Video of the little ones

Kelly here. I have some video from a little while ago. As Jen mentions, they are both off oxygen, and doing as well as could be expected. These videos are from before they were off oxygen. They are cute little people. It has been fun for me to see their little personalities becoming more apparent to me. I couldn't be more happy with their progress. I am so proud to be their Dad, and to my little people "keep fighting you tough little angels!!!"

Counting down the weeks

So much has happened in the last few weeks.

Here are some of the big changes we've seen:

They are wearing clothes and already have a rep as the best dressed kids in the NICU. It's easier to hold them with clothes on - somehow they don't feel so fragile. (I have more pictures, just need to get to a computer that I can upload them on)

Chloe is in an open crib and holding her temp! It is so fun to walk over to her crib and be able to see her so easily. I can also hold her anytime I want to now. Liam tried out the open crib but couldn't hold his temp. He's close though. They have weaned him down to 29.7 degrees in his isolette. They will continue to wean him down over the next day to 28 degrees. After 24 hours of holding his temp in a 28 degree isolette, he will move to an open crib again.

Both kids are nursing well. Chloe has slowed down a bit but Liam just keeps picking up speed. I try to do two feedings per day with each of them. Liam has done it perfectly for the past 3 days. Chloe has been really tired and only finished about half of the feedings.

Both kids have been struggling to make their own blood. This is a common problem for preemies. In the beginning they were given a transfusion every time their hematacrit levels (or crit as they say here) were low. If you've ever been anemic then you know how they feel. Dr. wants them to start making their own blood though so they've held off on transfusions. This week both kids blood levels turned the corner. Their crit levels are up and if they keep going up they should have a lot more energy soon. Liam doesn't seem to know he's supposed to be tired. He's been wide-eyed and alert everytime I try to feed or talk to him. Chloe is always in a semi-asleep state these days. My spunky little girl seems to have disappeared but I have a feeling it's just temporary.

Both kids are over 3 lbs. now - yeah!!! Chloe has about 5 oz on Liam but we're hoping he'll catch up soon.

The nurses are telling me it's possible Chloe could go home in a week! YIKES! I really want that but at the same time I'm panicking about the things I need to do first. I've got to find car seats for 4 pounders, stock up on formula (I'm getting some milk of my own but not enough to sustain life yet;), take the CPR class, and oh yeah, Kelly needs to get back here. Kelly is back in Seattle for a couple weeks (little scheduling error). If Chloe gets out before 2/7 when he returns, I will have to survive a few days on my own. Thank goodness Isabel will be there to help me:) Getting to the hospital to see Liam will be my biggest challenge when Chloe gets out. Hopefully it won't last long though. Liam is picking up speed and shouldn't be far behind his big sister.

I still don't know when we'll all come home to Seattle but maybe by the end of February... We're crossing our fingers and trying to remember to breathe.

Jen

Fantastic News!

Thursday we got some really amazing news about Liam. They did an ultrasound on both kids heads to see if there was any fluid or other bad things floating around in there. Not only were both kids free of fluid, Liam's brain bleed is resolving!!! I don't think I posted on this before so let me give you some background. Micro preemies like ours are at risk for lots of things. One danger is brain bleeds. Liam had level 3 and 4 brain bleeds. 4 is the highest and worst level with the most damage. Outcomes for kids with level 4 bleeds can range from very mild developmental problems all the way to cerebral palsy. Both kids are at risk for CP but so far they don't show significant signs of it. Liam's recent ultrasound showed that his bleed has almost entirely dissapated and his head looks almost the same as Chloe's. His Dr. couldn't believe the results. She said it is likely he will develop with very mild to no problems. There is of course no guarantee but these results are really encouraging. As the twins progress and hit or miss developmental milestones (which don't really start until they hit their due date in 6 weeks) we will get a better idea of what issues we may be dealing with. We feel strongly that God has big plans for these little ones and whether that includes developmental challenges or not, we are so excited to be their parents and help them fulfill their life's missions.

