segerblog

a day at the park

2011-08-15T16:57:00.000-07:00

the many faces of Rowan

2011-06-05T17:57:00.000-07:00

The Segerblom Family

2011-05-30T17:16:00.000-07:00

Adrienne Dominic Rowan Max Scott

Rowan is doing fine

2011-05-27T10:35:00.000-07:00

The last two days Rowan has been doing well. His breathing is getting better and they've taken him off oxygen. He's also been nursing really well, so we're hopeful to bring him home soon...maybe this weekend!

Here are a few more pictures of Rowan with his brothers, Dominic and Max.

introducing...Rowan Anthony Segerblom

2011-05-25T19:35:00.000-07:00

Rowan Anthony Segerblom

born at Sequoia Hospital, Redwood City, CA

5/25/2011

7:35pm

6lbs 4oz

19" long

Rowan and Adrienne are both doing fine.

Dominic and Max are both very excited about their new little brother!

Rowan was born 4 weeks early, so his lungs are not fully developed and he's having some trouble breathing. But they've got him in the ICU and are monitoring him closely. We pray for the complete development of his lungs and for overall good health. We also pray for a quick recovery for Adrienne after the C-section.

Thank you for all your prayers and support.

God bless,

The Segerblom Family

Dominic's first time on the front page

2011-02-21T13:00:00.000-08:00

Last weekend we took Dominic to a 'healing mass' at the San Francisco Cathedral for the Feast Day of Our Lady of Lourdes. He made the front page of the local Catholic newspaper.
Pretty Cool!

back in the hospital with another line infection

2011-02-21T11:17:00.000-08:00

Hi All,

Just wanted to give a quick update on Dominic.

Last week he had a low-grade fever in the middle of the night, and according to protocol for a central IV line, we brought him into the ER early Wed morning to have blood cultures done to check for infection. Sure enough, his line was infected with bacteria (a strain of the Strep bacteria), so we were admitted to the hospital.

We're still here waiting for the antibiotics to clear out the infection, but fortunately he's had no symptoms other than the fever on Wednesday and he's really been enjoying himself. As matter of fact, his first reaction to the news that we were going to the hospital was "Hooray! I can't wait to ride in the elevator, push the buttons for the automatic doors, use the foot pedals to turn on the sink, and play in the play room." Thank God he still has a positive association with the hospital and a short memory of all the not-so-fun stuff (like needles).

Anyway, we're here for another 48 hours (at least) until the blood cultures are negative, and we're making the most of our stay. We've done all the fun things Dominic wanted to do, plus a few more - going to see the big fish tank on the 7th floor (btw, he found Nemo and Dori) and driving through the halls in the Little Tykes car.

Thanks again for all the prayers and support.
God bless,
S

things are looking up

2010-11-09T10:37:00.001-08:00

After a long, rough week in the hospital, Dominic is doing much better now and he's finally enjoying his stay at UCSF. Since Friday, he's been driving through the hallways and pushing all the buttons for the automatic doors - something he's been wanting to do since he got here.

We're expecting to go home tomorrow, so we just want to say again, thank you for all your prayers and support.

God bless,

Scott, Adrienne, Dominic & Max

A long week, difficult week in the hospital!

2010-11-04T01:15:00.000-07:00

Hi Everyone,

Fortunately Dominic is doing better right now, but it's been a really rough week since we arrived for his gall bladder surgery on the 25th. For those of you who have not heard any details about Dominic's condition, the following is a brief summary of what he's been through the past 10 days. (He's still in the PICU at UCSF.)

Arrived at UCSF early Monday morning. Gall bladder surgery went well. Dominic had a fever and sore throat from the breathing tube (typical after operation) but otherwise doing OK.
Fever continued to rise to 104 - 105 range. Adrienne requested blood cultures to see if his central IV line (Broviac) was infected (since the surgical team preferred to sit tight due to the fact that post-operative fevers are so common]
Blood cultures were done and revealed Candida (a fungal/yeast infection) in his bloodstream. Or in other words, Dominic was "septic". This was our worst fear about having a central IV line since the two leading causes of death due to a central line are liver failure and sepsis.
On Wednesday, Dominic went into the operating room again to have his Broviac removed since that was the source of the blood infection. While in the O.R., docs put in two peripheral IV lines (one in hand, one in foot) for IV medications and nutrition.
Dominic was put on a heavy-duty anti-fungal medication called Amphotericin to combat the infection. People around the hospital refer to it as "Ampho-terrible" or "Shake-n-Bake" since it has some pretty bad side effects. Dominic's side effects included tremors, chills and delirium, and every time he tried to fall asleep he would jolt himself awake, resulting in pretty bad sleep deprivation.
On Thursday, Dominic seemed to be having some hallucinations (talking to people who were not there, nonsensical talking, glazed look in his eyes, etc.). Doctors were concerned that the fungal infection went to his brain causing fungal Meningitis. Needless to say, that shocked us, and due to the severity of this disease, we thought for sure we were going to lose him.
The doctors increased the dosage of the Ampho-terrible (same drug is used to fight Meningitis - just higher dose). Somehow Dominic got a good night sleep that night, and the next day he was much more himself - no more hallucinations. That, plus the fact that he didn't have a stiff neck (typical symptom of Meningitis), led the doctors to rule out Meningitis. THANK GOD! (It looks like the strange behavior was the result of 4 days of high fevers plus sleep deprivation.)
Since the Broviac was removed and they statred the Ampho treatment, Dominic had to have blood cultures done every day to check for the fungus. By Friday, all the cultures were still negative, so it looked like he was finally turning the corner.
Unfortunately, without a central line, all his nutrients (TPN), meds, fluids, etc. were going in through the new IV lines, and his veins couldn't handle it - the veins gave out and we lost the IV lines. This meant getting stuck again (in addition to the daily blood cultures) for new IV lines. Not fun! It also meant no more TPN since his veins couldn't handle it.
Over the weekend, the high fevers were back accompanied by a nasty cough. We thought the cough was just a result of having a breathing tube in twice last week, or possibly a cold, but the cough continued to get worse through the weekend and into Monday. Dominic was also getting pretty weak due to lack of nutrition.
On Tuesday, the docs ordered a CT scan ("CAT scan") to check for infection elsewhere in the body. The scan showed clumps of the same fungal infection in his lungs. Arghhh! But, in light of the persistent fevers, they said that it's possible he was just unlucky enough to also have contracted a bacterial infection.
So, back on the anti-fungal meds (different one this time, not the Ampho-terrible) plus a broad-spectrum antibiotic to combat a potential bacterial infection (basically shooting in the dark).
Most of the doctors still lean towards the fungus being the culprit so they may end up pulling the antibiotic out of concern that it will kill the good bacteria needed to fight any possible remaining fungus. Also, now that the blood infection has cleared up, they put in another PICC line (same as what he had before the Broviac). Now he can have his TPN again. Yeah!
It's now Wednesday night, and Dominic has had a pretty good day. He was much more energetic today - sitting up in bed playing with his toys - and now he's fast asleep. Which is what I need to do now.

So that's the past week in Dominic's life. I know Dominic misses all his family and friends, and his little brother Max (a lot!), and I know he's ready to be out of the hospital, so we're just hoping that his infections will clear up quickly and we can go home soon.

Thanks again for all your prayers and support. We truly could not get through this without it.

God bless.

Scott, Adrienne, Dominic & Max

Dominic's gall-bladder surgery

2010-10-25T15:03:00.000-07:00

Hi Everyone,

Just wanted to give you the update on Dominic after his gall-bladder surgery this morning.

