Tuesday, June 30, 2009

The big 4-0!

I can't believe time has gotten away from me and I haven't told you yet that the twins turned 40 last Thursday! 40 weeks, that is. Or Sara prefers 0 (zero) - you know how women are...who wants to be 40? The doctors have been tracking them by their gestationally corrected timeframe and up until now they have been a negative. So officially as of June 24 they were supposed to be born and are now considered fully gestated.

They went 11 days between pediatrician appointments and measured last Friday at:
Adam - 7lb 6oz, 20 1/2"...a gain of a pound and 1 1/4"
Sara - 6lb 15oz, 20"...a gain of 11oz and 3/4"

Holy cow! They are looking like healthy, newborn babies and have officially outgrown their preemie clothes. Never to return, no going back!

Basically we are to keep doing what we are doing and go back in 2 weeks to check their weight again. They are eating every 4 hours during the day now and 5 during the night. And they are having more awake time for studying things. Of course yesterday Sara was awake in the morning and Adam in the afternoon so there are advantages and disadvantages to not having them synchronized.

We will have Adam's monitor downloaded again tomorrow morning and ask for ASAP results to check his apneas. If needed, we'd like to start his caffeine before the holiday weekend. Honestly, I don't think he needs it. And I think he is outgrowing his reflux. We haven't seen him twist and turn his belly and get red in the face because he is going to spit up in a few days now. So if his monitor is clear, we will start backing off the rice and see how it goes. He visits the cardiologist Thursday to make sure there are no lingering issues from his SVT (rapid heart rate) in the hospital.

As far as Sara, while I was concerned she had gone 12 days between stools, the doctor didn't think it was an issue. Since I am nursing her almost every time, she is getting more straight breast milk and it doesn't have anything in it that the body needs to expel. We wish it was a little more frequent so maybe it would help with her gas. I don't know how many times a day I say 'Oh, Sara..." She will skip the monitor download appointment and have her own around July 20. Her last report indicated she had 162 alarms since she had been home...and all 162 were false! Before switching her to the "belt" the lead pads would shift, fall off, and not pick up her breathing very well when she was sleeping sound. If her next report is as boring, we will turn in the monitor and she can be wire-free! Certainly a day to celebrate!

Friday, June 26, 2009

Adam's eyes

We have talked off and on about Adam's eyes and how he has follow up eye appointments. I thought I would explain what those are about. When both kids were in the NICU, they received a screening for Retinopathy of Prematurity (ROP). This test is performed on any baby born at less than 30 weeks gestation or with a birth weight under 1500 grams (3lbs). Both Adam and Sara met these parameters. ROP is an eye condition which affects the blood vessels of the retina. There are 4 stages - normal and Stage 1-3. The eye begins at the normal stage and then progressively worsens through the various stages until reverting (hopefully) back to normalcy. Mild ROP of Stages 1 and 2 are common in about 65% of preemies and settle on their own. Only a small proportion of babies develop a disease or Stage 3 which, if not treated, can seriously affect a baby's sight or cause blindness.

When a baby is born early, the blood vessels of the retina are not fully developed. After birth something triggers the blood vessels to start to grow abnormally and this forms scar tissue. The main cause of ROP is prematurity itself. The amount of oxygen treatment required and the baby's general condition may also influence whether ROP develops or becomes severe.

About an hour before the exam, eye drops are put in the eye to dilate it. The ophthalmologist uses a speculum to hold the eyelid open and places a scope gently on the surface of the eye to examine the retina. Obviously this is a little uncomfortable for them but they have handled it like troopers, probably better than I would having something propping my eye open!

Both Adam and Sara were screened for ROP initially during the week of April 20. Sara was diagnosed with the lowest stage of immaturity and had one follow up appointment after being dismissed from the hospital. Adam had a Stage 1 in his left eye and Stage 2 in the right. Visually the doctor could see a white line surrounding his retina and the veins and arteries in his eyes were more pronounced and a little "squiggly." He had 2 more exams while in the hospital and has since had 2 more after being discharged. His most recent visit indicated the left eye is now at the lowest stage of immaturity and the right eye is just a slight Stage 1 - the white line around his retina had receded. He goes back to the Illinois Eye Center for another follow up in 2 weeks. Hopefully that will be his last visit as the results this week had shown quite a bit of improvement.

