Finally

After 28 days of patiently, & not so patiently waiting, I finally got to hold Max again. He its so much bigger than last time, and he did great maintaining his body temperature for over an hour while I held him and tried to memorize his tiny features.

Nearly 5 weeks old

On Wednesday Max turned 1 month old! He weighed in at 3 lbs and 3oz and the graduated him up to 20 mL of food every 4 hours. They took him off the ventilator on April 20th and put him on a high flow CPAP for 2 days, then switched him to a bronchotron which is similar to the oscillating ventilator except in his nose instead of being intubated.

Max has also made a lot of progress in other areas, he is doing so well and getting better every day. PCMC has done a fantastic job of not only making him stable, but also helping him make great progress. I am grateful everyday for McKay-Dee and Primary Childrens for helping our son grow healthier every day.

Max no longer has Acidosis and his sepsis is cleared up (he no longer needs cortisol which means he is no longer swollen and puffy!) 
his hematocrit or 'crit' levels are great again
He hasn't had any additional problems with jaundice, he hasn't even been close to it.
Brain ultrasounds are completly clear and stable so far
His PDA still hasn't closed all the way, but it is no longer causing any problems or complications.

Maximus had a few rough days last week, throwing up what he was eating and loosing some weight. They gave him an IV and tried to find out what had happened as his oxygen needs went up, up, up. He was almost at 100% at one point, I was so upset he was going to need to get re intubated after he had done so well the first few days. His nurse had suggested she thought he had air in his belly, and there was just no room for his foods. She asked me what I thought about putting a second OG (feeding) tube into his stomach which would mean that it could vent air out of one while food could go down the other. I thought it was a great idea, but the Nurse Practitioner decided not to at first and just adjusted his settings on the bronchotron, which put him at the highest settings it would go. The next day they put in a second feeding tube and things started to improve. That night around 2:00am my little stinker grabbed hold of the bronchotron cannula and pulled it almost off his face, he only had 1 part of it still in his nose...but the amazing thing is that he didn't dsat when it happened. Slowly but surely things were looking a little better. It was a rollercoaster few days, not knowing if when I left at night he would be reintubated overnight. Friday they decided to try a different type of tubbing arrangement using a anderson tube to get the air out of his belly. I sat by his isolette and cheered and encouraged him as he slowly decreased his oxygen levels a little bit at a time. By the time shift change happened and they closed the NICU for visitors he had been as low as 23% and no higher than 30% (for frame of reference 21% is room air) Max had been practicing his swallowing, which is what he would be doing if I was still pregnant. Unfortunately, instead of swallowing amniotic fluid which helps him learn proper swallowing skills Max was swallowing air, which was filling up his belly. While I am so extremely proud of Max for practicing his swallowing and sucking (he has been sucking on a binkie lately too) he was filling his belly up so much he couldn't eat or breathe (his stomach full of air was also smashing his lungs--thus the increase in oxygen needs) The anderson tube has been the perfect thing to help him.

Today Ms. E and I went to the playroom while S went in to see Max, when he came to switch me he told me that Max had a surprise for me. I asked him if it was a poopy diaper that he had saved for me to change....and figured it was when he didn't answer me.
When I walked in the room I instantly noticed a huge difference. THE BRONCHOTRON IS GONE
My sweet boy was on only a nasal cannula and his oxygen levels haven't gone above 35% today. He was calm and resting for the day, he wasn't pulling at his wires or tubes, he hasn't thrown up nor had any breathing problems. I haven't quit smiling since that moment.

Prayers are working, every single one of them.

growing

Its hard to think that when my water broke the doctors told me I couldn't keep him in longer than my 34 week point. They also told me that if I went into labor they would not stop it, and would let my little boy decided when his birthday would be. I set a goal that I was going to keep him in until my Dad's birthday, so that I could give him a grandson for his birthday. That would have put me at 30 weeks and I was so sure I would make it. Today is my Dad's birthday, and I only was able to keep Max safe and sound for 2 days and 14 hours. I tell him every day that I'm sorry, and that I'm sorry he is hurting because I couldn't stay pregnant for any longer. Everyone tells me that he won't remember to pokes and prods, the needles and the IV's and I pray every day they are right.