The surgery went as well as could be expected. The doctors were able to remove the gall bladder laparoscopically (least invasive), so we're hopeful for a quick recovery. Unfortunately, Dominic is feeling pretty awful right now. His throat is sore from the intubation (breathing tube), and he has a fever as a result of the surgery (typical response of the body when surgery takes place). His abdomen also hurts from the incisions, so he's not very happy right now, but hopefully he'll turn around in the next 24 hours.

Thanks again for all your prayers and support. We'll keep you posted.

God bless,

Scott

"Crank Dat" and eat a banana

2010-09-19T21:20:00.000-07:00

On the lighter side...

Surgery went well!

2010-09-17T11:41:00.001-07:00

Thanks for all your prayers. The surgery was "perfect" according to the doctors.

Unfortunately, they also said that Dominic's gall bladder will have to come out, so we're looking at another surgery in about a month. But for now we're just thankful that things went well today.

Thanks again.

A more technical description of gallstones

2010-09-17T08:00:00.000-07:00

The diagram below shows the biliary tract and all its components. Dominic's surgery involved making a small cut in the sphincter of Oddi (called a sphincterotomy) to allow the trapped gallstone to pass. This will hopefully allow any future stones to pass without blocking the common bile duct, which could lead to a number of complications.

Unfortunately there are many more stones in his gall bladder, and Dominic is likely to continue developing gallstones due to his TPN, so the doctors have recommended removal of his gall bladder to reduce the chances of this happening again. Even with the gall bladder removed, stones can develop anywhere in the biliary tract (shown in the diagram as green dots), but the chances are significantly less - we're going to go with that option.

Dominic explains gall stones

2010-09-16T23:00:00.000-07:00

The day before his surgery, Dominic explains to Adrienne how the ERCP will remove his gall stones.

Dominic is in the hospital again

2010-09-16T22:00:00.000-07:00

The following is an email sent by Adrienne earlier this week.

Hi everyone,

For those of you who are just hearing about this for the first time, Dominic ended up in the ER on Sunday due to severe abdominal pain. To make a long story short, it seems that he had passed at least one gall stone and has plenty more in his gall bladder (all due to being on TPN). Yesterday, most of the doctors appeared certain that his gall bladder was going to have to come out (and that they were just waiting for the surgical team to weigh in). Today there was a lot of deliberation about the best course of action but we now have a plan in place.

Because Dominic's medical history is "complicated" nobody here is eager to have him go into surgery. What they've decided to do for now is to do what is called an ERCP (endoscopic retrograde cholangiopancreatography). As of now, the procedure is scheduled for 8:00 on Friday morning. Needless to say, prayers are much needed and appreciated.

Thanks for all of your love and support. We're so very grateful!

Love,

Adrienne

While the ERCP is a relatively non-invasive procedure, Dominic will be under general anesthesia which has a tendency to slow his already-slow gut. So, we welcome all your thoughts and prayers for our little guy. This is alot more than a 4-year-old should have to endure, but with all the love and support from all our family and friends, he's been handling this like a champ.

Thanks again.

God bless,

Scott

Happy Birthday, Dominic!

2010-09-06T10:00:00.000-07:00

summer with the boys

2010-08-07T10:06:00.001-07:00

Merry Christmas!

2009-12-25T08:00:00.000-08:00

Dominic is doing fine

2009-12-24T11:00:00.000-08:00

....

Well, the procedure which should have lasted about 30 minutes went for about 90 minutes, which unfortunately means Dominic received alot of anesthesia. According to the doctor who inserted the tube, it was "super, super, super hard" to get the guide wire through the pyloric valve. That didn't come as a surprise considering the previous times the GJ was placed, but we were hoping for something quicker. Anyway, despite the large dose of anesthesia he received, Dominic is doing great. He's not showing any signs of a more sluggish bowel (just the usual sluggish bowel), so we're grateful for that.

Thank you all for your continued prayers and support. We really appreciate it.

- The Segerbloms

another new G-J tube

2009-12-23T14:56:00.000-08:00

Hi All,

Just wanted to let you know that Dominic is in getting yet another G-J tube right now (I'm writing from the waiting room at UCSF). He had his last one placed on October 23rd, but unfortunately it worked its way out of his intestine and was coiled up in his stomach after about 10 days (that's the downside of a three-year-old boy who loves to pick at his 'button'). We then replaced the tube at home with a temporary G-tube until we could get his new G-J today.

The procedure itself is non-invasive (no cutting involved) and pretty simple: the doctors place a guide wire through his pyloric valve at the bottom of the stomach, then thread the new tube over the wire and into the small intestine - a procedure that typically would take less than 30 minutes under sedation. Unfortunately, Dominic's pyloric valve tends to spasm making it difficult to get the wire in, which results in a longer procedure. Because of this, the doctors require Dominic to have general anesthesia vs. sedation, which slows his gut down even more than usual, further exacerbating the problems with his bowels. So we're hoping for a quick procedure with the minimal amount of anesthesia. We'll update the blog again later with the results.

God bless,

Scott

proud owner of a new Broviac!

2009-12-12T11:57:00.000-08:00

It's Saturday morning after the Broviac surgery, and Dominic is doing great! The procedure went well yesterday, and Dominic was showing all the right signs of recovery (specifically bowel sounds), so the docs sent us home last night. We were happy to be at home instead of in the hospital, not only for a good night sleep, but also to avoid catching any bugs.

Dominic was in a great mood last night and full of energy, as if the surgery and anesthesia never happened, so much so that we actually had to calm him down to give time to heal from the surgery. Needless to say, we're thrilled with the way everything went. The doctors and nurses were all so kind and helpful, and they really put our minds at ease regarding the surgery. They even gave Dominic some "happy juice" prior to anesthesia, which made him quite the entertainer as he was getting wheeled off to the O.R.

In post-op, Dominic got a special present from the doctors & nurses (really from Mommy & Daddy, but don't tell him that) for being such a brave patient. He got his very own game of "Hungry Hungry Hippo". When he saw the wrapped gift box he said,"Woooooooow!" He was so excited. It's this kind of thing that gives him a positive association with the hospital, so he was really excited and proud to have his new Broviac.

So we want to say thank you for all of your prayers for Dominic and our family. We continue to pray for a speedy recovery and freedom from complications or infection.

God bless,
The Segerblom Family

replacing the PICC line

2009-12-09T21:11:00.000-08:00

Hi Everyone, time for another update.

It's been 21 months since Dominic first went on IV nutrition - the same time that he also got his G-tube placed (March 2008). The line that was put in then is called a PICC line (peripherally inserted central catheter), and is typically used as a temporary line for IV nutrition (3-4 months). We've been lucky to have ours this long, but finally Dominic has outgrown it (line is too small and too short for him now).

On Friday, Dominic will undergo surgery to have a new central line placed called a Broviac. A Broviac is more permanent than a PICC line, and is supposedly better defense against infection or accidentally being pulled out, so we're happy to have this new option. However, the down side is the need for surgery and general anesthesia to insert the Broviac. Dominic already has a slow gut, and anesthesia tends to slow it even more. He hasn't fully recovered since his last surgery on October 23rd (G-J tube placement), so we're concerned the anesthesia will further exacerbate the problem. Your prayers are welcome in this area.

All that being said, we're grateful for the excellent medical care Dominic receives, and the new record he set at UCSF for longest in-dwelling PICC line. Kudos to Adrienne and our home-care nurse, Armand, who have taken such good care of his line.

Check back after Friday for progress on the new Broviac.

Peace,

Scott

Prokopets Studio

2009-12-02T21:38:00.000-08:00

Here are a few more 'sneak peek' pictures from our family photo shoot in October. Click the link to visit the Prokopet Studio blog.

Thank you again, Vitaliy and Candace! The photos are great! We look forward to seeing you again soon.

God bless,
Scott, Adrienne, Dominic & Max

Happy Halloween!

2009-11-01T18:04:00.000-08:00

Happy Birthday, Max!

