Wednesday, July 31, 2013

One month

Happy one month birthday boys!  We are so proud of all you have done this month!

The morning of their first month birthday started off so stressful. The boys were doing great, but the nurse was stressing me out. And I left for lunch feeling like the worst mom ever. But we had a blast that night. We were back with their primary night nurse who let us play together. We got to have a little photo shoot!  Granted, it was on a scale instead of the soft fuzzy blankets I had pictured, but still so much fun. Here's a few from the night. 

Family shot

Not so sure about this...

Yep, I want more space! Already acting like brothers :)

A little more content with tummy time

So the first month has definitely been up and down. Warren is doing 100% better now. He is down to no extra oxygen with a lower pressure on his cpap. And he tolerated having everything off for about 20 minutes with no episodes!  Yay!  Dean is tolerating 1 hour room air trials better after a blood transfusion but has not tried another full 3 hour trial. I am getting anxious and ready for them to be off all the extra tubes and such because they get so mad about it!  Every time the prongs are pushed back up the nose they cry like you are stabbing them. And there are actual tears, chin quivering sobs. Breaks my heart each time. But we are slowly getting there. Another few weeks??  But outside the breathing, they are doing so well!  Every test is normal and they are growing like crazy. Now up to 3 pounds 3 oz!  Chunkers! Love them so much and so grateful for them. 

Friday, July 26, 2013


I have never been the girl to envy what other people have. My neighbor gets a new car? Great. Furniture gets delivered? Good for them. That has never made me want to run out and purchase the same thing or feel like I was lacking. But I now find myself getting getting jealous of all the other babies in here. Twins born the day after the boys, at only 28.5 weeks, are already moved to the special care nursery. A baby boy born Monday at 29 weeks is already doing room air trials. Dean struggled so much, fought his way thru this room air trials last week, and they aren't letting him try again. He does so well with his breathing all day and it's just frustrating to see your child work so hard and be told he fails. It again makes me feel as though I let them down. Two more weeks would have made such a difference!  If only I could have made it 2 weeks. Cut their NICU time in half...

Look how frustrated Dean is. He's hiding his face...or thinking about pulling out his tubing??


I know our boys are doing great "for their gestational age". But just once I want to hear they're doing great period, without having to qualify it. I long for the day when I can hold Warren without alarms going off and having to worry about him getting enough oxygen during the transition. I want to be able to sit and rock them without it being too much stimulation that it makes their heart rates drop. I want to see their faces without being covered by tape and tubes. And I want to feed them myself, not watch it go down a tube by force over an hour. As we're approaching 1 month on Monday, it's beginning to get to me. (At least today, never know tomorrow) And I'm just so tired.  So is Warren...

We saw improvements every few days for those first several weeks. But none in the last week. Maybe that's what is making this harder today??

Friday, July 19, 2013

Great Day

Today has been a wonderful day. Warren decided to straighten up, for the most part, yesterday. Some of the nurses who had him his first days came back and worked with him again and he seemed almost comforted by that. So far today he has required no extra oxygen. His cpap is turned to a higher setting so he receives more forceful air delivery, but it is the same air we are breathing. So proud of him and his hard work!  He tolerated some big changes today, too. He moved isolets!  Same location, just to a new, clean one. This required unhooking him from all the equipment. And while we were at it, we weighed him on the big boy scale, gave him a bath, and I got to hold him (for just a few minutes) without all the headgear. He's got such a cute head of dark hair!  He looks so much like his daddy...

And Dean has just finished hour 2 of 3 for his second room air trial. He also got a bath today, though he wasn't as upset by this as his brother!  And then I put on his hat I made while on bedrest, wrapped him in a blanket, and held him like a regular baby.  Maybe regular isn't the right word...term baby?  Anyway, he was swaddled in my arms, looking up at me with his big blue eyes. So precious. He's now back in the isolet finishing his feeding, resting comfortably at 97% saturation. 

As I am able to be more involved in their care, as nurses get to know me better and feel more comfortable with me stepping in, I am finally starting to feel somewhat like a mom. It's hard, when your child lives in the box, to have a connection. Though one little look, seeing their eyes open, holding them, etc all help significantly. It's just not what you picture when you learn you are pregnant. And we had months to prepare ourselves for the reality that they would likely be very early. I cannot imagine how hard it would be to suddenly go into labor. Or for the term babies born sick, when parents have to leave them behind when they are discharged, and there was no advanced warning of that. One of the few things about bedrest and hospitalization I have to be thankful for. 

