Tuesday, November 30, 2010

Cuddle Care

I was able to hold Hazel again today, which was great. She tolerated it for about 45 minutes and then had 2 back to back apnea episodes. I think it was just a little much for her. She growled a lot while I was holding her. I wasn't sure what to make of it, but I decided to growl back at her. We had a nice conversation growling back and forth. :)

3 weeks old

Hazel seems to be tolerating her new feeding schedule so far, which is great! She is up to 5 ml/4 hours. As long as she continues to tolerate it, they will increase it 1 ml each shift (every 12 hours) to a maximum of 10. Jude is up to 4.5 ml/hour and he's getting increased .5 ml each shift if he's tolerating it. Yay! We can start getting rid of the milk that is overtaking our freezer (and our neighbors'). Please pray they continue to do well feeding. The more milk they are able to digest, the less extra nutrients they need, which will eventually result in them getting rid of their picc lines (yay for 1 less IV!).

They both continue to struggle with breathing. The nurse reminded us this morning that the lungs are the last thing to develop so it will just take time. Also, the doctor said that as they get bigger, they will make new lung tissue, but that is a process that just takes a lot of time.

Jude weighed in at a whopping 3 lbs 8 oz last night and Hazel was 3 lbs 5 oz. These numbers still fluctuate a bit due to all the fluids they're on, but it seems they are both growing.

Monday, November 29, 2010

Hazel's Victory Pose (Fists Raised)

Catch 22

Poor Jude. He's stuck in a catch 22. He has inflammation in his trachea that is causing a lot of secretions. This is very common when babies are on the ventilator for extended periods of time. However, he can't get off the ventilator until the secretions are significantly less. Basically, the secretions are caused by the vent, but he can't get off the vent until the secretions go away. The doctor said that it's a slow process where he will be given some medication and we just wait for him to get older. We're just really anxious for him to be off the vent since it looks so uncomfortable, so this was a little hard to hear. On a positive note, he's still doing quite well with his feeding!

Hazel should be off the lights this afternoon, which means I'll be able to hold her! She got a shot this morning and took it like a champ! No crying or anything! Maybe she learned from me since I was getting 4-5 shots a day when I was in the hospital. The shot is supposed to help her make her own red blood cells so that she won't need anymore blood transfusions. She'll be receiving these shots 3 times per week. She's still struggling with her feeding. It will be great once they are both eating more and can wean off some of the additional nutrients they are receiving through IV's.

Sunday, November 28, 2010

Waiting

I think the toughest thing about this journey is that it's basically a waiting game. Everytime we ask the doctors or nurses when we can expect to see improvements in lung function, feeding, etc., the answer is, "when they get closer to full-term". We have to focus on one day at a time, because the thought of enduring this for another 10 weeks sounds like more than we can handle.

Jude had the secretions from his trachea sent in for a culture on Friday. The results were back today and his infection is clearing up a lot. Praise God! He will be on antibiotics for another 8 days to make sure it's completely gone. They are going to start CPT (Chest Pulminary Therapy - pounding on his chest and back before suctioning) again since they are still getting a lot of secretions. He is still not breathing much on his own and his vent settings remain about the same as a week ago. The doctor said his lungs just need time to heal before we'll see much improvement. He is still tolerating his feeds pretty well and had them increased to 3 milliliters/hour today.

Hazel's billirubin level is down today, but they are keeping her under the lights for another day to try and make sure it doesn't go up right away again. She had the settings on her CPAP increased today since she had a lot of apnea episodes last night. The doctor said that their brains are just too immature to remember to breathe all the time. We have to wait until they mature more before seeing major improvements. She started feeding again yesterday but is still not tolerating it so the doctor started her on a new medication this afternoon to make her intestines contract. Also, instead of feeding her 1 milliliter/hour continuously, they are going to try giving her 1 milliliter at a time every 4 hours. We're praying this helps!

