Our new normal.

Ever since going back to work I've gotten quite used to the routine we've established for our little family. It almost feels like I've been doing it forever. 

I wake up around 6:15. Get ready for work and walk from rmh to the hospital. The walk to Eli's room feels like it takes forever. I think it's just bc being away from him for long periods makes me anxious. Once I get there we talk and discuss how his night went. He usually gives me a look and then falls back to sleep once I'm done talking to him in that ridiculous baby voice. I'm not 100% sure what I even say half the time but I try. Once I'm done bothering Eli with my jibberish I pump in the bathroom. 

I head to work. I usually stop by Starbucks and grab a frapp. Depends how late I am leaving Eli. I finish walking to work. My work day starts at 7:30. I'm there til about 1130 before I head to see Eli again. We visit for about 20 minutes and then I pump, again. 

The walk back to work is a bit tougher. I hate leaving the little guy. I manage to get lunch in here somewhere and finish the work day. I get off at 4:00. 

After work, I go back to see Eli for a brief amount of time before leaving to go pick up Lucas from Danny at his work. Once I have Lucas we head back to rmh and play and eat. That's where I pump for my 3rd time of the day. We usually walk over to see Eli once. That tends to be around 8:00. After our visit we walk back to rmh and get ready for bed or watch movies. I call and check on Eli about every 2 hours after this point. I usually do my 4th pumping around 11:30. That's all I pump in one day. I can sleep through the night and resume pumping in the morning. 

Danny arrives at the hospital around 1045. He stays and visits with Eli until 12:30 or so. Lucas and I are usually asleep by the time he gets back to rmh but that's ok. Lucas gets to spend a lot of his morning with Danny. Which I know he really enjoys. 

Then, the next day. We do it all over again. That schedule is typical for a Tuesday through Friday. Danny is off on Mondays so he keeps Lucas all day and I can stay with Eli longer periods of time. 

So that's how we live now. In and out of the hospital but making it as normal as possible for all of us. 

We have a plan, for now.

TODAY WE WERE TOLD THAT ELI WILL REMAIN ON THE BREATHING MACHINE UNTIL HIS NEXT SURGERY. THIS SURGERY IS CALLED THE GLEN. IT IS THE 2ND SURGERY OF THE 3 THAT REQUIRES ELI TO LIVE HIS LIFE. THEIR ARE PROS AND CONS TO THIS DECISION. 

PROS.. 

ELI REMAINS WHERE HE NEEDS TO BE. AT CINCINNATI CHILDRENS, CICU FLOOR. 

 KEEPING THE TUBE IN UNTIL THE GLEN PREVENTS FURTHER EPISODES OF REINTUBATION AND EXTUBATION. 

HE IS ABLE TO BE FED BY FEEDING TUBE AT FULL FEEDS, WITH TPN/LIPIDS, MAKING HIM AS STRONG AS POSSIBLE. 

CONS.. 

ELI WILL NOT GO HOME WITH US ANYTIME SOON. 

WE WILL NOT BE ABLE TO HOLD ELI AGAIN UNTIL HE IS EXTUBATED AFTER HIS GLEN SURGERY. 

WE DO NOT HAVE A DATE SET FOR THIS SURGERY YET. 

 THE GLEN SURGERY REQUIRES THESE BABIES TO BE AT CERTAIN CRITERIA. THEY HAVE TO BE ATLEAST 5 KILOS AND/OR 3/6M OF AGE. ELI IS VERY CLOSE TO THE 5 KILO MARK, WEIGHING IN TODAY AT 4.8 KILOS. HE IS JUST 10 WEEKS OLD TOMORROW SO THAT PUTS HIM AT AN EARLY AGE FOR THE GLEN IF WE WERE TO DO IT SOON. ITS LOOKING LIKE THE GLEN WILL BE SOMETIME IN OCTOBER BUT WE ARE UNSURE AT THIS POINT. 