2009-10-27T20:00:00.000-07:00

A little overdue, but worth posting anyway.

family photo shoot

2009-10-21T23:25:00.000-07:00

Last Friday we were the lucky recipients of a "Family Session Giveaway" from a very talented local photographer and his wife, Vitaliy & Candace Prokopets. The two photos below are a "sneak peek" of their work, which we hope to see more of soon, and here's a link to their blog entry explaining the "Giveaway".

Thank you Vitaliy and Candace! We are very grateful for your generosity, and we really enjoyed spending the afternoon with you on Friday. And thank you Jen for nominating us for this special gift.

God bless,
Scott, Adrienne, Dominic & Max

long overdue

2009-10-19T23:16:00.001-07:00

After a long time without posting, here are a few photo albums to update you on the boys. It's been a good summer, and we're all doing well.
Love, The Segerbloms

June 2009

July 2009

August 2009

September 2009

October 2009

Mad Max

2009-05-03T11:01:00.000-07:00

Happy Easter!

2009-04-21T20:03:00.000-07:00

Happy Easter everyone!

Just a quick update to let you know we're all doing well.

Today marks 11 weeks without Dominic getting sick!! He's had a few trips to the hospital since November, but that was due to the cold season, so we're hopeful that we're through the worst of it for awhile.

Max is getting pretty big now. He's been crawling for several weeks, and he's about to start walking any day now. Running is probably more accurate - he's is full of energy and constantly on the move.

Adrienne and I are doing pretty well. We just celebrated our 4-year anniversary, and life is really enjoyable with our two little boys.

We hope you're all doing well. Below are some photos from our Easter celebration. Enjoy!

Mugshots

2009-04-03T19:07:00.000-07:00

Dominic is learning how to use a camera...

Inspire.com

2009-03-11T20:21:00.000-07:00

A few weeks ago, Adrienne found a website called Inspire.com that has turned out to be an incredible resource for us. It's an online community website (like Facebook) for people with health conditions who want to connect with other people with similar issues. Before we found this site, we never expected to meet others with Dominic's rare disease, but once we set up our account we were able to talk with lots of people with pseudo-obstruction, PICC lines, TPN, G-J-tubes, etc. They've provided lots of helpful tips for Dominic's care as well as sharing their own stories.

We're sharing this with you in case you know of anyone in need of support with their health issues, whatever it may be. The website has a discussion group for just about everything.

We hope you're well.
Peace,
Scott, Adrienne, Dominic & Max

bubbles!!

2009-02-25T01:18:00.000-08:00

Below are some photos of Dominic playing with bubbles the other night in the rain. Because the ground was wet, the bubbles accumulated on the ground instead of popping. They also accumulated on his raincoat for the same reason. Enjoy!

PS You can click on the photos above to see larger images in the online photo album.

Merry Christmas & Happy New Year!

2009-01-01T13:00:00.000-08:00

It's been an eventful year for us in 2008, full of lows and highs, trials and joys - from Dominic's ongoing health issues, to the arrival of our newest family member, Max. Despite the overwhelming difficulties we faced with Dominic's daily medical care and sleepless nights with our newborn, we remain hopeful and grateful for all the blessings we have received - mainly from the love and support from all of you. We couldn't have done it without you.

We wish you peace and joy during this holy season, and abundant blessings in 2009.
God bless,
the Segerblom Family

Ps. Quick update on the previous post:
After 3 days in the hospital, we were released again on Monday night. It turns out that the fever Dominic had last week was not due to a line infection after all, but probably a side-effect of the antibiotics he received to treat a possible UTI (which he in fact didn't have).
The doctors didn't want to take any chances with a line infection (which we're grateful for), so they held us for 72 hours while waiting for the results of the blood and urine cultures. Meanwhile, they gave him additional antibiotics (different from last week) to combat anything that might be there. The cultures came back negative, but ironically, our hospital stay resulted in Dominic picking up another cold. He also developed a nasty diaper rash due to the side-effects of the antibiotics (diarrhea).
Thankfully, the rash is getting better, and he seems to be dealing with the cold OK, so we're hopeful that this doesn't result in yet another hospital stay.
Thanks again for all your prayers and support.

Dominic's Christmas Adventures

2008-12-27T07:00:00.000-08:00

Hi Family and Friends,

Just wanted to let you know that Dominic is in the hospital again. He went in to UCSF on Tuesday for vomiting, dehydration, and possible infection, and then we were discharged on Christmas Eve at 4:30 just in time to rush home, change, and make it to 6:00 mass (ironically, one of the very few occasions we've been on time for mass in ages).

Dominic had a great time that night and on Christmas Day. When we put him to bed, however, we noticed he had a low grade fever. His discharge papers read that we were to call the doctor if the fever was above 101.4 so I did so in the middle of the night when his temperature rose. Anyway, long story short, Scott and our friend Dolores brought him in tonight to get blood drawn since one of his doctors said that any fever he ever gets above 100.4 he needs to get blood cultures done. The main concern is a line infection which could be devastating for Dominic if it's not treated early and properly. So he's there overnight and possibly tomorrow night to make sure he doesn't have an infection. It's possible that he just had a fever induced by his IV antibiotic he was sent home on earlier this week.

So please forgive us if when we can't get back to you via phone or email as quickly as we'd like. Scott and I are really, really wiped out lately and are trying to get sleep whenever we can. Too many months on top of too many months of too little sleep is taking it's toll.

Nonetheless, we've actually had some really great times celebrating Christ's birthday with Dominic, Max and our family. Dominic entertains us all day long (e.g., see attached photo from Christmas morning) and is a ridiculously happy kid, especially in light of his little challenges. He is so funny and joyful that we know we're so beyond blessed to have the privilege to love this little guy. We look forward to putting up lots of great photos, videos and updates on the blog as soon as we get a chance.

Big thanks to each of you for ALL your love and support. You're amazing. We hope you all had a fantastic Christmas Day!

Lots of love,

Adrienne

In loving memory of Carmel Romanski (Adrienne's mom)

2008-12-13T15:33:00.000-08:00

December 13, 2005
May she rest in peace with our Lord, Jesus Christ.

Halloween

2008-11-04T12:49:00.000-08:00

Here are some pictures of the boys at Halloween.
Plus all of the other photos in our online album.

Dominic's first REAL haircut

2008-11-03T23:58:00.000-08:00

more dancing

2008-10-17T16:40:00.001-07:00

Dominic dances to the Doodlebops.

Danke Schoen

2008-08-27T22:09:00.000-07:00

Dominic flying solo

2008-07-29T23:57:00.000-07:00

Dominic goes down the slide for the first time by himself!

Max at four weeks

2008-07-28T23:21:00.000-07:00

Hi

2008-07-01T00:08:00.001-07:00

It's been 3-1/2 weeks since I came home from Columbus with my Daddy, and so far it's been great. I went 18 days without getting sick, which made Mommy really happy, and the two times I did throw up was because my new medicine was yukky! They didn't make me take it again, and so far I haven't gotten sick for 5 whole days.

Mommy and Daddy have alot more to do now getting me ready for night-night. They have to give me my TPN. They have to catheterize me. They also have to hook me up to a pump that feeds me through the night in my new G-J tube. It's alot for them to do, so they're pretty tired, but I think they're still happy. I feel better now, and I know they like that.

Here is a picture of me crawling through my new tunnel. It was fun.

Today I got to meet my baby brother Max for the first time. He was in Mommy's tummy for a long time, but today Daddy was holding him. I don't think they're going to put him back in Mommy's tummy, so I'll have to get used to him.

Max looks a little bit like me, and he was about the same size as me when I was born a long time ago (8lbs-4oz and 20.5" long). The man with the white coat who took Max out of Mommy's tummy said that Max has a big head. But I don't think it's as big as mine. I'm pretty smart.

