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.

Onward & Upward

May 13, 2012

Mothers Day meant getting to hold Max for 3 1/2 hours straight. PCMC made a nice effort to make me feel good, but it was still hard. Sundays are always hard, because I work Mondays & Wednesdays. I try and soak it all in on Sunday so that I can make it through Monday.

Max's hematocrit or "crit" level is back down again. Which means his body is not producing enough blood cells. It is normal for this to happen, but it should have gone back up by now. They are concerned, especially since it is causing problems with his resperatory rate, heartrate, and O2 requirements. The 3 things Max has to be able to do completley (in order for him to come home) are

1. Breathe on his own, he is almost there! They will allow him to come home on a small amount of oxygen if that is the only thing keeping him at PCMC. However on Sunday it was at 4 liters/ minute. This is still considered 'high flow' which means he cannot breathe on his own.
2. Maintain his own body temperature. The fact that I held him for 3 1/2 hours on Sunday without a drop in his body temperature means he may be ready to move to a crib very soon!
3. Eat all of his foods by mouth. Basically, be able to suck, swallow, and breathe all at the same time either from a bottle or nursing. This is why they have been giving him binkies, so that they can monitor his ability to suck and breathe at the same time, before introducing the swallowing part of it.

The hematocrit is affecting his ability to do all of those, except maintain his body temperature. He is still gaining weight, and doing well otherwise.

May 15, 2012

Max's Hematocrit is still too low, so they are giving him a medication called darbepoetin or 'darby'. This will help him increase his red blood cells, until he is able to do so himself. If the darby doesn't help, it means Max will have to have a blood transfusion. This would be quiet the setback. He has had this medication before, but for the first time it was a shot instead of through an IV. He wimpered a little, but handled it well. It was a learning experience for me, because he handled it better than I did. I'm sure this will continue to happen, meaning I expect it to be worse than it is and Max handles life like a pro.

May 17, 2012

At 5:00am The NICU team decided to move my Max into a crib. I was beyond excited. It was the second best day in the NICU for us, (the first being the day he came off the broncotron aka my worst nightmare) and I practically floated the rest of the day. The reason I was so very excited is because not only does that mean Max has checked off a step to going home, but it also means I don't have to get permission from someone else to hold my baby. It means I don't have to sit in a rocking chair by his bedside and wait for a nurse to disconect and reconnect every wire and tube he is attached to in order for them to place him in my arms. It also means that I no longer have to tell a nurse 'no' when she asks me if I wanted her to get him out, because I know if I wait until after his cares are done I can hold him for 30 minutes longer than if I held him when she asked. (I got really good at timing when I held him in order to squeeze every second I could out of my allowed time to get him out of the incubator) Also, the reason I was so excited to hold him for 3 1/2 hours on Mothers Day. He is making so much progress and doing so well. If only we can get the crit level undercontrol !!!


to be continued....
;)

7 weeks!

