Happy New Year from the Snyders

Yay for the census!

The census last week in the NICU was 33. Today it is 14! That means, they are CLOSING Nursery C, which means Hazel won't be moved. All the babies who were in Nursery C have been moved back to B (it makes staffing easier). Thankfully, they'll be together for at least a little while longer (and hopefully a lot longer).

We really enjoyed the Occupational Therapist who met Jude today. Jude didn't cooperate (he slept the whole time), but she was still able to make a lot of observations about him. She said she could tell he is extremely responsive/reactive and sensitive. We have been asking the nurses for weeks about their thoughts on his grimacing red face, and they always respond that he must be trying to poop. We know this is not the case and the OT told us today that it's a response that communicates, "I've had enough. Too much stimulation. Stop" This can either be sound, touch, light, etc. She also said he's very strong. She's going to come back tomorrow and work on helping us with skin to skin since Jude has not been tolerating it lately. She thinks it may just be tough for him to transition, that the getting undressed process, being picked up by the nurse, and traveling through space is just too much for him to handle. We're going to try to minimize the transitional things and see how he does.

Hazel did great with skin to skin today (after increasing her oxygen a bit) and is still doing well with her feeds. We are very thankful for this.

Thank you for lifting us up in prayer.

Still together

Well, we're happy to report that Hazel and Jude are still together. The baby that was supposed to be discharged from Nursery C didn't go home, so there was no space for Hazel. We're happy for us, but I'm sure the other family was disappointed. We're hoping that we can spend many more days together.

Jude is still not really progressing. He's really struggling to gain weight, which is partly due to the respiratory obstacles he's had to overcome and is still working to overcome. He continues to have his major "dives", which makes us very nervous. He's going to be seen by an OT tomorrow, which we're excited about. She will come up with a "plan" for him for eventual feeding, visual training, muscle strength, and more.

Hazel is still growing a lot and is almost 5 and 1/2 pounds. I think she's about a full pound heavier than Jude now. She is tolerating her condensed feedings thus far and her feeding amount has been increased quite a bit over the past few days. Once the amount stops increasing, we think they'll work on condensing more to prepare her for bottle feeding. She's still in the incubator, but will hopefully be out within the next few days. The doctor just wants her to be able to focus solely on eating and not have to worry about maintaining her temp at this time.

It's been a difficult couple of days, especially for me (Heidi). Sometimes we just hit a wall where we find ourselves completely drained emotionally (and physically) and thinking about going back to the hospital one more day is almost too much to bear. (Just a wee bit of honesty about our emotional journey...)

7 weeks old and a couple steps back

We know the NICU life is full of steps forward and steps backward, but we really thought we were out of the "step backward" phase, until today that is. Hazel didn't maintain her temperature this morning, so she got put back in an incubator. She probably just needs a few more days or a week or so, but it's still disappointing. Jude's CO2 level started climbing again and his chest x-ray showed his lungs as under-expanded. So, his cannula flow was increased to 5 (it was decreased to 4.5 2 days ago). Very disappointing. I'll spare you some of the additional details of the disappointing day, but there are more.

One last major disappointment (which we probably should be excited about) is that Hazel's probably getting moved to Nursery C tonight. The charge nurse told me that she's the best candidate (I beg to differ, but can't really say that) and since there's a spot open, they'd like to move her. I don't understand why since Nursery B isn't even half full, but it's not my choice. It just makes visiting SO much harder. We've really enjoyed the last 3 days of being able to all be together as a family. Hopefully the charge nurse will change her mind or Jude will miraculousy start breathing better and get moved as well.

Maybe a month?

We heard our first prediction today from the doctor as to when Hazel and Jude might come home. He's hoping they'll be ready in a month or so, which is kind of what we were figuring on since that's close to their 40 week due date. It was nice to finally hear a prediction made by a doctor!

Hazel's feeds are being switched today from continuous to condensed. The condensing process takes a long time, so we're glad she's starting! She'll now be receiving 50 mL over 3 hours every 4 hours. Basically she's getting 4 hours worth of food over 3 hours and then will get an hour break. As long as she tolerates getting the larger amount all at once, they will continue to condense even more. Jude currently gets his food over an hour and a half every 3 hours.

Hazel maintained her temperature last night and so far today. Hopefully she continues to do so! It's so much easier visiting them when they aren't in incubators. Plus, maintaining temp is one of the milestones they need to reach before coming home.

