Making Big Strides

After 15 long days since Will was placed on the ventilator with his second bout of sepsis he is finally free of it and breathing on his own. He was placed back on the high flow nasal cannula (skipping the CPAP machine) tonight after being weaned from the ventilator over the course of the last several days. He has so far been very happy with his new arrangments, breathing very well for the last 5 hours or so since being extubated. We are praying he will keep it up and not get too tired over the next few days so that this will continue to be the case. Thankfully, if he does get a little worn out, the CPAP machine will serve as a back-up instead of returning to the ventilator.

In addition to Will's breathing improvements, he also looks a lot better having lost a lot of his water weight with the help of his new friend, oral diuretics. Tonight he weighed in at 1741 grams (3 pounds, 13 ounces), which looks to be a lot closer to his "dry weight". He has just one more day of antibiotics and the accompanying IV, hopefully marking the end of all things entering his blood stream and hopefully keeping out all infection.

Kate is also doing very well. She remains on nasal cannula and has been weaned to 2 liters, which is the amount of pressure assisting her to keep her lungs open and breaths full. Will is at the top of this system at 6 liters. Next step for Kate will be low flow nasal cannula. Also, now that she is down to 2 liters she can begin to try bottlefeeding once she is feeling up to it. We are hoping to start her sometime this week. Yet another thing for her to learn! No rest for the weary. Once she learns this, she will be classifed as a "feeder-grower." This means she is just there to get fat and happy. And as far as her fat status goes, she is now 1687 grams (3 lbs. 11.5 oz.).

Another interesting thing that happens with these babies at about 1700 grams is they begin to regulate their own body temperature. So far, their temperature is monitored by a sensor that is placed on their skin. As the isolette sees fit (according to their temperature reading), it will heat or cool the bed. Kate has been trying to maintain her own temperature and has been switched to another setting that keeps the air at a constant and she does the rest. When she is able to sustain at room temperature, she can be moved out of the isolette and into an open crib where she can finally wear all of her adorable pink preemie clothes that she has, even though I think they will still be too big for her! Once Will gets more stable respiratory-wise and is not being asked to work so hard to breath, he too will be able to focus on regulating his body temperature. Once they can both be moved to an open crib, they will be allowed to share the same crib. How cute the pictures will be then!!! Speaking of pictures, below are a selection of recent photos that I thought you'd all enjoy...

Kate snoozing in peace

Will taking a lesson from his sister (notice the nasal cannula!)

Ben and Will checking each other out...I hope they always get along this well!

Kay (MH's mom) sizing up Kate

Are you my Mommy?? (Will)

Although they sure look a lot bigger they are still pretty tiny!! (Josh's hand on Will)

Say Cheese, Will!!

Mommy loving on Kate

Alright already...

OK people, we get the point - 8 days is too long between posts, but remember, no news is good news.

Kate - sugar, spice, and everything nice...

Will - snips, snails, and puppy dog tails...

Will and Kate are now both doing as well as can be expected. Will remains on the ventilator, but he is being weaned slowly. Between the "chronic lung disease" and the infection he seems to have gotten a serious case of bloating (edema) all over his body, including his lungs. This obviously makes it more and more difficult to breathe, makes him continue to gain too much weight, and has earned him a prescription for an oral diurectic. What is it they say - you leave the world the same way you came in - incontinence, diapers and diurectics. Oh, the joys he has to look forward to when he is 101 years old.

As I mentioned, he seems to have put on too much weight due to his water retention and swelling, and we are therefore, somewhat ironically, hoping for weight loss each night. This is kind of hard to wrap our minds around since, as of tonight, he is only 1776 grams (3lb 14oz). We are currently hoping that the diurectics he is on will help our "monsterous" baby lose some weight and get to what they call his "dry weight."

