Momma I'm coming home!!!

Ozzy Osborne said it best, "Well, Mama, Mama, I'm coming home." Yes, that is right. After 11 weeks and 3 days, we are getting to take Will and Kate home on December 30th, which is ironically 3 years to the day since we took Ben home after his 3 day stay in the NICU.

It has been a long, hard road, but we all made it to the other side with just a few scars to show for it (only Kate and MH's incisions). Now, that we have learned the routine of the NICU, it is going to be a little adjustment when we get home. A lot of the things are normal newborn things: waking up during the night, changing dirty diapers and clothes all of the time, etc. However, they, being the adorable preemie babies that they are, have decided to add on some more fun and anxiety for mom and dad. Will and Kate are both going home on oxygen and apnea monitors. Sure will make travelling fun. Some of you would say travelling, where are you going? Well, although we are told not to get the kids out very much so they are not exposed to sickness, we have an endless number of visits to germ-invested doctors' offices in the near future. This all begins not even 24 hours after going home, with a trip to the pediatrician's office in Flagstaff. Then, 2 days later on Friday, we have to go down to Phoenix for an eye doctor appointment for Kate. We'll round out what we know of for the month of January with a number of additional pediatrician visits and a second trip back to Phoenix for an appointment for both Will and Kate with a Pulmonologist on the 19th.

So, it seems that the craziness has just begun in the Lovekamp household. Thankfully we've still got help for a while longer from MH's parents and my parents will arrive just a few days after hers leave.

The other, more entertaining part of our lives, Ben, has had a great week with both Christmas and his birthday. As he says, "my birthday is stuck to Christmas, and Christmas is stuck to my birthday." He has opened a year's worth of presents and has had a good time sledding and playing in all the snow that we've had over the last few weeks. Probably a little over 3 feet all together. Daddy sure has had a good time shovelling it all off the driveway, the porches, the sidewalk, and especially the roof too!! Good Times!!

Sorry for the lack of pictures. We'll get some posted in the next few days. All three of the kids are just as cute as they were the last time we posted...

Merry Christmas!!

The nurses at the NICU in Flagstaff surprised us with a few photos of Will and Kate wearing nothing but a Santa hat. I'm sure you'll agree they are very cute!
Speaking of Will and Kate, they both have been doing very well and seem to be in the final stages of being "prepared" for a homecoming. They have been weaning them down on their oxygen requirements and they are both doing very well eating. So far today, they have both eaten all but one of their feedings from a bottle and have a few to go through the night. All indications are that they'll be heading home this week sometime. We are VERY excited to get them home, although I think Mary Hampton and I are beginning to realize the extent of the work that they will both require for the next year or so. A labor of love...

As for the rest of the family, we all had a wonderful Christmas and spent the day with family (MH's mom - Kay, MH, myself, and Ben) and friends. MH's dad, Phil, arrived late tonight after having a few travel issues making it from South Carolina to Flagstaff. I guess it still beats driving...
Ben had a great time and really enjoyed learning about and experiencing Santa this year. He was also very happy to receive all of his presents and had a great time playing with them all. Below is a bird's eye view of some of the present opening festivities.
We hope that you all had just as Merry of a Christmas as we did! We'll try to update with more pictures and news soon.
Josh, MH, Ben, Will, and Kate

Mommy's doing great

Just wanted to send out a picture of the best experience I have had in a couple of months. On Wednesday, I was able to hold both of my babies at the same time. Wow!! What a feeling. Looking forward to many more of these experiences.

Home Sweet Home!

So, the whole family is in Flagstaff...FINALLY!

Will, Kate, and I flew on a small plane (see photo) up to Flagstaff from Phoenix on Friday afternoon while Mary Hampton was in hot pursuit in our car loaded full of 3 months' worth of stuff (she opted out of the flight). MH's mom and Ben drove up Thursday with another car full of stuff in anticipation of our move home. Needless to say, Ben was very excited to get reacquainted with his toys.
As for our other two kids' accommodations, they received a rather warm reception at the Flagstaff Special Care Nursery, which had a crib decorated with their names ready and waiting.

