April 10

As we get closer and closer to that April 10th date, I can't imagine what I would look like if both Jack and Ella were still tucked away inside me... a whale comes to mind!

Anyway, here's an update from the NICU:

Jack is up to 5lbs 10oz. He is on room air with a 1/2 liter flow through the cannula. I know that doesn't make sense for most people, so let's just say it is a vast improvement! We tried Jack with no support, but he just couldn't keep his oxygen saturation high enough (oh well, at least we tried). Feedings are going slowly as both Jack and I try to figure this out. He wants to suck on the bottle but not breath - hopefully it will balance out so that we don't have to take him home tube-feeding. I really think I can handle the oxygen support (his lungs are only getting better); however, the tube feeding would stink.

Ella is up to 5lbs 13oz. She better watch it as Jack is catching up with her. Ella was supposed to be discharged by now, but as you already have read in the previous post, she had other plans. She has also been having eating issues. She can't stay awake to take her bottle which is a no-no in NICU living. Hopefully she'll snap out of it before they decide to stick another tube down her nose. I guess we'll just have to wait it out.

I'm still hoping for the April 10 discharge date for both... I'm so ready to get "this" started! I know there will be months of therapy, specialists, and other worries... but I'm ready.

Ella makes the call

Kristy packed up all her clothes this morning after a nice quiet evening at home last night. She had decided to stay with Ella at the hospital until Jack was released. After 13+ years of marriage, we thought that last night would be our last one without Jack and Ella around, so we reminisced about the last couple decades and how life would change now...

Then, after Kristy got to the hospital, she learned that Ella had decided to brady (hopefully for the last time). This resets the clock, so she has 5 more days of admission. So, we'll head back home again tonight and Kristy has a couple more days...

Also, Jack has been doing a bit better with his oxygen. He was on the cannula set on room air for the yesterday, but today he decided he needed a bit more support. We were hoping on the outside chance that he may come home w/o oxygen support, but that doesn't appear likely now.

Ella is now at 5 lb 11 oz and Jack is 5 lb 1 oz. It's great to see them both pass that 5 lb mark.

On a sad note, our prayers go out to the family down the hall whose young one passed away today. Kristy has a card with a quote that goes something like 'Sometimes when one person is lost, it feels as though the whole world is depopulated'.

Holy Crikey!

Today we got some good/bad news...

Ella, being the superbaby she is, has blown us all away! She is breathing on her own (for 2 weeks), taking the bottle each feeding, and has not had a brady in a week. This being the case, we were told today to expect Ella to be discharged Thursday or Friday!! We are very excited, but I suddenly feel very unprepared... We're hoping for a discharge on Friday just to catch our breaths.

The bad thing is that Jack is not ready to go home. This brings us to this: we either have to live in the NICU 24/7 with Ella until Jack can come home, or we bring Ella home and visit Jack when we can. You see once Ella leaves the unit, she can not come back in. Also, the nurses are no longer "responsible" for Ella, so someone has to be there to take care of her at all times.

Though it is not an ideal situation, I would rather live in the NICU with Ella than just visit Jack when we can. It's just not fair to Jack - he needs us too. Hopefully, this living arangement will only last a couple of weeks. Jack will still be on Oxygen and probably a feeding tube, but at least we'll be home.

Overall, it looks like this beginning chapter is almost finished. I am soooo ready to have my family at home!

Happy Easter

Kristy and I hope you have a great Easter. We also want to thank you again for your thoughts and prayers. God's answers continue to amaze us.

Game on

Today was play day with Jack and Ella. Our nurse, Paula, made sure that the day was eventful...

We got to hang with them during the basketball games


Watch them on the boppy




And see what will happen when both of them start to cry...

Bottles for All

The big news of the week is that Jack has joined Ella in bottle feeding. He took the first one today and did a great job! Originally he wasn't going to get to try so soon, but he's been doing so well with his cannula that there was a change of heart. He sucks on his pacifier with such zeal that we knew latching on wouldn't be an issue. It was the breathing, sucking, and swallowing all at the same time that worried us. Jack did really well at showing me when he was getting overwhelmed, which made it easier on the both of us.

Ella continues to make strides... she can take a bottle at each feeding if she is up to it. Previously she was at up to 4 bottles per day (the rest was tube fed). Her weight is up to 4lbs 14ozs. Wow! Really, the only thing she has left to do before she is discharged is take all her feedings and not alarm (brady/desat). I'm excited, yet scared!

Jack's UTI antibiotic will be finished on Friday and then we retest. Hopefully, it will be gone without any other issues. His sugar levels are still fluctuating, so an Endocrinologist is doing blood tests on him to see what the underlying issue is. We'll get results next Monday or Tuesday. I'm hoping for immaturity; the alternatives aren't so pleasant. Jack is up to 4lbs 7ozs, but he has more ground to cover before being released. There is a very big chance that he will be coming home on Oxygen.

