31 December 2010
Our prayer tonight, that amazing work be done in Penny's brain, that God has protected her from harm from this crazy spike and that the source of the situation would be found and resolved.
What a crazy way to start the new year but alas we are here.
Happy New Year from Le Bonheur NICU.
30 December 2010
What a lovely day! It was yucky outside but it's be sunshining in my heart. Last night we went home to sleep in our beds after a day with Penelope and an evening with Lydia. Both having some apnea issues but doing relatively well. This morning we woke up rested and headed to Methodist Germantown to see Lydia. When I called Lebonheur to check on Penelope it was a good report. Improving apnea (low respiratory rate) and bradycardia (low heartrate) episodes and super great oxygen saturation (she's on the bubble CPAP still and only on 21% oxygen which is room air) and still adorable (we knew that).
The girls are 1 week old today which is extremely exciting for me. That also means that Lydia's Umbilical Line had to be pulled because they only last a week before there is a danger of infection. So she got a PICC line (peripherally inserted central catheter) just like Penny! Then she had an echo....so she was pretty tired. Her nurse Jennifer gave us the glorious news that with her UAC out we could hold her and start doing Kangaroo Care!! For those who don't know, Kangaroo Care is when the mommy holds a preemie baby skin to skin and there are many many benefits. It helps regulate the baby's temp, respiration, and heartrate. It encourages the mother's milk to produce just what the baby needs. It helps with bonding. It puts the baby in a deep recouperative sleep that helps them to grow. Most importantly, it's just the medicine the doctor ordered for a mommy who's been looking at her babies all week and longing to hold them close!!!!
I was so giddy before we started I could hardly contain myself! I can't even BEGIN to describe the feeling that went through me when Jennifer put her on my chest for the first time. I just can't describe it so I won't even try. One thing is for sure, I'll never forget it. I got to kiss her little head and feel her heartbeat against my skin.....it was so beautiful! They way God meant for it to be. Don't get me wrong, I'm extremely grateful for the medical technology my girls are benefiting from at the moment, but there's something so sweet about the simple joy of holding your child. This is not news to anyone, but it sure was new for me!
Jonathan had the chance to hold her after we finished our little moment and had his own epiphany of emotion. It was so sweet to watch him hold her for the first time and promise he would always hold her if she wanted him to. Hearing those words from his father's heart reminded me of how blessed I am to have an earthly daddy who promises the same for me. These girls have no idea how good they'll have it with a daddy like they have! To be loved well by your earthly father makes it so much easier to accept the infinitely greater love of the Heavenly Father. They'll have a head start!
Ok...gush over...for now. It's time for me to try to get some rest here in Penny's room at Lebonheur. She's doing really well and is even more adorable than yesterday. Her nurse Nancy is very open to letting us be hands on and that makes our time here feel like we're making a difference for Penny. When she's crying and flailing and we put our hands on her and she immediately relaxes and goes back to sleep....that makes the heart happy. So in summary.....it's been a good day.
Now for some pictures...I know that's really the only reason you guys check the blog ;)
28 December 2010
27 December 2010
Yesterday morning was very good. Penelope had been intubated Christmas morning so when we came in and asked, her blood gases started looking so much better (so much so that they had to run it twice in a row to make sure the improvement wasn't a mistake) that they decided to extubate her later. Little miss feisty decided to hurry the process and pulled it out before they could get to her and was doing so well that they decided to keep it out at that point. She's good at communicating what she wants! Her CO2 and other blood gases have stayed good since. Lydia is steadily improving on her breathing too and is now on a low flow canula with very low O2 assistance. Last night she even pulled her O2 out of her nose and it was down around her neck but her O2 levels were just fine. The only reason the nurse saw it was because she had to come in to change a diaper and noticed it wasn't in place. I'd say that's a pretty good sign of her lung development.
They had a repeat echo to check their hearts again in regards to the Ductus and the Aortic Coarctation. Both of their PDAs are still open, and it was confirmed that Penny has the Aortic Coarctation. She will have to have surgery to repair this within the next few weeks or months. This means she'll be taken to Le Bonheur for the surgery, or possibly a good time before to be monitored and fattened up, and then after she recovers she'll come back here to Methodist Germantown to be with Lydia. Here is a link to a more detailed medical explanation. Of course this is not something we were hoping for, but we're very grateful to live in a city with world renowned medical facilities for children.
