breathing but there has been no other changes. He has been slightly fussy and did not sleep as much throughout the early part of the day. His appetite though if anything has increased. I wish I could put him in a bubble until spring.

I have not been getting much sleep and know I will not be able to relax until he is feeling 100% better. If it wasn't for the angel.care monitor we use I probably wouldn't get a wink.

Please keep him in your thoughts and prayers for a speedy recovery and also little Eleanor until she is home safe and sound.

Monday, February 7, 2011

Baby Shower


On December 5th my mother hosted a baby shower for me with the help of my sweet friend Julie and cousin Jen. It took me a long time to decide whether or not I wanted a shower this time around. You can read about that here. But in the end I came to realize that JD's arrival was definitely something to celebrate. I worked very hard through his pregnancy to grasp at the joy amongst all the worry and stress. We had so much taken from us and I didn't want to continue to let joy be sucked away.

It was a great shower. Good food, great company, games and wonderful much appreciated gifts. We are still stocked up on diapers and wipes for atleast another two months.

A special treat was that one of my friends in real life, Amanda, who was also expecting her rainbow baby was able to make it. (You can read her story here.) We attended the same school and played field hockey together as well. And for kicks here is a throwback pic:

I am #11 & Amanda is on the far right. My cousin who helped with the shower is #14
SORRY GIRLS! LOL
Amanda and I always got along but were never close. In late February 2010, nine months after Janessa died, I learned her daughter Stella had just passed away twelve days after birth. Even though we had not spoken since high school except some brief FB interactions, I shed many many tears for them upon hearing the news. I knew the pain they were feeling and I was so saddend that she had embarked on this journey of loss. I reached out to her shortly after. Since then we have kept in close contact and it has been nice to be able to talk to someone who understands 100% and that I also knew before Janessa's death. My shower was the first the baby shower she attended since losing her daughter so I was touched that she was able to come. Here we are with our bumps.


I am ecstatic to announce her rainbow Eleanor arrived on 1.25.10.

Isn't she adorable?
Even though this shower was for me it was only the second shower I went to since losing Janessa. We attended the shower of my husband's godson last summer. I could never have attended one for a little girl and would probably still struggle through one today. I was a little overwhelmed at first and it took a good hour for me to relax enough to enjoy myself. I am not sure I hid my uncomfortableness very well. In the end I had a great time and we are so grateful for all the wonderful items we received for JD.

My cousin got me a beautiful pandora bracelet with all 3 of my children's birthstones. I am always so touched when anyone remembers Janessa and includes her. Her boyfriend also got us one of the most delicious cakes I have ever had. It was so cute as well.


I appreciate all the work that was put into the shower. Thank you ladies!

            My Momma and I                                    My cousin and I



Somehow Julie managed to escape the photo op! But here she is helping me with the gifts.


I did have two other helpers as well. My niece and son :)


I finally finished up some thank you cards and would like to apologize for them being sent out so late to everyone. Just know I was so happy to see those who came and it meant so much to have you all celebrate this little miracles arrival. I truly believe that each baby that makes it here safe and healthy is just that...a miracle.


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