Sunday, December 23, 2007
Monday, December 10, 2007
I am never without it (anywhere I go you go, my dear.....)
- e.e. cummings
It has been exactly one year since this photo was taken- 365 days (148 spent without you home), nearly 20 pounds (you have come so far from 2 lb 14 oz), countless tears and worries, and endless joy and blessings for having you in our lives. I am so proud to call you mine. Anyone looking at you who does not know the story of your beginning would ever guess how far you have come. That is your biggest triumph. You still breathe a little louder than other babies and may be a bit smaller (however, not much fat boy), but I am sure that you smile more and laugh louder than the rest because I think you know. You know just how wonderful life is. You must- you fought so hard to live yours- and I am more grateful than I could possibly express that you have chosen us to be your parents, to be Ava's brother.
I am sorry and regret that you had to come out fighting. That my body couldn't hold you in longer like it should have. You have always been in a hurry to make your entrance in the world. You were a pleasant surprise (a surprise nonetheless) when we received the news that we were having you when Ava was only 10 months old and a surprise in the doctors office at 19 weeks when we were told that you may be arriving too soon. For eight weeks you worked your way into the world, always in a hurry. Finally, when you could no longer wait to meet us you arrived. You arrived to be quickly whisked away. With you went my heart and behind was left a grief that only someone with the world to lose could understand.
I regret that I only held you twice your first three months. Always afraid that by holding you I would hurt you. So many wires and tubes that it took three people, multiple feet of tape, and the coordination of performing a life-saving procedure, to get you in my arms. You spent so many days on the ventilator- coming off only to grow tired after fighting and fighting to breathe on your own and having to have that dreaded tube put back in place. Your daddy and I knew how important it was for you, us, our family, for you to make it off the vent that we were terrified of moving your tube even a milimeter and causing you yet another setback. I regret not knowing if this made a difference, or we just denied ourselves one of our greatest pleasures- holding you in our arms.
I regret that you were not able to sepnd your first Christmas, New Year's, Valentines Day, Mardi Gras, St. Patrick's Day, or Easter at home. I regret that you had to spend so many days in a plastic box only to graduate to a bigger bed, then crib that was not your own. No matter how many blankets, stuffed animals, or mobiles we brought in, that bed/crib- your entire world, was not your own.
I regret the IVs in your arms, legs, feet, and especially in your scalp. I regret the sticks into your fingers, toes, and heels (as many as eight in one day). I regret the scars left as reminders all over your little body. I regret the tube that was keeping you alive hurt you so much. I regret the numerous medicines, procedures, tests, CAT scans, MRIs, ultrasounds and surgeries that you had to undergo.
Despite all of these regrets on my part, you still allow me to be your mom. Despite all of the things you have undergone, despite that I was unable to protect you and keep you safe, you are still my son.
Has the passage of time eased any of the hearthache I felt for you? I don't think so. I will always tear up at the thought of what you have endured to be here. However, with each day, each pound, each inch, each milestone that you achieve, your days spent in the NICU become more distant in my thoughts. You came into the world fighting, fought bravely for 148 days to come home, and continue to fight. One only needs to look at you, see your smile, or hear your laugh to see that not only are you making it- you are thriving. You are remarkable. You are my son.
Happy birthday, Eli, my heart.
For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.
- JEREMIAH 29:11
Thursday, November 1, 2007
Thursday, October 25, 2007
Last Wednesday, Eli had his latest bronchoscopy. Daddy and Eli had to be at the hospital for 6:30am, and the procedure was at 8:30am. Eli was put under general anesthesia, so he slept through the procedure. Vic said he did great. The results were pretty good- no additional surgery is recommended at this time. His airway looks good. His vocal chord had not improved a whole lot- still banded down with scar tissue. The pulmonologist believes that as Eli starts to talk more, the scar tissue should loosen, hopefully, freeing the vocal chord. The vocal chord is what causes Eli's noisy breathing- air passing through runs into the vocal chord, as it cannot move out of the way because of being held down by the scar tissue. The dr feels that laser surgery at this time is too risky (significant risk of further damaging the vocal chord- permanently), as Eli seems to adjusted have his breathing to work around the vocal chord issue. So, good news, but now we just have to give him more time. A bacterial infection was discovered in his lower airway during the procedure, so he is now on antibiotics (again) but not showing any outward symptoms, which is very good.
Then, this morning, he had his final flu shot (you have to have two your first year). He did the lip when the nurse gave him the injection, but amazingly enough, never removed the bottle from his mouth and kept sucking. Nothing comes between Eli and food. Which is what he wants now......more updates later.
Wednesday, October 3, 2007
Friday, September 28, 2007
Unclue Benny came to visit. Ava wore her Playboy shirt he and Aunt Camille got her.
