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!

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.

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.

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.

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

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!"