Some of you have asked about their eyes. They are doing great. Another risk for preemies on lots of oxygen is Retinopathy of Prematurity or ROP. The worst level/stage of ROP can result in blindness. I learned this week that Stevie Wonder was a preemie and it was because of excessive oxygen that he became blind. Doctors understand all of this much better now and they have learned to keep the oxygen levels as low as possible to protect their eyes while still helping them get enough oxygen for brain development. It is a balancing act. The twins last eye exams were a week and a half ago. Both of them have Level 1 Stage 2 ROP. This is good. It would be impossible for them to escape without some level of it given how early they were and how much oxygen they've needed. Chloe's has even improved some since the last test which reflects her progress towards breathing on her own. Hopefully hers will continue to improve and she may totally outgrow this problem. Liam's has not gotten worse and when he finally comes off oxygen his will hopefully improve too.

Here's an update on all their discharge criteria.

Weight: Liam has been gaining on Chloe this week. Don't have the exact number on hand but both kids are at about 1300 grams. Yeah! Some of the Doctors are concerned they they aren't gaining weight fast enough but they seem otherwise healthy and they started out so small (600 grams) that we can't expect them to be as big as other babies.

Take all food orally: Chloe is a rockstar. She is now taking 2 feedings a day orally. Sometimes she doesn't finish the whole thing but she gets most of it. It is so fun to nurse her and see her big eyes looking up at me. She loves our time together and anticipates it when I go to get her from her isolette. She starts rooting and wiggling and trying to get out herself. Liam has started doing some oral feedings too but he gets tired after about 5 minutes. He also enjoys the experience but mostly wants to sleep through it. Such a guy:)

Maintain Body Temp: They are both staying at about 32 degrees on their isolettes. The Doctors may experiment with taking them out of their isolettes next week. We'll see how that goes.

Breathing Room Air on their Own: Chloe has been doing this for over a week. Liam has struggled a bit more with this. He is using 1 liter of nasul cannula flow (that's in increase) but this allows him to use a lot less oxygen. His range is between 21 - 26% most of the day now. (Room air is 21% oxygen) We hope that he will start hanging out in the 21% range more often and then they will try to take his flow down again.

As you may have guessed Chloe is progressing rapidly. It is not unlikely that she will be discharged in 2-3 weeks. We are excited and terrified at the prospect. It will be really hard to have the twins in two different places and I'm not sure how we'll deal with that. We are praying that Liam will catch up soon.

Kelly got here yesterday and he brought camera stuff. We should be able to start downloading pictures more easily soon. It's so nice to be all together again (sort of). Isabel really missed him. She got a fish this week named Ariel and Isabel takes her care very seriously. Belle went to visit cousins overnight for a few days this week and asked Grandma to take time off work to babysit Ariel while Belle was gone. She has also made up a lot of rules about how close you can stand to Ariel and how you may interact with her. Sounds sort of familiar...

Thanks once again for all your prayers and kind thoughts. We love to read your comments and we know that all your support has made a difference.

To all our friends in Utah, I hope you can come to the shower next week. Isabel and I would really love to see you!

Jen

Baby Shower for Jen!!!

This is Jen's sister and we wanted to throw a Baby Shower for Jen while she is here in Utah! This is going to be a little unconventional due to the fact that we need to do the shower while the babies are still in the hospital and since Jen does not actually live in Utah! The shower is planned for Saturday January 24th, so if you would like to come, please email me at

nelsonkathleen81@gmail.com

and I will send you an actual evite invitation with all of the details. If you know of anyone that does not look at this blog who would like to come please send me their information (such as an email address) so that I can include them as well. If you know of anyone who does not have email access but would like to come feel free to pass the Shower Info onto them and just send me and RSVP so we can plan on numbers.

Thanks so much!

Kathleen Nelson

Introducing Chloe and Liam

Liam

Liam

Chloe

Chloe

Chloe

Liam

Chloe

Chloe

Chloe

Chloe

These pictures are a week old. When Kelly comes back out next weekend he will bring the camera cords and hopefully it will be easier for us to update pictures.

It has been an eventful 2 weeks. A week ago, Saturday, the birthmother signed relinquishment forms and the twins were officially placed with us. This Wednesday the birthmother flew back home. She had named the twins Victoria and Frank after her mother and grandfather and after using those names for a couple of weeks we got pretty used to them. They will stick around as nicknames. The names we have given our babies are

Chloe Ellen
and
William James

Ellen is Grandma Mary's middle name. We will call William, Liam. William James is a family name several times over on the Jarrett side. James is my Uncle's name. So Liam is named for several important family members.

