Together At Last

Its probably not the best idea for me to write this update after our second all nighter with all 3 babies but if I wait any longer, the latest won't be the latest anymore. Jolynne came home on Thursday, January 19th. She has gone through so much including two major surgeries. On the 3rd day of her life, we were told that she would likely pass away within a few hours without surgery, but that she may not even make it through that. Now I can look over and see her precious face anytime I want. I feel so grateful she was given this chance at life and even though it took some time, she is with us now and that is all that matters. I have learned over the past couple months, it doesnt always turn out that way, and realistically some parents dont get to take their babies home at all, and my heart breaks for them.

Originally estimated to come home by Valentines day, she came home almost a month sooner. She has done nothing but prove us all wrong from day 1. She really is a fighter. Mickey followed days behind her joining us on Sunday, the 22nd. They told me it was possible but honestly I didn't believe them, until the day before, Saturday when I talked to one of our primary nurses, she said we could take him home the next day if we wanted. After I hung up the phone with her, I sat at the kitchen table and cried for about 5 minutes. Mickey coming home meant so much, it meant our entire family would be together again, that all my babies had survived being born 10 weeks early at 2 and 1/2 pounds and overcome lung disease and abdominal surgery and so much more. It meant I didn't have to wake up the next day and get in the car and head to the hospital and eat lunch by myself in the hospital cafeteria. It meant I didn't have to say goodbye to any of my children at the end of the day and stare at their pictures at night because I couldn't see them next to me, and I didn't have to call up there to the hospital to get my nightly update (weights, poopy diapers, apnea spells, etc.) before going to bed. I didnt have to watch someone else go home with their baby, while I stayed next to the hospital bed with mine, listening to the monitors and wondering.....when. It was my turn. Those of you that have been keeping up with the blog know there where days when I wondered if this day would ever come, I referred to the NICU as a roller coaster, and a merry go round, I questioned my sanity at times, but somehow my babies found their way out, with a little help of course. That last day when one of doctors came to thank me for beng so understanding and patient and for being so "level headed", I almost laughed. I did not see myself that way. Maybe he was just saying it, or maybe he didnt realize how unlevel I felt at times, or maybe he did.

Sunday, with Mickey coming home marked the end of a a very long, challenging three months, and the beginning of the rest of our lives together. I felt more than a little emotional that day driving to the hospital and leaving the hospital and I will definitely miss a few people there who took the time to really be there for the babies and for me and Tommy. I realize this is their job as nurses and doctors and therapists: to heal the sick babies, but support the families, but what a difficult job! Working  with parents on a daily basis who are tired and scared and think they know more than you sometimes cannot be easy. The hard work they do every day did not go unnoticed and I so hope that other parents see that as much as we did.

Now Mickey, Joynne and Georgia are all home and the first couple hours they all slept quietly in their bouncers and then the fun began! It was a night with little sleep and lots of spit up and baby tears, but we all made it through. We survived! And so did the babies! All joking aside, Mickey does has some significant medical needs that we have to watch closely still, how we feed him so he doesnt choke, when we feed him so he has the energy, what we feed him and with what so he doesnt aspirate is so important. Same with Jolynne, what she eats, how much and how often play a huge role in her weight gain. They all have several medications they receive twice a day and they all are eating different formula recipes with different nipple sizes and its a lot to keep up with honesly, especially when you are sleep deprived, but luckily spending three months in the NICU taught me a lot and I feel very prepared for this. The next step is finding a routine and getting organized so that it gets easier.

I have to say as we close this chapter and move onto the next I feel I have really grown as person, becoming a parent for the first time, watching them struggle and then watching them heal and I have been so humbled by the support we have recieved from so many people, some that know us well, and some that we have not seen in many years. It has really opened my eyes to so much and I hope I can pay it forward throughout my life. Some may think I am crazy but yesterday when Tommy ran out to the store, I was looking down at all three of them and making sure they were all ok when I suddenly had the strangest, most comforting feeling that my dad was in the room. Since he passed, I usually feel an emptiness or something lacking when I think of him, I miss him so, but yesterday for a few minutes, I swear he was standing next to me. I could not see him or hear him, but I defintely felt him in a way I have not since he has been gone. I do believe in angels, and I believe in miracles. I have both in my life.