We interview our last pediatrician tomorrow... decision time.

Sunday is picture day

Today was a nice, quiet day. Jack is up to 4 lb 4 oz and Ella is 4 lb 11 oz. The docs have started talking about home, so we're getting anxious, nervous, excited.... Ella has been doing great w/o oxygen support. It's been 8 days now since they pulled the cannula. Jack is doing better, but still on the vapotherm at a 30% level. He's about 3 weeks behind her on the oxygen support. We'll have quite a decision to make if they're released separately...

Sundays are the day that I've been uploading all the pics, so below are several from the past several days.

Ella and Grandma Will today


Jack being held today by mom


Ella's bath time yesterday


Ella's angel pose


Ella taking her bottle


Jack's favorite friend

It's just air

Today started a little depressing, I was feeling grumpy and a bit selfish. After having an overabundance of free time in the last dozen years, I'm now forced on a tighter schedule. Friends and colleagues have joked with me for years about not knowing the changes that kids will bring, but it's now coming to life... I know, I know, I'm more than exuberant about having Jack and Ella in our lives, but sometimes I miss the lazy Saturdays (you can all laugh at me now...).

Anyways, we got an abrupt phone call right after my little tizzy from the hospital saying that Jack's cultures from Thursday had come back positive for a urinary tract infection. Reality kicked in as the word infection had become our most feared enemy. Fortunately, the UTI is easily treatable and probably not a sign of a greater infection. There is a fear of kidney issues, but the odds are slim.

So, we made our way to the hospital and, of course, the kids cheered us up. Kerri and Bret dropped by for a while and Kristy got to give Ella another bath. It was hilarious as she promptly decided to relax and poop immediately. After a bath water change, I got a good video of her follow-up. This time it was 'just air'.

Ups and Downs

Jack had a bad report a couple of nights ago having many Bradies and desats. His O2 requirement was much higher than usual, and his scrotal edema had returned. This led to some blood work, lasics and a chest x-ray. Fortunately, his blood work came back negative for infection. The not so good news is that the x-ray showed he had some congestion in his upper right lung. The discussion was to possibly put him back on the CPAP; the same CPAP that Jack hates and worked so hard to get rid of. The RT, however, asked the doc to try a little vibration devise first. We'll see tomorrow morning if it works; if not, Jack has to go back on the CPAP 8 hours a day. YUCK! Our nurse practitioner thinks some of Jack's issues can be helped by adjusting his nutrition, so Jack is getting a special additive (protein) in his milk the next several days. We are hoping this will help his body "figure things out."

Ella continues to progress in her bottle feeding trials. She gets to try to bottle feed two times every 24 hours. Her intake varies, but she averages half her feed (20ml out of 40ml). It is so cute watching her... she gets these huge eyes and looks so amazed that something happens when she sucks on the bottle. It only takes a couple of cycles of sucking and breathing for her to get tired. I haven't figured out the whole burping thing, but I'm sure it will come.

I can't help be feel scared about the next several weeks. We only have 4 weeks until their due date and a possible discharge date, but it seems like we still have so far to go. Jack is still heavily reliant on Oxygen and both have to learn to eat. We have to arrange for a pediatrician, make decisions about vaccines, and figure out what we're doing about future daycare... Not to mention the scary thought of taking them off their monitors. How will I know what their saturation levels are? How will I know their breath rates? What happens when I fall asleep? Too much stress!!

More Pics

Love at first sight





Got thumb?





Daddy and Ella

Jack gets a Crib

Today was a big day for Jack. Since he's been keeping his temperature in an open isolette, he was able to move to a crib. Not only is he in a crib, but has "ballooned" to 4 lbs 1 ozs. Some of the preemie outfits he has only go up to 5lbs. Can you believe it - he'll be out of these clothes before we even get home? It is truly a miracle every time I see him progress to the next level.

Ella has been having her own adventure. She has been in her crib for several days and doing great. Her weight is now 4 lbs 4 ozs. As great as that is, her biggest news is that she is starting to bottle feed. Today she took 10cc's in 5 minutes. We are trying a little more each day - not doing too much at once so that she doesn't become overwhelmed. I say she's a natural! What an amazing little girl we have!

Well, we have about 4 weeks left before their original due date. This date, April 10, has been the goal for discharge now for what seems like forever. I have no doubt that Ella will be going home without any extra "baggage" such as a cannula, O2, monitors, etc. However, Jack has a little further to go. The doctor said that Jack may need some O2 for a while after we go home, but he has come a long way and anything is possible. I think Jack will surprise us all.