Here are some pictures of my new baby brother. I like him.

Here are some more pictures of my brother Max, and Mommy and Daddy, and my aunties, and Pa Pa, and Tu Tu, and some other friends of Mommy and Daddy.

Columbus Children's Hospital

2008-06-11T21:08:00.000-07:00

In the first week of June, Scott and Dominic went to Columbus, OH to the Nationwide Children's Hospital. (My doctors recommended against going since I was only 4 weeks away from my due date.) Their gastroenterology division is one of the top ten in the country, and one of their doctors, Carlo DiLorenzo is one of the nation's (if not the world’s) leading experts in pseudo-obstruction.

Dominic underwent a series of tests called manometry where the pressures and patterns in his small intestine and colon were measured to determine the relative functioning of each. Unfortunately his test results confirmed what we had assumed, that the damage to his affected organs is muscular in nature (called hollow visceral myopathy) and that what he has constitutes a “severe abnormality” which is manifest by virtually no motility in his intestines. (We already knew this to be the case with his stomach.) This means that he has almost no chance of receiving his daily nutrition from regular food, which is particularly unfortunate because it necessitates daily TPN (or Total Parenteral Nutrition) which is toxic to his liver. (The liver has to work overtime to process anything introduced directly into the veins, and over time it will likely fail - a leading cause of mortality in patients with pseudo-obstruction.)

In addition to the testing, the doctors also replaced Dominic's G-tube with a G-J-tube. The new tube contains two ports instead of one: one goes into his stomach as before, and the other goes into the first part of his small intestine, the jejunum (hence the 'J'). The G-J-tube was placed in the same hole as the G-tube, so no new hole had to be made. The purpose of the J-tube is to feed formula directly into Dominic’s small intestine - bypassing the stomach – in the hopes that some section of bowel will absorb the nutrients. Dr. DiLorenzo said that if Dominic can get 1/3 of his calories through his J-tube then we can decrease his TPN, which will help protect his liver.

When we asked what the chances are that Dominic can handle 1/3 of his nutrition this way the doctor said that, based on the test results alone, he would say “zero”. However, he also said that, based on Dominic’s history (i.e., previously being able to tolerate 3+ meals a day) and because there is no way to test all of the intestines via manometry, that there may be other parts of Dominic’s intestines that work better than others. At this point, of course, we’re just hoping that Dominic will tolerate his J-tube feedings so we don’t have to resort to any more drastic measures right now (e.g., an ileostomy or, worse yet, an intestinal and liver transplant).

Overall the trip to Columbus was as success. We now have actual data associated with Dominic’s bowel function to help the doctors determine the best course of action, and as a bonus, he came away with a brand spankin' new G-J-tube (which was likely our next step after the manometry, but we didn’t want to put him through the trauma of another procedure before we could get a true baseline on his gut function). Dominic also handled the discomforts of the whole trip like a champ – the airplane flights, the new environment and time change, and all the poking and prodding from the doctors and nurses. He’s our little trooper!

We couldn't have done this trip on our own, so we want to say 'thank you' to all of you who helped make this happen. A special 'thanks' to Dolores for taking the time to fly with Scott and Dominic on the trip out, and to Katherine for flying out mid-week in order to help on the flight back. Thank you so much! We really appreciate it.

Also, a big 'thanks' to all the teachers, students and parents at Picasso Preschool for all your support. This trip could not have happened without you.!

Finally, we thank all of you who have been praying for Dominic and for us. We know that only through the grace of God are we able to endure these trials, and we appreciate the grace we receive through your prayers. Thank you!

God bless,
the Segerblom Family

The $100,000 manometer.

Auntie Katherine and Dominic enjoying another
Signing Time video during the manometry testing..

Dominic is happy the test is over. Time to go play.

Hello fishy.

Going down.

Dominic and Dolo playing hoops.

visting Picasso

2008-05-24T23:31:00.000-07:00

Last Friday, Dominic, Adrienne, Scott and Auntie Nina visited Picasso Preschool in El Granada (Half Moon Bay). They went there to meet the teachers and students who, a month earlier, did a fundraiser on Dominic's behalf.

On April 16th, the kids and teachers walked 12 laps around the playground to help raise money for Dominic's medical expenses - specifically his upcoming trip to Columbus Children's Hospital for his manometry testing. Dominic had a great time meeting the kids and playing on the playground, and the kids seemed to enjoy meeting Dominic as well - especially playing 'follow the leader' and crawling like babies. Below are some of the photos from our visit.

Again, we want to say Thank You to Judy, Debbie and everyone at Picasso Preschool for all your support for Dominic's well being. We are truly grateful!

the latest news (in great detail)

2008-05-11T23:14:00.000-07:00

Dear family and friends,

Well, we know it’s been a while and thought it was high time to send out an update. (Caution: Some readers may find the information below to fall into the category of “Too Much Information”. J)

Dominic is still on his TPN (Total Parental Nutrition), thereby getting 100% of his nutritional needs intravenously. He has to be on it for 14 hours a day and so we hook him up in the evening and take him off in the morning. It has certainly made the nighttime routine more challenging since the TPN takes about a half hour to set up (i.e., inject the vitamins, prime the pump, sterilize the ports) and then, once he’s hooked up, we need to follow him wherever he goes because we have to carry his backpack that contains the TPN bag and machine pump. It makes for a challenging evening since this needs to happen around dinner time and Scott has usually just arrived home.

We’ve yet to be able to cut back at all on the TPN because Dominic is still vomiting a lot (i.e., every day to every other day). He drinks water, diluted juice and eats things that we think will dissolve easily (e.g., crackers, pieces of bread, ice cream) so we can take them out through the g-tube, if needed. If it were up to him he’d eat anything and everything. How ironic to have a toddler with such a great food repertoire who is allowed hardly anything to eat!

As far as the g-tube goes, the venting of air has gone a little better. (We attach an extension tube to his mic-key button in his stomach and attach a large syringe to the end of the tube where the air and/or liquid can come out.) He still gets distended pretty easily but at least we can give him a little relief when needed.

The catheterizing has gotten a bit more tricky for us as well. When he first came home from the hospital we had to wake up twice a night, put him in his high chair and cath him because he’s getting fluids throughout the night with his TPN (previously we didn’t have to cath him during the night because he wasn’t taking in any liquids). This was brutal for Scott and me (and certainly annoying for Dominic). Fortunately, our urology nurse said we can put and leave a catheter in overnight. Now we create this McGyver-esque contraption where we insert the catheter, thread it through a hole we make in a diaper and then tape the end of the catheter to the outside of that diaper at the hole. Then, we put another diaper on for the catheter to drain into. All this adds to the length of an already long bedtime routine.

Nighttime is probably one of the most difficult times of day for us. We still need to get up once in the middle of the night to change Dominic’s outer diaper because it’s so soaked after 5 or 6 hours of being on the TPN. We also vent him and give him one of his medications (pro motility agent) at this time (since he’s supposed to have it 4 times a day). A couple of times a week Dominic vomits during the night or he poops and, if it’s messy enough, we’ll have to take the catheter out and re-cath him. Between listening for the gagging noises over the monitor (Dominic will sleep right through his vomiting), watching the video monitor to make sure the TPN tubing isn’t wrapped around his neck (which is has been on a number of occasions) and the time it takes to fall back asleep (I’m up for one and a half to two hours each night), all make the nighttime quite challenging.