If that wasn't enough, MH and I came home later that night to a welcome home banner and a Christmas tree that was delivered by some very thoughtful friends. (We were also greeted by Ben, who was more than eager to get the Christmas decorating underway...)

Being back home has been nice, although we apparently got here just in time. We got a few inches of snow on Saturday night and are expecting between 2 and 3 feet of snow this week! What happened to the warm Arizona weather??? Also, being at a different hospital with different doctors and nurses has and will continue to take some getting use to. The nursery here is very quiet with only about 8 babies, including our two. That said, Will and Kate seem to enjoy it and have done well with the transition thus far. Both of them have been eating the majority of their requisite formula by bottle, although they have required a little more oxygen now that they are at 7000 feet elevation. The doctors here insist that the extra oxygen is not a concern and that all that they need to do to get home is to eat all of their food from the bottle and gain weight consistently. They will almost definitely be bringing their oxygen home with them anyways (as long as they don't have to carry it with them to school I'm happy...).

So, other than trying to move back into our house and, with Ben's help, get the house decorated for Christmas, things are pretty quiet around here. Enjoy the pictures and we'll try to get another update out sometime this week. If we are snowed in we should have lots of time to write...

We are moving back!!!

So, it has been a long haul, but we are heading to Flagstaff tomorrow. Will and Kate's eyes look great and they have been approved for transport. They will fly by fixed-wing plane with their daddy in tow, while mommy drives up the mountain. Thanks for all of your prayers!!

Oh, and by the way, Will had his first bottle today and has not stopped since. He has eaten every feeding from a bottle. Pray that they will both continue to eat so well and then they will be going home soon. We still have hopes have having two bundles under the tree at Christmas.

Out of isolation?

Ben, Mimi, and I went to the Phoenix Zoo yesterday, which was fantastic. Ben is finally at an age where he enjoyed actually watching the animals instead of just running around on the pathways thinking we were hiking (which, we could have done outside of our backyard for free). It was a little depressing, because Ben has seen Madagascar and wondered why the giraffes and zebras were not together and why monkeys looked through glass. He did think he would show them a thing or two about the outside world though.

And, speaking of isolation, Kate is now out of her isolette and in the bed with Will. How cute are they!!!! Ben, nor I, could get enough of it!! Josh made the comment that it really made it feel like we have twins now (then he left the room screaming...just kidding). Mimi even took advantage of their accessibility today and held both of them. What a treat!

They are doing great and we are anxiously awaiting the results of the eye exam tomorrow. If and when the doctors give them the go ahead for a return trip to the NyICU in Flagstaff, we will decide when we are ready to backtransport them to Flagstaff. Keep us all in your prayers during this time.

What a difference a week makes

We now have 2 babies that have grown up so fast this week. They have both started wearing clothes, being held by Mimi, regulating their body temperature, and remained on nasal cannula. Kate has continued to eat from a bottle for 4 of her 8 feedings a day. Will needs to get to 2 liters/min on nasal cannula to try to eat. He is currently at 3 and Kate is only at 3/4 liters/min, which one doctor said that was "like blowing in her nose." Will has finally moved out of his isolette and into a crib, where he is patiently awaiting his sister's arrival, because they will co-bed them now that they are both more stable. Will is currently 4 lbs. 4 1/2 oz. (1950 grams) and Kate is 3 lbs. 13 oz.(1730 grams). She needs to gain about 70 grams (= 2.3 oz.) and she can join her brother. Will also decided to join in being clean this week. He had his first bath on Friday and he loved it! We have truly had a wonderful week!!!!!

How fast they change

Yesterday, I went in to visit the babies and was surprised to find Kate in a shirt. It was just a white hospital t-shirt, but it was still adorable; however, I quickly changed her into a pink shirt that we had gotten as a gift. Matching hat to boot. We also put some socks on Will so he would not be so jealous of his clothed sister. And today, when I went in, I was able to put a shirt on Will, because he was IV free (no more antibiotics, which hopefully means no more infection).

