Wednesday, May 19, 2010

Weeks 39-40....Good & Bad...but FINALLY happy!

So I know there have been larger and larger gaps between my postings so when I post there is a lot of report!...Please bare with me!

So, after my last post Ayden had another GI appointment in which they told us to go down on his calories to 26cal instead of 28cal. They said Ayden was "gaining weight too quickly now". He had went from well below the growth chart for his adjusted age to being in the 25 percentile within just about a month. Well, we tried it for a week and when he got weighed 8 days later he had only gained an ounce in that period of time. I have not since talked to his GI doctor but consulted his pediatrician and have placed him back on the 28cal. I am not sure that his GI doc did any calculations when she suggested putting him back down to 26cal but his pediatrician explained to me that based on the small amount of volume he is getting that 26cal @ only 24oz a day is only meeting the bare minimum for him to sustain his weight. I hate going against what the specialists say at times but I know how Ayden works with weight and I am not about to let him get back into one of his slumps. He does have another GI appointment on Monday though so things will probably change again!

On the 6th Ayden had an EUI with Opthomology. As you know, we were very nervous and always have it in the back of our minds that he may need to return to Michigan. But this exam actually brought good news for once! The Optho told us that both retinas were now attached, no blood was evident in the eyes, and the glaucoma was beginning to resolve. He also said that talk of glasses will be next. I was so shocked when he told us all this all I could say was ..."wait if he needs glasses that means he can see something right?"... The Doc laughed at me and said "Yes we are pretty certain he can see something"... We were on cloud nine for days after this!

But always with the good comes the bad right?

So the day after his exam he had another speech eval. This didn't bring as much happiness as we had hoped. When going into speech we thought that some improvements would be made towards helping him take a bottle well again. No such luck! Ayden has been fighting the bottle for months and months now right?...Well the last month had been the worst really. He had dwindled down to taking at the very most 15ccs in a feeding. So when the Speech Therapist tried to give him a bottle he threw his normal temper tantrum as soon as the nipple touched his mouth. The therapist then told us to stop trying to bottle feed all together. She said that this may make him more adverse to eating anything and it could make things worse. So now we are tube feeding everything. This is such a huge setback & I feel like we are at a stand-still. We need to find something that he will take my mouth not just say stop bottle feeding and not work on something else! It it just so frustrating...

So we now know that bad news travels in twos...or usually threes in our case...

Just a couple days after his Speech eval. Ayden had his 9 month well check up & 6 month shots at his Pediatrician. So I was baffled when they actually gave me a survey/checklist to fill out to assess what Ayden does with movement and developmentally that is supposed to be for a normal/full term 9 month old. I'm sitting there filling this checklist out feeling like screaming just thinking about the idea that even being given a checklist for a 6month old let alone the checklist that was right in front of me. As I marked NO on each question all I could do was cry a little. If this wasn't bad enough, when the Doc examined him they said he is already showing signs of CP but mostly on his left side. Upon this news we were referred to another specialty clinic and we finally got referrals for PT and OT...Until now Ayden has only seen PT& OT in Cincinnati when he was in their NICU...For the life of me I honestly do not remember PT & OT ever really working with Ayden when he was in Dayton and its pretty unnerving!

So this week we finally went in for a PT & OT eval. but didn't get much good news either. Ayden doesn't extend his legs completely and is showing more tightness in his left than his right. He reaches and grasps for things when he hears a noise or sees a color that he likes but it takes a short while to get a hold if things. He shakes rattles like they are going out of style and brings them to his mouth but has a harder time keeping hold of the items in his left hand. When placed on his belly he lays there like a zombie. He works vigorously to get a hand in his mouth but does not move at all once it is in there. He will only lay with his head to his left side and if turned tot he right he will lift his head and put it back to the left. He isn't showing any reflexes in his legs and shows little movement when stimulating his back or neck. So after all of this, the therapists say that he needs both Pt & Ot 2 times a week. Now with this along with all of his other appointments we are really never going to have time at home. I am wondering if this is too much therapy for him to handle but we will see how he does once we start this vigorous series. Hopefully this will help him get on track with his adjusted age. Now to try to get that much therapy passed through our insurance is going to be a rough road too!

So this week to come Ayden has a GI appointment, another airway procedure and another ABR to confirm his hearing screens.

So now onto the happy...non medical stuff...

Ayden has begun to smile and laugh often now. His laugh sounds like a whimper from time to time and is very soft but it is the cutest thing ever!....When he laughs and smiles it takes over his whole face. I didn't realize just how big his mouth was until he started laughing!...He is finally happy!...and he is showing it!

Isn't he just soo cute?

Weekly Height/Weight update: 13lb 7oz 23 1/4 in long!.....Hes finally outgrowing his 0-3mos clothes!


  1. So good to get an update! Can I just tell you how much I despise GI Math? Go with your gut. You know your baby. Keep doing what works. And please don't even think twice about the corrected age survey. Why do they even put parents through that? Hope the next few weeks bring you more good news and no bad. By the way, I moved Daphne's blog to

  2. Hey girl! I wish the rollercoaster stopped once the NICU is over, but it seems like things always pop up... No matter what, Ayden is adorable and amazing and you're one awesome mama!

    I don't know what you guys will end up doing, but we ended up stopping bottles altogether and just started spoon feeding baby food at 7 months. Dax did great with it and has ended up with no oral aversions even though it's been a fairly long road to get us here. I'm glad we did that, but Dax also aspirated on thins and aspirated when he sucked, so the bottle just didn't work for us anyways. I guess what I'm trying to say is, just do what works for Ayden! The doctors have never met anyone just like him, so you're all just figuring it out as you go!

  3. I am so happy about the glasses news!!! Both my husband and I were so excited for you guys! :D What a relief! PT can be hard and frustrating and even if it seems like you got nowhere with it one day, maybe the next he'll surprise you! He is still looking so adorable! We're lovin' the smiles! :)

  4. Hi,

    I wondered if you had heard of the Oley Foundation. We offer free information and peer support to families like yours with a member on home tube or IV feeding.

    Check out our web site at For a good overview, click on the "New to Oley" button.

    I recommend reading the information on "Weaning from Tube Feeding" posted at: (scroll down the page). Some information might be helpful now.

    Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.

    Warm regards,
    Roslyn Dahl
    Oley Foundation Staff Member
    (800) 776-OLEY

  5. Mollie is right on the feeding. Braden stopped the bottle after getting the G-tube. We also got him eating off a spoon at around 6-7 months. Your the Momma and you will learn what works best for him. The professionals are just there to give advice to help you. They don't necessarily know what works for Ayden. It's all trial and error.

  6. That is SUCH SUCH fantastic news about his eyes, Athena!! I'm so thrilled to hear it! The GI stuff is so obnoxious. I am with everyone else that has commented: go with your know, your gut that tells you all about Ayden's gut. Hardy, har har :) Interestingly, Crew is being EXTREMELY temperamental with the bottle lately (I got 4 ounces into him yesterday), but is suddenly eating with a spoon better than ever. It used to be that he would only take a bottle and never eat any kind of solid-type food. We are trying to work with hydration through the minimal bottle that he will now take and through juicy foods. It's an interesting balance, one we haven't quite perfected, to be frank. Feeding seems to be such a common problem with these little critters, don't you think? Good luck with all the OT and PT stuff. No one knows the future, though plenty will try to guess. My PT says she has seen children that were told their whole infancy they would never do something and they did, a few years later. The story hasn't been completely told on this little miracle boy yet. But we know that whatever his future and his story is, it will be beautiful because of the lives he has touched and the love he feels from you. I love the happy pictures! He is so happy to be home at last!