First time NICU Parents

I wrote this for a friend who's sister in law just had a micro preemie (25-28 weekers) and was asking us for advice on the process.  I thought I'd share this on to anyone who might google preemie help or NICU information.  A little back history, my wife delivered our twin girls at 28wks. Baby A registered as a 25 weeker (550g) and Baby B registered as a 28 weeker (640g).  Baby B had a 2.5 month NICU stay at Le Bonheur Children's Hospital and Baby A had a 9.5 month stay, leaving with a G-tube and a trach + vent support. Both babies have been home since Oct. 12, 2011 and we are currently still on vent and MIC-KEY but in active trach trial procedures.

Here's a blog on NICU parental advice:

Advice.

1) Don't be afraid to ask questions and have doctors explain what something means. If they aren't willing to explain things, find another nurse or doctor who will. You are your child's best advocate and you should try your best to understand what things are happening to your baby.

2) Don't google everything they say. Most of the things that might come up in some of the growth and development of the baby will be generic terms or broad diagnosis and when you start to google things that are that broad you get lots of general explanations and or really gruesome pictures that don't apply to your baby.

3) Do google things like medicines and specific diagnosis. You will gain a better understanding of why and how certain things work and affect your child.

4) Get to know your health care professionals and build a relationship with them. They WILL become life long friends. You WILL see them a lot. Be attentive to those that work well with you and those that don't and figure out why to both.

5) Be available as much as you can when it comes to being interactive with your child. Use compression care as often as possible whenever they are doing ANYTHING in the Giraffe Beds. Ask to help with changing linens, fixing minor things in the bed, and asking to Kangaroo Care as soon as possible. The more interactions you get with your child in this fragile state not only helps your child grow and get to know you but it also helps you keep sane, mentally, emotionally and connectively with your child.

6) Get to know some of the other parents around you. Strength in numbers. Everyone in the NICU has a sick baby, learn what other parents are doing to help their babies grow.

7) If the hospital allows, bring comforting things from home for the baby to know you. Sleep with lovies, blankets, swaddling, bedding. Keep them in ziplock bags until the day they allow you to use it in their Giraffe Beds. Your scent is an extreme comfort to them. Also, if it's family centered care rooms, bring speakers and soft comforting music to play every now and then. No AC/DC yet  Mozart for babies is a GREAT start.

 Do spend some YOU time outside of the hospital, especially if it's family centered care rooms. We lived in the hospital, almost a month before going to see a movie together. The nurses had to kick us out bec. we hardly left the room. It's important for your mental stability to do things for you as well because your baby needs you to be healthy. Your baby is surrounded by the best team that can be taking care of them and they will notify you if you need to be there.

9) Leave a disposable film camera / old digital camera in the room just in case something funny happens while you are out on said date. Our nurses would dress the girls up in cute outfits or pose with the babies when a big accomplishment was made like finishing a whole 2 cc's of milk for the first time. (it's a big deal... i promise.) Those little moments are fun to have.

10) Blog/Journal/Keep a Diary of this journey. (you can read ours at http://iamknittogether.blogspot.com/ - start around 12.13.10 for the hospital journey or 10.28.10 for the whole journey) because it is therapy. We have over a year's worth of writing that we are now turning in to a book to give to our daughters when they get old enough to understand it to show them the amazing miracles that they are. It's also an easy way to keep your family and friends informed about what's going on bec. a lot of them won't be able to see them at this phase of life. Also keep a notepad and pen in the room for when therapists, doctors and specialists stop by and work with your baby while you are out. Have them leave a note, their pager numbers or contact info so you can contact them about anything they might have done.

Le Bonheur

I'll never forget the view of the Memphis skyline right now.

We've officially settled in to Le Bonheur, one of Memphis' finest hospitals for children and we can't be more amazed by our surroundings. The building we are in is about as new as our little Penny and we are so thankful to be under the care of these medical personel. Currently, Penelope is resting in her cozy super high tech Giraffe bed. She looks so tiny in her big ole bed, sort of spaceshipish.

