baby steps

On May 22nd Max took his first try at a bottle, OTPT came in to talk to me about the steps they were going to take and what I could do to prepare myself for the next step. It was perfect timing, since he was awake and showing cues he was hungry. Max drank 2ml and didn't choke at all! I was so proud of him, the next day he drank 3 ml and on Friday he drank almost 4 ml. He is doing well at not choking, but he occasionally forgets that he is supposed to suck on the bottle, swallow the milk, AND breathe. We are working in the right direction though. :) He is only on 2 medications--sodium and iron both of which he is making on his own, but not quite enough yet. Both of these are given through his feeding tube so he is still needle free.
More great news is that he has grown so much that he is too long for preemie clothes, but newborn size still drowns him. So, I have been searching for preemie outfits without the 'feet' so that he can wear clothes that fit him but still allow for the wires, leads, and tubes. This is not an easy task.  Max has gotten quite long actually, mostly in his legs I have a feeling he is going to be taller than me way before I want him too.

We are taking baby steps forward on a daily basis and we are starting to get some signs of coming home. I'm so grateful for everyones support and kindness. Many friends have asked questions and someone suggested I do a little Q & A on here. :)

• How much does he weigh?
  5 pounds 4oz as of last night :) He's got quite the double chin going on.

• Doesn't 5 pounds that mean he can come home?
  No, he has to be able to breathe on his own (with or without oxygen) with no apnea's (stopping breathing) and no bradycardia  (his heartbeat quickly slowing down) for 7 days in a row. So far, we aren't to 1 day yet. Though he is 'fixing' both of these problems on his own--without help from the nurses which is a HUGE step in the right direction. They have turned his oxygen down to 2 liters/minute and even though they tried to turn him down to 1.5 mL on Friday, and turned it back up to 2 it has been a perfect amount for now.
  He also has to eat on his own, yesterday they gave him 5mL with a syringe which is the most he has swallowed as of yet, I was so proud of him. (5mL= 1 teaspoon)
  They told me yesterday that if he can eat MOST of his food by mouth, then he can come home with a feeding tube temporarily. He has been eating 320ml a day, which is about 10 ounces.
• So... when is he coming home?
  I wish I knew, it is all up to him, as it always has been. It is still looking like late June-early July will be when we get to all come home as a family.
• Is his hematocrit level up yet? Not all the way, though it is on its way up. He has gone from 23 to 29 and it needs to be above 35 before it is considered 'good'. Almost there! He is still recieving extra iron with every feeding as well as continuing with the 'darby' injection once a week.
• How is the ROP?
  Max has Stage 1 (minimal) ROP and is vascularized to Zone 3. This means he has minor retonopothy, but they are not concerned because once he is fully vascularized he will no longer have the risks associated with ROP (mainly blindness) At that point they will increase his oxygen percentage and lower his liters/minute hoping that he won't have to come home on oxygen. That is the short story, if you want the long story...email me :)
• What color is his hair?
  That depends on who you ask! All the NICU nurses call him a redhead, and I think it is too. Solomon thinks that while it has some red in it, it is mostly blonde. He doesn't think the red will stay and we will have a towhead. Either way he has a lot of hair, though it is fine and very light colored, it is getting long. Yesterday, my favorite NICU nurse told me that she thinks he may need a haircut before he comes home because it is going up and over his oxygen cannula. I'm certain that means he has his daddy's hair genes.
• Do you see him every day?
  Almost.
• Are you living down in SLC now?
  No, I drive down to see him or take FrontRunner/Trax
  FrontRunner/Trax is cheaper than driving our Jeep, but it also means I spend 5 hours commuting instead of 3. I weigh the pros & cons depending on the day.
• When will the surgery on his lungs be?
  Oh...another question I can't answer. It depends on the day, week, doctor, surgeon, and color of the sky. I've heard everything from 6 pounds to 1 year old. Most recently it has bounced between September and January. These are his '6' month marks, September being his 'actual' age of being 6 months. January being his 'adjusted' age of 6 months. Max will be using his 'adjusted' age for a while. 

   Adjusted age is the age of the baby based on his due date. Healthcare providers may use this age when they evaluate the baby's growth and development. So, if a baby is 6 months old, but was born two months early, his adjusted age is 4 months. --babycenter.com

  Since we are still not to my due date (June 25th) we are going by 'gestational' age, which is how pregnant I would be...if I was still pregnant. This means he is gestationally 36 weeks old, though he is measuring at about 34 weeks. This is because of a few setbacks he has encountered in the NICU, these setbacks don't seem to be effecting him as much as anticipated and seem to be mainly evident in his size.
  
  I think I've covered everything, though if I haven't feel free to ask.