Saturday, July 11, 2009

The Roller Coaster Continues

Brooke and I have been very lucky with this blog. We’ve managed to build a following somehow, and we’ve got readers from all over the continent. We get comments from friends, family members, message board people, and complete strangers. We’re not sure how this happened, but we’re amazed by it every day. Today’s post, though, will be one that only NICU parents will be able to fully understand.

We both woke up tired today. It was the first day that at least one of us wasn’t driving up to the NICU for a morning visit. I cut the grass, Brooke cleaned the house, and we were both in bad moods. We’re just so tired from our constant worry and constant driving back and forth to St. Peters. Sleep is hard to come by, and when it comes it’s usually filled with tossing and turning. It was a long time getting pregnant, and a long six-month pregnancy, and now it’s been an unbelievably long two weeks.

We knew we needed a break, which is why we planned a date-night for tonight. We were going to visit the babies, then go to a nice dinner at a restaurant by the hospital, followed by a movie at a local theatre, and capped off by a night-time visit. Stupid us; we should know better than to plan.

So we were in bad moods from how tired we were, then Brooke’s breast pump stopped working—it was the second breast pump that has busted (moral of the story: never rent a breast pump from Babies R Us!)—and then Dr. Hiatt called.

Dr. Hiatt called us just as we were leaving the house to give us an update. Charlie and Annaleigh were both doing well, but Lily’s murmur is becoming more of a concern. He’s not worried about her heart, but rather that the murmur is a sign of an infection in her lungs. They’re doing blood-work to confirm, and antibiotics have already been started just in case it comes back positive.

So we were down. Very down.

But when we visited our babies, everything changed. On a whim, I asked one of the nurses how long she thought it would be before we’d get to hold one of the babies. She looked at me with a confused expression and replied, “you’ve never held them?” And that set off a chain of events in which we each got to hold Charlie and then Annaleigh for about 15 minutes each. It was amazing!

The amount of work it took the nurses to give us that time was insane. Charlie is still on the respirator, plus he has an IV in his leg. So he had to be wrapped up in a blanket, the tubes from the respirator has to be moved and resized (all while still attached to his mouth), and he had to be removed from his isolette. But the nurse could not have been happier to make it happen for us. She seemed genuinely happy to do all that work, just so we could feel normal for a short time.

Only NICU parents could possibly understand this. Our babies are two weeks old today, and this was the first time we’ve been able to hold them. And we couldn’t cradle them against our chests, we couldn’t gently kiss their heads or stroke their backs. We had to let the nurses hand them to us, and we had to stay completely still, and we had to balance the tubes and wires in our free hand, and we had to watch their temperatures to make sure they didn’t drop. Most moms get to embrace their newborns within minutes; it’s taken us two weeks, and even that was limited. “Bittersweet” is the only word that makes sense.

After holding Charlie, we were surprised to be able to hold Annaleigh. She is the fidgety one and she doesn’t normally like to be disturbed too much. But other than a real quick incident just a second after the nurse handed her off to Brooke, she did great! She seemed to enjoy being in her mommy’s arms, and I have to confess that I don’t think I’ve ever seen a more beautiful sight in my life than Brooke gazing lovingly at her babies.

We had missed our movie but we couldn’t have cared less. We wanted to see a movie so we had something else to think about, to focus on—but what better to focus on than the thought of holding our babies!

So we were up. Very up!

We grabbed a quick dinner, stopped for some Carvel, and headed back for a second visit. We both held out hope that Lily would be doing well and that we’d be able to hold her. And that is where things got dicey.

We returned to the NICU to find that Lily’s episodes were getting bad. Her alarms were constantly sounding. Basically, she couldn’t seem to get enough oxygen. The on-call doctor rushed over to check on her and said that her murmur is really loud. She decided to put her back on some medication to help reduce any potential fluid in her lungs, on top of the antibiotics she was started on earlier today. More blood work was ordered, as well as an x-ray of her lungs. It was NOT what we were hoping for, and it was NOT fun to watch.