They're going to be watching her over the next days and weeks. Dr. Krishnan came by after we had been in for a bit and said she is looking really good and that their long term hopes might be that the PDA might just grow up with her but that really only takes time. So as it stands we will have one daughter here and the other at The Pavilion. Although we don't see the repercussions right now between them, we feel the stress of having them separated. We feel so strongly to having them together in the same room but because Le Bonheur is a specialized hospital for children Lydia probably won't be kept here with her sister. We're going to keep pushing to see about having both of them in the same room though but for now... we'll make the drive together to see both girls until Bethany can drive again.

I should rest so we can meet the cardiovascular doctors in the morning.

Le Bonheur NICU out.

Penny

Absolute rush. I can still feel her warm body in my hands, her heart pulsing on my fingers and her cry tingling my ears.

My Baby Penelope.

Welcome to Our World

The world gained two more Chu's tonight. Our little twin girls are now out of the womb, breathing the air around us.

We started the c-section process this afternoon at around 4:20, with things going very routine.

The plan has always been for our Baby A (Penelope Anne) to come out first and Baby B (Lydia Belle) to come out second. But the girls had other thoughts this evening because as the delivery process happened, Lydia was the first to join us in the world and Penelope came out second.

Lydia Belle Chu born 12.22.2010 at 4:49pm at 2lbs 4oz.

Penelope Anne Chu born 12.22.2010 at 4:50 at 1lbs 8oz.

Just in case people haven't been following they are 2 months early and are preemies. Our Penelope was diagnosed as a Selective Intrauterine Growth Restriction baby and because she needed to come out early, Lydia had to as well even though she was completely fine.

I took quite a number of pictures but for now I'm only going to post these two from the birth.

Lydia Belle. She and her sister both came frank breech. She was unexpectedly first. My first glance over the curtain. As soon as she was able to, she began to cry her little mouse cries telling us she was upset that she was out. She also flailed and fought as she was carried to the care table.



Penelope Anne. So tiny!! She fought and flailed also on her way out, crying and making a fuss. The NICU doctor called her "a feisty one!" and was pleasantly surprised by her activity. It only solidifies what Bethany was feeling in the womb. Our Penny is a fighter.

A quick shot of us after the girls had been sent up to the NICU. Bethany did amazing! The process was so quick! The doctors, specialists and nurses at Methodist Germantown Women's and Children's Pavilion have been amazing.



Thank you ALL for your prayers and thoughts that you have given us over the past 7 months. We are extremely humbled by everyone that we know and don't know that have interceded for us and our babies. We still walk a precarious path with two tiny babies and we will continue to hope and pray that their little lives will be taken care of by our Jesus.

Doctor, Doctor Gimme The News

It's so cold in here... brrrr...

What a strange and emotional day yesterday ended up being. We were planning on a normal and uneventful day of going in for the ultrasound and seeing the babies, dashing around town to get final Christmas things done and prepare for our week in the hospital. Guess ole Robert Burns said it best...

We arrived at Dr. Schneider's office and went back for our ultrasound. Most of the exam went fairly normal but once the sonographer started to look at Penelope's heart and do measurements of the heart wall, the concerns started to come out. After we were done we went to the consult room to wait to hear what the doctor had to say about the situation. Dr. Schneider was actually out of town so we would be seeing another doctor that day. After the doctor came in she began to tell us that the signs of stress, thickening of the heart wall and fluid build up around Penny's heart, that would present themselves at the start of the third trimester had now shown themselves and it was time to go to the hospital. We were a bit taken aback bec. she didn't want to contact Dr. Schneider since he was on vacation but we said ok and dashed home to whirlwind pack a few things and have a few last moments as just the two of us in the house. Bethany's mom was with us, helping us stay a bit We took a few quick pics of us outside of the house since we don't have many of Bethany pregnant and I together so we needed to have at least that one on the way to the hospital!