Wednesday, June 24, 2009

Are you a follower?

I have to tell you about this experience I had - it's been on my mind every day since it happened 1 1/2 weeks ago. It was the day that we took the kids to church for the first time. We came late to avoid large amounts of people and just sat in the lobby. When it was over, we moved to a corner to let the crowd thin and say hi to a few people. Unfortunately, the corner we picked was in direct line for parents heading to pick up their children. Or maybe fortunately. Twins draw attention, especially when they are in a cool double decker stroller. But in the middle of the attention came a woman holding her own baby carrier. She approached us very excited and had tears in her eyes. I still remember her voice - "Is this them? Are these the twins we've been praying for?" Her husband turned around and came back when he heard her. He was crying, too, as he asked for confirmation - "Are these the twins?" We told them they were.

Shannon and I just stood there looking at them, starting to cry ourselves. It was so moving. And I'll tell you why. We have absolutely no idea who those people were. We still don't know their names. Or how they are connected to the information in any way. But they knew our kids, had been praying for them, and were blessed to meet the fruit of their efforts.

Obviously we know some of the folks who follow our blog, homepage updates, or pictures depicting our journey since April 2. But I'm wondering if we could know more. We certainly don't want to exploit you in any way. It's just that I want to be able to tell the kids about you when they are older...when we talk about them being born 12 weeks early and the awesome story of how a little girl went home before she was supposed to know how to drink a bottle and a little boy had every digestive test possible and all came up a big fat negative. I am confident it was the ear-deafening, concert volume chorus of voices that prayed my kids into the doctors saying over and over again - 'They're Superstars!'

If I had a chance to get all of you together for a party, I would cook you the most fabulous desserts and stand in front of you to say absolutely nothing. I have no words. Hopefully you would just know.

So if you follow our journey in any way, will you shoot us an email and let us know? Just send it to mofamily, then hit the @ symbol and finish with mollenhauers.us. Put "I do" in the subject line and we'll know it's you. Maybe give us a name, city and state, and how you heard about us. Feel free to write the kids a little note and we'll save it for their baby book.

Tuesday, June 23, 2009

No Starbucks for Adam

It's official - don't caffeinate. For now anyway. Dr. Neese liked my approach of seeing of Adam's apnea is due to reflux. If he would be started on caffeine and that wasn't the issue, it would cause his reflux to be worse and therefore, his apnea to be worse. Caffeine would cause the stomach muscles to contract more. So we are to continue on the path of feeding him 3t of rice with his bottles and hold off on breastfeeding for now. However, downloading the monitor again after just a few days won't give enough information for comparison purposes. He would prefer 2 weeks. So we will probably get it done prior to the July 4th weekend so we can get results before the holiday. And Zantac or something similar would not be the next step because that is simply an acid reducer rather than something that stops reflux. We could consider it if his reflux was caused by acid but it's not. He received it when he was in the NICU just after his stomach was irritated by the vaccuum that suctioned out his stomach contents so it made more sense at that time.

I know Dr. McCarthy is very competent but I'm sure as the on-call doctor she was just going by what would most likely be a typical cause rather than knowing his history. Another time that it was helpful to push and ask questions to make sure of a direction because we know our kids best.

Sunday, June 21, 2009

Happy Father's Day

Dear Dad:

What can we say? We haven't known you long but it sure feels like a lifetime! That noisy place inside the little box was scary sometimes but we always felt safe when you were there. You kept us warm when we laid on your chest. You talked to us all the time. And sometimes you and a friend even prayed for us really early in the morning - it made us feel a lot stronger. We sure are glad that we are home now and can spend time with you all day instead of just a couple bottles a day. I know you were supposed to be working but we're happy that you weren't. Mama said it helped her a lot. We look forward to our daddy breakfasts that we get with you. So far we think you're the greatest!