The Cardiologist also believes that it was actually Penelope who had the cystic hygroma at 11 weeks. Since they switched positions just before birth it is possible that they had done the same earlier in the pregnancy. The Hygroma, single umbilical artery, single kidney, and aortic coarctation are all possible markers for a chromosomal disorder called Turner's Syndrome. Penny will be tested for this soon I imagine but it's not in the orders yet. Also we'll be having their DNA tested to see if they are identical or fraternal. It would be very rare for an identical twin to have a chromosomal disorder that her sister did not have (not to mention that Penny's hair is noticeably lighter than Lydia's) so the results of that test should be pretty interesting.
This morning Jonathan dropped me off at the hospital so that he could go get the girls' social security cards applied for (super dad). We got a good report from the night nurses that their bilirubin was down enough to take them off the phototherapy and their skin was doing so well that the humidity could be removed from their little heat boxes. This is such great news because it means we can actually see them (and maybe start Kangaroo Care!!) The nurse was just about to change the bedding out when I got here so I offered to help and I'm so glad I did! She let me cradle each girl in my arms while she changed the bedding!! It was like heaven. Lydia just relaxed immediately and slept through the whole thing. Penelope was looking around, looking at me, and just plain being adorable. I can't even begin to describe the feeling...I'm sure it's something only parents would understand for now. What a gift!
They're both sleeping very comfortably now and sucking on the tiniest pacifiers you've ever seen. It's been a peaceful day so far and we hope it stays this way.
Things to pray for:
- Continued growth for Lydia and Penelope
- Wisdom for us as we face decisions about their care
- Penelope's Aortic Coarctation
- Lydia's Ductus to close
- Rest and balance for Jonathan and me
- Continued success in pumping breastmilk
- God to be glorified
25 December 2010
So for this morning has been an eventful one but let me catch us up to speed.
Premature babies have quite a number of hurdles to jump over. We have and will continue to jump hurdles which is what we've come to expect from information given to us by friends and family that have experience in this world.
1) Hyaline Membrane Disease (aka Infant Respiratory Distress Syndrome)
2) Both girls have an open PDA (patent ductus arteriosus). Lydia's is more normal and is being closed off by medicine which comes with risks, one of which is necrotizing enterocolitis the most serious so she will be watched closely. Penny will not be geting the treatment yet because she needs to be watched. Her case is a bit different because her PDA is connected to her aorta in a way that could possibly be helping her but they aren't sure yet. That all leads to another hurdle which we'll worry about when it gets time (for look up aortic coarctation).
3) Blood Gas levels are an unending balancing act for the babies and the nurses. They tell the nurse a lot of information on how the baby's blood is handling certain things like oxygen and carbon dioxide among other important gases. We want levels to continue to stay around the same numbers but like I said... it's a balancing act and some times they tip a little to one side or the other.
4) Penny had an atelectasis of the left lung which required her to be intubated and put on a vent. This was something we thought would have happened when she first was born but because she was crying so much when she first came out the doctors thought they would give her a chance to do things on her own. She did good for a two nights but the atelectasis came on quick and they thought it best to give her a chance to rest so they vented her.
*update to this 12.26.10 - Penny was just extubated and her blood gas numbers continue to look good. She was breathing so well on her own they saw it fit to pull her tube!! yay for one step forward!
For some hurdles for us parents. We've been trying our best to get rest and to figure out this whole new schedule for our lives. Keeping weird hours because of pumping and going to the hospital, going to and from the NICU, trying to keep ourselves out of the ways of the doctors and nurses but not so out of the way that we miss an opportunity to connect with our daughters, and eat! We've been feeling the emotional turmoil every night after leaving our girls at the hospital. We cry at random times while doing random things, imagine hearing the noises of their machines in our house and pretend to her them crying through the videos on our computer. We know that we are blessed to have them in our lives right now and to be sharing this time with them, so we do all we can to bond with them.