Mommy getting her "fix" from Will

Back to the point, the fluid he is retaining all over his body and in his lungs is now slowly disappearing, which should help him to breathe better and will hopefully mean that he'll get off the vent in the next few days. All his blood cultures and spinal taps have continued to be negative for infection and he will remain on his antibiotics for another 5 days to be sure that it is cleared from his system.

In other news, so far Will has had a busy week with various appointments. On Monday, he had his first PT/OT session, which was somewhat of a surprise so we have yet to talk to the therapists to see exactly how he tolerated it. Also on Monday, he had an eye exam that he passed (he's so smart!), meaning so far he's clear of ROP (retinopathy of prematurity). Finally, on Tuesday, he had a head ultrasound, which thankfully was still normal.

Kate is still on the nasal cannula, but has been weaned down to 2.5 liters/min flow. She has to get to 2.0 liters in order to try bottle feeding, so she is getting close. As long as she tolerates this change they will probably try 2 liters/min in the next day or two and hopefully try a bottle sometime this weekend or next week. While we are looking forward to bottle feeding, we are somewhat concerned that we may never want to go home since we'll want to feed her every chance we get.

Ben's already helping out so much!

On the subject of eating, Kate remains on full feedings (no IV) and has now successfully transitioned to formula in order to save the remainder of the breastmilk for her brother. She is also gaining weight like crazy, which we'll have to watch I guess (since Will seems to pack it on and Ben, who was also formula-fed, weighed 20 lbs. at 6 months). She has put on approximately 170 grams in the last 2 days and is now 1587 grams (3 lb. 8 oz.). She has also had a busy week, beginning with her first bath submerged in water. She loved it!! Her big brother even helped to wash her foot and her belly button. Like her brother, she too passed her eye exam with flying colors. They will both continue to have their eyes monitored every 2 weeks until they have matured (which I hear is anybody's guess on when that might be).

The doctors and nurses have used the word "stable," when it comes to Kate and have threatened to move her to Intermediate Care, which under normal circumstances would be a good thing, but since mama won't have her babies separated, she remains with her brother in the Nursery ICU. We will work to keep it this way as long as we can.

Better late than never...MH's baby shower was a hit!

So, for now, everyone is holding steady!! We are thankful for this reprive. Here at Thanksgiving it seems we have many things to be thankful for: our 3 beautiful children, the nurses and doctors who are diligently working to take care of Will and Kate, and our family and friends and for their relentless support. Speaking of which, MH had her shower on Sunday and was not only showered with some great gifts for the babies, but more importantly she enjoyed, at long last, being back in the company of so many of her friends again.

THANKS TO ALL!!

Josh, MH, Ben, Kate, and Will

Two steps forward

We have been told since the beginning that Will and Kate will take two steps forward and one step back throughout their stay in the NICU. Right now, they have decided that it is time to take those steps. Yes, Will is doing well. The last 2 days of blood cultures have shown no growth, which means the antibiotics are working. They also took out his PICC line which is thought to have been harboring the bacteria. YEAH! He is back to his old self with full force and is trying to pull out IVs, feeding tubes, and his vent tube. He certainly made his mama gasp several times today with all of his "goal-directed activity" (That is how his neonatalogist describes this stress-inducing activity). The plan for Will is for him to continue his medicine for 14 days, get to full feedings (he is eating 7cc right now and full feedings are probably around 25cc for his current weight), wean him from the vent and get him back on CPAP. And yes - NO MORE INFECTIONS!!!

Kate is also doing very well! She is continuing to get all of her nutrition from breastmilk that is fortified with calories and other vitamins by tube feeding. Next week, they will try her feedings with a bottle. It takes a while for premature babies to get the suck-swallow-breathe thing going, so that will be her next big task. She also received her PT(physical therapy) and OT(occupational therapy) evaluation today. She did a fabulous job and the therapists called her a "superstar." I know, PT/OT sounds funny for such a little thing, but since they are no longer in-utero, preemies can develop bad habits of positioning their body, which could lead to longer term problems. So, they show her and teach us how to position, hold, and contain her in developmentally appropriate ways. She is still on the high flow nasal cannula and her plan is to wean to low flow, continue full feedings, eat from a bottle, and get fat.