They are both still gaining weight, which is great! They are both around 3 lbs, 3 or 4 oz.

Friday, November 26, 2010

Under the lights

As you can see from the video below, Hazel is back under the lights. Her bilirubin level was up again today. One thing that helps keep it low is eating and fully digesting food. Since she hasn't been eating for a couple of days, her level went back up. They started her on a very small amount of milk again today, but she's still having lots of residual (she's digesting the food, but it's just sitting in her stomach). Please pray that she'll start fully digesting her food soon so that she can be off the lights, we can hold her again, and she can get rid of her "sunglasses" (which she doesn't seem to like at all).

Hazel Video 11/26/10

Jude Video 11/26/10

Three Pounds!

Good news to report: in the past couple of days, Jude and Hazel have both reached the three pound mark! For some reason, Hazel looks bulkier than Jude, but they are both right around the same weight: a little over 3 lbs. The doctor's goal is for them to gain about an ounce a day from here on out.

Jude has been eating like a champ, so it's no surprise he was able to gain the weight. Hazel has been off Heidi's milk for a few days because she wasn't digesting it, but they expect to start her back in a couple days.

Praise God they're both beginning to look a little more hefty.

Fun while it lasted

Hazel wasn't quite ready for the switch to the nasal cannula and is back on the CPAP. She had quite a few episodes of apnea on the cannula, and has been much more stable since switching back. We can't see much of her face anymore, but at least she's getting the breathing assistance she needs.

Thursday, November 25, 2010

We Thank God For ...

...our precious little son and daughter and the experience of being a family.

...our own adoption into God's family through Jesus.

...friends in Pasadena who have surrounded us with care in this difficult time, cooking for us, cleaning our house, doing our dishes and laundry, even storing breast milk in their freezers.

...family and friends far away who have showered us with cards, gifts, flowers, crafts, baked goods, well wishes, and words of comfort and hope.

...the care of the NICU doctors, nurses, and staff.

...the prayers of God's people, some of whom we don't even know, being lifted up on behalf of our family.

...our daily bread, which God gives us each day.

Hazel With Her Nasal Cannula (No More Mask!)

Wednesday, November 24, 2010

Update

I went back to the hospital this afternoon to ask more questions about Jude. There are several strands of E Coli. The kind he has is part of our "normal flora". His just happened to cause an infection in his trachea. The doctor said they caught it early (they had tested him for infection 5 days earlier and found nothing) and that it's very localized, both of which are good things. The antibiotic that he's on treats the strand he has, so the doctor is very optimistic that it will work. In the meantime, he's getting pounded (lightly) on his chest and back every 4 hours to break of some of the "gunk" that's built up. They're still getting lots of thick stuff when they suction him.

When I arrived, Hazel had just been switched to the nasal cannula. She seemed to do alright with it for the hour I was there. She had her ups and downs, but overall was doing well. I'll try and post a picture of her face soon.

Tough Day

Jude has E. Coli. It's probably caused by some reflux. They'll check him on Friday to see if the antibiotic is working.

Hazel decided she didn't want to eat anymore. She doesn't have any blockages in her intestines, just gas. She'll get a series of three enemas and try again.

It's a tough day. Prayers are appreciated.

Jude

We think Jude is much happier not being under the lights. He really likes to be swaddled (even though he is constantly kicking out of it) and just seems to be a bit more content. His bilirubin level will be checked again tomorrow. We're hoping that it doesn't go back up and that he can stay off the lights. It's great to see more of his face!

No more news on his infection right now.

Tuesday, November 23, 2010

Ups and downs

Since Hazel is off the lights again, I (Heidi) was able to hold her again today. She did well and just slept the whole time. Definitely an "up" for us! Also, the doctor told us that they are going to try and switch Hazel to a nasal cannula tomorrow instead of the CPAP. We're really hoping she does well. We'll finally be able to see her whole face!