Mickey and Jolynne at the hospital the day Jo came home.

Don't tell her she can't do something, she will fight you on it, I wasn't kidding!

Hanging out with my girls!

Mickey checking out his new home.

Life Lessons for a New Father: Things I've Learned From the NICU Experience

 

The last 11 weeks have been incredible, stressful, challenging, and everything in between. Kara and I can see the “finish line” for our NICU experience so I thought it best to share some lessons I’ve learned based on our NICU experience.

1.  Being born premature only means that the babies are less prepared – nothing else. They are just like other babies and will continue to grow like other babies. I’ve not only seen my own babies’ inch their way forward each day but many other babies around the NICU that have faced long odds. I’ve seen parents taking their babies home with them that were originally born at 24-25 weeks. Is the journey harder? Sure, but it doesn’t make those little babies any less like other babies developing the same ways inside a woman’s body. The journey doesn’t stop when they come home, either. In fact, we never stop developing. I have learned as much in the last 11 weeks as any 11 week stretch of my entire life. I hope I continue to develop and grow the way they have.

2.  Being “feisty” and a “fighter” is a damn good thing. Both Jolynne and Mickey have had to deal with incredible issues since birth. Jolynne’s experience with having a hole in her intestine has been well documented by Kara on this blog and Jolynne has definitely showed us that being “tough” is not just for those who are older. She has displayed toughness at 3 days old that many people couldn’t imagine. Mickey has also showed grit and determination. From his lungs not being developed to aspirating food into them – he continues to grow and make advances. Georgia displays the same feistiness in different ways and I’m sure all three will drive their father crazy at times with their determined personalities.

3.  Bonding with the baby or babies is not just to help them heal. I won’t sit here and pretend that going to the NICU every day for 77 days hasn’t been challenging. It has been a HUGE ordeal. Sometimes I can’t get up there until 7pm or 8pm and simply can’t stay longer than an hour, but sitting there and seeing them sleep or just look at you has a way of healing any wounds. We have been conditioned to know that us (Kara and I) helps the babies, but I honestly think they help us even more.

4.  Accepting the unknown is difficult, but necessary. Each day has been different at the NICU. From thinking everything is going great to suddenly fighting the next battle – every day brings a challenge…and I’m just talking about what the parents deal with. However being a parent means you must accept at least some things are outside your control. This will be more apparent as the kids’ age and grow into the person they’re meant to be. It doesn’t make it any less difficult, but going through the NICU experience has made that abundantly clear even at just 11 weeks old. If I had to say to describe it, I would say that it has taught me to surrender to the present moment.

5.  Being patient and flexible are critical skills for parents. It isn’t easy to have your babies in the NICU and it isn’t any easier to have one at home (who cannot go to the NICU) and the other two in the NICU. One of the first things new parents hear from others extolling their advice is to “be patient” or “you will learn patience”. I always have considered myself a fairly patient man and even I’ve been tested. We want them home yesterday, but sitting back and realizing that the babies will be home when they are ready is something we must accept. Being flexible is necessary to take care of one baby, but even more so for three. There will be days and nights when the term “flexible” will take on a literal meaning. As the kids’ get older, they will no doubt test both areas, so it is good practice now while working with the NICU.

Lastly, I should point out that there are tremendous people in this world and the folks who work in the NICU are damn near the best of them. To the folks we see putting in long hours to keep our babies safe, healthy, and progressing – this isn’t a job for them; it is a calling. I can be as cynical as anyone when it comes to the destructive nature of humans, but maybe there’s hope for us. The folks who work tirelessly at the NICU (nurses, doctors, therapists, admin, etc.) are inspiring in many ways. They always have an even temper, calm demeanor, and a plan. The plan may change daily, but it isn’t guesswork and their intentions are always good. While I’m looking forward to NOT seeing them every day, we are eternally grateful for the work they have done and will continue to do.