Obviously there is a limit as to what we can get you for your special day but we thought it wouldn't be right if we didn't each get you a gift. Since I have the spunkier personality, it seemed to fit that I get you a new motorcycle! Shiny red - your favorite color! You have done so much for me, I think it was appropriate. I know you are worried about money right now but it was such a good deal I couldn't pass it up! Thanks for dancing with me in the nursery the other night - I bet we'll have a lot of lessons.

And I decided to be more practical with my gift and give you one of my favorite things! Sleep! Sister kept trying to wake up but I told her to go back to sleep and stop ruining my gift. I hope you enjoyed the first 8 hour stretch you have had since sister came home! I can't wait for you to teach me more about those cool things in the garage that make loud noises.

We love you dad!

Adam Mo & Sara Mak

Friday, June 19, 2009

Are you awake yet?

We have been so thankful for the NICU for setting the kids on a schedule since birth. Especially with twins. That is one luxury most parents of newborns do not have! But we have finally reached a point in their feedings that they are getting enough satisfaction that they don't need to eat every 3 hours. We are trying to listen to them to see what they need and adjust to a new schedule. We'd rather not switch completely to "on demand" because there won't be any normalcy to it and they could possibly pick very different times. So far it seems 4 hours during the day is what works for them. But overnight is another story. Last night they ate at 10 so we set the alarm for 2. I got up and peeked at them in the crib and they were so sound asleep I really didn't want to disturb them. So I set the snooze for 30 minutes later. 2:30 and they still hadn't moved. 3am - no noise from the natives. 3:45 and Shannon joined me in the crib check. We are going on 6 hours and decided to pick them up to see if they would rouse. On the one hand, it is awesome that they slept that long. On the other, they are still quite small and we don't want them to have too big of a stretch or they won't get enough feedings in a day to have a high enough caloric intake for growth to continue. Plus, it's hard to set an alarm to! Sara is so quiet in her complaining that she doesn't wake us from a deep sleep and Adam goes from zero to tachycardic in about 15 seconds!

To caffeinate or not to caffeinate

Quite a big outing for the kids today. We headed back to OSF hospital for Adam's head ultrasound to check on his brain bleed. He was such a good boy to lay still for 15 minutes while the tech gooped up his head and took pictures. Of course his favorite orange pacifier always helps! Results will be sent to his pediatrician, Dr. Neese, which we will review at his appointment Friday. Glad that we were able to change Adam to Adam J Mollenhauer in their computer system instead of Adam A. OSF keeps track of twin A and twin B at birth but then it gets in their records as a middle initial so we get all their mail for Adam A and Sara B.

Also a milestone for Sara as we turned in her car bed and declared officially that she is suited for her big girl car seat!

We stopped by the NICU to visit with the nurses that were on duty. Dr. Makwon happened to be there, as well, so it was nice to see the doctor that was assigned to both kids during their first 29 days of life. Everyone commented on how big they had gotten and how healthy they looked. Funny that when we go out in public, they draw attention everywhere they go not only for being twins but for being so small! One woman asked me yesterday if they were mine because she thought they were just born and my belly is completely gone. So everyone else is amazed at how small they are and those of us who know them well are amazed at how big they are!