Also, when the doctor did her rounds yesterday, she decided it was time for Kate to try a bottle. I asked the nurse how ugly this would be. She said that she probably would choke, spit, and not be able to finish her bottle. I will have you know that she sucked that bottle down in 10 minutes. She would even regulate her breathing, sucking, and swallowing, taking breaks to catch her breath. The nurse said she was very impressed. When they start bottlefeeding, they only do one bottle a day and the rest are tube-fed. Well, Kate had a different plan. She decided that she would pull her tube out last night, so the nurse chose to bottlefeed her last night for a feeding and she drained it. I got to give her a bottle today. It is definitely going to take some practice to get bottlefeeding down with a premature baby. Guess that is why they have to take all feedings from a bottle before they are allowed to go home. I was so ecstatic to give her a bottle today- actual mommy work instead of just changing her diaper. I am sure when Will is ready to start eating from a bottle that he will do just as well as Kate has.

Another fabulous thing happened today - Mimi (MH's mom) was able to hold Kate for the first time. Quite an exciting moment, since it means that she is more stable now and able to tolerate other people holding her. I know there will be many more of these similar pictures.

And one more bit of good news and a plea for prayers - Their doctor said if they continue to improve and they pass their eye exam for ROP on December 10th, then they will be able to be transferred to Flagstaff on the 11th via fixed-wing aircraft (of course, depending on the weather and with daddy tagging along). Pray for good eye exams, for more stability, no setbacks, and great weather. Thanks!

So, now that they are bottlefeeding and wearing clothes, I had a slight glimpse into my future of laundry and feeding and realized it has been kind of nice with them being tubefed and only wearing a diaper. However, these activites will certainly be welcomed when they are finally home.

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

Moving Forward Again

The one advantage of the ventilator - seeing Kate's beautiful face!

Kate's surgery went well today, lasting probably all of 15 minutes, and successfully closing the 4 or 5mm duct between her pulmonary artery and aorta. However, while the surgery is over, her recovery will definitely take some time. She is being given pain medicine, which helps to keep her calm and comfortable, but it also causes her to rely heavily on the ventilator to help her breathe. That said, she is doing well and we are hopeful that within a few days she'll be back off the ventilator and holding her own.

Kate's incision is about an inch long and only covered with liquid bandage

Will had a good day today, graciously letting his sister have the spotlight. He is still on the CPAP scuba contraption but slowly coming down on his oxygen requirements. With luck he'll be back on the nasal cannula in the next day or two.

Will isn't too crazy about having the CPAP back but it seems to be doing the trick

After MH, Ben, Kay, and I spent most of the day in the hospital we decided to spend a few hours late this afternoon at a local pumpkin patch with Ben and then headed to dinner out in honor of Kay's 60th b-day. This was a great time and I think both Ben and Kay enjoyed themselves. It was great for MH and I to watch Ben explore new things at the pumpkin patch. They had a petting zoo, a horse-drawn wagon ride, a hay maze, and he even took a pony ride. He never fails to amuse us with most things he says or does...he is definitely quite a character!

Ben had a blast at the pumpkin patch - cheeeese!

One step back...

From the beginning of this ordeal the doctors and nurses told us that the kids would go two steps forward, one step back. Since my last post I think it is fair to say that they have both taken a step backwards, although I hope they will soon be heading in the right direction again.

On Monday both Will and Kate were put on CPAP (continuous positive airway pressure, a.k.a. "scuba gear") due to increased difficulty breathing properly and/or getting enough oxygen. For Will, he seemed to be breathing too quickly and wearing himself out. Kate, on the other hand, seemed to start showing symptoms of her PDA (patent ductus arteriosus) and was not getting enough oxygen from her lungs to the rest of her body.

Since then, Will has remained on CPAP and, although I'm sure its uncomfortable, it seems to be helping him. However, not long after Kate was placed on CPAP, it was decided that she needed to be intubated and placed on the ventilator. Because this seems to be due to her PDA rather than just premature lungs (as is the case with Will), the doctors have decided that it is time to surgically close the duct that is causing the problem. This procedure should happen tomorrow (Thursday, Oct. 30th) afternoon sometime.