 

So close, but...

I can see a light at the end of the long NICU tunnel. Its definitely there. Last week, I walked in and my baby boy did not have any oxygen in his nose. I lost my voice, my ability to speak, and I just stood there, in shock. This was a GREAT day, and one I was not expecting so soon. Mickey, who had from day one either had a tube down his throat or up his nose, was breathing all by himself and he was doing great! That moment might have been the best moment for me so far in this NICU journey next to their birth date and Georgia coming home. Its a close call only because it was bitter sweet leaving the other two there. My first baby coming home was an amazing feeling though and honestly my Georgia being home is probably the only thing that has kept me from losing my mind since, so thank you baby Georgia, you are a big help to mommy. Also to see my son who has struggled so and worked so hard just to breath and eat, do this on his own, my heart was melting. I was in tears. He lasted about 4 hours before they had to put the oxygen back in his nose, but he proved he could do it, he just needed a little more time, and for the first time, it was ok that he went back on oxygen. normally I would have been frustrated, but I was so happy he was able to go without at all, I didn't care it might be a few more days before it would become permanent.


Since then, he has been weened down slowly every 12 hours and if all continues to go well, he will be off the oxygen permanently tomorrow at this time. Go Mickey! You can do it! They also started feeding him again with super thick formula and he is doing well. They took his feeding tube out today! So, his goals are to get off the oxygen tomorrow, keep the feeding tube out by eating his full amount of food every 3 hours on his own (this is going to be tough as it takes a lot of energy) and no heart rate drops in 5 days and our little boy can come home. It sounds easy right? Its not. He is so close, but.... it wont be easy for him. I promise him every day that one day soon everything wont be so hard.

This is my baby boy without oxygen!

 

Jolynne has blown everyone away. She is tolerating her full feeding, but they wont take her IV out until she gains 25 grams or more for three days in a row. You might think this would be easy. But its not. She gained the last two nights but lost tonight, so we start over again. She is so so close, but....

Two months ago we all would have said Jolynne will be home last, then the past couple weeks all I have heard is that she will be home in no time at all and that Mickey has a ways to go. After today, I wonder will Mickey make it home before his sister? Its a race to the finish line. They are both so close, but still have these little hills they must climb first. For me it is the same roller coaster as always. Lately I have been so optimistic because they both are doing so well. I am so proud of my baby's. They have come so far from October 26th. They are right there! On the other hand, its tough being so close and having to wait one more week, one more day, one more second.. Its like anything else related to time I guess, the closer you get to it, the further away it seems to be. I just want them home. It seems silly to me at times that Jo stay in the hospital just because she needs to gain more weight. She can breath, she can eat, why does she need to stay? Well, they have good reason I guess, I try to remember that they are doing what is best for her.

Jo in a "milk coma"

I went back to work yesterday, part time at least until they are all home. Its actually good for me I think to not be at the hospital all day, every day. Funny how we all need a break from work once in awhile, but then sometimes going to work can provide us with a break. I am sure not everyone will understand that, but some will. It will be slightly more challenging when they are all home to juggle everything. You may wonder how I am going work and take care of three babies, and the answer is I have no idea.

This makes it all worth it!

So, all in all its good news, both Mickey and Jolynne could both be home this time next week if things go well. I cant even believe it. Please say a prayer for them and hope we don't have any more set backs. It is day 77 in the NICU, 11 weeks tomorrow. At this point in our journey, I know well enough that it can change quickly. I won't be surprised anymore if it doesn't happen, but I am hoping (just like I have every other day since they were born) that one day this week, I will walk in and they will tell me I can take them home.