He did have to have another blood transfusion, but the results of the test they are running with his blood are right within the range they want them to be. Since they have all been good, he no longer needs the

Arterial line in his foot and once the blood transfusion finished they removed that line also. This means for the first time since being admitted to Primary Children’s BOTH of his feet are FREE of wires and needles! I'm actually going to be able to put a pair of booties on his itty bitty feet. :)

Since stopping the Indocin, and beginning feedings again Max has made some huge improvements. They are no longer getting any blood out of his lungs, and the infection in his lung seems to be gone. The cyst is still there, but because he is doing well they do not need to do the surgery right away. He has also been off antibiotics for a few days and tolerating it very well. When they first began his feedings again they started him at 2mL and have increased him from there almost daily. He went to 3mL, then 5mL, 9mL, 12mL and most recently 15mL! The NNP told me today that he is doing so well with tolerating feedings if he increases a bit more they will take his PICC line out because he won't be needing the TPN anymore for his nutrition. By next week my sweet little boy might be completely needle free. The thought makes me want to cry the biggest happy tears I've ever cried in my life, I nearly did on the phone with her. I am so beyond grateful for the blessings and prayers for my sweet little boy, thankfully he is getting these blessings even though I don't deserve them. Another result of the increased feedings is the increased weight gain. Tonight when they weighed him the nurse told me he is only 11 grams away from 3 pounds!! He has gained nearly 15 oz from his birthweight plus all the weight he lost initially. I just need him to get off the oscillating ventilator (which they have weaned down as well) so that I can hold him again. It’s been 17 days now since I last had him in my arms and I cannot wait until I can again.

3 weeks old

Its been quite a week, my brother got married, my sister from Tennessee was in town, there was a baby shower, and of course my visits with Max.
His heart is still looking good, no need for surgery. They have done a CT of his lung and are deciding when to do that surgery. So far it looks like it will be a while, which is good. He has had another blood transfusion :(
The good news is that he is opening his eyes quite a lot, and they will be doing a vision test tomorrow. He has gained about 10 oz so he is up to 2lbs 11 oz now! They are thinking about removing his arterial line, possibly tomorrow (this is good news!) his Oxygen and CO2 levels are very stable and he is still taking frequent breaths on his own. He is eating (still through the feeding tube) about 10mL every 3 hours (about 2 tsp) and they may increase it to 12mL
Last night they gave him a micro-binki and he sucked on it for about 2 hours. This was the best news I have heard in forever! In order for Max to come home one of the requirements is that he can suck/swallow/breathe all at the same time, the fact that he is practicing this already makes me SO HAPPY!

Even more blessings

The unofficial "don't quote me on this" news from the nurse today is that after 5 doses of Indocin (Indomethacin) it seems to be working! They can no longer hear the PDA through a stethoscope and FINALLY did an ultrasound this morning. While it is not completely closed it is only a teeny tiny bit open and since Indocin has a really long half life it may just finish closing in the next little bit. This means that unless something crazy happens (knock on wood!) there is no need to do heart surgery! For the first time in almost 3 weeks I cried happy tears.
Max has also finished up his round of steroids and they have turned down the ventilator a few more notches, his blood gas tests are all showing in a normal range, and his CBC levels (a bloodwork test looking for infections) have decreased significantly, in a few days they will start feeding him again. (wait! before anyone panics, he has been getting his nutrition through an IV the last few days, they will start using the feeding tube again is all I meant) They told us he may end up losing weight because of not using the feeding tube, but he surprised us all by weighing in this morning at 2 lbs 6oz --this kid is tough!

The words 'Thank You' seem so inadequate right now, but its the best I've got. Thank you to everyone for the support, the prayers, the good wishes, the help, the check-ins, the reassurance, the friendships and the positive thoughts all sent our way (and into the universe for us ;) ). I have no real grasp on all the people who have been thinking of us, and I learn every day that  more people are praying for our little man--some of them I've never even met.

What we know...