Last on the list was to head up to the sleep lab and have their monitors downloaded. Sara's was full again from all the false alarms she had before switching her to the belt and then a few recently when it was applied too loose after bath time. We thought since we were there we might as well have Adam's analyzed since he had set it off 4-5 times since being home. I received a phone call from the nurse at Dr. Neese's office late in the afternoon saying Adam's results had already been analyzed and they wanted to start him back on caffeine. I asked why that was necessary when he only had a few alarms in 2 1/2 weeks. She responded that he had a significant number of alarms. This didn't make sense to me and the fact that she woke me from a nap didn't help in my processing the information, either. I'm sure the nurse seemed a little irritated with my questioning. She finally said the doctor who analyzed it said there were 15 alarms, 10 were for significant apnea (lack of breathing). This didn't help my confusion. We didn't hear the alarm go off 15 times. Do I have a faulty machine? Turns out that the monitor is set for a 20 second delay. However, 15 seconds is considered significant so the additional episodes were self-corrected before the alarm went off to notify us. Apparently we need a doctor's order to have the time reduced. Who was the doctor that analyzed this - can I speak with him? Dr. Javed interpreted the download and she gave me his number. I am familiar with him from a few times he saw the twins in the NICU. He was very helpful in showing us the x-rays of Adam's brain and more thoroughly explaining his brain bleed so I was happy it was a doctor I was comfortable and familiar with. I dialed the number, expecting to get his office, and instead heard "Hello?" Turns out it was his cell phone number! What a great open door opportunity to talk with him directly! His main concern in talking to the pediatrician's office was to find out if anything else was going on with Adam since being released from the hospital - was he fighting illness, how was he eating, any other issues, etc. - because he just sees a piece of paper with the monitor levels. I talked through Adam's progress with him and said there were no issues and he was doing so much better at home with his feedings. It is unusual for a baby at 39 weeks to go back on caffeine but some babies need it until 44 weeks. He asked if Adam was having any reflux and I said yes. That could possibly be what is causing him to "hiccup" with his breathing if the fluid coming up gets into his airway and pauses his breathing before he can clear it. Dr. Neese did say at our first appointment that if Adam's reflux caused more apneas we would step up treating it with something more than thickening his feeds with rice. I'm all for giving Adam what he needs. But caffeine is a brain stimulant. If the apnea is occurring because of the reflux, I feel like we aren't treating the problem and it will just continue. I called Dr. Neese's office back to get their thoughts on this. Unfortunately, he was out of the office at his daughter's wedding and the nurse would have to contact Dr. McCarthy who had left for the day. She suggested adding a 3rd teaspoon of rice to Adam's bottles to thicken them more and discuss further options with Dr. Neese next week. Since he was self-correcting the episodes, we can hold off on the caffeine temporarily. We have elevated the crib mattress a little again and increased the rice. I also am holding off nursing him until we know more because straight breast milk is the thinnest feeding option he can get. We will call Dr. Neese Monday to touch base on next steps and probably get another download mid week to see if these interim steps have made a difference.

I'm sure apnea even if full-term babies is not uncommon. Adults have issues with it as well. But it does make my pulse beat a little faster to know that while I am doing dishes, fixing dinner, putting in a load of laundry...my son could be laying in his crib not breathing. Makes me thankful that we have a monitor that will notify us if it does last more than 20 seconds. But still. All part of our "normal." And most of the time when people ask in public "But they're fine now, right?" I just respond with "Yep!"

Tuesday, June 16, 2009

Weeds

Holy cow they are growing like weeds! No wonder I have had to retire some of their preemie clothes already! A visit with Dr. Neese yesterday revealed new milestones...

Adam Joseph - 6lb 6oz, 19 1/4"
Sara Makenzie - 6lb 4oz, 19 1/4"

That was a 10oz and 3/4" gain for Adam in 6 days and an 8oz and 3/4" gain for Sara. It is so nice to see them looking healthy with round cheeks and thicker legs.

We have been settling into our new life of "managed chaos". I am nursing more often as they get the hang of it more. Nothing says true multi-tasking than the times I nurse them both at the same time! My aunt Robyn visited last week and brought her 3 year-old twin granddaughters, Peyton and Morgan. Quite the busyness in the house but all worked out well as Robyn helped with house tasks, making dinner, and baby duties, while still keeping track of the mobile twins. Peyton and Morgan are just fascinated with the babies and always wanted to look at them or hold them or see why they were making noise. They were 6 weeks premature themselves but you certainly wouldn't know by looking at them anymore. We ventured out one day for a nice jaunt in the stroller. And then the real fun came when we all went shopping and out to lunch. I will have to get used to the attention they draw - lots of comments and finger pointing. Most of the time I ignored it and just tried to remain focused on my company and finishing my meal.

Saturday night brought our first outing to church. We arrived late and sat in the lobby to watch the service on video monitors. Thankfully, there wasn't a large crowd but I am still amazed at the attention they get. One person asked if they were just born yesterday! We have to keep it in perspective that we have been around them for almost 11 weeks so to us they seem BIG but to others, they are tiny and still the size of a newborn or smaller.