So, here are their steps forward. We are hoping for many more steps in this direction with the ultimate goal being a very celebrated homecoming. Thanks to all for your thoughts and prayers.

The Rollercoaster Ride Continues...

So, I'll start with the good. Kate is doing well with no significant changes. She remains on the nasal cannula and is growing stronger by the day. Today she pulled the cannula out of her nose at least 3 times and if I didn't know better I would think she'd be crawling in just a few more weeks. She is very active within the confinement of her little isolet and is constantly pushing up with her legs and turning her head from one side to the other.

Don't look at me, don't talk to me....I am not in the mood!!!

Will, on the other hand, took another step backwards today with a bout of lethargy and poor breathing that looks to be another bacterial infection. As a result, he was once again intubated and placed on the ventilator and his feeding was discontinued. He has also been put back on a few broad-spectrum antibiotics while we wait for culture results to both confirm the infection and identify the exact bug and the best drugs to fight it. These interventions seem to be doing their respective jobs and his demeanor, color, and blood gas results are all improving. That said, we are obviously very anxious for him to be back on the road to recovery and once again competing with his "big" sister for the first ticket out of the NyICU.

Thankfully, Gammi and Papa were here to see Will and Kate yesterday, when they were much more themselves and feeling good. In their short trip to Phoenix they have definitely seen both the ups and downs of the NyICU ride.

Please keep us all in your thoughts and prayers that Kate remain stable and growing daily and that Will continue to get stronger and fight off the new bug he's now acquired.

Quick Update

Just a quick update to let everyone know that Will and Kate have both been doing great since the last posting. Will has remained on the CPAP machine and Kate is still on the high flow nasal cannula, so no real change with respect to the amount of respiratory support the two are requiring. That said, they both seem much more stable over the last few days and look like they are feeling quite a bit better.
Kate did make a significant advance today, finally reaching full feedings!! To commemorate the occasion the nurse removed her PICC line. This leaves her with just a feeding tube, the nasal cannula, the pulse-ox monitor, the temperature probe, and the electrodes to monitor her heart rate and breathing. Seems like almost nothing, huh!! It actually is pretty strange not having the PICC line in since it has, to this point, been her sole source of nutrition for the majority of her life.
As for Will, he is still receiving a lot of his nutrients through his PICC line but is steadily increasing his feedings and will probably be on full feeds and have his PICC line removed in 3 or 4 days.
On a different note, my parents arrived in Phoenix today and Will and Kate finally got to meet Gammi and Papa. All four of them were very excited!! Unfortunately they both have to get back to work on Monday so they are only planning to stay until Sunday on this trip. They'll be back in January for a longer trip to help out once the kids get home. With the relief here for a few days, MH's mom, Kay, decided to take a trip out to Denver to see her brother and his wife, Craig and Lisa. Thankfully she is planning to return on Monday. Hopefully MH and I will be able to manage with just the two of us (and a throng of nurses) for 12 or so hours by ourselves!!

Happy Birthday Will and Kate!!

Kate loves her snug almost as much as her big brother that gave it to her.
Will just enjoys relaxing...after his daddy's heart!

It's hard to believe but its been exactly one month since Will and Kate came into this world. It has definitely been a pretty wild ride so far and while I hope the excitement is over for a while, I'm sure there will be plenty more for the next eighteen years or so...
Kate and Will have both had a pretty good end to their first month of life. On Sunday, Kate decided she was tired of the CPAP and was put back on the nasal cannula. We all hope this will be the last time she makes this transition and her scuba days are long behind her. As for her brother, Will has finally decided that he wants the scuba gear back and was taken off the ventilator this morning. However, for reasons too complicated to describe here, this time Will's scuba gear looks a little different and this nickname for CPAP apparently no longer applies. Instead he has a tube that goes about an inch and a half down each nostril helping to keep his lungs pressurized while he breathes on his own.