NONETHELESS, Dominic is a very happy kid. In spite of all the nausea and nuisances he has to deal with he just likes to have fun every day like any little guy. He loves to look at books, play with playdough, go to the park, and, most of all, hang out with his mommy and daddy. He still goes to his Auntie Nina’s and Uncle Frank’s house once or twice a week where he is always thrilled be and is, of course, loved to pieces there. He really enjoys using sign language and when he doesn’t know the sign for something he’ll try to make one up on his own. He’s chattering a lot right now and says about 20 words, though only about 5 or 10 consistently. He’s really affectionate and mommy is trying to enjoy this while it lasts. The joy he brings us is so much more than the challenges that come along with his care that we are just thrilled to have him here with us.

Speaking of challenges, there’s a more recent one that has made life even a bit more complicated lately. I’ve been dealing with some sciatica discomfort and intermittent pain (probably from being pregnant) which has increased over the last couple of months. Well, now the pain is excruciating and I’ve essentially been bedridden for about a week and a half now. Poor Scott now has to do nearly everything when he’s home. I’ve tried to do as much via phone and Internet (e.g., work, order medical supplies, coordinate Dominic’s care with doctors, etc.) but it pales in comparison to what Scott has to deal with daily. That said, he’s handling it just like the fantastic father and husband that he is. When Scott goes to work, and since I basically can’t be alone with Dominic there needs to be someone else here at home with us at all times (except during Dominic’s naps). We can’t even begin to tell you how much we help we’ve gotten from family (especially my sisters, aunts, and cousin) and our friends during this most recent craziness. They’ve been amazing and we’re totally overwhelmed by the generosity we’ve received.

All the care that Dominic is getting, and will be getting wouldn’t be possible without all of you. From the prayers, phone calls, and emails to the home help, meals and the incredible financial support for Dominic’s medical costs, we can’t even begin to tell you how grateful we are. We are beyond touched by all of this and are consistently amazed at everyone’s generosity.

Thank you all again for your love and support for our family.
God bless,
Adrienne

P.s. Here’s some additional information about Dominic’s medical situation that we wanted to share.

On June 2nd, Scott and Dominic will be flying out to Ohio to get some testing done at Columbus Children’s Hospital where one of the top GI motility doctors practices (Dr. Carlo DiLorenzo). The testing (manometry – which measures the pressure and patterns inside the intestines) should give us a much better idea of the extent of the disease and best options for treatment. Unfortunately, I can’t be there because I can’t fly that late into my pregnancy (I’ll be at 36 weeks). Apparently, I’m at risk for a fatal blood clot, among other things, if I do. Thank God, one of our good friends will be flying out with Scott and Dominic to help out for the first few days and then one of my sisters will come out for the last few to fly back with Scott and Dominic (With all of Dominic's medical needs right now, it's just too much for Scott to do by myself while traveling). We hope and pray that these test will give us a good direction for Dominic's treatment.

a few new photos of Dominic

2008-04-27T22:56:00.000-07:00

Hi All,

It's been awhile since the last update, and unfortunately it's too late now to go into details, but we wanted to share the latest photos of Dominic. Click on the link in the right column to go the the online photo album.

In short, Dominic is doing pretty well. We still have a daily challenge with his medical care, and both of us are pretty sleep deprived from his nighttime routine, but we're hanging in there. We'll give a full update soon.

God bless,
Scott & Adrienne

home after a month

2008-03-28T22:43:00.000-07:00

Hi Family and Friends,

So after 29 days at the hospital, we're finally home. We were discharged from the hospital Thursday afternoon, and it sure is nice to be back in our house.

First we want to say a heartfelt thanks to everyone who helped us out during this trying time - all the visits in the hospital, all the meals, help with the hospital expenses, parking fees and missed work, help with the move, help with cleaning the old apartment, help with cleaning the new house, help unpacking boxes and organizing, and on and on and on... We can truly say that we couldn't have done this without all your support.
Most of all, we appreciate your continued prayers for our family. It is through the grace of God that we were able to remain hopeful and grateful through all this, and it is because of God's grace that we have Dominic with us in the first place. Thank you for your prayers.

Now that we're home, life has become a little easier since we don't have to drive back and forth to the San Francisco to the hospital, but it's not all smooth sailing. Dominic's stomach and intestines are still not functioning, so he's on TPN each night for nutrition. He still loves his favorite foods - or anything mom and dad are eating - so it's quite a challenge to prevent him from eating throughout the day. And when we do give him his bottle or a few crackers, we have to drain it from his tummy within a few hours or he will throw it all up. Not fun!

Also, since he still has the bladder issues, we still need to catheterize him every 3-4 hours. Previously we would cath him during the day and let him sleep through the night - when he wasn't taking in any fluids. But now that his TPN runs throughout the night (so he can be unplugged during the day) we have to wake him up 2 or 3 times at night to cath. Needless to say, none of us are getting much sleep. We hope that this will be a short term situation and his gut function will return to normal soon.

home for Easter...and then back to the hospital

2008-03-26T19:37:00.000-07:00

Hi Family and Friends,

We're happy to report that Dominic came home in time for Easter. We were discharged Saturday afternoon - just in time to spend Easter Sunday at our new home. (For those of you who didn't know, we've also been in the process of moving for the past 3 weeks while all of this has been going on. We finally got settled into our new place with alot of help from some family and great friends. We can't thank you enough!!).

The doctor's released us with Dominic's PICC line still in place so he can receive TPN (Total Parenteral Nutrition) until his stomach and intestines start working again. A home-nurse came to the house Saturday afternoon to train us in the TPN, and Saturday night went well. Unfortunately Sunday night didn't go quite as well, and Dominic got sick again and had to be taken back to UCSF Monday morning.

So, we're back at the hospital for the third time since this all started. Fortunately we were able to get back into the same hospital room where Dominic is familiar with his surroundings and we know all the nurses. The doctors say that we should be coming home tomorrow, and hopefully we'll be able to get back to a somewhat regular life again soon.

Thanks for all your prayers and support.
Scott & Adrienne

the latest on Dominic

2008-03-19T12:25:00.000-07:00

Hi everyone,

I apologize that it's been a while since I've sent out an update.

Dominic is still in the hospital at UCSF. It has been a painstakingly slow recovery for him. The gist of it is that his GI tract is starting to "wake up" a bit, if you will, and things have started to improve over this past week. He is no longer having fevers and, as of Sunday, is starting to eat some pureed foods. He has been getting his full supply of daily calories from TPN (total parenteral nutrition) which goes through his IV into a large vein near his heart. About 6 days ago he started to walk a bit and, though he doesn't have his full energy back, by any means, he's doing well.

The plan right now is for Scott and I to learn how to administer the TPN so that we can go home. Dominic will have to be on the IV nutrition for 14-18 hours each day to start and will be taken off of it when he can handle an oral diet more efficiently. He is also anemic and so that needs to be resolved to some degree before we're released as well.

As far as the mic-key tube goes, the jury is still out as to it's efficacy. It's kind of hit or miss in terms of us being able to get air out but we've tried some tricks in the last few days that seem to help and so we're hopeful that things will improve as time goes on. Personally, my big fear is that his two surgeries made his gastric emptying problem worse (a possibility I discovered via a number of research articles) and that his ability to digest food and liquid has been compromised further. Time will tell.

Thank you so very, very much for all of your support. We're so grateful for every bit of it and for each of you.

God bless,

Adrienne, Scott and Dominic

Ps. We've also updated our online album with few new photos from the hospital. click here.

rewind to Feb 28 - Dominic's g-tube surgery

2008-03-19T12:05:00.000-07:00

The following posts were originally sent out as emails by Adrienne. We've consolidated them into one post (in chronological order) to give a timeline of events over the past few weeks.

Wed, Feb 27, 2008 at 1:30 AM
Hi family and friends,

Scott and I are happy to report that we had our level 2 ultrasound and now know that there's a seemingly very healthy baby BOY on the way! We're thrilled and want to thank all of you, once again, for your thoughts and prayers.