I will be posting pictures again soon!  I cannot believe how much they have grown.  Only about 100 grams over birthweight but up over 300 grams from their low point!  

Wednesday, July 17, 2013

New normal

One would think, given that I spend all day in the NICU with infants I can't really interact all that much with, that I would have all this time to blog and keep people updated, to remember and look back on these days. Clearly not working out. My days are busier than I would have expected. And I used to use this initially as a way to vent, then to celebrate our daughter, then to grieve, and then for prayer. And now, I don't know what I am feeling most of the time. A lot of overwhelmed with this jumble of emotions I don't quite know how to express. 

The boys are now 18 days old. Craziness. It seems like ages ago I was in that hospital bed fighting labor and trying to give the boys another day, another week. And yet time is going so fast. We are now back over birth weight!  Warren and Dean go back and forth for who is weighing the most on any given day. Warren is long and thin and Dean is shorter and more robust. But they are both growing and looking so much better than last week, less fragile. 

Dean is moving right along. He remains on room air with breathing assistance from the bubble cpap. He no longer needs a chin strap to keep his oxygen saturation high and is loving the freedom. He recovers quicker from his assessments with less help. And he has some lungs!  He can cry with the best of them. His feedings have progressed to 2/3 an ounce so they have stopped all IV supplements and removed his picc line. He's growing up so fast!

Warren is having a tougher road. His lungs were less developed from the beginning, requiring a second dose of surfactant. And then he was thriving. The past several days have been more difficult for him. He has gone up on his oxygen, currently at 32%, with more frequent desats (oxygen saturation dropping below 80). He has struggled with his feedings, going up and down, and is currently receiving all nutrition via his picc line. They will resume feedings today. He's had 3 chest X-rays so far, all normal, trying to see why he is struggling to digest and breathe. He has several episodes a day, 5 in the last hour, of apnea and bradycardia. This causes the scary sounding alarm to go off. The only me that sends nurses running. But he remains active and alert. And when I hold him, he gradually works his way back to room air. He is such a sweet boy and cuddles right up to his momma. Last week there were talks of him being ready to try breathing without the cpap, this week it was turned up. Up and down we go. 

So my day consists of the following: pumping, temperature check and diaper change on Warren, watch nurse mess with cpap and position, temperature check and diaper change in Dean, watch nurse mess with his cpap while he cries hysterically as if someone were stabbing him. This cycle takes 1 hour and 45 minutes and is repeated every 3 hours. Once each day I get to hold one of my sons during that in between time provided they are having a decent day and no other tests have been done.  During 2 other breaks I get food real quick. Which leaves me with this mid morning break to journal, read to them, etc. Unless they are having bad days and monitors are going off constantly. And the I spend that hour trying to help get them adjusted or staring down the nurse if she is not being attentive enough....

So we could all use continued prayer, especially little Warren today. And its not all stressful. Sometimes it is peaceful and wonderful. 

Andrew reading the Jesus Storybook to Dean last night during family time. 

Wednesday, July 10, 2013

Week 1 NICU: roller coaster

I still cannot believe I have 2 little boys. I look at them, and can't believe they came out of me. It is all so surreal. And they are just so cute!  (Not biased at all...)

Our first week in the NICU has been up and down. I've now been out of the hospital for a week and a, adjusting to being upright again. I'm surprised how little the weakness is affecting me now...though I guess I don't really do a whole lot of activity during the day. I love sleeping in my own bed, sitting up to eat, walking to get something for myself, and standing in the shower. But I hate being away from my boys. I am there for at least 12 hours a day, yet there is this moment of gutrenching guilt each time I leave. Like I am abandoning my children and leaving them with strangers. And they seem to look just a little more sad as we are saying goodbye. Breaks my heart...

The first days in the NICU were far better than I expected. Warren and Dean were both doing great, already on room air with the assistance of the bubble cpap. Their vitals looked good. All tests came back normal expect for PDAs in their hearts which responded quickly to meds. And so I thought I could handle it, no problem. What we learned is that there is a honeymoon period with premies, almost like they don't realize they're out in the world yet. Well, they know now. And it makes them so mad!  

They have the most pitiful cries you will ever hear. Warren's is a little higher pitched than Dean's, but they both sound more like whimpers than anything else. Heart rates rise to well over 200 when they get upset, causing monitors to beep. Then, because they're just ticked, they hold their breath.  More beeps on the monitor. And then finally their body can't take it anymore and heart rates plummet causing the scary alarm. It takes way too long for their oxygen levels to rise back up to the acceptable 82%. And I just stand there helpless, because there is nothing that can be done. 