Jude has been taking some major "dives" lately where his heart rate drops and he stops breathing (called AB's for short). We're praying he becomes more stable every day. It's a scary thing to watch. It's also scary to think about happening when we're not there. We just have to trust that he's always being watched closely since he requires extra oxygen and stimulation when he does this. Other than that, he seems to be doing quite well. He is very alert when he's awake and is still eating, peeing, and pooping like a champ. He even peed all over Noel's new Christmas sweater today!

Hazel's new bed

Hazel got her IV removed today! That means she can wear clothes and try a big girl open bed. She was not given the luxurious large crib Jude was, but at least she's out of the incubator. She now has to maintain her temperature (which has been more of an issue for her than Jude). She was a bit cold when we visited tonight, so we're praying she's able to stay warm and out of the incubator.

Starting yesterday, Hazel really took a liking to her pacifier. Yay Hazel!

The Jude Show

I think Jude is trying to make up for that stretch a couple weeks ago where we posted a lot of pictures of Hazel and not too many of him, because he's been turning up the cute lately. So here are a few photos of our little guy. Go ahead and try not to say, "Aaaawwww!" but I'm just telling you now, you won't be able to stand it.

Merry Christmas from the Snyders...

...ALL IN THE SAME ROOM!

My Christmas wish came true! Our kids are finally next to each other in the same room. Jude is still not quite Nursery B "status", but the NICU is less busy now and they wanted to clear out the overflow room. Rather than moving Jude back to Nursery A, one of the nurses said that Hazel told her to move Jude to Nursery B. Thank you to that nurse for listening! Jude was doing well today (much better than yesterday) and we were able to hold them both and get our first family photo. Merry Christmas to us! It was a wonderful gift. Obviously we'd rather not have to spend Christmas at the hospital, but since we do, this was probably the best way to spend it.

Things we are praying for

For Jude:

• That he starts to ventilate better and gets his CO2 level under control and doesn't need to go off the nasal cannula
• That his brain bleed reabsorbs naturally and that there is no permanent damage
• That he is comfortable (he his often scowling, grimacing, and getting very red in the face)

For Hazel:

• That she continues to tolerate her feeds as she approaches full feeds so that she's able to get rid of her TPN (and her last IV)
• That she handles the transition from continuous feeds to"front-loaded" feeds

For Both:

• That their oxygen requirements continue to decrease so that they're able to breathe on their own and come home without oxygen
• That their eye infections go away
• That they are both able to try bottle feeding soon

For Us:

• Physical and emotional strength as we continue this difficult journey
• Good health so that we are able to continue to visit our babies every day
• For patience

Thank you for supporting us in prayer.

34 weeks gestation

The NICU got a bit crazy last night with some new admits, so Jude got moved across the hall to an overflow room. It's not quite "Nursery B status", but we think he's on his way! He's still doing well on the cannula. We're hoping he keeps it up!

Hazel's colon finally seems to be kicking into gear and she's still tolerating her feeds. The doctor is hoping she can get rid of her picc line this weekend! Then she'll be able to start wearing clothes and possibly try an open crib.

The doctor thinks that either one or both of them may be able to try feeding from a bottle next week sometime. That would be great! Maybe Noel and I can enjoy some champagne New Year's Eve and they can enjoy a bottle. :)

Giving it the ol' college try

When we showed up to the hospital today, Jude was being switched to the nasal cannula! Last time he tried, he lasted 30 minutes and required a lot of oxygen. Today, he lasted for at least an hour (then we left) and wasn't requiring as much oxygen as last time. We're still not sure if he'll last on it or not, but he's doing much better than he did last week! Go Jude! It's time to get to Nursery B!

Today

Noel was able to have some skin to skin time with Jude today! Jude did great overall and lasted well over an hour. Noel's bladder was the one to end the cuddle time. :)

I think Hazel was posing for Glamour Shots today. :) What do you think?

Update

There isn't much new here today, but the plan for the week is to get Jude on the nasal cannula and Hazel off her TPN. These would be big milestones for both of them!

Jude's SiPAP settings will be lowered every 8 hours (as long as he's tolerating it) over the next couple of days before trying the cannula. Hopefully he's ready this time!

Hazel is still tolerating her feeds and they are going to be increased every 12 hours (as long as she's tolerating it). As her feeds are increased, her TPN will be decreased. We're hoping that she's at full feeds sometime within the next week. She's been doing well so far and even had an explosive poop this morning. I think she's learning from her brother!