It's been fun to start using these names for our babies. The nurses are still getting used to them but seem to approve:)

Both babies have made dramatic progress over the past two weeks. I'm going to run down the discharge checklist (all the requirements they need to meet before they leave the hospital) and how each of them are doing on these things.

Weight: Need to weigh between 1500-1800 grams.
Chloe weighs 1190g and Liam weighs 1150g. They have had more and more consistent weight gain over the last week. I'm convinced that all the kangaroo care is making a difference. They are so happy and smiley when I hold them.

Take all food orally (bottle or breast) for 48 hours straight.
Chloe started non-nutritive breastfeeding last week and acts like she's been doing it all her life. Tomorrow we will try nutritive breastfeeding using a supplemental nursing system. Yes, it is possible for an adoptive mother to breastfeed. If she does well with this once per day we will increase to 2 times daily, then 3, etc. and then probably introduce bottles for the times I'm not there and eventually she will be taking all her food orally.

Liam just tried non-nutritive breastfeeding today and did well. He's not as aggressive about it as Chloe but that seems to fit his personality. He had a "hmmm...." expression on his face the whole time. It was really cute. I'm pretty sure after a few more experiences he will decide he really likes it.

I'm getting comfortable holding and handling them. I take them out of their isolettes myself and it's so fun to be close to them. Chloe is sassy and social while Liam is sensitive and sweet. He hates a wet or messy diaper. They fit into our family very well.

Maintain their body temperature in room temp air.
Both babies are in isolettes that keep them warm and humidified. Their body temp should be between 36.5 and 37.5 degrees celsius. Room temp is 29 degrees. When they first got into their isolettes they needed the isolette to be at 37 degrees, doing all the work. For the past couple weeks their isolettes have been at 33 degrees. Friday Chloe's isolette went down to 32 degrees and Liam's went down to 32 today. As they continue to gain weight it will get easier and easier for them to maintain their own temperature. Only 3 more degrees to go!

Pass the Car Seat Test
Sitting in a car seat and breathing in that position can be difficult for tiny ones. Right before discharge, they will both have to spend 2-3 hours sitting in a car seat while their breathing, heart rate, and oxygen saturation are monitored. If their vitals all stay in the safe range, they pass the test.

Breathing room air on their own
This is not an actual requirement to go home. If it's the only thing holding them up, they will send babies home with oxygen and monitors. Both babies started out on ventilators and then moved down to nasal cannulas and supplemental oxygen. Last week Chloe stopped using supplemental oxygen and a few days later her nasal cannula came out. It is so fun to see her little face minus the oxygen tube. She was also being given caffeine to help with her breathing and yesterday they took her off of it. She is breathing very well without it. She has not had an apneic (non breathing) spell for 7 days. Now, without the caffeine she needs to go 2 weeks without apnea spells and then we'll know she's outgrown apnea. Liam is still receiving supplemental oxygen. Room air has 21% oxygen. He is using anywhere from 24 - 33 % oxygen. Earlier in the week he was receiving 1 liter of air flow through the nasal cannula. He's down to 1/4 liter of air flow now. If he continues to do well, they will keep dropping the oxygen and then eliminate the air flow. Can't wait for his cannula to come off!

Lay in a supine position for 2 days
Supine means on your back. Our babies like their tummies a lot better than their backs. They breath better and are just happier that way. Obviously it wouldn't be safe for them to sleep on their tummies so they have to get good at breathing on their backs. As they continue to do well with breathing, they will be given more opportunities to lay on their backs. This will also help with head shape. They have flat sides of their heads from constantly laying on their tummies or sides.

So that's the list as far as I know. They have made a lot of great progress these last two weeks and it feels like we're on the upswing. Thank you for all the prayers and kind thoughts. We love reading your comments and emails and knowing that you are all following this. Sorry if we can't answer many of them. If your a facebooker you can search for Kelly's facebook page. He does more frequent but less detailed updates on the twins there.

