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.

Going Strong

I thought I would make a quick update to the blog to let everyone know that Will, Kate, and MH are all still doing well. Both Will and Kate have been taken off the ventilators and are breathing on their own. That said, they both still have normal air (21% O2) blowing in their noses to help pressurize their lungs and "remind" them to breathe. They also have venous lines in their umbilical veins to provide fluids, nutrition, and do blood draws.

I'll try to get some more pictures uploaded in the near future so please continue to check the blog for further updates.

Thanks to all -
Josh, MH, Ben, Will & Kate

Happy Birthday Will & Kate!!!

At 8:53pm and 8:56pm yesterday, Oct 11th 2008, Katherine (Kate) Klein Lovekamp and John William (Will) Lovekamp were welcomed into the world.

MH had an ultrasound yesterday afternoon that showed little growth of both Will and Kate since their last measurement about 2 weeks before. So that, along with MH's declining health, made the decision easy for the doctors and they performed a C-section last night at about 8:30.

All three of them were doing great last night and are only getting better this morning. Kate was born first, weighing in at a whopping 1lb 7oz, followed by Will, who tipped the scales at 1lb 12oz. Both of them are on respirators but breathing room air without any supplemental oxygen and are taking a lot of breaths on their own without the assistance of the ventilators.

Needless to say we are releived at their good health but there is a long road ahead for both of them. We are also forever grateful to all of you for your continued thoughts and prayers for our now larger family.

Love -
Josh, MH, Ben, Will, & Kate

Still Pregnant...

Dinner together in the hospital cafeteria - yummy Schlotzsky's

So, MH and the twins have successfully cleared 26 weeks and have now been in Phoenix for just over 2 weeks. We continue to get daily updates on the progress of her health and that of the twins (who continue to do well). She (MH) seems to be having a gradual decrease in kidney functioning, which by itself isn't too worrying, although I think the consensus is that it is likely an indicator of her eventual decline leading to a C-section. That said, there is still no way to predict when that might happen so we continue to be thankful that we have come this far and are hopeful that things will stay steady for a while longer.

Kate pushing back at the heart rate monitors

MH's mom, Kay (aka Mimi), continues to be a great help in Phoenix with Ben, MH, and myself. Ben and I gave her a break and visited an Oktoberfest event in a local park in Tempe, AZ on Saturday. The two of us had a great time riding the ferris wheel, merry-go-round, and playing on lots inflatable slides and bounce-houses. Ben burned off any remaining energy at a small water park that was there.

Ben having fun at the water park - he never slows down.

I continue to work mostly from Phoenix, although I am in Flagstaff for the next few days for work and plan to return to MH's bedside at the end of the week. MH's aunt, Lisa, is scheduled to arrive in Phoenix tonight for about a week to visit and to help out (and probably most importantly to provide Kay with some much needed companionship).

Thanks to everyone for continuing to check the blog and for keeping us in your thoughts and prayers.

A little more news

I thought I would update this blog with all of the tests and information that I am getting on a regular basis. I keep having nothing to report, because I am remaining stable at the moment, so thought this would help us remember and explain some things to you guys.

So, we had an ultrasound the other day and they predicted the weight of the twins. Will weighed in at a whopping 1 lb. 10 oz. and Kate weighed in at 1 lb. 5 oz. She is so dainty compared to her brother. They will continue to look at their growth rate every 2 or 2 1/2 weeks from here on out.

They will also be doing ultrasounds on Mondays and Thursdays to look at the cord blood supply to make sure it is adequate for each twin. This ultrasound will also include a BPP or BioPhysical Profile, where they watch the babies each for up to 30 minutes and look at their heartbeat, breathing, and movement. I will have one of these some time today.

They also draw blood every 24 hours. Pre-eclampsia can affect your kidney functioning, liver enzymes, and platelet count. So these labs are drawn each day to determine how all of these things are functioning. With kidney functioning, they look at my uric acid and creatinine levels. At this time, my creatinine level remains the same from when this all began - slightly elevated for being pregnant, but no serious concern. My uric acid level has increased, so they will be looking at that closely. My liver enzymes are normal, and my platelet count, which was decreased, has now returned back to the normal range. They like to see your platelet count above 100, if not they considering delivering. At one point last week, my platelet count was down to 94 and they held out, thank goodness, and it is now at 193 (150 being normal).

Another thing that they look at is the amount of protein in my urine, which helps to let them know how my kidneys are functioning. So, once a week, I have to collect my urine for 24 hours (fun, fun, fun) and then they analyze the amount of protein that I am spilling. My first test indicated 600 mg (and this number is the one that made me remain in the hospital in the first place). About a week later it was at 660mg and then the most recent reading last week had gone up to 1800 mg. The doctors start getting concerned if the number is above 5000 mg. I will do this test again on Sat. and every Sat. as long as I am pregnant.

They also do non-stress testing on the babies twice a day. This is where they put them on a heart rate monitor, which can tell them how well the babies are doing depending on their heart rate. This is a taxing thing to do twice a day. First, you have to find both babies and their heart rate and then you have to keep them together for 20 minutes. Thankfully, the twenty minutes does not have to be consecutive, but at 25 weeks, the babies are so tiny and moving around, it is difficult to hold them on. It has taken up to 2 hours before. I am already learning what it will be like to have twins at home.

A list of other things that aren't tests but they look at are: vital signs (including blood pressure - which mine have been perfect for a week now), headaches, vision changes, swelling, change in babies movement, etc.

So, after that wealth of information, I am holding steady at this time, for the moment. I spoke with a doctor yesterday who really spelled it out for me when I asked him if I could go home on bedrest and he immediately said NO!!!! Understanding that preeclampsia is unpredictable, he gave me his professional opinion. I will be in the hospital until the babies are delivered. He would like to see me get to 32 weeks, but he does not expect that I will. He thinks right now I am still in the honeymoon period from the steroid injection they gave me 2 weeks ago to help the babies respiratory system develop faster to be more ready for delivery. He thinks now we will begin to see a decline and I will need to be watched closer. It is possible that the first sign of this decline is the recent elevation of uric acid in my blood, which is a loose indicator of kidney function.

I also asked about going back to Flagstaff at 28 weeks, because the NICU there can supposedly handle babies born after 28 weeks. However, Flagstaff does not have everything that the babies may need if they come early, so I think that we have decided to stay here in Phoenix for the duration. It will be harder on the family for now, but those several weeks are nothing compared to a lifetime of health benefits for Will and Kate.

So, here I sit in the hospital with frequent visits from my mom, Josh, Ben, and lots of wonderful friends.

Thanks as always for the well-wishes and prayers.