Jude's still struggling to gain weight and hovers around 4 lbs. The doctor is continually increasing his feeds and the calories added to the breast milk. This is a slow process because the more calories added, the harder it is to digest. They need to make sure he's tolerating it before going up too much.

Hazel, on the other hand, is gaining weight like crazy. She's probably being helped out a lot by the lipids she's still getting. She weighs 4 lbs almost 10 ounces. Whoa!

Tomorrow will be 6 weeks. We still have no idea when the babies will be home, but we are hopeful it will be in 4-6 weeks. They have made so much progress in the past 41 days that we don't think they'll need more than 41 more. But, they are the bosses and will tell us when they're ready. It's great to see them reaching some big milestones though as of late (and hopefully more this week)!

Jude In His Big Boy Bed!

We showed up today to find Jude in a big boy crib wearing clothes. He has been maintaining his temperature well, so looks like these will be his permanent new accommodations. Way to go, Jude!

Breathing and eating

Hazel has been switched from a high-flow nasal cannula to a regular nasal cannula. This is the last step before trying to breathe on her own! I don't think they'll try that with her for a little while yet since she definitely still requires oxygen, but she's very close. She doesn't require much oxygen and is usually on "room air" or slightly higher.

Jude's back up rate (number of breaths he receives per minute) is being dropped slowly but surely. They may try him on the cannula again tomorrow. I'm still not convinced he's ready, but it's worth a try I guess! I do have a feeling he'll be ready by Friday though, if not before. Last night I told him that was his goal. He listened to me about his goal for extubation, so I hope he listens to me again. He could have Christmas on the cannula!

Hazel is making slow but steady progress in her feeding. She still hasn't had any major spit-ups! We're praying this trend continues.

Jude is eating everything they give him, just like he always has. His feeds are getting increased slightly every couple of days. He needs to put on some weight!

The Whole Family, All in One Day

Noel and Hazel:

Noel, Heidi, and Jude:

Noel and Jude

Noel holding Jude for the first time on the evening of December 17, 2010.

Daddy's Day

Pretty much status quo on Hazel and Jude today. They are both looking pretty stable and the doctor is trying to wean both of them on their oxygen settings. Jude will get weaned from the SiPAP to the cannula. Hazel will get weaned from the cannula to NOTHING! Hazel has not had major spitups in several days. Yay Hazel! The doctor is increasing her feeds very slowly and she is currently tolerating more than she ever has, which is great! She still needs to get her colon working regularly, but for now, we're thankful that she is keeping her food down. She still has a ways to go before being on "full feeds", which is necessary to get rid of her picc line.

As for the title, "Daddy's Day", Noel was able to hold both Hazel and Jude tonight! (Obviously not at the same time, since they are in separate rooms.) It was his second time holding Hazel and his first time holding Jude. Very exciting! We'll post a picture soon, but I'm not on the right computer to do it right now. I hope you can stand the suspense.

Hazel's Post-Bath Fuzzy Hair

"Hi, my name is Hazel and I have fuzzy hair and my mother's lips! I also got moved back to Nursery B! My brother tried the nasal cannula today, but he only made it 30 minutes. I hope he learns it someday soon so he can join me in my new home. I miss him!"

I have the magic touch

Yesterday, I was able to enjoy some cuddle care with Jude for the second time. As soon as I picked him up, he let out a really loud fart. He was not very content the whole time I was holding him and as we put him back, the nurse said, "He stinks!". She checked his diaper and said he had the biggest poop she's every seen him have. She weighed the diaper and it weighed 50 grams. His diapers earlier in the day weighed between 9 and 12 grams, so this was huge!

Today, I was able to hold Hazel. I decided to change her diaper before picking her up to hopefully avoid yesterday's scenario. I changed her wet diaper, picked her up, and she let out a huge fart. I called the nurse and told her that she stunk and I think she pooped (this is BIG news for Hazel who often needs enemas to go). Sure enough, she went on her own (she also went 3 times yesterday...yay Hazel!). I started to change her, got the clean diaper down and she went again. I asked the nurse for a third diaper, and she went some more! The fourth diaper try was successful. I was thrilled to change Hazel's dirty diaper since it's been such a struggle for her.

I guess I have the magic touch!