We had to leave. If we didn’t leave right then, we would have ended up panicking ourselves and have mild heart attacks. The doctor assured us that it wasn’t as serious as it looked; nonetheless, we felt like all the progress we’d made earlier in the day (by holding the babies) was gone. We felt just as worried, just as over-stressed, as we had earlier in the day.

And we were back down. Very down.

And that’s where we stand right now. We’ll call sometime in the middle of the night to get some results from Lily’s blood work and x-rays; hopefully it will be nothing major.

We keep plugging along. We keep going. We know this isn’t going to get easier, but when will we stop feeling this scared all the time? Will there be any rest for us? All you NICU parents out there, is there any peace of mind to be found?


Charlie looking snug in his bed; notice the picture of us handing inside his isolette, just so he knows we're always there with him


Charlie loves his mommy



A really happy moment for us


Me and Annaleigh, just chillin'

27 comments:

Runblondie26 said...

A beautiful sight. They look perfect in your arms. You keep plugging along, and we'll keep praying for you and your precious babies.

Abbey said...

I have been following your blog. I have tears in my eyes right now. You take each moment as they come and deal with one thing at a time. It is all you can do. I remember that moment of getting to hold my baby for the first time. It is incredible. Your family is in my prayers.

Sweet and Simple said...

Well, my surviving triplets were in the NICU for 76 days and I can honestly say that I never stopped worrying. Sorry, I can't give you any better news!

You will become more familiar with the wires, tubes, and alarms and more confident holding your babies and understanding the world around them, but you will still worry.

We lived 30 minutes from the hospital and made at least 2 trips a day to the hospital for 76 days...it is exhausting. I wish you all the best in this journey. Remember to take care of yourselves during this time too! The babies need a healthy mommy and daddy too!

I am sending many prayers your way and hope that the babies continue to get stronger. The "roller coaster" is the best description of the NICU and only parents who have been there will truly understand your emotions...it is just that way no matter how much someone else may try.

I will tell you....the scariest moment next to seeing the babies in the NICU for the first time...was the day we got to take them home and had to do it all on our own!

Good Luck to all of you and Stay Strong.

nora said...

i remember that feeling so so well...i did the same thing, asked when do you think i will be able to hold them? and a nurse said the same thing "you haven't held them yet??" it took a while for us to be able to do kangaroo care, or to be able to hold them with out a daggone 10 minute ordeal of moving wires, tubes, whatnot, wrapping them up and getting seated to have them handed to us. Just thinking about those days, and those extreme ups and downs I know you are going through..it brings tears to my eyes...but I glance over at my big sleeping boys (i don't even feel like i can call them babies anymore!) and I know every moment was more than worth it. I know you both feel the same. You guys and the three miracles are always in my prayers

Nora
aka
yankee42

Anonymous said...

My trio were only in the NICU for 27 days, but it was still so hard. Be happy. Be sad. Be mad. Be scared. Be tired. Be hopeful. Be tearful. Allow yourself to feel every emotion you are feeling. That is the only way to survive. Also, eat. Rent a hospital pump. They are much better. Ask the nurses anything even if you think that will say no...just like you did today. Remember, these are YOUR BABIES. You always need to share when you don't feel comfortable with the plan of care...or if you like it. Put pics of their siblings in each isolette too. That made me feel much better. Make sure you get pictures of your wedding bands on their arms and legs. I didn't do that, I wish I did. I am praying for all three, but especially Lily Bug.

Love,
Ginny
Mom to Evie, Maggie, and Josh
www.rajandginny.com/blog

Ivory said...

There is absolutely nothing better than getting to hold your child(ren) for the first time. Congratulations!!
The NICU is a horrible roller coaster. The highs are so high and the lows are so low. There is nothing like it and nothing any of us can say can prepare you for any of it. Hugs to you both!

Michele from FTHS said...