Also, Dominic's rescheduled g-tube placement is set for tomorrow, February 28th at 10:30am. Dominic has to fast from solids most of the day today and then no liquids after late afternoon. He'll be put under general anesthesia, will be intubated and then they'll go in endoscopically down into the stomach with a wire and a light to find the right place in his stomach to put the apparatus (and then connect to the outside). We're nervous, of course, but really looking forward to Dominic getting at least some relief from his bloating, nausea and vomiting.

We hope you're all doing well and will try to respond to your emails as soon as we can. Thanks again for all your support.

Love,

Adrienne and Scott

p.s. - I've been running into some problems with my email address book and discovered that there are quite a few people whose email addresses, for whatever reason, were no longer in my address book. I'm so sorry to the people who are just hearing about all this news for the first time. I'll pay closer attention with future emails!

Thu, Feb 28, 2008 at 3:22 PM
Hi family and friends,

Thank you for your thoughts and prayers. Dominic's surgery went well this morning, and he's sound asleep in his hospital bed right now after all the day's excitement. We'll most likely be here for another day or two so the doctors can monitor his recovery, but so far everything looks great.

Thanks again for your continued support. It means so much to us.

God bless,
Adrienne and Scott

Sat, Mar 1, 2008
(This email was sent by our friend Leilani)

Friends,

Yesterday afternoon, Dominic was discharged from UCSF after a successful surgery and seemed to be doing well. However, last night the Segerbloms had to rush Dominic to the E.R. He was vomiting profusely, had a very distended stomach, and a fever. He was also swollen to the point where the Segers were having trouble getting his catheter in (I believe they are still having trouble with this.) He is stabalized now and is at the Moffet hospital at UCSF, but is very uncomfortable. The doctors said he has air trapped in his intestines, and has most likely contracted an infection from the surgery.

Please pray for the Segers and especially for little Dominic who is suffering quite a bit. Pray that they are able to treat this infection rapidly and that he may recover fully from this surgery.

Thank you,
Leilani

Sun, Mar 2, 2008 at 2:18 PM
Hi again, family and friends,

Our good friend, Leilani, sent out an email to some friends from our church yesterday but this is the first chance Scott and I have had to send an update out ourselves to the rest of our friends and family (since Leilani didn't have everyone's contact information). We apologize for some repeat information to those who are getting it as well as for the extra details that many of you probably don't really need.

Dominic went home from the hospital on Friday afternoon even though his belly was fairly distended and we were not able to extract any air from his stomach through his new tube. Later in the evening he developed a fever and began vomiting profusely. We rushed to the ER at UCSF.

He got an IV put in to rehydrate him and was started on anti-biotics. X-rays that were done came back showing that there was air and fluid in his abdomen surrounding his intestines. The surgeon recommended emergency surgery to find out what was going and to correct any problems. He wasn't sure whether the tube was leaking on the inside or if part of his intestine was perforated and needed to be stitched up and possibly removed.

The surgery went well and the doctor was able to remove what fluid and air he saw surrounding the intestines and, thank God, he didn't find any perforation of the intestine (which can be associated with a high mortality rate). It seems as if there was a leak between the stomach and abdominal wall where Dominic's tube was placed and that the contents that leaked from his stomach got out and caused an infection. (The doctor ended up replacing Dominic's "PEG" with a "Mic-key" tube which will hold things in place better.) The fluid that leaked also causes the intestines to stop working and so Dominic's intestines, which already don't work well, are very distended and filled up. The pain medications that he's on also cause his intestines to slow down. As a result, everything is backing up into his stomach and will continue to do so until Dominic's bowels start to move.

Bottom line: Dominic is currently fighting an infection, has a fever, is definitely in some pain (though mostly discomfort, I think), can't eat or drink anything and, according to the doctors will be here for at least a week. That said, we are beyond our relief over the second surgery going well and are hopeful that things will straighten out soon. We're really looking forward to seeing Dominic running around and just being the very happy kid that he usually is.

We can't thank you enough for all of your prayers and support. It's so comforting to have so many people holding us up!

Much love,

Adrienne (and Scott and Dominic)

Tue, Mar 11, 2008
Hi everybody,

We just wanted to let you know that we're still at UCSF and that Dominic's progress is mixed. He's looking a bit better as of yesterday in that the nutrients are making him look less emaciated. His eyes are less sunken in which makes a big difference alone. He's also more interactive and is starting to "chat" occasionally and is more interested in playing with objects and looking at books than he has since he got here.

Nonetheless, he still has fevers off an on each day and the doctors aren't sure why. He had an ultrasound done today to rule out an abscess (pocket of fluid) in his abdomen and they didn't see one. They decided this evening to discontinue his antibiotics to see if those are what are causing his fevers (which they can sometimes do). Not sure what they have planned yet if that doesn't work.

He also isn't really able to tolerate any fluids well when taken orally. He gets distended and nauseous fairly easily and we end up having to drain his stomach through his tube. He still has a lot of bile that is ending up in his stomach (which is probably the biggest cause of the nausea) and, according to the doctors, it's not moving because his intestines are still "asleep" as a result of his surgeries. They are not surprised by this and just say it will take more time. We're just hoping they're right.

We'll keep you posted as best we can. It's hard for me to get to the hospital computer sometimes due to the restricted hours (especially on weekends) and because Dominic wants me to hold him most of the time. As I said, I'll do my best.

Thanks so much to all of you for everything you do. We're beyond grateful.

Love,

Adrienne, Scott, and Dominic

Merry Christmas! and Happy New Year!

2008-01-05T14:44:00.001-08:00

For the latest photos of our little guy, please click here.

new photos of Dominic

2007-05-04T18:28:00.000-07:00

Hi everyone!

It's been awhile since we last updated this blog, but you how it goes...we've been pretty busy the past few months.

We just wanted to take a moment to say 'HI' and to give you a link to the latest photos of our little guy. http://picasaweb.google.com/segerblom/Dominic

We hope you are well.
God bless,

the Segerblom family

Merry Christmas!!

2006-12-31T10:53:00.000-08:00

7 weeks and doing fine

2006-10-23T21:34:00.000-07:00

Hi everyone,

It's been a couple of weeks since the last update, and we're happy to report that Dominic is doing well. As you can see, Dominic is quickly putting on the weight, and he's developing into quite the character (last photo). We've had a lot of ups and downs with the catheterizing - sometimes it takes up to 45 minutes just to get the thing in, not to mention the time to change him, feed him, burp him, etc. Needless to say, our nights our a little less than restful. Right now, we're in a the up-swing, and so things are going well.
We haven't been able to post photos on the blog for awhile due to technical problems, but tonight we were able to get these three up for your viewing pleasure. It might be awhile before we can post again, but we just wanted to take the opportunity to say hello and to thank you again for all your prayers and support.

Love,
Scott, Adrienne and Dominic

Aw, Mom!

Ps. To all the people who have either called or emailed, we're so sorry we haven't been in touch for updates and visits. It's been crazy-busy lately, and we're just starting to get settled in with our routines. We'll be in touch as soon as we can; we haven't forgotten about you.

Dominic, Unplugged!

2006-09-23T18:21:00.000-07:00

Hi Everyone,

Just wanted to let you know that Dominic is home!!! He was freed from all his wires, tubes and plugs on Friday, and he made his first car-ride home with us at 3 in the afternoon. Although the stay at UCSF was nice, due to the wonderful people who cared for Dominic, it's great to finally have him home with us.

Dominic's health is also looking good. His fever a few days ago was the result of a urinary tract infection (as we had feared) but fortunately it didn't affect him any more than it would any other baby. Since then his fever broke, and he's doing much better. Thank you all for your prayers.