Every day we have family members coming to see the babies and us so it's been tough sitting down and writing an update. We will try our absolute best to continue updating on a very regular basis but like this post (written half on the 25th and finishing on the 26th) sometimes things get a little hectic, so please forgive us if we can't get the updates out as fast as we or you would like! I will continue to post pictures as we go along and sometimes they might just be pics without updates but know that we appreciate you all for your following us on this journey of two little girls who have already faced the odds just by being born. We'll continue to see how God intervenes and continue trusting that His ways are higher than any of mine.
24 December 2010
I was wanting to write a big ole update but Bethany's recovering so well that the doctor said she can go home! So instead of writing, i'm going to pack while the photos get loaded on to the website and posted!
22 December 2010
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.
21 December 2010
05 December 2010
15 November 2010
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.
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.
01 October 2010
"Now the word of the Lord came to me, saying, 'Before I formed you in the womb I knew you, and before you were born I consecrated you; I appointed you a prophet to the nations.'”
What has amazed me and continues to stand over me as we sail this voyage is that God has spoken to and had conversations with my children already. He has already had His hand on them.
Yesterday was that ominous two week mark for discovering whether or not our babies would be diagnosed with TTTS (twin-to-twin transfusion syndrome). We had seen the general OB a week before and had a chance to glimpse in to their cocooned lives again. They gave us a nice performance, looking at each other and sort of batting at each other. Little did we know there was already in progress a disagreement that we couldn't see.
Our ultrasound went longer than normal, painstakingly longer, with the techs mumbling things back and forth to each other, scouring for organs and vitals,like hunting for the last elusive oil balls in the Gulf of Mexico . The sonographer finished and said that the doctor would be with us soon. Tears had started to flow already from both of us for we knew that our life was changing yet again. We walked to the consult room and waited one of the longest waits I've sat through in a long time. Trying to decipher the things I had seen floating around on the screen, hoping for the best even though I knew it wasn't going to come true. Bethany, already getting her money's worth out of the tissue box, was a trooper and let out all she could before the doctor arrived so that she could be in as an attentive mode as she could be in were as I was holding on till I could assess and then release my flash flood of tears. A knock, he enters, his disarming demeanor and calming voice does it's work as he greets us and inquires the usual formalities. We were ready though, bracing ourselves for the thing we had been praying God might spare us from. "The signs are there for TTTS." He said those four letters.
He went on to explain again what we were facing, the situation our babies are in and the steps that we probably will soon be taking in to, hopefully, helping them so that they have a chance to develop normally. We now begin discussing other hospitals, other cities, Pittsburgh, Cincinnati, San Francisco, Houston. Places where parents like us have gone to give their children a chance to fight for life, where many before us have gained knowledge and technological miracles have occurred. Houston is our city of choice if/when we do enter in to Stage 1 of TTTS and we make the trek to this haven.
So remember that roller coaster I told you about? We're starting that climb up the hill.
Our continued prayer for these babies is that God would continue to keep them and that He would give us the comfort and understanding at no matter what the outcome. He ultimately knows this situation and it's finale even to the day of their deaths, even before we get to hold them. That is where I find my comfort, that even through all the hardships, my God has said that He has not left me, that He is with me always. I use this scripture reference when I sign autographs a lot bec. it is the way I finish a lot of my prayers and thoughts.
Though the fig tree should not blossom, nor fruit be on the vines,
the produce of the olive fail and the fields yield no food,
the flock be cut off from the fold and there be no herd in the stalls,
yet I will rejoice in the Lord; I will take joy in the God of my salvation.
God, the Lord, is my strength; he makes my feet like the deer's;
He makes me tread on my high places.
If you want more information about TTTS visit this link. It is the link to the hospital where we will probably have this operation, laser ablation, done. There are other treatments but laser treatment is what we would be going for.
oh... by the way. They're identical =)
17 September 2010
That is what this life is. This is what our lives should be. A Faith walk.