What to say. I have tears welling in my eyes as I write this. I can't imagine what you and Brooke are going through. Again, you two are amazingly strong ang all five of you will get through this. The question that remains I suppose is how much of a roller coaster will it be. This I do know...you all are in a lot of prayers. I am so glad you both got to hold two of your cherubs today. This must have been the best moments yet. Hang in there Brooke, Joe, and Little D's. The best is yet to be.

Stephanie said...

HOw amazing that you got to hold two of your precious babies! I will continue to pray for your family and that Lily will be stable enough for you to hold her very soon. I don't know what it is like to have babies in the NICU, I can't even imagine what you must be going through. Sending lots of love and prayers your way!

Lani said...

We were lucky enough to avoid a long hospital stay, but every moment they were in the hospital was an eternity to us. One nurse would tell us one thing, and another would tell us something completely different- just keep asking questions until you understand everything fully. I wish I could give you some advice to make it easier.. just keep doing what you are doing, and cut each other lots of slack during those "down" times. Disregard anything that is said in a sleep-deprived state. And know that you have lots and lots of people that care about your beautiful babies.
Also- my Lily had a slight heart murmur at birth too- that went away and hasn't returned since her first post-hospital dr. appt. I hope your Lily's resolves as well..

E. Merritt said...

We had the same thing happen when after a week a nurse asked if we had held the babies yet (30 weekers). We didn't know to ask, we just assumed someone would TELL us when we could hold them.

As mentioned before take time for yourselves. We did go to dinner once and a movie once in the two months our babies were in the NICU. Like most NICU mothers I would cry because I just wanted to be near my babies.

Jill said...

Another "stranger" here, finally de-lurking to give you my love. I actually somehow stumbled across Brooke's cooking blog a long time ago (fave recipe - pumpkin choc chip bread YUM) and was shocked when I checked it a month ago and saw the link to this blog and read your story. My heart goes out to the two of you, you have already been through SO much and now have to endure the NICU rollercoaster.

My husband and I also struggled with infertility, we were finally blessed with a pregnancy and I delivered our daughter at 27 weeks - 2 lbs 4 ounces. We were just about at the end of our 74-day NICU journey when your babies were born - we brought her home on July 2.

I can't tell you that the NICU journey gets any less tiring - but as your babies grow and become more stable, the rollercoaster doesn't seem to have as BIG of drops, and the ups start to outweigh the downs.

We finally got to hold our daughter when she was a week old, but only for 10 minutes and I remember having to watch the monitors to make sure she stayed stable while we held her. I remember asking the nurses "When will holding her not be 'stressful' for her??" And it just sucked that we couldn't hold OUR daughter when ever we wanted, we had to ask for help to do so, and then we were very limited on how often we could do it! Just one of the many frustrations you will feel during this journey.

The only advice I can give you is to try to focus on the positives...remind yourselves that as bad as things seem, you have blessings to count. SOME day, even though it seems like forever away, you will have a 'normal' life again. The journey will be long, but you will get through it because you just HAVE to.

When my daughter was born, the thought of 10 or more weeks in the NICU seemed like an eternity. We were there almost 11 weeks, and yes it was a LONG road. But here we are at home just over a week - no wires, tubes, monitors, nurses, doctors - finally enjoying what most parents get to enjoy right away.

Sending prayers and love from Iowa for all 5 of you!

Jill
www.iowavollbeer.blogspot.com

Katrina said...

Such sweet pictures!
Thoughts and prayers and keep on. I know you will. "He will never give us more than we can bear."

Kristi said...

Reading your blog brings back so many memories for me. Typing in your blog address each night reminds me of calling the NICU each night before I went to bed to check on the babies. (We had triplets at 26w2d)

Your bittersweet day reminded me of my most bittersweet day while the babies were in the nicu. It was about 2 weeks in, and the nurse let me hold one of our little boys for the very first time. Literally, as the nurse was handing him to me, the NICU doctor walked in and told us that our tiny, 1 1/2 daughter had NEC. It was the most wonderful day, and most awful day all mixed into one.