My mom is coming tomorrow as the next shift of assistance. I am now officially working part-time, the majority from home. Shannon is hoping to finalize an employment direction this week. Once he settles into that, summer help will be nice as I establish a routine of caring for them by myself for the majority of the day.

Wednesday, June 10, 2009

Anything you can do, I can do...

The kids went to their pediatrician appointment this week and Sara proved that she really can excel at eating since her weight was the same as Adam's! Both are 5lb 12oz and 18 1/2" long. Hard to believe they have gained 3 pounds since birth and are 2-3" longer. Dr. Neese had no major concerns. They will continue to see him weekly until they reach full gestational age the week of June 24. We will add a little rice to each bottle to help with reflux. Sara is showing minimal signs. Adam you can pretty much count on him spitting up within 30 minutes of laying him back down in his crib. Not a lot but enough to increase laundry. And every other time he sneezes or has hiccups and it comes out his nose. That's gotta burn! Dr. Neese also recommended Milacon to help with their gas issues. Seriously, there are times we walk in the nursery and know you shouldn't light a match in there because the whole room will go up. Shannon has considered installing a vent fan combination as a light or maybe just one of those air fresheners that you can push. If he hangs it in the crib, the kids can release a pleasant fragrance just after one of them "toots!"

Adam also had another follow up eye appointment this week. His left eye remains at a Level I stage of immaturity and his right eye improved slightly and is currently a Level I as well. He goes back in 2 weeks for another peek. Next week he returns to OSF for a head ultrasound to review the status of his brain bleed again. Developmental follow up with Easter Seals will begin in January 2010. The first week of July he will see his cardiologist to check for signs of his SVT (rapid heart rate). He has set off his monitor 3 times so far - once for a bradycardia (low heart rate) and twice for apnea (cesation of breathing).

Thought I'd get you caught up on the nitty gritty facts of the week...

Friday, June 5, 2009

Video surveillance needed

I know, you are probably thinking - they have baby monitors so why in the world do they need a video surveillance system for the nursery? We don't. We need it for our bedroom to figure out how we are turning off the alarm clock!

I went to bed at 9 last night as Shannon was working on feeding both babies. Then I was going to get up for the 11:30 feeding, he would take 2:30, and I would take 5:30. I don't even remember him getting in bed. I heard the alarm go off at 11:15 and next thing I know it's 11:53! I still had to make a new batch of breast milk with formula added for Sara and get Adam's bottle with rice mix ready. Bottles made, both babies diaper changed, Adam sitting in a little chair on the floor, and Sara laying on my lap on a Boppy pillow. 2 bottles in mouths - 12:06. Not bad, I thought to myself. I snuggled with Sara before putting her back to bed and left Adam in the little chair to calm his stomach while I pumped. Clean up duty and back in bed at 1:20. I turned the baby monitor back on next to the bed and remember telling Shannon I had run behind so he was going to snooze the alarm a little before getting up for the 2:30 feeding.

I remember him hitting the snooze button.

The next thing we hear is Adam screaming at the top of his lungs and his monitor making a BEEP BEEP...BEEP BEEP...BEEP BEEP. A new sequence that we hadn't heard before. Shannon and I looked at each other - "Did we sleep through a feeding?" It took us a second to get our bearings and realize it was 4am and that is exactly what happened. Shannon headed for the kitchen to get bottles and I went to calm my little jalapeno. Adam turns beat red when he is extremely upset. It doesn't take but a moment in my arms to calm him, though, and stop the monitor from telling us his heart rate was so high that he was tachacardic. And then there's Sara. Just laying there, eyes wide open, making a few squeaks. 'Brother, I've heard you cry - work yourself up and set that box off so mom and dad come to feed us!'

Once the craziness calmed down, we tried to figure out what happened. We both remember him hitting the snooze alarm and that's about it. Somehow the snooze had gotten turned off. Actually, all the alarms had gotten turned off. Not only that, but the baby monitor was turned off as well and I know it was on before I went to sleep at 1:30.

