Tuesday, July 29, 2008
First, let me clarify that I am over it. Really. Please don't sensor your words in my presence or avoid talking to me for fear of ending up on my blog. But, this evening, I have this desire to share with you those stingers that will not leave my memory. Perhaps knowing I’ve charted them will send them from my brain making room for far more important information.
The day we were taking Elijah home from the hospital the very first time, the discharge nurse was required to walk us clear to our car and watch us strap our newborn in the back seat. It felt as though we had to pass the test (which we did, by the way). I remember so clearly as she and I stood waiting for David to fetch the car she said, “Well, with most babies you have to worry about their arms and legs getting in the way, at least you don’t have that.” I hope you get how absurd her comment without my further explanation, but I’ll share my emotion anyway – NO, I AM NOT IN ANY WAY RELIEVED THAT MY KID CANNOT GET HIS ARMS AND LEGS IN THE WAY OF A FEEDING OR DIAPER CHANGE OR HOW ABOUT AROUND MY NECK. Oh, how I wish...
A friend of mine visited me in the NICU and said, “I sure don’t envy you.” I’m not even sure what this friend meant by that. Geez, I’m not even in the running for that award.
The last one I’m going to share and by far the most hurtful to me. Elijah had surgery to place his feeding tube. After the surgery the careful anesthesiologist refused to take him off of the breathing machine and Eli was admitted to the Pediatric ICU unit in critical condition. David and I were walking in a semi-daze up to where we were told we could find our son. We were buzzed into the PICU area and we wondered up to Eli’s room. We found about six nurses around his bed. I found this REALLY odd, but this was my first time into the PICU. The nurses were discussing Eli and questioning his need to be in PICU. As we came within ear-shot the CHARGE nurse said as she held up Elijah’s blanket to show off his body, “Look at all of this.” She didn’t say it with a hint of compassion or care, but rather not wanting anyone in the room to miss the chance to gawk at MY KID. An embarrassed member of the nursing staff whispered, “Here are the parents.” The charge nurse then turned to me and introduced herself started the orientation process with David and me. She didn’t acknowledge what she said. I assume, to this day, she either thinks we didn’t hear her expose our kid and flat out make fun of him or she doesn't care and treats all of her families with complete disrespect.
I guess I’m feeling pretty feisty tonight. But the most important thing for you to know is that my skin is much, much thicker than it was in the early days. I do not let such things get to me. In fact, I don’t think I would walk away without addressing the sheer absurdity of each without retort. I can assure you there have been others since this time, but I just cannot recall them. I actually have made a conscious decision not to be bothered by either insensitivity or sheer carelessness.
Nothing more to “get off my chest” I suppose.
Thanks for indulging me tonight.
Saturday, July 26, 2008
Yes, that is a personal DVD player that apparently Elijah is snuggling with. He loves watching movies. My guess is that when Eli did wake from this slumber, he realized Clifford was out of reach and he began to holler, "Who took Clifford and left me this DVD player?" David and I both missed the outcry, but I betcha that sums it up.
Elijah is hanging on to his 13 pounds. He's sitting up more and getting stronger daily. Such a trooper!
David and I are still considering an "escape" with Sophia. The fact is that life with Eli is all work and no play. To add play to our lives takes drastic measures and a lot of planning, but we'll do what it takes.
Love you all,
Saturday, July 19, 2008
Elijah is enjoying eating peach puffs (a baby food item). He reaches out for them and works diligently to get them in his mouth one at a time. So cute. We’re still working on finding other things he will eat by mouth.
He is still sitting up for about 2 minutes at a time. He actually finds much fun in the falling over so getting him to sit up for longer periods of time is proving challenging. Elijah finally enjoys bath time! For his entire life, he has screamed through bath time, but the new nurse has implemented a new method and he’s starting to love it.
Thank you for your continued prayers for our sweet baby boy!
Sunday, July 13, 2008
I am proud to announce that Mr. Elijah Ramirez successfully sat on his own for 90 seconds. I know, I know, 90 seconds doesn’t seem like very long, but for Elijah it is a huge accomplishment showing his bright future.
Elijah has many obstacles to overcome in a successful sitting experience as his legs are so short he has to really concentrate on balancing. I am SO proud...if that wasn’t obvious.
We are working diligently on getting him to eat by mouth. He still struggles with this, but we’ve come a long way because he doesn’t gag anymore, he just spits it out of his mouth in disinterest. We’re trying to introduce new textures and tastes to find the combination that will tempt his taste buds. He is exactly 12.93 pounds and if you were to ask my dear husband he’d probably go ahead and round that up to 13. Elijah had originally reached the 13 pound mark right before his skull surgery in January. We are just thrilled to be back!
We are still on track for Elijah’s next surgery to be in Shreveport early September to centralize one or both wrists. This will give Elijah greater control of his hands.
Elijah loves toys. He loves to explore something new that is just his size. Elijah also has some favorite words: go, daddy (of course), Sophia, upstairs and outside. He flares with joy when he hears his favorite words.
Elijah’s Sooner Start team (Oklahoma’s early intervention program) is searching for a mobility solution for Elijah to give him some freedom. I see it in his eyes – he wants to go! We are excited about the possibility. I’ll keep you posted on this front.
David and I are exploring the idea of taking Sophia on another vacation before Elijah is old enough to really despise the idea of being left behind. David and I truly cherish our time with Sophia and know it is very important as we near a season of surgeries for our precious son.
Please keep praying for Elijah!
- Pray we keep getting great reports on the vision and hearing fronts.
Pray that Elijah’s elbows will reach full extension (he’s made progress since my last request for prayer here).
- Pray that Elijah’s arms and legs will grow.
- Pray that Elijah will grow in weight and height.
- Pray that Elijah will begin to communicate with us more fully.
- Pray for Elijah a mobility solution both short term and long term.
- Pray for Elijah's development catch up.
- Pray for Elijah’s bright future!
With love and great appreciation,