As I think I mentioned in a previous post, this procedure is fairly routine, especially in small babies like ours, and has a very low risk of complications. That said, neither of us are very crazy about the idea of our baby girl having surgery, no matter how "safe" it is. Thankfully there will be lots of people sending good thoughts and prayers her way (hint, hint...).

Sorry for the not-so-great news on the two of them and I hope that my next update brings more smiles. I will also try to get some new pictures and videos on soon. One of the advantages of Kate being on the ventilator is that we can finally see her face since her nose is free of tubing. Unfortunately (I guess) the same is not true of Will and for now we're stuck with the old "scuba gear" again.

Til' next time -
Josh

No News is Good News...

So, another week has passed and Will and Kate are now 2 weeks old! They both continue to do well and are both now being tube-fed breastmilk. They have also both remained off of ventilators and are breathing on their own, although they continue to require the assistance of a nasal cannula to keep pressure in their lungs and an occasional "reminder" to take a breath. Will is now almost 2 pounds (900 grams) and Kate is 1 pound 12 ounces (800 grams). Also, Kate has now had 2 courses of ibuprofen in an attempt to close her PDA. Unfortunately these have not been successful and her duct remains patent. That said, she remains more or less symptom-free from this and as long as she stays that way, should not require the ligation surgery anytime soon. We continue to hold out hope that it will close on its own.

MH has made some dramatic improvements over the course of the week and her swelling has all but gone away. Her incision also seems to be healing nicely and her second follow-up doctor's appointment on Friday gave her a clean bill of health, allowing her to get back to doing more normal activities (like driving). For some reason the doctor still feels like doing any sort of housework is still quite a ways off - thank goodness Kay is still in town!!
One thing that helps all of our "recovery" is the so-called kangaroo care that we have been enjoying with Will and Kate. MH and I have both now had the opportunity to hold both Will and Kate and can't get enough of it. I have to say though that I still feel pretty uncomfortable holding them since they are so tiny and have about a dozen wires and tubes hanging from them. We have also had a number of friends come visit this week to see us and the twins, not the least of which was one set of their godparents, Hannah and Todd (along with their two sons Jackson and Reed). This involved a trip to the state fair today, where Ben and Jackson spent a solid 3 or 4 hours running from ride to ride while we tried to keep up.
I apologize that it took so long to get this update posted. I will try to do better...

Josh

Happy Birthday!!

That's right, Will and Kate celebrated their one week birthday yesterday. Its hard to believe that they've already been with us for a week. All in all, both of them continue to do great and are now down to what seems to be the bare minimum of respiratory support. Earlier in the week the nurses noticed a slight murmur when listening to Kate's heart. This is typically due to a PDA (patent ductus arteriosis), which is fairly common in premature babies. As a result they ordered an ultrasound of her heart and the aorta and pulmonary arteries. While they were at it they went ahead and took a look at her head to check for brain bleeds, which is also a potential consequence of being born so early (one that is as bad as it sounds...). Will on the other hand has had no murmur noted so he will wait until Tuesday to get a head ultrasound, per the NyICU's routine.

So, Friday night we learned that, thankfully, Kate's head ultrasound was normal and there were no brain bleeds found. This is a huge weight off of all of our minds. As for the PDA, we were told yesterday that it was fairly large and would require some sort of treatment. The first attempt at this is to administer ibuprofin for 3 days. They will then recheck her by ultrasound and if it is still not closed, will try another course of ibuprofin. If that is still unsuccessful, they will need to surgically clip the connection between the pulmonary artery and the aorta. While this sounds pretty dramatic, I am told it is a fairly routine procedure. We'll see...

On a happier note, Will is now eating 2cc of milk every 3 hours and both he and Kate gained 30 grams over the last day or so. That puts Kate a few ounces above her birth weight and I think Will is now 1lb 10oz, which is still a few ounces short of where he started.

Also, another landmark thing happened yesterday. MH got to hold Kate outside of her isolet. As you might imagine, she was very excited about that and is anxious to get her hands on Will now.

I'm attaching a few pictures and videos that were taken yesterday. I hope you enjoy them!

Josh

MH holding Kate for the first time!