Will it stop being so scary...I really had to think about this question. In some ways, yes, it will get a little easier. Once they are officially "feeders and growers", and they're nice and chubby (well, 3 or 4 pounds, lol) then I could breathe a little easier. When all they were hooked up to was the heart monitor, it was easier for me. And we lived an hour and a half away from the hospital, which was so tough.


Just try to hang in there. I know it's so hard. :( I wish that there were something I could say to make things a little easier... Maybe try to take it one day at a time? Just remember breathing issues are totally normal at this age, and while it's wonderful to see them off of the vent,(and so stressful to see them still on it) they'll go off of it when they're ready. Try to remember that while they're on the vent, they can rest more and grow more. Apnea and bradycardia followed us up until the very end of our NICU stay, so don't look for that to be going away any time soon. It's totally normal for a baby that small to have those issues.

Infections are also normal, though they never get any less scary because you never know how severe they might be until they're almost over the infection. The NICU nurses are amazing though and catch those infections so fast.

Soon you'll get to start doing K-care, which is AMAZING. It will make your days so much brighter. :)


Thinking of your family and praying for you every day!

Kristi from TC
Mommy to triplets born at 26w2d

Marcie said...

I am so sorry you are having to go through this pain. I am not a NICU mom but I am a nurse who takes care of these babies for a living and I will be a NICU mom in the coming weeks. I am scared. What I can tell you is that no matter how much work it is, getting to hand a baby over to their parent for the first time is a magical moment for a nurse. I usually cry-I'm a sap. These hurdles you are going through seem so high. In the world of prematurity these babies seem to be doing remarkably well.

Melissa said...

Holding your child for the first time is such a wonderful feeling. I remember coming back from a pumping session and finding DH doing kangaroo care with our smaller boy. The nurse stopped me as I walked in an apologized... she hadn't realized I hadn't held the babies yet either. I told her it was awesome that their daddy got to hold him.. I would get my chance. I will be thinking of Lilly and hope things went well overnight. The NICU is such a roller coaster ride. Just wanted you to know we are thinking about you all the time. Hang in there.

- Melissa (from multiplemamas)

Anonymous said...

Again, reading your post brings everything back. Cassidy had a lung infection and needed to be put on a micro-dose of steroids (a very scary decision) and antibiotics. Dylan and Cassidy both needed blood transfusions...it's part of the game, so are the constant ups and downs...
Planning, as you know, is a joke. I too "planned" on getting pregnant the conventional way (that didn't happen) and i "planned" on having a "normal" pregnancy (that didn't happen either). All i can tell you is that getting pregnant wasn't what i expected, and being pregnant wasn't what i expected, but being a mom is soooooo much more than i ever expected.
Congrats on holding your babies. It's a major milestone. Celebrate the ups, and hold tight to each other on the downs.
I know it's a bit weird, but i have a medela pump in style advance (backpack) and i'd be willing to pass it along if you're interested. You can buy all new flanges, tubes, and parts at BRU, but the pump is yours if interested. I live in NJ and we can meet up...let me know. She can page me on the multiplemamas board or you can friend me on FB and we can talk there. BTW, the pump has magical powers. I pumped 80 oz a day with it!
As always, you're in my prayers.
April Q Erck (april062604 on the multiplemamas board)

Little Wonders said...

I am so sorry for the ups and downs of yesterday ... and really, almost any day in the NICU. I can honestly say the constant worry and the constant roller coaster ride was by far the worst of the 7.5 weeks our babies were in the hospital. I can't tell you when it will get better ... only that it will. For a long time, I dreaded walking in the NICU or I dreaded the phone calls from the doctors, never knowing what I would find, what the latest complication was. But as time goes on, your babies will have more better days, and those will make the bad ones that much more bearable. Being a NICU parents is like being part of some sort of a club you never wanted to be part of. Keep on sharing ... we're here for you.

Anonymous said...