We got to the hospital, checked in, and then shown to our room where the kind nurse started the process of getting us filed up and Bethany situated to be in the bed for a bit. She got these cool disk heart monitors that show the heart rates of the girls and sends the info to the nurse workstations so they can track them throughout the day and night. They're pesky little buggers and the nurse had to keep coming in to hunt them down when they decide to roll around and change positions. The reason for the heart monitors is because of Penny having the fluid around her heart. If the monitors started to show stress and tachycardia in Penny's heart rhythms or they start to plummet, that would be indicators that we needed to be sent straight to the OR to get them out. Throughout the afternoon and in to the evening, Penny only had one serious moment where her heart rate was sky high and the nurse was about to call the doctor. Thankfully Bethany remembered quickly that when we played our Mozart iPod for the girls they would settle down and so I grabbed my headphones and iPod, quickly started up an album and within a few min. both of the girl's heart rate were nice and calm. The nurse was stunned! She'd never seen anything like that before and was super impressed. So Mozart, for the win!! We'll be playing it as often as we can while we're in the NICU to help keep their little minds active and calm. It was hard for Bethany last night bec. the nurse had to keep coming in and waking her up to reconfigure the placements of the straps and the discs but got a few hours of sleep.

We were blessed yesterday afternoon and evening to have some family and a few friends over in the room. It was a nice distraction of the things that were going on around us and helpful in some cases because we began networking, learning about friends that were in the NICU that were nurses who could possibly help work our case. Today continued the steady stream of family members and a couple of friends helping make the day pass by a bit easier. It was nice to have them all here praying for us, encouraging us easing the nerves that we were starting to gather about the things we'll be facing tomorrow. Sister pedicures, mother's going out to get Chikfila nugget platters, best friend, preemie speech pathologist, out of town pregnant friend, happy aunts, engaged cousin, awesome NICU nurse who gave us amazing information for tomorrow, our resident OB friend and awesome molasses cookie making wife, are some of the folks that came by but the most encouraging thing today, though, was a visit from Pastor Larry, who came dashing in to the room to see how Bethany was after just arriving back in town. His praying for us tonight moved us all to tears and we're so grateful for his shepherding, loving heart.

I picked up momentum in writing but I really need to sleep so I'll just blast through the last of important information that you really are wanting.

Bethany received her last round of steroid shots this afternoon and about forty-five min. ago she started her Magnesium Sulfate(aka magwash) IV drip. The magwash caused her to get even more flushed and hot than where she was before. She's been consistently warm the last few weeks of the pregnancy and even more so since we've been in the hospital. It's made for some super chilly nights here and I had Bethany's mom bring my REI sleeping bag for some cozy sleep relief. Penny's heart rate has looked very steady all day today and Lydia has been a tumbler, rolling around all over the place making the nurses chase her down. We're praying that the heart rates continue to stay the same through tomorrow morning and in to the C section time. We're scheduled for a 4pm section.

Last few important notes.

1) I will be able to visit the babies about 1-2 hours after the section. I'll take as many pics as I can during that time and will be uploading them/showing them at the hospital. So stay posted here for the latest pics.

2) We're going to request that tomorrow and Thur. be limited to immediate family and clergy ONLY. We don't know exactly how many passes we will be given and are reserving the first few for our parents. We will let you know ASAP when we/they will be able to have visitors.

3) Because it is RSV season, no children under 12yrs old and anyone with ANY signs of a cold will be allowed to visit them. Thank you for understanding this!! The girls will be in a very special state of care during this time and we're going to do our best to keep them healthy and safe while they catch up to where they need to be in their growth.

We're so excited to finally be meeting these little gals face to face tomorrow. Your prayers and your thoughts at 4pm CDT will mean the world to us!!

Till then...

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One Day At a Time

It's hard to believe that in a few weeks my little girls will be here. Here in this world, this crazy messed up, broken & beautiful place. I've been given so much advice from so many people from so many walks of life. I love it but it's one of those things that it's a bit of an overload, having to categorize what is important for now use and what is important for use in the future with raising these girls. Life will definitely be taking a crazy turn here in a few weeks.