Kate and Will received crowns today to commemorate their birthday - royalty!!

Another development, somewhat related to their breathing struggles, is that Kate has now come within just 12 grams of her brother's weight. This is mostly due to the fact that Will has been on diuretics for a few days now to help dry out his lungs. This has helped do the trick along with removing some of the swelling that seems to have been contributing to some of his earlier weight gains. Both of them are now about 2lbs 12oz (Kate is 1238 grams and Will is 1250 grams). Similarly, according to their length measurements taken yesterday, Kate is 35.5cm long and Will is 36cm. It seems that by all accounts they are twins!

Ben and MH made cupcakes for the kids today, I think he enjoyed himself!

To celebrate their birthday today, MH and Ben made cupcakes and brought them to the NyICU for the doctors and nurses to eat, which they did (so quickly, in fact, that their hard-working nurse, Marina, didn't get a chance to eat any!). As you might have guessed, it was no mistake that one of the cupcakes had a "B" on it, standing for "Big Brother Ben" according to you know who. Unfortunately, Will and Kate could not share in the cupcake extravaganza and instead were stuck being tube-fed breastmilk. Kate is now up to 11ml every 3 hrs (and increasing by 1ml every other feeding). Will is still eating just 2ml every 3 hrs with no scheduled increases currently (waiting to see how he tolerates CPAP, which can push a lot of air into the belly).

I had the pleasure of holding Kate for about an hour today
She is incredibly adorable!!

Thankfully, as the kids are becoming more and more stable as time goes by, MH and I are now feeling more comfortable getting into some sort of "normal" routine. For me, this means getting back to work in both Phoenix and Flagstaff as well as some short trips out of town in the near future. For MH, this means spending more time with Ben and some friends from Flagstaff who have been able to visit Phoenix recently. She is also looking forward to a short return trip to Flagstaff to attend her "make-up" baby shower on Nov 23rd. This was originally scheduled the middle of September, but was rudely interrupted by her hospitalization and a helicopter flight to Phoenix! She is not, however, looking forward to the snow that will more than likely be there waiting for her arrival!
I hope to have more good news to report in a few days. Until them keep the thoughts and prayers coming and post a comment if you get a chance. We love to hear from you all - THANKS!

Size 'em up

Some people have been asking about the size of Will and Kate, not just weight, but a size they could actually picture. So a few days ago, I took a picture of the new bigger diapers that they have put on them. The picture below is Kate in her debut of underwear modeling. Looks ridiculous, huh?

Kate is now about 2 1/2 lbs. Will, although not weighing a lot more, does fill out the diaper better and looks large compared to Kate. He is currently 6 grams away from 3 pounds!!! He is truly a monster. HA! Now, if you were to think of them in length and weight when they were born, they were about the size of a water bottle. Tiny!

We'll plan to have another update tomorrow on their ONE MONTH birthday!

MH

Ahhh, the suspense...

Ben getting the hang of being a big brother

Sorry to keep you all waiting for so long. I am slowly but surely returning back to a somewhat normal life so blog time seems to be getting scarce. I suppose that is a good thing since it means that Will and Kate seem to be stabilizing and, while they still occupy most of my mind-space, I can find time to sit down and focus on other things (like work...).

Will got held by both of us this week and has definitely started to fill out

So, the last update announced Will's struggle with a bacterial infection. Over the course of the week and with the help of a slew of antibiotics he seems to have turned the corner and is back to his old self. That said, he is still struggling with bouts of apnea that keep him on the ventilator for the time being. However, I think that he and his mother had a heart-to-heart today and he is going to try his best to get back to the dreaded CPAP by the end of the weekend. Despite his respiratory struggles, you may notice from the pictures that Will has gained quite a bit of weight and tonight tipped the scales at 1300 grams (2lb 14oz). This is in spite of the fact that with his struggles with infection and some set backs with ventilation, he has been eating only intermittently.