As for the down, Jude now has a respiratory infection. He's been needing a little extra help from the ventilator the past few days and the doctor ordered a test to be done on some thick "stuff" that was appearing when he was suctioned. They aren't sure of what the infection is yet, but he started on antibiotics today. Hopefully, once the infection is cleared up, he will be able to get off the vent quickly and onto the SIPAP. He is still taking very few breaths on his own. Please pray that he starts breathing better very soon! We are still in constant prayer about his brain bleed and especially praying that it clots and drains naturally and that his head does not show any signs of swelling.

Thank you for all your prayers and support.

Off the Lights Again

I know that many of you were concerned and praying for peace and comfort for our babies after our last post, so I'm happy to report that they both came off the bilirubin lights today, and we hope they can remain off for good (though there's always a chance they'll need to go back on). They looked much more comfy and peaceful with the eye covers off and with blankets over top of their little pods. They can both be swaddled now as well, which they seem to like. Even with it still being a full house, comfort and sleep is much more attainable now!

Sunday, November 21, 2010

Pray for Sleep and Comfort!

The great thing about the NICU at Huntington is that they help a lot of preterm and critically ill babies. The not-so-great thing about any NICU, though, is that sometimes a lot of babies come in all at once (like tonight), and it gets loud in there! Nurses and parents everywhere, alarms going off every second, biliruben lights shining down on both our babies ... How are they to get any sleep? We're praying for comfort and rest despite their circumstances tonight and in the nights to come. We just wanted to kidnap little Jude to a quiet room and cuddle with him. :) Pray that we are able to hold him soon.

For Reference: The Size of Jude's Preemie Diaper

An Eventful Day

Heidi and I were in the NICU today at Jude's changing time, so the nurse asked if either of us would like to change his diaper. We've each had a few diaper changes with the little ones, and I've changed plenty of diapers on people much bigger than Jude, so I volunteered. No big deal.

His first diaper was poopy, which was good. We want the little guy to be pooping, and he seems to be loving his mother's milk. But then I didn't get him totally wiped off and I got the second diaper dirty. So I called for another wet one and a new diaper. But as soon as I got him wiped off and got the third diaper down, here comes another poop and pee!

So, we got him all wiped off again and put the fourth diaper down. But what do you know, he's not done yet! Finally we got him all cleaned up and got the fifth one down with no (visible) incident. The whole time Heidi and I are getting worried about his breathing and the respiratory person is having to come over and suction him and he's desaturating ... QUITE AN ADVENTURE!

Meanwhile Hazel was just as calm as can be. Once she was situated the way she likes it, she was off to sleep. She's even breathing on her own today with no supplied breaths from the NCPAP machine. The machine is only supplying pressure now. And according to the cardiologist, her duct looked small enough to continue to hold off talk of surgery. Now that she's finished with the third round of medicine for the duct, she can begin feeding again.

An eventful visit to the NICU for sure.

Saturday, November 20, 2010

Friday, November 19, 2010

Kangaroo Care and Economist Magazine

Skin to skin

Hazel was stable enough to try her first round of skin-to-skin contact with Heidi! She did really well with it, and both mom and baby seemed to want to stay there a lot longer. We decided that a half hour was a good start, though.

She is getting a third round of medicine to try to close her PDA. The other round seems to have helped get it mostly closed, but it still needs to close more. Pray that the medicine would work and it would close on its own, because surgery would be a major setback for her at this point. Before she had to go back on the medicine, she was feeding on mother's milk every four hours. We'll hope she can pick up right where she left off in another 36 hours.

Jude was just hanging out today. No major changes. He's tolerating the feedings and weaning down on the ventilator settings, so we're happy about that. He might be ready to switch from the vent to the SIPAP in a few days.

I'll post a video of me reading The Economist magazine to Hazel as she laid on Heidi's chest.