As for David and I, well, we're struggling with the back and forth between the hospital and home. It wasn't so bad at first, but truthfully, we are just done. Leaving Jack and Ella is terrible; we hate it! Thankfully, David handles the whole situation better than I do (or hides it better), so I can cry on his shoulder. Don't get me wrong, Jack and Ella have had great care, but we are just ready to do it ourselves. We are just ready to be parents and have our family together. There are so many things that we dream about doing, but while they're in the hospital, it seems so far away.

Family Pics

My parents came to visit today, so we took advantage of Ella's new breathing capabilities and grandpa's camera skills to get some pics of the four of us to celebrate Jack and Ella's 8 week birthday... Oh, and Jack is now 3 lb 14 oz and Ella is 4 lb 3 oz.

No more cannula

When we walked in this morning, we got yet another surprise. Ella is now off the cannula and doing great after over 12 hours. It's amazing to watch her. Her nose, skin, face... look so perfect.




Jack didn't move to the crib today, but we expect it to be soon. He's still doing great on the vapotherm. Good thing he got Kristy's stubborn nature...

Progress

Today was a great day... When I arrived in the NICU this morning, I got a big surprise - both Jack & Ella had made some changes.

Jack had decided that he had had enough of the CPAP. He had been put on a schedule of 8 hours on the cannula and 4 hours on the CPAP, but that wasn't good enough for him. You see, after almost 8 weeks in the NICU and 5 weeks on CPAP, Jack figured out how to "take off" the mask. He would try to turn over and push it off or take his hands and grab the straps. The medical staff decided that Jack was obviously trying to tell them something, so they let him have his way. Jack is officially on the cannula full time. Wow!

Ella had a surprise as well. As I rounded the corner into her room.... she was in a crib! No more Isolette! Though I was soooo excited in the progress, I am now finding myself terrified that she no longer has a "bubble" to protect her. She is just lying there in the open... To make matters worse, Jack is going into a crib tomorrow.

I'm feeling a bit flushed as I type; I better lie down.

Hmmm

Is it Ella or David? You decide....

Milestone days

Today and tomorrow mark several milestones....

1. Today, Jack and Ella are 50 days old

2. Tomorrow is the beginning of our 4th month in the hospital

3. Tonight, we became the 'old-timers' in the NICU. The pair of twins that were 6 weeks old when Jack and Ella were born left today to go home. We're very happy for them.

NICU Down

Today started off on one of the famous NICU downs...

The nurse let us know as we walked in that Ella had another rough night. She had a number of desats during the night and had to be turned up on her O2. However, Ella had worked her way back down to room air by the time we arrived. Still, she seem lethargic and not herself. When we changed her diaper at the noon there was a small amount of what looked like blood in her stool... this freaked us out! Our nurse called the Neo and held her feeding. The Neo came and examined Ella. She didn't see anything physically, so she ordered some blood work done.

In the meantime, Jack's blood sugar was all over the place. Before a feeding, his blood sugar was really low and then once he ate, it was really high. She said it was like his pancreas had no idea what it was supposed to be doing. So Jack got a blood test too.

At this point we were terrified that Ella had an infection or even worse, NEC. (NEC is a really bad intestinal issue with preemies.) However, her blood work came back clear, so the Neo decided to go ahead and give her half a feeding at 3pm to see if she was digesting her food ok. Unlike the earlier part of the day, at this feeding she was more active and alert. Much to our surprise, she ended-up staying awake for the next 2 hours. David stood by Ella's Isolette and talked to her. He tried to lull her to sleep, but she was enjoying his touch too much. It was precious!

Jack's blood work also came back ok. His sugar level was great this time... something to watch for the future, but today he "fixed" whatever was happening. I held him for a little while, but trying to breath, eat, and be cute all at the same time can be a little overwhelming for him sometimes.

Something that we discovered today was that Ella is starting to change her sleeping pattern. She has begun staying up longer after certain feedings/changings while sleeping through others. The nurse said that she is too young to do this, but Ella is stubborn and likes to do things on her own schedule. I can't believe that this little baby that isn't even supposed to be born yet is already developing specific sleep and awake periods.

David and I stayed until after their next feeding (6pm) to make sure all was ok. I had to change Ella's diaper 3 times because just as I got a new one on, she filled a new one. Needless to say, her digestive system was working just fine. Not to be outdone by his sister, Jack's diaper needed changing twice.

After all the worry, we left the NICU on an up swing...

New pics...

After being lax with the camera, Kristy told me to pick up the pace, so here are several new ones from the last couple days, plus a new video...

Jack




Ella