Thursday, May 1, 2008

Update from recent appointments....

"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. He chose to give us birth through the word of truth, that we might be a kind of firstfruits of all he created." James 1:17-18

This Monday and Tuesday we were out and about all day at doctors appointments. On Monday, we saw the Pediatric Pulmonary doctor. This was the first time to meet her; she was very thorough and I was really impressed with her. It's hard when we see a new doctor because I have to reverberate Coy's entire NICU stay. They do have most of the info in their computer system, but I guess it's easier for them to ask! They always seem impressed when I know all the specifics, but trust me, those are things that are permanently etched in my memory!

She listened to Coy's lungs and said they sounded "great." We also hooked him up to the pulse ox and waited for him to fall asleep on room air, he sated 98% most of the time, which was awesome! I told her he's off the oxygen majority of the time and I do frequent spot checks on his sats. She would prefer he stay on the oxygen at all times until he hits the 10lb mark. Her concern was not his saturations, however, being off oxygen, he is burning more calories to breathe and therefore, may not grow as fast. She's the specialist, so I will listen! He really hates the cannula in his nose now, so I have to fight to keep it in. Let's just say most of the time, he pulls it out and there's nothing I can do about it!!

She did order a chest xray, which we had done. The last xray from the hospital was done in February and it was not pretty. So far, I have not heard the results of this, but in this case, no news is good news. We will see her back in 2 months and, hopefully, at that time we can d/c the oxygen all together!

On Tuesday, we saw the Pediatric GI doctor. He was also great! He did not feel that Coy needed any testing at this point, ie Swallow study, Upper GI, etc. He liked his weight gain, and current medications, so we will continue on with everything the same. We see him back in one month.

I also took him to his regular Pediatrician for general check-up and to evaluate his right leg. I noticed sometime last week that his right leg is more stiff than the left. His right foot is turning inwards, while the left one is turning out. He kicks the right leg and majority of the time, it's easily moved, and he has good hip flexion, being I'm overly paranoid about everything, I wanted another opinion to see if this was normal. This alarmed me because a) it can be a sign of CP (cerebral palsy) and b) I didn't want it come time for him to crawl and for some reason he couldn't due to a deformity with his right leg/foot. Our Pediatrician evaluated him and said everything looked okay. I have been exercising his legs and watching they way he is positioned more closely, and I've already noticed it's less stiff and his foot is turning outward more. However, I am also going to call ECI to take another look just in case!

Coy also began tracking objects! I noticed he was more focused on my face and he even smiled at me! It was such a magical moment!

Please continue to pray for Coy's eyes. We see Dr. Hittner again in one week. Although, I am asking God to heal his eyes completely without intervention, I am calm in the fact that God has brought good out of every bad. He's in total control, at all times. If Coy's ROP does return, there is a reason for it, even if it's only to just praise Him!

I had a hard day this week accepting that Coy is going to have more issues than most babies/kids. I want him to have every opportunity in life to thrive, be happy, successful, and healthy. God is reminding me that Coy is perfectly knitted together by Him, and for that, I am so thankful! He is such a blessing!


The Van Fam said...

You are such a wonderful mommy and such an inspiration!!!

Anonymous said...

You are so on the ball! Seriously, it will help Coy so much! I think our preemie path would have been different had I had all those specialist in place from the very begining, instead of at 6 months.

I could really relate with what you said about coming to terms with your child being on his/her own time-table with his own set of issues. Baby/toddlerhood has looked so different for us. My 26 weeker didn't crawl until 13 months and walk until 22 months. She had really weak tone in her trunk so she was a bit behind-sensory, reflux and feeding issues didn't help that. But for us, all those milestones(like tracking, smiling, sitting, crawling) meant so much more to us because we knew how much she went through to get there. We didn't have a playgroup or mothers day out, we had doctor appointments and therapy. It wasn't until she was 18 months that I truly accepted the fact that God had her own a different path than most kids. It was a huge process for me of letting go b/c I kept wanting a "normal" experience for both of us. Now, if it wasn't for her feeding tube and weak immune system, she would be totally normal and caught up (she is 2-1/2 and weighs 28lbs). I hope that encourages you. You are doing a fantastic job!!! My husband and I keep Coy in our prayers often.

God Bless,

Amanda said...

You deserved that little smile after everything you've been through with your little man! It's like a reward when your kid smiles at you.

Creative Escape said...

Such fantastic news! Thanks for sharing with us. Coy will remain in my daily thoughts and prayers.



Amanda Rooney said...

Ann Marie,
I have written to you from time to time. Through my sister I know Amanda Jones. My fouth son, Ethan was a bit early and spent some time in NICU. I've related to many of your posts. However, one that I don't often write about is my son Connor. Although Connor was full term and a VERY healthy baby (weighed 9.12 at birth)he has had MANY challenges. We went through a year of physical therapy beginning at four months. He had munltiple ear infections and has been through 3 sets of tubes. At three we started occupational therapy that lasted a year and a half. We was "diagnosed" as having Sensory Integration Disorder. Basically it is sensory overload. He is six now and almost completed Kindergarten. He is really doing well and I see God's work in him daily. However, there are still days when I question, "God, will he ever be normal? Will there ever be a time when he isn't made fun of? Will there ever be a time when people won't question if he is autistic? or think something is "wrong" with him?" But Ann Marie, even though he is different, I love that boy with every ounce of my being. And just like with preemies, I am overjoyed at some of the obstacles Connor has overcome. And I will probably cry more than any other mom at Kindergarten graduation. Because to some degree, my son has gone thru so much more than most of the kiddos in his class.

I wanted to share all this with you just to say that your feelings are normal. And you are doing a phenominal job! And as you know, as the mother of a preemie, your prayer life has forever been changed!!! Maybe God lets us go through these things to keep us on our knees!

Hang in there and keep up the great work!

Ann Glowacki said...

Ann Marie,

Good news with all of your "specialists!" I'm so happy that Coy is doing so well and getting so big! That first smile is the most amazing thing... for me it was a 2am while I was feeding Jaxson and I started crying! I love the photos of Coy with his cousin... too cute! I will keep praying for Coy that he continues to do so well and that his eyes improve. Hopefully Dr. Hittner won't have to perform her "magic"! Take care and I hope many more smiles come your way!


The Anderson Zoo said...

I honestly do not know how I came across your blog but have kept up with how Coy is doing. Our third child Cooper was born at 31 weeks and spent weeks in the NICU so I can understand what you are going through and some of the emotions that you feel. He does have some minor health issues but I too when he was younger (he is 4 now) remember thinking and asking, "Is he going to be normal?" He will begin Pre-K this year and feel like he will struggle some but he is a miracle. The hardest thing I think I have ever done was say, "OK God, he is yours" especially when I was not sure if he would live or die. God has a special plan and I tell Cooper's story EVERY chance I get because it tells of God's peace, love, and faithfulness.
Coy is precious and God does have a great plan for him. His life will ALWAYS point back to God. What a precious testimony.
You are a great Mom. God specifically chose you to be Coy's Mom. Isn't that an amazing thought. Keep up the good work.

Esperanza said...

He is such a miracle... I know you feel blessed. we keep sweet baby Coy in our prayers daily... You'll get through this soon.. I can tell that... Just hang in there girl... you have such a beautiful family...
We sent our love and a big hug...
Esperanza Orlando & Liam Penaloza
ps. in one picture coy is saying me alone..that was funny