Thursday, November 18, 2010

Jude at bedtime

Hazel tonight at changing time

Day 9 Update

Both of our babies had cranial ultrasounds today, and the news was fairly good considering their condition. Hazel had a grade one bleed on one side (which we knew about from last week's ultrasound). It looked the same today as it did last week, so that is not a concern to the doctors. Jude's bleeds were not looking any worse and the blood in the ventricles is starting to organize itself, which is what they wanted to have happen. We ask for continued prayers that the bleed would heal, his brain would be able to develop, and that the long-term effects would be minimal.

Hazel is off the lights today and her skin is looking great. Less like a plum, more like a baby. Her hair looks like it is beginning to turn blonde.

They started both of the babies on small doses of Heidi's milk today. We'll find out later if they were able to digest it. Sometimes it takes a bit to get the systems working properly, but it is exciting that they started that. Our freezer (and our neighbor's) is starting to fill up, so those kids need to get eating!

Hazel will have another echocardiogram tomorrow to see what her PDA looks like. The doctor said it still sounds open, but if it is not too far open and is not causing other problems, they will not have to do the surgery and they'll just wait for it to close on its own.

Thank you for your prayers! We'll post more pictures and (maybe some video) soon!

Wednesday, November 17, 2010

Prayers for tomorrow

Not much new here today, but tomorrow is a big day. Both Jude and Hazel will be having head ultrasounds to check the brain bleeds. We are praying that there are no new bleeds and that the existing bleeds have started to heal. We are especially concerned about Jude since his bleed is much more significant. We are praying, "Only speak the word, Lord, and our son shall be healed" (Mt 8:8).

Tuesday, November 16, 2010

Surgery canceled

We went to the hospital around 2:00 today to sign consent for Hazel's surgery. When we arrived, we were told her surgery was moved up to 2:15 instead of 3:00. At about 2:10, the cardiologist came in and said he read the echocardiogram from this morning and said the duct was smaller and restrictive. So, the surgery was canceled. They will check the duct again 48 hours. There's still a chance she'll need surgery since the duct isn't fully closed yet. Sometimes is closes and reopens when it's closed as a result of the medicine. We are praying for complete healing so that she does not need surgery and does not need to be intubated and extubated again.

Thank you for your continued prayers.

Surgery scheduled

Hazel is scheduled for surgery this afternoon around 3:00. It's a bit more of a setback for her since she will have to be reintubated before surgery. We hope she recovers quickly and can get back on her SIPAP machine quickly.

Jude seems to be doing well so far today and is not showing any signs of pain. They are hoping to start feeding him (through a tube) tomorrow. We are still in constant prayer about his brain bleed. Most likely, we won't know how this affects him until a few months from now as he begins to develop.

Please be in prayer for Hazel this afternoon. Thank you for your support.

Monday, November 15, 2010

Now Hazel ...

Now as for Hazel, she is receiving her second round of medicine to try to close her ductus arteriosus, but it does not appear to be having the desired effect at this point. The doctors are expecting to do the same surgery on her tomorrow afternoon if it continues to be open in the morning. Please pray for her for that! She is off the lights now, but still on the SIPAP breathing machine, so we can see her eyes but not much more of her face.

We are so proud of our little fighters with all they're going through! Praise God for the medical care and for all of you who are upholding them in prayer.

Jude's Surgery Went Fine

Jude had his surgery today a little after 3 pm and the surgeon said everything went fine! Thank God for that. They made a small incision under his left armpit area and put a clamp on the ductus (which I now understand is more of a vessel than a valve). The surgeon said that Jude's was one of the biggest vessels he had seen on a baby of his small size. Because there was some bleeding after they applied the first clamp, they ended up using three clamps instead of the one, just to make sure the vessel would be fully closed. He'll carry those little clamps around in his body for the rest of his life!

All of his other vitals and everything were looking great. If he recovers well, he might be able to start taking some of Heidi's milk through a feeding tube in a couple days. Thank you all for your prayers. We'll keep praying for his brain bleed. His head is not showing any signs of swelling so far, so that is a good sign. We are hoping he recovers well and can keep progressing.