On an update about my girls, our Baby A is still trucking along. Things aren't getting worse, which is a blessing! We go weekly for appointments with our specialist to make sure things are still staying that way. She was about a week behind her sister still and we'll find out again this week where her weight is and how muh she has grown since last week. In terms of delivery, we will be shooting for a delivery date of the 22nd of Dec. because this will set us at twenty eight weeks in the pregnancy and will be the safest time to deliver both girls. Baby B will be the innocent bystander in this situation because she is doing just fine but will have to come out anyways. Baby A will be hopefully strong enough to be able to fight through any issues that might arise. These issues are call morbidities and are things that can cause long term damage to the baby, issues like cerebral palsy, poor motor skills, intestinal issues, blindness and a handful of other things. We would love to press through to thirty weeks but we will see what the situation is once we get closer to twenty eight.

We also finally named them. Baby A is Penelope Ann and Baby B is Lydia Belle. We wanted to keep the "A" and "B" monikers in there somehow because that's what they would have been until the end if we had gone through the pregnancy with a normal path. I didn't want to find out the sex nor name them before I saw them but alas, the best laid plans. I am glad that I know that they are girls and have been able to have that connecting time with them but that side of me that wanted that crazy surprise still says... "aww man.."

On choosing names for the babies, what a difficult crazy experience that is. I mean, it's something that has to stick with that person for the rest of their lives! Even if you do get your name legally changed, you were given one at birth! I really had wanted to wait until the day i saw them to name them but again with all the issues that we were having, needing some stability was important. Lydia was given her name because it would have been the name my mom would have given to the child she miscarried before me. I hadn't realize that my mom had miscarried until Bethany became part of the family. Bethany has a knack of getting information out of folks by just starting the question gatlin gun. I love it! So we chose that name for her. It means "seller of purple" Which is a royal color and she was also an important woman in the ministry of Paul.

Our Baby A had a bunch of names before we landed on Penelope. Evah, Annabelle, Analise but for some reason on the drive back from Houston, the name Penelope out of my head and we both agreed it was unique and different. I think it came about because I had seen a sign or billboard with one of the former actors of LOST in it and out came the name Penny. We decided to stick with the name when we found out the meaning of it. "Weaver" or "worker of cloth" is what her name means and with the battle she has been facing with her amniotic sac and the way it wraps around her like a silk cloth we saw it fitting. Also with the story of the Greek wife of Odysseus, Penelope was deeply committed to her husband and while he was at war and many suitors came for her she waived them off by saying that she was in the midst of weaving a tapestry for her husband and would not choose to try and see any man until it was done. She would nightly undo all the work she had done so that her work would never been done. Her name means "loyal" and "capable" which I just realized is also half of what my Chinese name means. Wow.

To have names given to my babies now make things even more real and even more emotional! Excitement, fright, joy, stress, angst, worry, happiness and everything else come rolling through whenever they want. Having to also keep in the back of my mind the concept of loss and to continue holding hands with that is hard. Our girls lost their friend Charlotte Hope a week ago which rang close to my heart. To be the same age as her parents, (i went to highschool with her mom) and to be in such close pregnancy timing as them, we had to really hold on while we were there because it was an emotional journey. And to update this post from when I started it, another friend close to us just lost one of their twin daughters to unknown causes. She fell asleep and didn't wake up the next day. This brought on a whole new set of emotions and feelings as i read about it this afternoon. So many psychological and emotional repercussions to this event and how this affects not just the parents but the twin sister, only time will tell.

I have always wondered when the whole being a "grown up" takes place and I feel like the moment has arrived, no matter how hard I try to deny that factor, I'm moving from an "adult" to a "grown up." I feel there is a difference between the two by now having other human beings to care for and not just yourself. I still have to make these adult decisions but along with that I have to help line the path up for these two little girls that will soon be relying on me for more than I will ever realize. To my parents and my in laws, and all the other parents out there that I have watched and analyzed, thank you for the opportunity to observe and be guided by your life decisions. Whether good or bad the choices and decisions that you all have made have been the cocoon in which this caterpillar has had the opportunity to use to grow in to a stumbling, flittering moth, desperately seeking out the light to find it's way.

Send out your light and your truth; let them lead me;

let them bring me to your holy hill and to your dwelling!