Even though he is so tiny, Will (and Kate too) is already studying everything
around him, very much like his big brother did when he was a baby.

MH holding Kate for the first time.
Sorry for the image distortion, the video was taken sideways...


Will sucking his paci and checking out his momma

Freedom!!

As the title suggests, after just over 4 weeks in captivity, MH was finally released from the hospital in Phoenix yesterday (Wednesday) night. Maybe now she'll actually be able to get some true "bed-rest" without nurses and doctors coming in at all hours. Other than being tired and so swollen from the waist down that I have to actually help her pick up her legs she is doing well and continues to make gradual improvements. This progress will be monitored with regular office visits with her doctors at St. Joe's.

Just in time for her release, her dad, Phil (a.k.a. Poppy), who is an episcopal priest, flew in from South Carolina to spend some time with us and to meet and baptize Will and Kate. Part of the service was captured for your viewing pleasure in the videos below. We are planning to have a second service around Christmas time to acknowledge their baptism and to honor their Godparents, Todd and Hannah Sleeper and Jill and B.J. Henkenius.

MH's release from the hospital was definitely a bittersweet experience since obviously Will and Kate remain in the NyICU at St. Joseph's. We are continuing to stay at a condo in North Scottsdale owned by some very generous friends, for which we are extremely grateful. Ben was very excited about having his mom come "home", especially with the added bonus of having Poppy there to join him as well. He couldn't stop talking about how mommy felt better and that "everyone" was going to be home together. It was very sweet and truly showed how much he had missed his mommy through the course of the last 4 weeks despite his great behavior and resilience.

I suppose I'll close this entry by saying how great Will and Kate continue to do in the NyICU. Both of them are growing stronger daily and require less and less repiratory support. They have also both been giving breast milk a try (1ml every 6 hours) with moderate success, which is to be expected given their age. Their bilirubin levels have also been dropping with phototherapy, which allows for intermittent breaks from the foam "goggles" and otherwise blinding lights. Kate has been able to remain at her birth weight and Will, who lost several ounces in the first few days, now seems to be putting some of it back on (as directed by his mother...).

Now its time to get to bed. I hope you all enjoy this update and I'll try to work on another one in the next day or two -

Josh

3 days and counting

So, we've all made it through the first 72 hours without too many things to write about, which means a short update, which is good for everyone! Both Will and Kate remain free of ventilators and are breathing on their own (although Will's "scuba gear" is a little more intrusive than Kate's nasal cannula). They are both still receiving some assistance with some air blowing in their noses. They also have tubes in their mouths that go to their stomachs to relieve the pressure that might get built up from the air that is being pumped into their noses.

Will started eating some breast milk today (1mL every 6 hours), although I'm not sure he did very much with it yet. I think the nurse sucked most of it back up through his feeding tube a few hours after she gave it to him. Apparently there is some learning involved in pushing food and liquids through the stomach and out into the intestines. Kate is also trying to get this process figured out before she gets started on any food.

Other than that, there isn't much to report on the twins, thankfully. MH continues to try to recover from this process and has found that delivery was not necessarily all it takes to "bounce" back from pre-eclampsia. Over the course of the last few days she has begun to swell quite a bit, which is making her pretty uncomfortable. The doctors have been trying to help bring the swelling down but so far with very little success. Hopefully another day will be what she really needs.

I think that is all for now. It is pretty late here. MH's mom and I have been taking turns staying with her at the hospital, with the other on Ben-duty. Tonight is my night at the hospital and inevitably the doctors or nurses will wake both of us up just as we fall asleep. Ahhh bedrest!

Below are some pictures to keep you all satisfied until next time -
Josh

MH holding Kate and Josh holding Will in their isolets (aka tanks)

Diaper duty has officially begun (Will on left, Kate on right)...

Ben has been thrilled to meet his new brother and sister
and is already a great big brother

Kate is always opening her eyes to see what's going on.
Her relative lack of tubing has made her much more photogenic lately...

Will should be shedding the "scuba gear" sometime tonight or
tomorrow so soon we'll be able to get a good look at his face again.