Overall, his health is good. The only medical concern we have right now is to keep his bladder empty so it doesn’t put any pressure on the kidneys. He’s been peeing on his own, about the same amount as a normal baby his age, but with a bladder as large as his, he’s not emptying it all the way. Which means we (mom and dad) have to do it for him via catheter to avoid another infection and further complications.

Every 3-4 hours we have to insert the catheter, drain his bladder, and remove the catheter. Needless to say, it’s not much fun for either him or us, and he definitely lets us know he doesn’t like it. This may be something we have to do the rest of his life, but fortunately he should learn to do it on his own at age 4 or 5, and by then it will be completely normal to him – just like brushing his teeth.

So despite the not-so-typical difficulties we’re facing as new parents right now, we're so excited to have him home with us. We’re enjoying all the adorable goofy expressions he makes, as well as the accidental smiles, and we’re just grateful to have a healthy little boy – especially considering all the possible outcomes the doctors were considering during the pregnancy.

Again, we thank all of you for your prayers and support. We couldn't have made it through without you.

Thank you and God bless,
the Segerblom Family

Prayer request

2006-09-20T08:35:00.000-07:00

Hi Everyone,

Dominic is still in the ICU. We were hoping to bring him home earlier this week, but after a series of changes in his condition, the doctors have decided to keep him a little while longer. The latest development is that Dominic has come down with a fever. We’re not sure what the problem is, but with the condition of his bladder and kidneys, he is at higher risk for more serious problems. The doctors have done a series of tests (including a spinal tap), and we should know more tomorrow. We ask for your continued prayers for his healing.

Thank you and God bless,
Scott and Adrienne

Photos with Mommy (week 2 photos)

2006-09-15T13:32:00.000-07:00

Super-Nurse Chu-Hong Soo-Hoo (aka "Auntie Chu")

Our Little Monkey (week1 photos)

2006-09-13T11:06:00.000-07:00

Dominic is doing well!

2006-09-09T11:42:00.000-07:00

Hi Everybody!

Dominic is doing well. He’s had a few small bumps in the road since his delivery, but things are going pretty smoothly right now. We don’t have time to get into details because we want to get back up to the hospital (we were discharged yesterday), but we just wanted to take a moment to thank you all for your prayers and support. We’re not out of the woods yet, and we will know more next week about Dominic’s kidney functioning, but we’re extremely hopeful and grateful for every blessing so far!

Gratitude and love to all of you,

Adrienne, Scott and Dominic

P.s. A big ‘Thank You’ to our friend, Frank (Uncle Paco) for updating our blog and posting the photos while we were in the hospital. Frank was also the photographer, so all royalties should be sent directly to him :-)
We also thank Frank for initiating the Novena Prayer on Dominic’s behalf. It’s support like this that has strengthened our faith through this difficult journey. We actually thought the Novena would be emailed directly to our ‘Churchie’ friends rather than posted on the blog, but this gives us an opportunity to invite all who are interested to include the other children in the ICU in their prayer intentions. Dominic is probably the healthiest child in the ICU, and certainly the largest among all the ‘premies’, and they are all in need of prayers. We especially ask your prayers for Dominic’s ICU buddies, Vincent, Raphael and Tiner, as well as their families and all the doctors and nurses.

Join us for a Novena beginning Friday, September 8th

2006-09-07T21:42:00.000-07:00

Please join us in praying a Novena (9 day prayer) to Blessed Mother Teresa of Calcutta. It will begin, tomorrow, Friday September 8th on the feast day of the Birth of the Blessed Virgin Mary. It will culminate on Saturday, September 16th. Dominic still needs our prayers!

Link to Novena: http://www.motherteresacause.info/Novena.htm

Thank you,
Frank
(filling in for the Segerbloms during their hospital stay)

Dominic is here!

2006-09-07T12:31:00.000-07:00

Introducing...Dominic Bohan Segerblom
Born: September 6th, 2006 at 5:01pm
Weight: 8 lbs 10 oz (at 38 weeks!)
Length: 21 inches
APGAR Scores: 8 & 9
Cute Factor: high
His overall health is good and mom is doing well.
More details to follow soon.

Thank you again for all your prayers and support!
Scott, Adrienne, and Dominic

Click photos for larger images.

the home stretch

2006-08-29T20:20:00.000-07:00

Hi everyone,

Good news! Today’s ultrasound showed that Dominic is continuing to hold his own. He also passed his non-stress test again with flying colors, which means his movements and heart rate are looking good. His bladder is holding steady at around 240ml (the same for the past 10 days) and because the doctors think that his belly will squeeze through without trouble, coupled with the fact that he's still in a poor position for a bladder tap, there is no procedure schedule to drain it. His legs are also measuring normal right now (they've measured 2-4 weeks behind schedule in the last month), so his career as a professional dancer is still an option (thanks for your prayers, Hans). Also, his abdomen is only measuring at 40 weeks right now, which is about equal with his head, so it’s not quite as abnormal as one would think. The margin of error on the measurements if pretty significant, so maybe it's not even worth mentioning. Essentially, we won’t know the whole story about this, his bladder, his kidneys, or anything else until he’s delivered, but for now, we’re happy with the results.

The doctors have scheduled us for induced labor this coming Tuesday (Sept 5th), so we are on our way to the next phase of parenthood – very exciting! We’re also excited about the fact that Dominic most likely will be born on the memorial day of Mother Teresa who died nine years ago on Sept 5th. Mother Teresa has been a life-long hero for Adrienne, so we’re happy to share this special day in her memory.

Again, we thank you for your constant prayers and support. We believe that this adventure we’ve been on the past few months is evidence of the power of prayer. Thank you for yours!

God bless,
The Segerblom Family

Week 36 (going on 39)

2006-08-23T13:52:00.000-07:00

Hi All,

Dominic's bladder was about the same size as Friday (215ml), and he was still in the same position (back facing out), so the doctors didn't want to do a tap yesterday. In fact, they don't seem to be too worried about the bladder size at all (as long as it doesn't drastically increase in size).

In their meeting, the majority opinion (for the first time since this all started) was that the bladder will empty itself during delivery (e.g. the squeeze will make Dominic pee). The doctors also agreed that there's no reason to take him out early as they had been suggesting before, and they would like to leave him inside mama until week 38 or 39, or until he comes on his own.

So, it looks like we're again relieved (pun intended) of having to make any decisions right now, and that's a good thing. The next ultrasound will be Tuesday next week (nothing this Friday), so we'll update again then.

God bless,
the Segerblom Family

On the rise

2006-08-19T16:30:00.000-07:00

Hi friends and family,

As of Friday's ultrasound, it looks like Dominic’s bladder is on the rise again. It's back up to about 250ml, which is about double the size it was on Tuesday. We were given a lot of information by the doctors, all of which is a bit overwhelming, so we’re not quite sure what our options are at this point. We will know more after our Tuesday’s ultrasound and the doctor's weekly 'brain storming' meeting, but here are some of the ideas being considered.

test the amniotic fluid levels with an amniocentesis to check lung development
if lungs are weak, give Adrienne a steroid shot to strengthen the baby’s lungs, then drain the bladder, then deliver this week
if lungs are fine, either drain the bladder this week, then deliver; or keep him in for another week or two, then drain the bladder (if needed), then deliver
due to the baby’s position (head down and back facing out), a bladder tap is difficult to do and would require coming in from another angle to reach his bladder (not straight through Adrienne’s belly) – need to consider carefully
due to the size of Dominic’s head (which is measuring at 38+weeks), keeping him in longer would mean greater likelihood of cesarean section – need to consider carefully

On Tuesday, there may be a whole new set of factors to consider, but there’s nothing for us to do today. We put little Dominic in God’s hands and we continue to pray. Thank you for your continued prayers and support.