Not much news

No real news to report today. Hazel was moved back to Nursery A since a space opened up and they want to monitor her very closely due to her feeding issues. She is still having issues. The doctor held her feeds today for a couple hours due to a huge residual she had (The nurse checks every couple hours how much milk is left in Hazel's stomach before feeding her more. She is "allowed" to have 5 mL and still get fed. This afternoon she had 12). Luckily she didn't throw up at all! She doesn't seem like herself today and that's hard to watch.

Jude's CO2 level is still borderline acceptable, but the doctor's not too concerned at this point since he seems to be doing pretty well overall. The doctor mentioned to us that he might try him on the nasal cannula tomorrow. I am about 90% sure he's not ready for it, but who am I to say? He can always go right back to the SIPAP if he's not getting enough support with the cannula. We'll see what happens tomorrow!

They both had eye exams again today, but there's no news to report regarding that. The eye doctor says everything looks normal, which is great for now! We're just not sure if it's still too early to detect ROP (retinopathy of prematurity) which is what they are looking for or if "normal" means their eyes should be fine.

Today is one of those days where I'm not sure how much more of this I can take. We're so grateful to have so many people supporting us and praying for us, so thank you to each one of you!

Hazel's big day (and Noel's)

Daddy and Hazel got to enjoy some cuddle care for the first time today! Hazel was especially content when Daddy was singing to her. They both had a lot of fun. She was wide awake for much of the time. I think she thought it was time to play!

Hazel is going to be moved to Nursery B this evening. There are 3 nurseries in the NICU, and as babies become more stable, they are moved down the hall (each nursery is slightly less critical). The main qualification for making it to Nursery B is to be stable on the nasal cannula. This is very exciting, but a bit emotional for us. We're very sad that our children won't be right next to each other anymore. We're praying that Jude progresses quickly so they can be near each other again and we can visit the 2 of them very easily. We enjoy being able to walk back and forth between their beds, but now we'll only be able to visit one at a time (I think I'm having a harder time with it than Noel).

Jude's CO2 level wasn't very good this morning. We're praying this goes down so that he can stay on the SIPAP. He was having a very good day today when I was there. He LOVES it on his belly and the nurse let him stay there for several hours (turning his head every once in awhile).

Jude on the SIPAP

Hazel Saying Hi and Goodnight

A better day

Good news. I held Jude today! He had an x-ray last night that looked much better than his x-ray yesterday morning. Also, his blood gases were much better last night and this morning. The nurse, RT, and doctor agreed that I could hold him today, but if he started doing poorly, we'd put him right back. He did great! I didn't hold him that long, but it was so great to finally have the opportunity. We both liked it a lot.

He is still requiring quite a bit of oxygen, so we're praying that that number can come down soon. His back up rate (number of breaths he's given each minute) was decreased from 25 yesterday to 10 today. That's huge! Hopefully he can stay at that rate, but it's very common for that number to fluctuate.

Hazel's feeds are supposed to increase to 3 ml/hour this evening if she's tolerating it. She has now passed her brother on the weight chart for the first time. She is over 4 lbs! He is still at 3 lbs 13 oz. The nurse last night said it's probably due to him working so hard to breathe. He's burning lots of calories!

Our kids definitely have different personalities. Hazel's nurse last night said she's a very good baby, very calm, and tolerant of things (getting her diaper changed, her temp taken, etc.). The nurse described Jude as being fussy and having a temper. Other nurses have described him as the "wild man". I think he'll keep us on our toes!

No Cuddle Care

Jude does not seem to be tolerating the SIPAP very well, so I wasn't able to hold him today. It was disappointing and frustrating since neither of us think he'd do any worse being held, but we have to trust the nurse's and respiratory therapist's opinion. Right now they are watching him very closely since he's requiring a lot more oxygen than he was when he was on the vent. Also, his blood gases are border line acceptable. We will not be surprised if he's reintubated by tomorrow. It's disappointing, but it's better for him to get the help he needs and not be on such a high percentage of oxygen. If he is reintubated, we are praying that he does not get a bleed like he did last time. We are also praying that he does not get another infection. These things would really set him back (like they did before). We are really hoping that he just might need another week on the vent. The doctor told us today that it is not uncommon to have to reintubate.

It seems like breathing just clicked for Hazel over the past couple of days. She is doing so well on the nasal cannula. She is having less apnea than before and most apneas are self-corrected. She is receiving 2.5 ml/hour of breast milk and so far has not spit up. As they increase the amount and she approaches 4 ml/hour, we pray that she is able to tolerate it. She would need to reach at least 10 ml/hour before getting her picc line removed and we're very anxious for that to happen! That's the last IV that needs to be removed on either of our kids.