Jen

An Elaborate Game of Pretend

This Is Jill, Jen's little sister. I hope it's OK if do a quick post. These are pictures I took on the day Jen and Kelly got their new van to pack all of their stuff into, to move to Utah, to meet their new twin boy and girl for the first time, just before Christmas. When Kel was signing papers for the van I said to him and Jen, "I feel like you guys are playing some very elaborate game of pretend"...

they agreed. :)

31 weeks and counting

Liam

Chloe
Chloe

Chloe

Liam

Liam

Liam

Chloe

Chloe

Isabel

The last week with our twins has been great. They will be at 32 weeks gestation on Saturday--only 8 more weeks until they are supposed to be born! We are getting more comfortable with the hospital routine, the nurses, desk attendants and other hospital staff recognize us now and have stopped asking for our ID. We found the cafeteria (surprisingly good!) and the hospital library. Isabel even got to come to the hospital and though she wasn't allowed into the NICU she was able to sit right outside it in a hallway with Grandma Mary. Before Kelly and I went into the NICU she asked, "Mommy, will you please tell the workers that The Big Sister is here?" We did tell the babies' main nurse that "The Big Sister" was out in the hall and she went out to say hi to Isabel. The nurse talked to her for quite a few minutes and Grandma said Isabel was beaming. When we went in, Grandma held her up to the small window so she could see us scrubbing in. Seeing that cute little excited face peeking through just about killed me - I knew how bad she wanted to come inside and I was so proud of her for handling it so well. She is doing really well and finally in the last two days she's started to miss Mommy and Daddy. It only took 2 weeks of 4-8 hours/day away from us. Grandma, Grandpa, a steady stream of cousins,and Christmas are pretty good distractions.

Today Kelly got to Kangaroo our baby girl. He was really nervous to do it but he was pretty hooked by the end of his time with her. He will get to hold little boy tomorrow and he can't wait. I did take pictures and at some point I'll get them onto the computer. The pictures I've posted today are from the last week and a half. Little girl is rounder and often has a bow in her hair. Little boy has a very long, skinny face. We can now tell them apart in pictures really well but it will probably be harder for you to do. They just get cuter and cuter. They seem to be learning our voices and smells better. Little boy has been responsive from the beginning but it's taken a little longer with baby girl. She really paid attention to us the last couple days and it's been fun. Little boy did have a scare a few days ago but thankfully he's recovered well and is making progress again. He was having trouble with his digestion and they were worried about a potential infection called NEC. It's an acronym for a really long set of words I can't remember. Thankfully he didn't have NEC and after a day without food, just fluids and a blood transfusion, he seems to be doing much better.

There are several milestones that each baby needs to reach before they can go home. These include weighing at least 2000 grams, breathing on their own with no extra oxygen or nasal cannula airflow, holding their own temperature in an open crib, getting all their food from a bottle or breast, and 8 days without any apnea or bradycardia spells.

Here's how they are doing on each of those things now:

Weight - Little boy weighs 975 grams. Little girl is at 1052.

Oxygen - Little girls spends about half her day without extra oxygen and she's on 1/2 a liter of nasul cannula airflow. Little boy spends his day between 24 - 33 % oxygen (regular air is 21% oxygen) and he's on 2 liters of nasul cannula airflow.

Temperature - Both still need a lot of isolette heat to keep their body temperature. When they weigh about 2000 grams they will probably be able to do it on their own.

Food - they get all their food via a tube that goes in their noses and down into their tummies. Hopefully they will be able to start learning to eat with their mouths in a few more weeks.

As and Bs - (Apnea is when they stop breathing or breath too shallow, Bradycardia is when their hearts slow down too much) Little girl hasn't had a real spell for a few days. Little boy had a couple yesterday.

So these are the things we watch every day. They have improved in all of these just in the last 2 weeks. It's exciting to see everymorning what they weigh and find out how they are doing on all the other measures. Better get to bed now so I can get to the hospital tomorrow morning!

Jen

Kelly goes back to Seattle on Sunday which I'm not at all excited about but it has to be done. He will stay home for 2 full weeks so he can get on top of work and then come out for a weekend on 1/16 - 1/18. Hopefully he will come out every weekend after that.

Glad to see so many of you enjoying the blog. We love your comments.

Jen