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Friday, September 14, 2012

Max's story, continued

My last post left off with all of us going home, and Max being on the bili-light.  When we went home, the pediatrician filling in for our doctor told us to go back to the hospital on the following Monday to have Max's biliribin levels checked.  We had to go to the hospital because it was labor day, and all of the other labs in Flagstaff were closed.

Sunday was a great day, Mark and my Dad went to church, and then the rest of the day we all spent just relaxing, and Grandpa and Grandma Robbins and Aunt Traci all got to spend the day holding Max.  Monday morning we all got up and got dressed to go to the hospital to have Max's blood drawn.  It was a great start to our day.

Our first family outing with Max.


Then when we got to the lab, the technician drew Max's blood twice, both times not getting enough out of his heel.  She called down a NICU nurse to draw his blood again, hoping that she would have better luck at getting enough.  The funny part was that the nurse that came down is the wife of our favorite NICU nurse, Bill.

Bill did a great job taking care of Max for us, and it was he who realized that Max was having a hard time passing the amniotic fluid which was causing him to not eat and have really bad reflux.

Back to the lab, when Bill's wife came to draw the blood, she did a great job, filling two vials very quickly, but by that point Max had had enough, and was freaking out.  He was completely inconsolable, and this is when we believe that he refluxed and then aspirated it.  We went straight home after that, and Max was cranky all day, and didn't eat very well.  That night Mark and I were up all night trying to calm him down, and we realized the only way that Max would stop crying was when he was lying on our chest, so we took turns holding him so the other could get a few minutes of sleep.

The next morning around 6:30 he started whimpering like we had never heard him do before, and so Mark woke Traci up to check him out.  When Traci came down, he had several bouts of apnea, where he completely quit breathing and went totally limp.  I woke up my dad, and he assisted Mark in giving Max a blessing, then Traci, Mark, and I rushed Max to the ER.  Once we got there they put an oxygen monitor on him, and his oxygen levels were in the 70's and low 80's.  They put him on oxygen, then started testing for different things.  They really wanted us to do a lumbar puncture, but Mark drew the line there, and told them to rule out everything else first.  Max was still too young to have caught spinal meningitis, especially since he had been on antibiotics pretty much the entire first 48 hours of life, and he hadn't been exposed to very many people.

Up to this point Mark and I had only had a few hours of sleep a night, and both of us were exhausted.  So after Max was admitted to the PICU, my Dad volunteered to sit up with Max all night long so that Mark could go home and sleep, and I could sleep on the chair in the hospital room.  He literally stayed up all night long holding Max and watching movies.  Whenever Scott, our night nurse, came in he would tell my dad that he could lay Max down on the bed.  My dad would tell him no, and that holding him he would be sure that Max was still breathing and ok.  We will be forever grateful to my Dad for doing this for us, and for loving Max so much! 

In the PICU Max got a new mask for his bili-light, and Traci said she had to draw eyes on it.  My dad said that while he was holding Max all night, he would look down and the eyes would startle him, and in his delirium he thought for a second that it was Max staring at him.

Max with his bili-mask in the PICU 9-4-2012

We stayed in the hospital for two more days with them still running tests on him, and doing room air challenges to see how he would respond off of the oxygen, which he failed every time.  His second day in the hospital his biliribin levels were down significantly, so they took him off the blue light.

The last day we were there they did another chest x-ray (the third one in his short life) and they finally found small pneumonitis in his lungs.  Because of the the size of it, they knew it wasn't an infection, so they determined it was from aspirating reflux during his heel prick on Monday.  We were finally able to leave on Thursday, with several bottles of oxygen and instructions on how to take care of a baby with reflux and an appointment to follow up with our pediatrician the following day.

While in the hospital with Max we found out that the incision from the cesarean was also infected, requiring a quick visit across the street to my doctor, and 10 days of antibiotics, again.  

When we left the hospital, he weighed 7 pounds, 6 ounces.

The following day we did our follow up, and Max still had not improved, still requiring oxygen. 

This past Wednesday, the 12th, Traci left to return to her family in Florida.

Traci and Max on her last day here, 9-12-2012

We have all been very sad to have her go, but especially the dogs.  Roslyn keeps going up to her room and looking for her, and coming back out very disappointed.

Wednesday we also had another appointment with Dr. Tuckman for Max.  This one was the worst.  They weighed him and he weighed 7 pounds 15 ounces, and was 20 and 3/4" long.  He eats a lot!  They did a room air challenge, and he failed again.  After the weigh in and room air challenge Max was circumcised.  When we came home afterward, I couldn't help but think we had made the wrong decision because the poor little guy was (and still is) miserable!  We also had to go to the lab again to have more blood tests done for food allergies, meaning more heel pricks.  The poor little guy has had a rough start to life, but he has been a trooper, and is still a great baby, when we aren't changing his diaper.  

So today was my first day alone with Max.  My parents went home last week, Traci went home Wednesday, and Mark went back to work today.  I am proud to say that Max is still alive!  I have been terrified to be alone with Max, worrying that something would go wrong and I wouldn't be able to handle it by myself.  So far, so good.  I am anxious for him to get older (bigger) and to not require oxygen anymore.  I think then I will not be so anxious.  He seems so tiny and fragile right now, it breaks my heart knowing how much he has suffered.

Max likes to sleep with a foot uncovered.

Our little Monster Max!
Polly loves Max.  Every time he squeaks or cries, she is right there watching him...
...or licking him.  She loves to lick his feet, and Max doesn't seem to mind.  I suppose that is better than the heel pricks he's used to.

From his first day home Max has been rolling onto his side.  I can only guess he can do it because of his long legs?  He rolled over with the bili-light on, I was quite impressed! 9-13-2012

Ros still seems undecided about Max.  She seems interested, but still jealous of the attention she has lost to him.

Our long, skinny baby!  He loves holding on to his pacifier.

Max is especially cute when he is sleeping!

Max smiles a lot! 9-7-2012

And he loves having his hands by his face, even if it gives him a squishy face!  9-7-2012

3 comments:

Alicia said...

That is a tough start to life! I hope everything resolves in the next while so you can start getting some rest!

Kathy said...

Poor Max. He's had a rough start. He's adorable, and I'm so glad he's home. We had a premie grandson, who just turned 8, and he was on oxygen for awhile after coming home from the hospital and I know it was hard on his parents.
I know you are a wonderful mother. I'm so happy for you.

Stacy said...

Somehow I missed this post! So cute! You guys are doing a GREAT JOB! But I have to agree with you, with all he went through during those first couple weeks, I would've been grateful to have Traci around too! :)