OVERALL, HE IS DOING WELL. ALERT, FEEDING, AND CONTINUING TO GROW AS BEST AS HE CAN. I WANT NOTHING MORE THAN TO BE HOME WITH MY CHILDREN. AS A FAMILY. BUT WE KNOW THAT JUST ISNT POSSIBLE YET. 

ITS HARD TO FATHOM SOMETIMES. I GET CHOKED UP SEEING OTHER BABIS BEING CUDDLED, AND NORMAL, THAT ARE ELI'S AGE. IT BREAKS MY HEART. AS A MOTHER, ITS ONE OF THE HARDEST THINGS I HAVE EVER EXPERIENCED. THERE IS NO BOND BETWEEN US. IM JUST A VOICE HE HEARS. MY TOUCH IS PROBABLY NO DIFFERENT TO HIM FROM THE NURSES THAT TAKE CARE OF HIM DAY IN AND DAY OUT. I AM NOT ABLE TO GIVE HIM THE LOVE AND COMFORT HE NEEDS. 

NOT YET ANYWAYS. 

SO THATS THE PLAN FOR NOW. KEEP HIM INTUBATED UNTIL HIS GLEN SURGERY. WHENEVER THAT MAY BE!

5th intubation

I couldn't get over to Eli's pod fast enough this morning. Danny sent me a late night photo from his visit and Eli was able to wean off his CPAP mask. That allowed us to hold him again! I held him from 6:45 to 9:20. I didn't wanna let go. I wasn't going too. I text my boss and asked for the day off so I could just hold him. And love on him. And stare. And touch. And tell him how much I loved him. And poke his cheeks. And tell him how much he looked like his big brother. And his daddy. And we can't wait to get him home. And to show off his "special mark" to all the ladies. And just that we couldn't be more thankful for him. Our special heart baby. 

But I had too. I had to let go. Again. 

Eli started to turn a different color. This happens when his lungs start to collapse. I had to put him back in the bed and we started the recruitment process. That wasn't working fast enough. They put on the CPAP mask but decided shortly after that we needed to reintubate. FOR THE 5th TIME! I had to step out of the room. I cannot watch this process. It breaks my heart. Even after so many times, knowing what happens and that it's what's best for him. I struggle with this. 

At this point we don't know exactly why this keeps happening. The docs & Eli's surgeon want to meet and figure this out. They want us to be there too. Medical decisions need to be made and as parents we have the right to say no and choose a different route. So we just have to wait and see what they want to do. There are a few reasons as to why this is  happening but we cannot pinpoint any at this time. We're also waiting on some lab cultures from today's events to help us narrow our choices.

So as I know you all will. And you do it so well. Please pray for our sweet EJ. He needs your continued faith and strength. I know I do. 

Xoxo. 

CPAP

Many times I catch myself posting all the medical terms and forgetting that not everybody knows what I mean. I have to rewrite most of my status messages a few times to make sure everyone can understand. Nobody wants to read an update and have to google the entire sentence before they understand what the heck I am even talking about. 

At this point, Eli is recovering well from the collapsed lungs. He doesn't have his ART line anymore and his feeding tube has been placed in his intestine instead of his stomach. This reason is so we don't overkill his belly. The CPAP mask is doing a lot for his lungs and pushing air into his belly so this causes him to vomit. We don't want him to vomit any of his breastmilk so they went ahead and bypassed the belly straight into the duodenum. He will continue to get 2ml/hr for now. 

The CPAP mask is really helping Eli. This is a brief description on why he has to wear this. 

CPAP, or continuous positive airway pressure, is a treatment that uses mild air pressure to keep the airways open. CPAP typically is used by people who have breathing problems, such as sleep apnea. CPAP also may be used to treat preterm infants whose lungs have not fully developed. For example, doctors may use CPAP to treat infants who have respiratory distress. Also, in some infants, CPAP prevents the need to insert a breathing tube through the mouth and into the windpipe to deliver air from a ventilator. (A ventilator is a machine that supports breathing.)