Two weeks ago the doctors told Bethany that our Baby B had what was called a cystic hygroma (don’t google for your own good, seriously) which could lead to a number of horrible outcomes. It’s part of the doctor’s job to warn you of all things, not just to give you the good news otherwise people would be dying in random places, never knowing they had cancer or a tumor. We were given our options and what they might or might not be and then we were given a timeline in which to wait. Two weeks. This set of time seems to be our reocurring time line in which to walk with Christ in faith.
As we sat and waited for our appointment on Tues. we talked nervously, trying our best to get out of our head the possibilities that might be divulged to us in the next hours and as our time came to discover what was ahead, a calm settled in me. Now is the time to hold the hand of Christ and not let go. No matter what answer was to be revealed. The doctor came in and said words that we had been praying for. ”We don’t see the cyst anymore and it’s no longer a concern.”
Then the one word that you never want to hear after a statement like that.
“But…” Here we go.
“We are very concerned about the growth of Baby A.” What? That’s not the baby we were concerned about before, i thought to myself… “Baby A is showing about a 4 day delay which is a possible indicator of twin to twin transfusion.” TTTS is what happens when twins share the same placenta and some of the veins for blood are connected to each of the babies. One baby starts to steal blood and nutrients from the other baby. This is not what we want. Not at all. The doctor continues, “So, we wait for another two weeks and see what happens then in the next ultrasound.” And that’s where I come up with the concept that this whole process is just going to be a faith growing process. Two weeks at a time we will pray for these babies until they get here and then at that point we pray even harder every two weeks that God doesn’t allow us to screw up their crazy little lives. If God brought them that far as to be born in to our lives, then they’re gonna have the craziest ride ever.
This is what is so hard about the whole pregnancy thing. You want the most normal, routine experience you could ever have but when things like this happen you realize the intricate and delicate nature in which God orchestrates His supreme symphony by showing you that He alone knows how all the pieces go together in the womb and that He alone can do what He desires to make things the way they need to be. The only thing He wants us to do is to trust. Trust that He will create the children that we need to be parents of, the protectors of, for we are just the keepers of these children, not the owners. Christ is their owner and we must direct them back towards Him in our lifetime. My friend from the band “Theft,” Matt McCartie, said it best. “Our children, as much as we love them and as much as we care for them and have brought them in to the world, are really just on loan to us.” This has stuck with me ever since that night we talked, in the parking lot in Atlanta, GA.
And so, if you choose to accept this mission of walking down this road with us, we cherish your continued prayers and support. We can’t do this alone and don’t plan on trying. It’s going to be a roller coaster of something new every two weeks, maybe that’s why God made me to love roller coasters! We’re wanting the most help that we can possibly get because that is the only way that we are going to survive this without going insane. We don’t expect God to fix every problem we have along the way, that would just make Him a genie in a bottle. We just expect Him to be who He says He is, I Am. We don’t need anything else but that. “I Am, the Provider.” I Am, the Healer.” I Am, your strong arm to lean on when things are busted and you don’t know how it’s going to work out.”
01 September 2010
Our little family needs your prayers. I had an appointment today with the specialist and they found that Baby B has what's called Cystic Hygroma. Its scary if you Google it so he suggested that I not and I'm sticking to it. Basically it's a fluid filled cyst along B's back and neck and can be an indication of nothing, of chromosomal disorders (mainly cardiac), or of Twin to Twin Transfusion Syndrome (TTTS) which can be fatal. If you look at the ultrasound picture with both of them in it from 11 weeks or if you watch the video of the ultrasound on facebook you can see it pretty clearly. He said there's nothing that we did to cause it and nothing we can do to change it. It's just a matter of praying and waiting to see how things develop. They don't usually see it this early and I'm not sure whether that's good or bad, but I have another appointment in 2 weeks to see how things are progressing.
It is a very real possibility that we could lose little Baby B so the immediate request is for it's safety. If the Lord chooses to let us keep our little miracle there could also be some health issues once it's born. So the secondary request is for it's healing.
Most of all we ask that you pray that God will get the glory no matter what happens and than He'll give is the peace and faith to handle this situation that He's entrusting to us.
Thank you for your prayers and support
The Chus (all 4 of us)