I just got off the phone with the NICU who informed me that Max is nearly double his birth weight. He weighed in at 4 pounds tonight, 17 1/4 inches long, and eating 32 mL for each feeding which is just over an ounce. The funnest news of all is that he officially has outgrown something! He has a pair of booties with a matching hat that was made by the wife of my dad's friend from work. She gave Max a small, medium, and large size set of Preemie bootie and hat combos and he has now grown into the medium set. It makes my heart so happy that he has grown so much.
The only 'not so great' news is they turned him back up to 4 liters/minute of oxygen after dropping it to 3.5 on Saturday night. I am not taking this as a step backwards, but more as a preventative measure to make sure he doesn't take a step backwards.
His other progress towards coming home is coming along so well! He no longer needs heated blankets when he is out of the incubator to keep warm while we hold him and he hasn't had a single problem sucking on the newborn sized binkie they gave him. I'm hoping he is able to move into a crib SOON! (and not just because that means I can hold him more often) like I mentioned in the previous post (but failed to explain) 2000 grams is the 'magic' weight where they will move him into the crib as well as trying bottle feedings-- give or take a few grams. Nearly there!
While we still have a lot of unknown as far as the CCAM (cyst) goes, it doesn't seem to be holding him back. I hate that it is always lingering in the back of my mind, but I believe that has more to do with the fact that there hasn't been a definitive answer as far as surgery goes. I am however, making an effort to keep those thoughts in the back of my mind and keep the progress and positive in the front. ;)
Saturday we brought his big sister to meet him for the very first time. She has done very well understanding that her brother is 'too small' and 'too sick' to come home yet, and was beyond excited when she found out she would finally get to see him for the first time. She told everyone she encountered that on Saturday she was going to visit 'her baby' at the 'hop-i-stal'. We have been showing her pictures and videos of him since he was born, so she would understand that he has machines that 'help him feel better' and 'help him grow bigger' to ensure she was not overwhelmed or scared of all the monitors or the beeping machines. To say she did well would be an understatement. She followed exactly step-by-step what S told her and showed her while washing her hands and putting on Avagard and she was so very careful to not touch anything afterwards. We got her a chair to kneel on beside his incubator and she whispered 'Oh! I can see my brother. Hi Max' in the sweetest voice I have ever heard from her. She quietly asked us questions about him and the machines he is on, and when the nurse asked her if she wanted to hold his hand, the excitement and awe in her face broke my resolve and the tears just started coming. We never even had to tell her to be gentle because she looked right at me and said 'I will be soft, ok' It is one thing to see his tiny fingers in my hand, but it is priceless to see them in his 3 year old sisters hand. She broke into a huge grin and whispered again "Look! he's holding my hand" A few hours later, when I was holding him she and S came back she was surprised to see him out of the incubator and came right over to me saying 'You get to HOLD him!!" I asked her if she wanted to touch him and lifted the blanket up. She so very softly patted his back with a huge grin on her face, then told me 'you gotta be quiet huh, because he is sleeping." though she herself hadn't raised her voice above a whisper since we got to the NICU. I told her over and over how proud I was of her for being such a good girl, but I don't know if she really grasp how great she really did. It was every moment beyond what I expected.



(ps. anyone know the deal with the pictures? I can only upload a picture from my phone IF I wrote the blog on my phone. Pictures don't work at all from my computer!)

Now where was I?

Max is now 6 weeks old (nearly 7) He has regained all the weight he lost (down to 2lbs 15 oz) and tonight weighed in at 3lbs 12 oz! 2000 grams is the 'magic number'

He is still struggling with 'swinging' which means his oxygen need fluctuate. Sometimes he can fix this himself, other times he can't and they have to adjust it for him.
Since putting him on the high flow nasal cannula they have decreased his liters/minute very slowly and he is down to 4 liters/minute today! They have also increased his parameters from the 88%-94% range to the  92%-98% range. All great news!

We had a bit of a scare last week, where the opthamologist came to check his eyes and they thought he had Stage 4 ROP. Max has many of the risk factors for having ROP and it has been a concern in the back of my mind since I first learned about it (which was when the NICU doctors came to talk to me after my water broke) Turns out, the opthamologist has bad handwritting (ha!) because he actually wrote a 1 and everyone thought it was a 4. On Tuesday when they checked his eyes again, it had corrected itself and it is no longer a concern. His eyes actually look great, though there is still a risk of myopia (nearsightedness) but I am nearsighted so I'm not too worried anymore.

Max has graduated to the 'big boy' binkie, and it is a legit newborn binkie. I'm sure many of you know about the green soothie pacifiers. He actually LOVES it, which makes sense in a Murphy's Law kind of way since S and I were not going to use binkies. :) Of course I've given up on making any sort of plans, because he sure has shown me he has his own agenda. They've told me if he continues to do well with a binkie they may try to bottle feed him as soon as next week, but again...its all up to Max.