Friday, September 21, 2007
I think I first became aware of my "mommy instinct" when I was pregnant in the hospital with Eli and went into full labor after receiving steroid shots at 24 weeks gestation. The doctors and nurses thought a delivery was inevitable. Truthfully, that thought never crossed my mind. I spent three days in Labor & Delivery, but knew I would be leaving there pregnant (maybe the drugs clouded my thoughts a bit). Again, at 24 weeks, when I was advised to remove my cerclage because of the high risk of infection due to my membranes rupturing, which would have led to an immediate delivery, my "mommy instinct" told me to wait. I understood that there was a risk of infection leading to the death of Eli, and possibly myself, but mommy instinct told me to wait. "Mommy instinct" was still there at 27 weeks when Eli made his arrival. Not once did I ever think that I wouldn't be bringing my boy home. Though Eli had a much more difficult NICU stay than anyone could have anticipated, I knew he would be coming home. That doesn't mean that those 148 days that Eli spent in the NICU I didn't worry. I worried every minute of every day, crying more than I ever thought possible. As difficult as it was to leave him there every day, I knew he would eventually be coming home to us.
The worrying did not end with his homecoming, just a new set of worries replaced the old. As each day passes though, my "mommy instinct" tells me that things will be okay. We are slowly progressing toward Eli being "normal" but definitely getting there. Every time I look at him and he gives me that beautiful smile, my "mommy instinct" tells me that things will be just fine.
Which leads me to what I hope for. When you have a child that faces more than your average challenges, I think you spend some amount of time starting thoughts and sentences with "I hope". Some of my "I hope" list for Eli includes, in no particular order: 1. I hope that Eli's breathing quiets down, so that I don't have to hear comments like "oh, poor baby", 2. I hope Eli's breathing quiets down before he understands comments like "oh, poor baby", 3. I hope we make it though Eli's first winter home without any major illnesses or hospital stays (my "mommy instinct" says that all will be fine), 4. I hope I love, hold, and kiss Eli enough to make up for the four and a half months he spent in the NICU and not being held, 5. I hope Eli doesn't remember his time in the NICU, 6. I hope the scars covering Eli's body fade enough with time that they are not a source of future questions, 7. I hope that Vic and I some day forget the NICU, 8. I hope that some day soon that sentences spoken with Eli's therapists and doctors don't include "compared to a normal baby", and 9. More than anything else, I hope that soon, we and everyone look at Eli for the sweet, silly, beautiful baby that he is and forget that he was born three months premature.
Sunday, August 26, 2007
Ava had a great time. At the after-party, we stripped her down and let her and a buddy swim and bounce. Daddy made a HUGE mistake and allowed Ava to play during this time in her actual birthday suit. She proceeded to poop in the pool and yard. Probably spending too much time with the dog.
Wednesday, August 8, 2007
Sunday, July 22, 2007
The good news is that I love my family even more after being trapped in our car and then our condo for hours. We are fun. We laughed, played, watched TV (e.g. Dora, Cars, Cinderella, and Mickey Mouse), cooked, and drank (us, beer,Ava, juice). We are beginning to officially feel like a normal (but, fun) family. Eli is off oxygen and almost all of his meds, so things are good. We still look at him and can't believe he is the same baby that weighed in at 2lb 14 oz and spent three and a half months on the ventilator. Now, we see a 14 pound baby that laughs and is developing a real personality. Also, other good news is that no one got sunburned.
Ava was such a blast this trip. She wore her floaties at all times and got in and out of the pool completely on her own. Her being able to get in and out of the pool, however, was tiresome. She runs really fast. She ran around and around the pool, really fast. She chased people that weren't even running from her, yelling-"I get you" and cracking herself up. She even liked the beach- loved getting knocked down by waves with her daddy. Eli was not so crazy about the pool, which is understandable why a 4 month old would not be comfortable in a big cold bath tub with other people when he is just getting used to his blue baby tub. However, not once did he cry- just kept a look of fear on his face. Such a good boy.
Well, we're home now. The vacation is over. Ava and a pen were a quick return to reality. And she is back to her favorite pastime- TV, though not quite ready to leave the beach behind.
Monday, July 2, 2007
Monday, June 25, 2007
Wednesday, June 20, 2007
Then, there is my sweet boy. He slept eight hours straight last night, then woke for his breakfast and right back to sleep in his swing. He is such a sweet, sweet boy. He has now been home from the hospital for two months. Still, not as long as he lived at the hospital but we're getting there. He has made such progress in the past two months. It is like he is a different baby. Though, he is still on all of the same meds and oxygen at night, he is eating like a champ. He is now 3 months adjusted (six months old, but adjusted for his prematurity) but eating like a six month old. He definitely has his sister's appetite. And yes, we have spotted some fat rolls! He is approaching 12 pounds, a long way from his 2lb 14oz at birth.
So, this is our first official blog post. Maybe boring to some but never a dull moment for us. As every parent knows, anything that your child does is the cutest, smartest, and most interesting thing there is. Prepare to be amazed.