Look who's talking...I couldn't help myself!!
(Don't worry, he was only yawning)

Kate, unlike her brother, has decided that she would like to breathe on her own and has been on CPAP since the middle of the week. Since then she has gradually required less and less assistance and seems to be happy with the decreased level of attention she is now getting. She has also slowly gotten back to eating with only a few minor setbacks and will hopefully continue to work on her appetite through the weekend. Like her little brother, she too has packed on the grams and tonight weighed 1070 grams (2lb 6oz).

Kate is getting bigger too but is definitely more dainty than her brother

As usual, the rest of the family is doing what we do. MH is at the hospital as much as she possibly can be, I have been working both in Phoenix and Flagstaff whenever possible, and Kay has been filling in wherever we need her to. Usually this amounts to taking care of and entertaining Ben, who continues to get bigger, smarter, cuter, and more spoiled every day!!

Ben is already trying to entertain his little brother Will

In closing, I guess I'll promise again to get another update to you all soon (take it for what its worth...).

Josh

Will's turn...

I will start off this post with Will and Kate's weights, which are hot off the press - Will is now 2lb 8oz (1050g) and Kate is 1lb 15oz (900g).

With that out of the way, on to more important matters...

Kate has finally turned the corner following her surgery. She had a pretty rough time the day after (Friday), needing to be "upgraded" to a high frequency oscillatory ventilator, which is to say that she needed more help getting her lungs back to work. This seemed to do the trick though and this morning (Sunday) they were able to switch her back to the traditional ventilator and she is now breathing with only occasional supplemental oxygen and is making great progress.

So...as the somewhat ominous title suggests, Will decided last night (Saturday) that it was now his turn to get some attention. Still on the CPAP (scuba) machine, he decided on a number of occasions that he didn't feel like breathing anymore (a.k.a. apnea). This is what initially put him on the CPAP machine and this time he got another "upgrade" to a ventilator, like his sister. Along with his apnea the nurse treating him noticed that he was much more lathargic than normal and suspected that he might have an infection. This led to them drawing blood for a CBC (complete blood count) as well as for a number of blood cultures from various locations. At this time they also started prophylactic antibiotics. This turned out to be a good idea since this afternoon (Sunday) a culture drawn from his PICC line was found to be positive (bug identity pending). Thankfully, all indications are that they caught it early (his white cell count wasn't too high) and, based on the preliminary bacteria ID, the drugs that he was already on should work for it.

There are still several other cultures with results still pending and tomorrow they will do a spinal tap to test it for infection as well. Hopefully these will all either be negative or at most will be positive for the same bacteria. In the end all of these results will help determine what drugs would be best to use to fight the infection and for how long. On a positive note, a CBC taken tonight showed that his white blood cell count had actually decreased since early this morning, which hopefully is a sign that the drugs are already having a beneficial effect. Also, although he is on the ventilator, he is requiring very little (if any) supplemental oxygen and his lung function seems to be improving (now his still-developing nervous system needs to catch up so it will tell him to breathe).

In other news, our weekend began with Halloween, which Ben thoroughly enjoyed, staying in his surgeon outfit all day and stealing the hearts of nurses throughout the hospital. He did have to correct a few nurses who mistook him for an "ordinary" doctor, telling them that he was actually a surgeon (with the ego to match!).

We closed out our weekend by moving from the condo of one extremely generous couple to that of another. With the change of seasons and increasingly nice weather in Phoenix, the place where we were "squatting" was needed by the owners (I can't blame them!). Thankfully, another friend of ours has a townhouse in Phoenix that he and his wife offered to us that is perfect. I continue to be amazed by the outpouring of love and friendship towards our family in these difficult times. We thank everyone for the gifts, cards, thoughts, and prayers.

Josh, MH, Ben, Kate and Will