Brooke and Joe,

I don't pretend to know what you're going through or why you're going through it. Sometimes in the darkest days there seems to be no reason for anything and it seems like there really is no light at the end of the tunnel; that much I know. I also know that one day-- who knows when-- all of this will be a distant memory and you'll look and see what you DO have-- and then everything will probably make more sense. Your family is in my prayers-- and a WHOLE LOT of other people's-- and I really do think that helps. But if you need more than prayers, like someone to call or some help, you know that I'm here for you. Please don't be shy about calling. I have a feeling a lot of other people feel the same way.

God bless you and those precious babies. Keep taking those pictures, as they'll keep you going for now and, one day, you'll look back on them with wonder.

Cheryl

Newman Family said...

Congratulations on getting to hold two of your babies! Brandon was born at 26 weeks, 1 day and I was not able to hold him until 2 weeks either. It is so difficult to just go and watch your babies each day and participate in care. I remember holding him the first time and how happy I was.

Unfortunately the NICU experience is a roller coaster. I remember Brandon having good days and then getting a call from the neonatologist that there was some problem. Brandon was in the NICU for 12 weeks and came home 2 weeks before his due date. He just turned one last Sunday and I can tell you that a year later it finally is easier.

If you want to visit my blog to see Brandon and his story it is http://karenandstu.blogspot.com

If you have any questions please feel free to contact me.

karenjacobs@optonline.net

The Home Cook said...

I can only imagine the roller coaster ride you guys have been on. I've been reading the blog every day and I can feel your excitement but also the fear. I'm so sorry you guys have to deal with all of this. ((HUGS))

The pictures of you guys holding Charlie and Annaleigh are amazing. I'm so very glad you got to have that experience.

I know it isn't easy but I know you guys will keep plugging along. If you need anything you know where to find me.

Anonymous said...

seeing those beautiful babies where they truly belong-- in your arms-- fills me with such happiness. i am praying extra hard for all of them but especially for little Lilylove. i hope that good news starts to arrive and keep coming, giving you two atleast a little peace of mind. because you deserve it more than anyone i know.
lots of love,
nikki

Gary said...

We only had a 52 day NICU journey with our trio (or the last of the trio out, anyway), so I am less qualified to give advice than others. I can tell you that everything you could possibly feel or think or do is normal, if that helps. We sort of settled into a routine; I hope you two will as well. I am praying for you guys (and Lily especially today) to have as smooth of a journey as possible through the NICU.

Gary (TC)

Anonymous said...

Keep fighting my little loves -
Mommy and Daddy need you to get strong so that you can get more snuggles.
Hang in guys - it's gonna happen and it's gonna be absolutely magnificent... Be positive...

All My Love Always, Auntie :) xoxoxoxoxoxoxo

snewman1978 said...

I am sitting here with tears in my eyes because your post brings back those NICU days all too well. I am very fortunate have only had my twins in the NICU for 3 weeks but like you said it is a hard journey for any preemie parents. It will get easier, rely on each other, the time that our babies spent in the NICU actually brought my husband and I closer together, if we can get through this, we can get through anything!
Congratulations on being able to hold them... hopefully soon all 5 of you will be home together!
-Sara (jasonlovessara from the MoM board)

Andrea said...

Congrats on holding two of the babies!!! I know exactly what you were/are going through. I had to wait 19 days to hold Ayden. It made me think of how lucky all of the moms are that get to hold their baby when they are first born. Please remember that you are still in our prayers!

edasmommy from the private board

Jeff and Kerry said...

Our little guys were in the NICU for 43 and 51 days, and I totally get what you're talking about when you are "very up" and "very down". It's so emotional having your babies so far away from you when they are "supposed" to be with you from the moment they take their first breaths.

I'm so, so glad you were able to hold two of your little fighters - the day will come soon when Lily will be strong enough for you to hold her, and I just cannot wait for that day for you guys!

Thinking about your family every single day...

(lovemy2boys from the SAIF, Multiples, and Preemies boards)

Anonymous said...

reading from st louis with tears rolling down my face. i'm so happy you finally got to hold two of your babies!! prayers are always coming your way from us! :)