So that's where we are with that. Here are a few pics from the weekend and week. He's holding his own :)

Just another day.

I'm exhausted. It's a different exhausted than I was during the pregnancy with Eli's condition. This is a bit more of a rollercoaster. I just want everything to automatically be okay. Well that's not how things work. There are little things we run into and concerns, and I walk around on edge using all that energy watching all the details and asking the doctors and nurses all sorts of questions, just so I know he's okay. 

We're doing okay. It's been a long few days. I'm hoping Eli has a turnaround and starts feeling better soon, because those sad eyes, that silent cry and not being able to help him, is really breaking my heart. I just want my little baby to feel better again. 

The rounds always leave me exhausted. I don't know if it's the anticipation, the worry, the fear that something's wrong and we'll get wisked right from the CICU into the OR or the ultimate fear that there's something really wrong and they can't do anything about it.

I wish for many things. At the top, I wish for no pain for Eli and in hopes that he just feels love. That's all I can do at this point. 

Lung issue.

Eli was reintubated today for the 4th time. His right lung has collapsed. He's got a possible mucous plug obstructing his airway. 

I had just gotten back to work today. A 5 hour day is better than no day. I didn't expect to leave and go see him so soon. Doesn't make going back for my 2nd day any easier. 

I made it to Elis room first. Danny and Lucas came over shortly after. He and I always talk about how we hate turning that corner to walk into Eli's pod. If there's people standing outside of it you know something is wrong. Today, I saw those people standing there. It hit me. I knew something was wrong. It's the worst feeling. I walked in to them getting him settled back into his bed after having the tube placed back in. So helpless and exhausted. He had worked so hard today on breathing and it just was too much. He started to give up. They decided at that point he needed some help. They did all they could to get that lung to inflate on its own and nothing was working. Putting in his breathing tube was the best thing at that point. 

So that's where we are now. Intubated again. Still unable to hold him. 

9 days and counting since I last held my baby boy. 

Back to work. For now.

Over the weekend I made the decision to go back to work starting September 3. We feel that since there is a good chance  Eli will spend a few more weeks, maybe month{s} in the CICU, I might as well go back and try to get a paycheck. I was going to be taking off September originally with no pay. It's just not what's best financially for my family. 

I work right next door to Eli's hospital so it's very convenient for me to go back now while he is still there and we have the room at Ronald McDonald house. I wouldn't need to drive to work. I could visit with Eli and then walk to work, see him when I get off and throughout the evening with Lucas. It all sounds good now, just hoping I have the strength to be able to do it.

I will resume my leave when Eli gets discharged from the hospital. When that will be, no idea. At this point, we aren't even sure we want him to come home and just to return in a short time for his second surgery.

Very mixed emotions at this point. All I know is that a part of me is ready and a part of me isn't. I want so badly to be a family of 4, in my home. But if he's safest where he is now, then I have to be ok with that too. 

Extubate. Trial 3.

Eli was extubated today, for the 3rd time. He did very well given just 4 days before, they attempted to extubate and he failed. This led Eli to be reintubated and monitored for a few more days before trying again. So proud of the little nugget. He had a rough start but I think we are getting back on track. I feel like maybe all the rough patches are behind us and we can only move forward from here. I hope. I always get myself in a spot where I am so happy with his progress and the bam, something sets him back. I hate it for him. It's a helpless feeling nobody should have to experience.

This weeks agenda is to get him back on feeding on Wednesday. We're hoping the reason his feeds weren't working before was because of the sepsis infection. We will see when he's able to eat again. 

They will begin to wean some of his meds starting Monday. His antibiotic will continue to run for a few weeks. If there is any change of Eli going home, almost certain he will go on antibiotics. The infection really took a toll on the nugget. 

So prayers for a positive week and hopes that Eli progresses!