Exhaustion

So, the NICU got the best of me yesterday as I sat there sobbing, unable to pull it together. When I really think about it, we are so blessed things have gone so smoothly. No major problems with either boy, no infections, no bleeds, no complications other than them being micro preemies. But sometimes it gets to me and I have a little pity party for myself. Last night, it was the feelings and pumping. We start Warren at 7:15 with his assessment, feed at 7:30, and repeat with Dean. This wraps up at 8:40 by the time Dean is burped and settled. Then I pump, 8:50-9:30. And the cycle gets repeated again starting at 10:15. Giving me a 45 minute break. All day and all night. The thought of doing that at home is overwhelming and exhausting. And the fact that they don't breast feed doubles the time. But, according to lactation, that will continue for the first ~2 months they are home. Can I handle 2 months of sleeping 45 minutes at a time?  Am I that dedicated to breast feeding??  Not so sure at the moment... 

This is supposed to be my time of rest. I use the term rest rather loosely, as I still only sleep for 2 hour increments between pumps and am at the hospital before 7:30 for the first feeding. And there is so much guilt at leaving them there during the day to run errands, eat, nap, etc that I can't seem to let myself do it. Especially now that they are bigger and know who I am. And I can hold them. So hard to be away. Just continuing to pray the boys develop more and we can all go home soon!  Preferably on the same day so we don't have to balance that as well!

Feeding

Feeding is by far more frustrating than breathing. Yes, breathing was hard. Hard to watch your child struggle and fail time and time again. Hard to see them so upset with the bubble and watch them scream and rip it off their face.  But now, they receive essentially no skilled care. There is really nothing done at he hospital that I couldn't do myself...until there's a problem, of course. We give them a bottle, they take a few sips.  I try to breast feed, they scream. So then we try a bottle again. They fall asleep. Back to tube feeding. And really, I could tube feed them myself. But that is why we are here, because they can't go home with the tube.

Andrew fed each of them their first bottles. Dean last week, and Warren yesterday. But for the most part, it's a few gulps.  Sigh. Some babies have been back here for 6+ weeks working just on feelings. I can't make it 6 more weeks. This is now the time the boys would have been born had my pregnancy not sucked and if I didn't go into labor. So now I feel like we should be home. Now I am getting jealous of those moms who walk in, have a baby, and walk out with their family. The happy couples we say congratulations to in the elevator each day as, yet again, I am off to visit my sons under supervision surrounded by monitor alarms, beeps, and other screaming children. We are just so very ready to be home!

View from my chair all day

Kangaroo care make every moment worth it

Expectations

Life is not at all how I dreamed it.  I was always a planner.  I can remember in college sitting out by the pool, talking about what my future would hold.  When I think back, I always imagined having 4 kids.  Naturally.  And the first would arrive when I was 25.  And I would be finished by 30.  One boy and 3 girls.  That was the plan, and I was somehow so sure of it.  And here I am, at 28 almost 29, with 3 children.  One in heaven, 2 fighting in the NICU.  I have never spent the night with them, never been there for them in the middle of the night, never even been alone with them.  None of my children have ever been outside the hospital.  Including my hospitalization, the boys have spent 4 months inside the walls of Presbyterian Hospital.

We moved stuff around because we had carpet cleaners come and had to move Reagan's bookshelf into the bathroom. (Didn't want the carpet guys to move that one)  And I just sat there, holding her urn, sobbing.  She should be here.  She should be able to give her brothers advice, which they promptly ignore because she's just a girl and what do girls know??  We sit in the hospital and hold the boys and sometimes tell them about their big sister.  We try to emphasize that she is in heaven and we will see her again, so not to be sad.  But I don't think we're very convincing since we cry each time.  So today, I am especially missing her.  Some days are like that, tomorrow will be better.

We continue to try to trust in God's timing and wisdom.  There is a reason we are being challenged with this, and there is always something to learn.  And really, the boys are doing very well.  With being born at 27 weeks, missing the entire 3rd trimester, things could have been bad.  But, God is good and has protected them.  And, at some point in September, we should be able to bring them home.  To the new cribs my neighbor so graciously picked up for us.  Until then, it's back to the hospital for us, and back to Charlotte living for a few more weeks.

Special Care

So, we hit 34 weeks and just took off!  Both Warren and Dean went to 100% room air, no bubble, on Saturday. Can't believe they hit that milestone together. So proud of Warren for catching up!  On Sunday, all the oxygen support stuff, except for the ambu bag, was gone from their cribs. And then yesterday we were moved out of the high risk area into special care!  Still back in the NICU, but one step closer to going home. Now begins the feeding battle.  Which is already up and down.

The boys are now weighing in at over 4 pounds!  And we can now hold them when they fuss or for feedings. Such a drastic improvement since 2 weeks ago. God is so good!  Can't wait to have these little boys home!  Last night, Dean was struggling.  He was fussing and crying and you could just tell he felt bad. I couldn't leave him in the hands of the nurse to hold and comfort him - that was my job. So I stayed late and held him on my chest till he fell asleep.  Just a taste of home life and I am even more ready to get there. All the loud screaming babies around me right now don't help either...

Progress

We are finally moving forward!  The first 5 weeks seemed to move at a snail's pace. And steps forward seemed to be countered by steps back. It is incredibly frustrating to watch your children struggle so much. To see them so upset and not be able to comfort them. To spend all day by their bed but not be able to touch them. 

But the past week has changed everything!  God is so gracious. Both boys continue their room air trials - Dean 9 hours twice per day and Warren 6 hours twice per day. So at least half of their lives are spent off breathing assistance. They are now in their big boy cribs, upgraded from the isolets.

Dean in baby jail

It is so wonderful to be able to pick them up and hold the, when they cry, take pictures without going through a plastic shield, and love on them. Such a drastic difference. I mean, look how good Warren looks...breathing all by himself! 

I am finally getting use of all my knitted/crocheted hats. Can't wait to put them in their football helmets in a few more weeks!  Within the next 2 weeks, they should be off the cpap completely. Next hurdle...feeding by mouth.  At least I get to be a part of that!

Room Air Trials

Success!  So proud of my boys. Warren got tired of everyone talking about how he was behind, that he couldn't breathe as well as his little bro. So, he decided to show us all. In their temporary, quiet space (moved so their old unit could be rewired for a new computer system) he thrived. No extra oxygen requirements, lost the chin strap, and earned himself a room air trial. Which he PASSED on his very first try on Friday. Way to go Warren!  He passed again the next day, making it the full 3 hours, while watching his Uncle Wade get married on FaceTime. And then he got tired. And had 10 bradys that night. So, he lost his privileges. But he has the chin strap off again and we're working our way back. 

Dean continued with his one hour trials, sometimes making it, sometimes not. Until he heard that Warren beat him. Then he got mad.  And decided to step up. He now completed the full 3 hours 2 days in a row!  And no bradys last night, so we continue today. Yay!  We are slowly getting there...

And now, when they have the bubble cpap on, they are both incredibly fussy. They hate it. REALLY hate it. And they constantly rip it off their faces. Kinda cute, but not very functional. 

Warren ripping off his bubble

Warren's first trial

Dean sucking his thumb on his trial