Our Brave Little Boy

Surgery

We just got word that the surgery will take place today at 2:00. We are heading to the hospital to sign consent forms. Please pray for success and quick recovery for Jude. Please pray for peace for us.

Still waiting

We are still waiting to hear from Jude's doctor (who is waiting to hear from the surgeon) about whether or not the surgery will take place. In the meantime, we continue to constantly pray for his brain bleed to heal, for there to be no longterm effects, and for perfect development for these babies outside the womb (as they were perfectly developed while they were in the womb).

Sunday, November 14, 2010

Update

We just got back from visiting Hazel and Jude. It's always quite overwhelming hearing all the details whether good or bad. We keep praying for patience for us since we probably won't see too many big changes until they get quite a bit older (closer to their due date). Thank you for your continued prayers.

Hazel received one round of medication to close her PDA. However, it's still open. She started receiving a second round earlier today. We are praying that after this second round, the valve is closed or is nearly closed. If not, she will have to have the surgery. Please pray that the medication is effective this time so that she doesn't have to go through surgery. On an exciting note, she is going to have the lights turned off either tonight or tomorrow night. They will be off for a little while and then her bilirubin level will be checked the next day. We are praying that it stays low. Once the lights are off, the mask will be removed from her eyes and we'll be able to see her precious little face.

According to the doctor, Jude seemed a little better today than yesterday. He received a platelet transfusion yesterday and his levels were normal today. We are still not sure if he'll be receiving surgery tomorrow. He is tentatively on the schedule for 2:00, but his doctor (who is not there on weekends) will make the final call in the morning. Though the risk for complications is small, it's still very scary for us. Please pray that all goes well, that he bounces right back, and that God guides the surgeon's hands on our delicate little boy.

Saturday, November 13, 2010

Home

Tears of joy: my wife is home!

Status quo on the twins today.

Friday, November 12, 2010

News

Tomorrow Heidi gets to see the outside world for the first time in over five weeks! I'll be happy to have my wife back home.

Not much news on Hazel. She's going to get medicine to help her ductus arteriosus close. Otherwise, still feisty as always.

Jude will need surgery to staple his ductus arteriosus closed (the valve I was talking about in the last post). He will likely get that surgery Monday. He was ineligible for the medicine that Hazel is getting because of his brain bleed. They will look at the bleed again next week to see if there is any change.

Time to go down and say goodnight, then come back to Room 3 for our last night in the hospital.

"The LORD is my shepherd, I shall not want. He makes me lie down in green pastures; he leads me beside still waters; he restores my soul" (Ps 23:1-3a).

Jude Pics 11/11/10




Hazel Pics 11/11/10





Thursday, November 11, 2010

Jude update

According to the radiologist, Jude has a grade 3 brain bleed on both sides and also a grade 4 bleed on the right. It's impossible at this point to say what that might mean. The hope is that it would resolve itself quickly and that there would be no long-term effects. Pray for a speedy healing in his brain. Also we're praying for a valve to close near his lungs by this weekend, or else he might need surgery for that.

"The Lord is near to the broken-hearted, and saves the crushed in spirit" (Psalm 34:18).

Jude needs our prayers

Today we talked to the doctor and it looks as if Hazel is doing better than Jude at this point. It is typical for female preemies to do better than males (which the females like to say is because "guys are wimps"). However, this is surprising in our case, considering the way our twins looked a couple days ago. Jude has a brain bleed on both sides, but we're waiting for a reading from the radiologist to determine the significance of it. We can all be in prayer for that.

Also, they've got both of them under the lights now, "working on their tan" and/or trying to get the biliruben (sp.?) level down (or up, I can't remember which). Overwhelmed with concerning details yet? That's not even the half of it! Life in the NICU...

