You'd think the end of the NICU journey would be easier..

Missi576 · March 2014

The beginning of this NICU journey with Alexandria and Olivia started out on adrenaline and faith. We clung to the positive things like the fact that the medical staff were surprised and happy that they were bigger than expected for their gestational age. We understood that every statement of how well they were doing was automatically (usually silently) prefaced with "for their gestational age." I countered my inability to be there until the late late evening every day with the fact that they needed sleep more than anything else, so I was doing both my girls at home and my girls in the NICU a favor by not living in the hospital, no matter how much it killed me to be apart from either set.

Now.. they're almost wire free. The temp gauge, isolet, nasal cannula, and within the next 24 hours most like the NG tube are all gone. I still have the NICView, which I am extremely blessed by, but instead of safely sleeping little girls growing, I see almost newborns looking around and it eats at me that I can't pick them up and hold them whenever they or I want to. I feel ripped into pieces as I try to prioritize my husband, my older daughters, and the twins.

I really did think the end of the journey would be the easier part. They are stable, healthy, and happy. Both took full feedings from bottles yesterday on only the second day of them being introduced with no issues. Both latch on and suckle without a problem (minus the fact that my time frame of being there ended up AFTER a bottle was given the feeding prior so they were tired and didn't do much). So why is it becoming almost unbearable?

~deep breath~ I believe you ladies will understand this. I know our journey has been relatively uneventful and due to that, I haven't posted much about it. At the moment though, I am falling apart as I try to hold my husband together. Just needed someone to understand

LucyRicardo3 · March 2014

I agree with Boston. Especially if you've viewed them starting to show any type of personality and seeming to really bond with you when you are allowed to hold them, but that you can't be there 24/7.

I had A LOT of guilt between trying to spend as much time at the NICU with #5 and feeling like I was neglecting my older kids. DH and I didn't see much of each other, at all, since we were always tagging out with the kids and their school & social activities, too. Not to mention trying to physically and emotionally recover from what brought us to the NICU to start with.

ETA Also, there were a few "Check boxes" that had to be taken care of before he could come home.. Meetings with Nutrition, Pharmacy, CPR class, etc .... that were only available during times when DH was at work. just more stress when you're juggling a household already..
It seems like it was a build-up of exhaustion and emotions all rolled into one; like I could only sweep so much fear under the rug before I cracked. Add in the financial fear-side to the stress...I boohoo'ed several times on my drives to and from the NICU at the end, grieving what seemed my loss of mommy connection on both fronts.

HUGS

Missi576 · March 2014

Oh so true. We've been fighting the 'checkbox' mentality this whole journey. At first I couldn't go up because I wasn't allowed to drive for two weeks. Then because it was flu season and the older girls weren't allowed to be in the Ronald McDonald room even with us.. now because they aren't allowed to sit there on their own (they are 12 and 10 and well behaved for heaven's sake!). Oh and because the second car bit the dust in the midst of all of this. So, we show up for the 11:30p and 12a feeding together while our girls sleep knowing our roommate is there in care of an emergency. The day shift has tried everything under the sun to try and convince me I just HAD to be there during day shift.. trust me, I want to be with the twins all the time, but I'm not willing to sacrifice the older girls to do so. Compromise has been a huge part of this journey.

The NICU day staff has finally started to bend our way and help. They're doing a discharge class an hour later than normal for us and letting us bring the older girls. DH is going to be taking his leave from work soon so that we can do the checkboxes that there is no compromising on.

Thank you both of you for understanding. Knowing that someone gets where I am is so amazingly helpful.

xladybassx · March 2014

I don't have older kids so I can't relate to that part of what you are going through, but I understand the part about the end of the NICU stay being really difficult. There were three times where we were told to expect a homecoming, and the first two times it was cancelled because they were not ready. The third time one was ready and the other had to be left behind and that was really hard. The anticipation of expecting them to come home and then the disappointment of being told they still were not ready was unbearable. We had no support at home because all of our family lives 1,000 miles away so we knew before they came home that we would be taking on a lot all by ourselves and that was overwhelming. There were a lot of logistics that still needed to be figured out at the end (like the cribs finally arriving about a week before the first came home), and that just added to the stress. I'm not sure if anyone else felt this way, but we both grew really attached to the nurses and doctors, our "NICU family", and it was really hard to leave them. I personally spent about 500 hours in the NICU and it became my whole life. Prior to that I was on hospital bed rest for a month. Adjusting to life away from the hospital and in the "real world" after becoming so used to my support system of medical professionals was difficult. I was taken by surprise too, at how difficult the end would be. Once it is over though, it won't take long before you adjust to your new routine.

gault530 · March 2014

I found that I was more frustrated at the end than in the beginning. Like you said, it's hard to look at your babies who appear to be health newborns and not want to run home with them. Because the day that they'll go home is getting so much closer, the days seem so long and like it just won't get here. Also, give yourself some credit, you've been going at this for awhile and it wears you down. It's so hard to have an older child (or children) to take care and give your full attention to your babies, much less time for yourself.

Hang in there, it will be over soon!

Tylynngrace · March 2014

I don't have any older children but I can relate about how hard and frustrating the end of the nicu stay was. I felt like the doctors were just making up reasons to keep him by the end. All I could think is that they were using him as an easy target to get money. And I'm not sure I was wrong for thinking that. By the end I was demanding my child comes home and getting stabby with the doctors that claimed he had high blood pressure when the cardiologist said it was perfect. Being frustrated and stressed is normal and you have every right to feel that way. Just know it'll all be over soon and you'll be back to your old self with your family back together.

I'll be thinking about you and your family, keep your head up momma!

thishappyhouse · March 2014

I truly believe that no matter how long your NICU stay is the hardest part is the first 25% of the stay and the last 25% of the stay!

I hope they are home with you soon! hugs!

Bluebird2318 · March 2014

I didn't have any older children when DD was in NICU and I can only imagine the extra stress that adds to the experience! My thoughts are with you and your family.

I do remember, however, that the end of the NICU journey definitely was one of the hardest parts! Earlier on it was so easy to understand and accept the fact that she was not ready to go home, that she needed more time to develop and grow. Toward the end though, when she was eating and breathing on her own and it was just that ONE apnea event or that ONE brady event every few days that kept her there was maddening. But it can't last forever! FX that your family is home together soon!

kimmee1997 · March 2014

We had a relatively short stay in nicu compared to many here (my son was there for 2 weeks). But it is definitely harder when you have other children home. I felt like no matter how I did it, I was failing one of my sons. I'm sorry you are going through that. But just keep chugging along. It won't be long before you all will be together finally! I just had to keep telling myself that. Every day that passes you are one step closer to you babies going home with you!

luvboston · March 2014

The end of the nicu stay is hell, I totally lost it the second to last week. Just remember every day you are closer to going home!

Missi576 · March 2014

Thank you everyone.

To add to the fun, I haven't gotten to see them for two days. I came down with mastitis, sinusitis, and a migraine with a 103.5 fever yesterday morning. Ugh. Feeling much better today though, but my milk supply has dropped through the floor

Missi576 · April 2014

MaiTaiBeth said:

I'm so sorry you are not feeling well. I hope you are better very soon! Hugs!

Up to three days I've banned myself from the NICU.

How are you holding up? You update us on your adorable little one, but I worry about you as well.

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