Thus, the need for video surveillance. To get to the bottom of which one of us in our sleep deprived state is turning things off and not realizing it!

Tuesday, June 2, 2009

Memory Lane

It's amazing to look at both of them laying side by side in their crib and remember what we went through for the past 2 months. Sara spent 44 days in the NICU, Adam 61. The last night Adam was in the hospital, I took a walk down memory lane before his 11:30pm feeding...

I can't tell you how many times I have pushed that elevator button for the 4th floor. Coming out of the elevator, I walked past the family waiting lounge. Every time we would visit, I would stop in there to go to the bathroom. And yes, I mean every time. I never knew how long we would be visiting and the last thing you want is a woman who just gave birth to not take the opportunity to use the restroom! Down the hall, past the pictures of nurses that work the NICU, many of whom cared for my kids at one time or another. And past the pictures of other preemies who have either gone on to live a thriving life or are remembered for the struggle they lost. Whether seated in a wheelchair or walking, they never ceased to amaze me and I often stopped to review them. When you see a picture of a baby born less than 2lb next to a picture of the same baby thriving years later, it gives you hope.

The square window with blinds that display the babies in Room 4, the last intermediate room Adam & Sara shared before permanently residing in 1218. The back corner is now occupied by other preemies and their parents but I will always remember peeking in there and getting the surprise of seeing Sara in an open air crib for the first time. Also the room that Adam's first blood transfusion was administered.

The room adjacent to Room 4 is bittersweet. I walked in on the nurse trying to get a catheter in Adam for a urine sample - not a good day. Probably the first time that my Mama instinct kicked in the most. It wasn't easy to see Adam's first cranial IV either. But it was the place where the twins' isolettes were placed side by side for the first time. Our first experiences all together as a family of 4.

Past the nurses' station and the double sinks that we spent who knows how long scrubbing up to our elbows at 2-minute intervals. It got to the point that we developed a pattern of washing that would fill the required time without having to set the timer. 4 quirts of soap on the sponge with the foot pump, get it wet, scrub the front and back of the left forearm, the front and back of the left hand, inside and outside of each finger, under the nails, repeat the cycle a 2nd time...rewet the sponge and mirror the process with the right. 2 minutes.

I peered through the window of Room 2. Sara's first home in the neonatal intensive care unit. The hustle and bustle of the nurses was the same, monitors going off at various preemie stations. This room was the first stop the staff made when they wheeled my hospital bed in to see the kids after delivery. Because of the level of magnesium sulfate in my system, I was not able to safely move from a bed to a wheelchair for easier transport. Interesting as I think about it that with the hours and hours we spent in this area of the NICU, I never saw another mom in a hospital bed chauffered to see her new bundles. This room held my first experience of unexpectedly holding Sara while she got the linens in her bed changed. She looked small when I would reach in the isolette to touch her but nothing made that reality hit home more than having her 2lb+ swaddled in my arms in a tangle of wires and feeling like I wasn't holding anything.

Room 1 was Adam's first home of his life. It was here that I learned quickly that my son's soothing trigger is to rub his head. As I looked at the spot where Adam's bed used to be, I remember so vividly sitting with Shannon to hear the news of Adam's Level 3 IVH brain bleed. The doctor drew a picture on a piece of paper for us to understand the workings of the brain and where the bleeding was located. I held it together for most of the explanation until Dr. Makwon spoke of increased chances of developmental issues and cerebral palsy. And then I just felt overcome. Shannon held me and comforted me - 'we don't know anything yet' he would say. It was also in a rocking chair with the curtain drawn around his area, holding him skin to skin, that I learned when Adam is very content, he "snores" a repeated sigh. We spent many hours kangarooing with our kids to form an early bond.

To look back on pictures now, it is shocking. I am amazed at how healthy they look in comparison. The experience seems so far away, yet at the same time I can close my eyes and be right back there sitting in my wheelchair and putting my hand through their isolette portholes so we could hold fingers. The NICU taught us commitment and compassion as parents, and just how fervent the love can be between a child and a parent. We are forever changed.