Thank you for your continued prayers.

Guess Who?

The scar kind of gives it away, doesn't it? Surprise, surprise, Jude was extubated today! He's had so many setbacks that they have not tried to extubate him since his second day of life, so this is a big step for him. When we were there, he had only been on the SIPAP for an hour yet, but he looked like he was doing well so far. We'll pray that he sticks with it!

On a side note, this was especially fun news for us today, because on Monday Heidi had told Jude that she wanted him on the SIPAP by Friday. What a good boy; he listened to his mother!

No Blockages

According to the doctor, the upper GI contrast dye study showed some reflux in the stomach after one hour, but showed no problems moving through Hazel's entire system after four hours. So we still have no word on what might be keeping her from digesting her food properly, but there are no blockages or problems that they can find. Thank God for this good news. Now let's pray she learns to feed soon. They'll start her again on breast milk tomorrow.

Not Hirschsprung's

The lower GI study is done, and the nurse told us that they have ruled out Hirschsprung's. Thank God. They're doing an upper GI study now, and we have not talked to the doctor yet, so we'll post more news as it comes.

Update on Hazel

The surgeon reviewed Hazel's case yesterday and wants to do a lower GI study on her today. That should indicate whether or not a biopsy is necessary. The GI study isn't diagnostic, but should show whether or not there is movement in the lower colon. We are praying that there is! The study will be done this afternoon. Hopefully we'll know more later today.

Mother/Daughter Cuddle Care

Prayers for Hazel

The doctor started Hazel's feeds again today and she immediately did not tolerate them. She spit up right away and this time there was a bit of blood present. It's obvious that starting and stopping feeding is not working and there is something else going on. The doctor thinks she may have Hirschsprung's Disease. A surgeon will come take a look at her tomorrow and decide whether or not he has reason enough to perform a biopsy. We're praying that she does not have this disease.

On a brighter note, Jude seems to be much more stable on his new ventilator. Hopefully this will help him progress more quickly to the SIPAP.

Hazel Wide Awake

Barfing Baby

Well, it is pretty obvious to us that it wasn't the breast milk Hazel didn't like. She's been on Elecare for a couple of days and today decided she'd had enough. Her feeds were increased overnight and again this morning and then she started barfing. She had one huge spit up when we were there his morning. When I went back this afternoon, she spit up about 6 more times within 30 minutes. It was heartbreaking. Her feeds have been stopped again and the doctor is stopping her caffeine as well as a couple other meds to see if they are causing her to have an upset tummy. She was switched to the nasal cannula earlier today to try and reduce the amount of air she was getting in her tummy. So far, she's been doing okay on it, but it didn't help her feeding problem. The doctor is hoping to figure out why she's having this problem soon so he doesn't have to do a big workup on her. Please pray that she'll tolerate her feeds when they start again and that she'll do well on the nasal cannula. It's great to see her face again!

Jude was switched to a different type of ventilator today. This one controls volume rather than pressure and will hopefully help him stay more stable. We're still praying that he gets off it completely very soon. Our goal for him is Friday, but we're not sure what his goal for himself is. :) He's in control right now and we just have to be patient with him.

Hazel and Jude will both be having eye exams tomorrow. Please pray that everything looks good!

So big!

Hazel and Jude have both been able to get rid of some of the fluid they were retaining, which is great. Jude has lost weight the past 2 nights, but still weighs 3 lbs 14 oz! Hazel has remained about the same and weighs 3 lbs 11 oz. We can't believe how big they're getting. If they keep up this rate, they won't even need preemie clothes when they come home.

Jude was able to get rid of 2 of his 3 IV's today! Since he's doing so well on his feeds, they removed his picc line. He looks so much better without cords everywhere. He is off all of his extra fluids and other nutrients and is just receiving fortified breast milk. Way to go Jude! His vent settings were lowered a little bit today. We're praying that this can continue and he can get off the vent soon. When that happens, he'll definitely be able to get rid of his last IV (if not before). It's being left in for now for fast administration of pain meds when he needs them.