Today is a good day. Both boys are behaving, I have been reading to them, they are calm. But some days there seem to be this constant alarm going off. One of them is struggling and as soon as he recovers, the other starts up. I can't help, and sometimes I'm in the way. And at those moments, I don't feel like their mom. I struggle to know my place in all this. Those bad days we have to be hands off. So all I get to do for 12 hours is look at them though the plastic. Watch them fight for their lives. And try to trust that God will continue to carry them through. The doctor this morning said being in the NICU is a humbling experience because there is really very little he can do. And at those times, I am so thankful to trust in a God who is bigger than all this. Because otherwise one would just drown in this environment. 

Then there are moments when we get to hold the boys and we fall in love all over again. And everything I've been through since January makes it all worth it. 

Mommy and Dean

Daddy and Warren

Tuesday, July 9, 2013

Warren and Dean

Wow, what a whirlwind. I'm not even sure where to begin or how to describe the past 10 days. I think I'm going to divide and conquer, starting with day one and catching up.

On June 28, I was taken to labor and delivery with increased frequency and intensity of contractions. I was up to one every 3-4 minutes. After a few hours of that, and no relief from meds, I was moved to the other hall. And my contractions promptly settled down. That Friday was the best day I had in quite a while with regard to contractions. At that moment I decided the boys were going to be stuck inside of me forever and I would spend 15 weeks total in labor. We returned to our normal room that night. And, of course, contractions resumed immediately. Literally, within 20 minutes I was in severe pain again. 

The following day was fairly typical for me until around 4 when things started picking up. I assumed it was more of the same, my "new normal" according to the doctor. So I requested my daily terbutaline shot to help with intensity and was informed my heart rate was too high. (I was at 120 resting.  Maybe my body was trying to tell me something??) So he said the only thing he could do was a physical vaginal exam, which hadn't been done since the pessary. I almost refused, thought I knew for sure everything would be fine. And after 6 weeks of constant contractions I was so sore I didn't want anybody in my personal space. Well, good thing I didn't refuse because we were told at 5:30 that I was going into labor. Doctor calmly said, "we'll do a section tonight" like it was nothing. I freaked momentarily. Then I was put on magnesium sulfate and promptly lost all ability to think at all. 

We returned to labor and delivery at 6:45. After a strong reaction to the mag, it was stopped early. But it helped significantly with my contractions so I thought maybe we could wait another few days. I could handle the pain. The nurse said that wasn't an option as the risk of infection was too high. We were told at 7 that they would be taking me to surgery at 7:30. We both freaked. Then prayed. Then cried. Then prayed some more. I had carried the boys as long as my body would possibly let me. 

By the time I got to the OR, I was 5 cm dilated. Everything was set, I got my spinal, Andrew was brought in, and away we went!  Warren Andrew Savant was born at 7:54 pm on June 29, 2013. He weighed 2 lbs 5 oz and came out screaming, one hand raised straight up. He did it! (He was the one wedged in my pelvis causing my late pregnancy issues). Dean Michael Savant was born at 7:55 and weighed exactly the same, 2 lbs 5 oz. Our calm baby came out the same way, nice and relaxed. Andrew saw them as they were pulled out and told me they were beautiful. I was taken to recovery and sent Andrew to stay with the boys. 

After some vague amount of time, maybe an hour? Maybe several? I was wheeled back to see my boys. They were just perfect. They didn't look so tiny to me, all swaddled in their isolets. And they were so cute!  I couldn't believe I was looking at my boys!  That I could see their little bodies outside of me. And that they were okay. More than okay, they looked so good!  I fell in love instantly. That same switch as with Reagan was flipped. These are my children, and I knew in that moment I would do anything for them. You know it before then, but there is just something so special about the first time you lay eyes on them. 

After that there were some days of physical recovery for me balanced with trying to see the boys and spend time with them, share time with family, allow myself to heal and rest, etc. All I wanted was to sit with my boys, but my body just wouldn't cooperate. I've come a long way in the past 10 days with healing and only really feel it by the end of the day. Time is now spent trying to figure out how to be a mom to 2 babies when I can't really do anything for them, can't hold them, and recently can't really even touch them. It breaks my heart. 

Warren Andrew

Dean Michael