After a whole lot of testing and PCMC being able to stabilize Maximus on the oscillating ventilator things are looking up again. :)
He is keeping his oxygen needs to the 30-40% range (21% is room air)
Max does NOT have meningitis, unfortunately they found this out by doing a spinal tap on him. Poor thing!
His brain is looking great, no clots, bleeds, or excess fluid.
He is starting to open his eyes, we saw a few sneak peaks of blue today.
We are all hoping the indomethacin is going to work and close his PDA
Max is also on steroids, which is causing some swelling, mostly in his sweet face. :(
He has a bacterial infection in his lungs :( but he is on antibiotics
My parents have made it possible for me to be able to see him everyday, and I have never felt so lucky even though he is in the NICU I have had countless blessings and wonderful things occur in the last few weeks.

Primary

As some of you know, our Maximus has been transfered to Primary Childrens Medical Center. He has hit quite the rough spot the last few days and to be honest, we don't really know why. They are running a lot of tests and blood work (which means a blood transfusion as well) xrays and ultrasounds. We are trying one more medication to try and close the PDA before attempting surgery.

On the bright side, S was finally able to hold his sweet boy on Tuesday for about 45 minutes. It made my heart so happy to see him in his Daddy's arms and thank heavens we were able to do it Tuesday because they put him back on the oscillating ventilator on Wednesday and Thursday we took an ambulance ride to Primary. When things feel overwhelming, I can look at those pictures and it makes me feel better.

Thanks for the continued prayers and good wishes from everyone.

an update

We got our first phone call from the NICU on Wednesday night at 7:30pm telling us they were going to re-intubate him. I kept my composure long enough to get off the phone before I started crying. I had been working on a few things from work to keep myself distracted that I wasn't there, but then when I got a call I couldn't focus on anything anymore. I gave myself 5 minutes to cry then reminded myself that crying wasn't going to change anything and it wasn't going to help him. I talked to a friend for a while about her experience when her son was in the NICU after being born early. It made me feel so much better and prepared for the following morning.

The good news is, I misunderstood what they meant when they told me they re-intubated him. I assumed that meant they put him back on the oscillating ventilator that makes his whole body shake.  This is not the case and it meant that he has a breathing tube down his throat instead of the nasal cannula. Things are still looking good otherwise. I was able to really hold him for about 40 minutes of heaven. They have to keep piling heated blankets on him so his body temperature didn't drop too low and eventually I could barely see his sweet face, but he was warm and in my arms so I didn't care.

Friday was a full day of errands I had to run so I didn't spend the whole day in the NICU, It was nice to still be able to see him, and he seems to be doing fine. They are concerned about his CO2 levels still and he has a minor air leak which is why his CO2 levels are high. At this point they are not going to do anything except watch it carefully.

Saturday we brought E to the hospital, and we took turns so we could each spend time with our Max. We showed her pictures and she was obsessed with the sticker he has on his head. The sticker is a result of  PDA  or Patent Ductus Arteriosus, it is very common in preemies. They started a medication that may make it close off so that he won't need surgery, but it may very well still need to be surgically closed if it doesn't begin to close off itself. In the meantime they did an ultrasound of his head checking for blood flow, bleeds, clots, and excess fluid. He did not have any problems with his brain, with the exception of the diastolic flow is a little bit lower than they want it. They assured me it is not a big deal at all. After the ultrasound they put a 'sticker' on his head and his side, these measure his Cranial and Renal flows to make sure the PDA isn't causing problems with his blood flow to those areas. The NICU here does such a great job of making things seem less scary, so instead of a boring sticky censor they used a purple sticker with little blue characters on it. His temperature sensor is a teddy bear, and this other sensors have smile faces on them. Its so nice they think of things like that to make it just the tiniest bit easier, especially when we explain things to E.

Sunday I came up with my Mom and Dad, my Dad took a lot of pictures but Blogger won't let me upload any. I'll keep working on it. This was the first time my Mom has seen him and she told me she wasn't prepared for how small he is. She was able to hold his hand, and they let me hold him again. I love holding him more than words! It was nice that my mom was finally able to come see him, and my dad was able to see him again.