Hazel is doing okay with the Elecare so far, but is still on a pretty small amount and isn't pooping at all. In the past, she's tolerated feeds up until a certain amount and then starts spitting up a lot. We're praying that as she approaches that amount (usually around 6 ml/hour), she is able to keep everything down (she is currently at 3 ml/hour). She's also under phototherapy again since her billirubin went up (a problem solved by eating and pooping).

That's about all for today.

We finally got to hold both our kids ...

... well, not exactly. But we might have won the cookie decorating contest!

Big exaggeration!

I just checked the price of Elecare online and it's only $200 +. So, the lady exaggerated a bit, but it is still expensive! At least it's not $3000!

Good day

Both Hazel and Jude were able to wean a little bit off their breathing settings today. Hopefully they do well with slightly less assistance so that they can continue to progress to the next step (SIPAP for Jude, nasal cannula for Hazel).

Jude had another head ultrasound and the clot looks slightly smaller than 2 weeks ago. This is a good thing! The bleed seems to be clotting and reabsorbing naturally. His head has not had any swelling, which is really great. The neurosurgeon looked at his ultrasound 2 weeks ago and was "pleased" with the way things looked. Hopefully he will say the same thing when he looks at the one from today. We continue to pray that this heals naturally and that he will not need a shunt put in.

Hazel's billirubin level did go up a little bit today, but the doctor did not order phototherapy yet (under the lights). I think he's hoping it resolves itself in a couple of days. She'll have her level checked again on Sunday.

Hazel started on a 1 ml/hour continuous feed of Elecare (lactose free, predigested formula) today. We're hoping that she tolerates it and then can start alternating that with breast milk. We attended a parent meeting last night with parents who have been through the NICU experience and one of them was telling us that this formula costs something like $3000 a bottle! I haven't looked into it to see how accurate that is, but I'm sure our insurance company LOVES us right now. Good thing she still has several weeks to learn how to digest before coming home, because there's no way we're buying her that stuff (even though we do love her a lot)!

Jude is doing well with his feeding and was increased to 6.5 ml/hour today. He is completely off his TPN (vitamins and other nutrients given through the picc line). They are starting to fortify the milk with extra calories today. It will be so great when he gets rid of his picc line! It might be awhile yet since it's hard to get in and they don't want to remove it too early. Also, they've been administering his antibiotics through it, so it will not be removed until he's free from antibiotics and eating very consistently.

We're really praying that Jude can get off the vent soon. If he gets off the vent, he can be held, he can stop getting fentanol (a drug he's been receiving for pain), and he can get rid of another line he has in his foot that they draw blood from all the time to check blood gases. That will be a day to rejoice.

Hazel With Her Eyes Open

Daddy Holding Jude at Weighing Time

"Please, please, can I get this mask off?"

Raise your hand if you like mommy's milk!

Our babies need a diet!

Okay, they don't really need a diet, but they both gained way more weight than they should have in one day. They are supposed to gain about an ounce each day, but they each gained 3-4 ounces. That means they are retaining too much fluid. Hazel looks puffy, but Jude does not. Noel says that if we just brought the doctor one of my baby pictures, he might think their chubbiness has just been inherited from their mom and there is no need to worry. :) The doctor is hoping they either lose weight or don't gain any additional weight over the next 3 days. They are both being given a diuretic to help get rid of the fluid (they have already been given this several times).

Hazel has completely stopped feeding again. The doctor tried the lactose free formula, but she threw that up (which, I think means that it's NOT the lactose she's struggling with). She was tested for infection, but everything came back normal (thank goodness!). The doctor wants her to rest overnight and they'll try a very small amount again tomorrow. She looked a bit more yellow today and we're anticipating that she'll be back under the lights tomorrow. Feeding would really help this problem, so we're really hoping she starts tolerating it very soon! She sure doesn't like the sunglasses that she has to wear with the lights on.

31 weeks gestation

Not much new here. Hazel's struggling with her feeding again. She spit up 3 times last night so they are stretching out her feedings her over a longer period of time. If that doesn't work, she may be lactose intolerant (hopefully a temporary thing, which is common with preemies) and they'll try alternating lactose free formula with breast milk.

Jude's CO2 level was a bit high again this morning so they had to increase his rate on the vent. We can't wait for him to be off the vent so this was a little hard to hear. We just can't wait for his lungs to mature!

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.

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.

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.

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.

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!)

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.

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!

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.

Photos 11/19/10

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.

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!

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).

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.

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).

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.

Home

Tears of joy: my wife is home!

Status quo on the twins today.

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

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...

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