Wednesday, November 10, 2010

Day Two

Jude and Hazel are still doing well today, given their gestational age. Heidi and I visited them a couple times, Heidi for the first time! You'll see in the pictures we spent some time with them grabbing our fingers, although we couldn't do that tonight because they were both getting blood transfusions. But we did read them a bed time story and gave them a blessing.

It's going to be a long journey here in the NICU, with plenty of ups and downs, so we'll need lots of prayers. Surprisingly, Hazel was able to be extubated and is now on the SIPAP machine, but Jude did not do so well without the breathing tube, so he'll still have it for a little while.

We're thankful for all the support from family and friends. You all have been so great. It will be a while before they can fit in most of their clothes, though!

Day 2 Pics





Photos Below

Couldn't get the caption to work again, so here is the explanation of below: Hazel, Hazel, Jude, Jude

Hazel has to wear that eye mask to protect her from the bright light she is kept under to treat the bruising. Both are looking even better today than yesterday, to our great joy and relief! They'll be watching both of them for the right time to try and take the breathing tube out. Jude will probably be first on that account.

Heidi is recovering well and may be able to get up and see the babies for the first time around noon. Thank God for babies and for the care all are getting here!

More Pictures




Tuesday, November 9, 2010

A blessing from the book of Jude

"To him who is able to keep you from falling and to present you before his glorious presence without fault and with great joy - to the only God our Savior be glory, majesty, power, and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen."

Hazel and Jude First Pictures

I couldn't get it to type in the post of the pictures, so to explain: Hazel is in the top picture and Jude is in the bottom. Not great photos, but there you have it!

First Pictures


Looking good

I talked to the NICU doctor a little bit ago and she said everything looked good so far. Jude is doing better than Hazel because Hazel has some bruising. (She did not want to come out, so she had to be pulled kind of hard on her legs/feet. She apparently knew it was a bad idea to come this early, but she lost that fight to her brother.) Both have dark hair and are beautiful!
Just saw the babies. Tubes coming out everywhere but otherwise looks promising! Hazel is under a light right now because she has some bruising. Jude is looking good. Hair and finernails and all that. I should be able to talk to the doctor soon.

And the names are ...

Hazel Brynn
Jude Lewis

Weights are in...

Baby boy: 2 lbs 10 oz
Baby girl: 2 lbs 6 oz

Names to come ...

Babies are born

I'm waiting in recovery now after a successful c-section. Mom was brave and babies looked good, considering how early they are. If any of you don't know by now, it's a boy and a girl! We'll know more in a few hours, but we heard both of them cry before having to be intubated. Now starts the long journey of NICU.

Time to change our prayers - babies are coming!

Heidi started having severe pain at 4 am and is now in active labor. They are taking her in to deliver now. Pray for health and safety for mom and babies.

Thursday, November 4, 2010

Third Trimester!

It's been a quiet week in the Perinatal High Risk Unit, Heidi's new home. Still a couple of anxious parents-to-be, not to mention family and friends. But no real news to report, other than that mom and baies are still where they all were last week. Based on my impressions of the state of medicine for preventing pre-term labor, I'm getting ready to hold a plunger up to her for as long as possible. I'm pretty sure that will be the next course of action.

Now, according to some counts (at least the ones we're deciding to pay attention to), Heidi has entered her third trimester as of yesterday. That should mean that the babies are growing more rapidly now, gaining an ounce or so every day. Thank you all for your prayers. God has granted our petitions so far. We are still praying for another month, though, if for no other reason than that the babies can only have Thanksgiving dinner if they're still inside the womb. Which reminds me: I had to discipline the babies the other night. I told them, "Go to your womb." They listened.

On another note (D# I think), we now have moaning underneath our apartment floor. Cats. In the crawl space. (With a silver spoon?) It sounds like human moaning, though, which is really creepy. But it's also helping me get ready for something similar (times ten!) when our own kids come. Except I can't call maintenance when our own babies start crying.

That's the news from Pasadena. Thankful, anxious, and hopeful.