(Psalm 43:3 ESV)

Roadblocks are important too...

I've had this post sitting on my blogger for days that I can't quite finish for some reason... I thought it time to break this silence I've been in and just lay out some facts ad maybe it will help with the completion of the post. Crazy mental roadblocks.

I'm currently sans laptop at the moment so I'm writing this post on my phone. Please forgive typos or missing words.

Two weeks ago we had appoitments on two back to back Mondays with Docs in Houston at Texas Children's Clinic. Dr. Ken Moise and his wife Karen Moise,R.N. and their staff were amazing people to meet and to be cared by. In the end we sadly were not eligible for the TTTS laser surgery (www.fetal.texaschildrens.org). After the first appt. Dr. Moise was fairly sure that we did not have TTTS but rather Selective Intrauteine Growth Restriction (SGR). He confirmed it at the second appt. Between the two appt we were asked to consider selective reduction, basically a kinder way to say abort one child. There are a lot of risks when dealing with SGR and possible TTTS cases bec. if the donor child dies while in the womb, the connections that the baby has with the sibling can be a path for harm. We were given a 10% chance of life for our Baby A. It was a hard blow to our spirits, which had been nothing but hopeful until he said those words. After our second appt though he raised that percentage to 15 bec. he was pleased with the amount of movement that Baby A was doing. To explain SGR is to use the analogy of a graham cracker; four quadrants that hopefully would split two and two but sometimes breaks one and three. It's a strange genetic anomaly that we sadly didn't cause or could change if we had the chance to do again.

With all this information we spent the week between the two appointments praying, resting, weeping, and contemplating what the next months might hold. It was a tough week thinking about the moral complexaties of the situation and what justices/injustices we would be judged by. What would people would think of us if we did SR? What if we didn't? How do you tell a child that we chose to remove their twin so that they could live. I, personally, wouldn't be able to just look at the child knowing what I had chosen. So many thoughts and emotions but ultimately we decided that SR would not be somthing we would entertain. We would give God our 10% and allow Him to work with it they way He works in all of our lives, graciously. Medical intervention for removal of the still alive baby was not going to happen. Now, to preface, this is what my wife and I have chosen and are not trying to pass any judgement or the likes on anyone else. PSA over.

After our last appointment with the team, we drove home somewhat thankful we weren't having the surgery. We were told that having the surgery could essentially take away chances for Baby A to survive bec. we would be removing possible good connections that it does have. So in a strange way, it was a change of blessings bec. we went to Houston. We walked away praying for something else that was totally different; hope, not of human hands, but hope from the only One that ultimately has the only say in these things.

We came home with a strange renewal with the situation at hand and with that new outlook for our time with our babies. Whether we get to hold our babies or not, we were ultimately touched by their lives in a huge way. We would enjoy them all that we could. We decided that we needed to know the gender of the twins so we called and found out that our blessings were made of cinnamon and spice and everything nice.

Indentical girls.

We needed to pray for them by name and though we were still unsure of what those were to be we felt one step closer in a bond with them and that's exactly what we wanted.

So we continue this journey one step at a time. It's been hard being back on the road, not knowing what the weeks ahead will hold. I had been given the opportunity to take the tour off but too many things were happening to try and find a replacement in such a short time. It was a bittersweet call to come back out. Bethany and I spent the night before I left weeping, confessing to each other our feelings of if we were apart something bad would happen but if we were together everything would be ok. We are stronger together but God still holds the timeline, we just are there to hold each other up when those tough hours strike.

Thank you to all of you who are praying. We really are honored and blessed by them all. It's the only way we are not losing our heads... a peace beyond all understanding. For those that want to say that 'everything will be just fine' we appreciate that outlook but we also want to be realistic about things. We don't know the outcome and the situations at hand don't deem for 'fine' so we ask you to pray for us to continue to see God as the Holy and Just God that He is, for turning our backs to Him and screaming 'why!?' would be easier to do than give Him glory through these spirit breaking times.

He is worthy of praise through restoring rains and through fiery floods.

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