God bless,
The Segerblom Family

Ps. Today is Carmel Romanski’s birthday (Adrienne’s mom). We remember her today in a special way, and we pray that she rest in peace with her beloved Lord, Jesus Christ.

Week 35 - another good checkup

2006-08-15T22:46:00.000-07:00

Hi everyone,
Well, today was another good ultrasound. Dominic's bladder is holding at 125ml, and the amniotic fluid levels are looking better (lower than previously). As a result of this, Adrienne's belly is a little smaller, and she's feeling a little bit better - albeit completely exhausted. So, we continue to wait. We continue to pray. We continue to be grateful to all of you who are thinking about and praying for us.
God bless,
the Segerblom Family

Dominic surprised us again

2006-08-12T14:39:00.000-07:00

Hi all,

Well, Dominic has surprised us once again. We went in for our Friday ultrasound prepared for another bladder tap (based on Tuesday's results), and his bladder was down from 300ml to about 125ml - the first time we've seen a decrease in bladder size. So, needless to say, he didn't want another needle stuck in him, so he got busy pee'ing. That's my boy! This also means that we will probably not have to induce next week as we had been told (and as we told many of you), so he'll be staying in there for a little while longer - right where he should be.

Anyway, thanks again for all your prayers and support. We wouldn't be able to make it through this roller coaster ride without our community.

Until the next update, be well, and God bless,
Scott, Adrienne & Dominic

Week 34

2006-08-10T13:23:00.000-07:00

Hi again, everyone,

So here we are at 34 weeks (and three days)! We had an ultrasound and met with our doctor on Tuesday so we wanted to fill you all in on the latest.

Dominic’s bladder is on the rise. Last Friday it was around 200ml, and this past Tuesday it was near 300ml, so all the doctors are anticipating that it will continue to increase in volume as it did before.

So here’s the plan going ahead: according to Dr. Hopkins, once the bladder gets up into the 400ml range that they’ll want to go in and do another tap (vesicoscentesis). This could be at our next appointment on Friday the 11th or at our following one on Tuesday the 15th. The intent is to drain his bladder in order to reduce the risk of complications (e.g., Dominic getting “stuck” on the way out). Yes, Dr. Hopkins says the doctors are unanimous that I should still plan to deliver vaginally. Most likely, Dominic will be coming out next week on Tuesday the 15th or Thursday the 17th. It’s hard to believe that this is going to happen. Scott and I have kicked things into high gear trying to get ready!

By the way, regarding the fluid around the lungs that was seen early last week, it wasn’t seen this past Tuesday. The fetal treatment team thinks that this, in fact, was related to the bladder rupture and subsequent urinary ascites and is not something “new and different”. Good. One less path to explore and worry about for everyone.
As far as what to expect once Dominic is born, Scott and I will be meeting with the neonatologist on Friday after our scan so she can give us the information she has regarding this. Dr. Ball had told us before that, with virtual certainty, Dominic will have to be catheterized shortly after birth. Also, the fetal treatment nurse said that we should expect Dominic to be in the hospital for a minimum of a week, and that we’ll go home before he does. Beyond that, we’ll have to wait and see.

So, needless to say, please keep us (and the medical team) in your prayers. My big fear that I battle is stillbirth (which we’re at somewhat higher risk for in this case) but, we know that no matter what, everything will be okay in the long run. We don’t always feel that way, but we know it’s true. Nonetheless, we want Dominic with us, and for a long time!

Much love and gratitude (and prayers for all of you, as well!),

Adrienne, Scott, and Baby Dominic

PS: Dr. Robert Ball has been our doctor since the first visit to UCSF, but he and his family have recently moved out of state, and he will no longer be handling our case. We've really been blessed by his wisdom and guidance, so we will certainly miss him.

But fortunately we've been left in very good hands; Dr. Linda Hopkins has taken over our case, and she has been working closely with Dr. Ball since the beginning. In fact, Dr. Hopkins was the one guiding the needle in the bladder tap, so she is well informed about Dominic, and we have full confidence in her. In fact, we are very grateful to all the medical staff at UCSF. They've been incredibly gracious and helpful, and we are so fortunate to have such a wonderful institute right in our back yard.

Our last ultrasound with Dr. Ball. Thanks for everything!

Creeping up on 34 weeks!

2006-08-04T22:33:00.000-07:00

Hi everybody,

We had our second ultrasound since our last posting. Today, Dominic’s bladder was a bit bigger (around 200ml) but the measurements are never precise and it could just be the timing of the scan (e.g., he hadn’t “gone” yet). The sonographer and radiologist didn’t see any fluid around the lungs today but, as our doctor later told me “that doesn’t mean it’s not there”. She did say it could have decreased, though. We’re scheduled for the next ultrasound on Tuesday, August 8th.

Just a few other things…when I asked the doctor today what we should expect in terms of dealing with Dominic’s bladder problem after birth, she said that she knows that it’s “problematic” but that it would be best for us to speak with the neonatologist. I’ll be in touch with her some time next week.

The other thing that our doctor told us was that, most likely, they would induce labor around 36 or 37 weeks (if the situation remains what it is now). If the fluid around Dominic’s lungs (“pleural effusion”) were to look worse, then they would deliver him right away instead of risking lung damage (e.g., collapse). By the way, his heart rate and activity are all great, as he passes his non-stress tests with flying colors !

We’re enjoying Dominic (when I’m not wasting my time worrying) every day and are so grateful for this precious little chubby-cheeked gift. Thanks again for all of your love and support!

Adrienne

update on Baby Dominic

2006-08-03T23:07:00.000-07:00

Hi everyone,

We thought we would give you all a break from the spam, but since so many of you have been asking how the Baby's doing, we thought we'd send out another update.

We've had three ultrasounds since our last email update and Dominic's bladder has stayed under 200ml. While this is still 3-5 times the size it should be, it's a far cry from 650 and our doctor is pleased. More importantly, the kidneys don't appear to have stretched anymore.

Just to make sure Daddy, Mommy and the doctors stay on their toes, Dominic now has a bit of fluid around his lungs (as of our ultrasound on Friday, the 28th). The doctor doesn't know what this is about but ordered that I have a non-stress test done once a week to check the heart rate and body movements. I was getting down to one ultrasound a week after the bladder tap but it looks like I might be back in two times a week now so they can watch the fluid around the lungs.

The good news is that we're now at 33 weeks and have more flexibility regarding when to deliver, if needed before term. Our doctor said that, with virtual certainly, Dominic will need to be catheterized within hours after birth but beyond that we don't know what else to expect. Nonetheless, we're very hopeful about it all!

We've attached yet another photo for your viewing pleasure. His eyes are open and it seems as if he's looking straight ahead at us. Very cool (at least we think so).

Thank you, again, for all your prayers and other support. We're so grateful to every one of you and thank God for you in our lives!

Much love,

Adrienne, Scott, and Baby Dominic

Baby Seger(blom)

2006-08-03T22:48:00.000-07:00

The following was originally sent by Adrienne as an email on July 16th

Hi, again, to our incredible community of family and friends!

We’re sorry that it’s been a while since we last sent out an email. It’s been a busy few weeks! Anyway, we wanted to update you on the latest with Baby Seger(blom). We’ve tried to arrange this chronologically in a way that’s easy to read. It may be a lot more information than many of you really want or need but we thought we’d err on the side of detail.
ss
June 26th, Monday – This is where we left off with our last email. As you know, the bladder had ruptured on it’s own and we didn’t have the procedure. The urine went out into the baby’s abdominal cavity (‘urinary ascites’).

* By the way, the doctors have always told us that the baby does not feel the discomfort of his large bladder the way we would, because of the way it develops in utero. Although this would not have affected any of our decisions, it was certainly comforting to know!

June 29th, Thursday – I went back for an ultrasound and the bladder was back up to about 550 ml (in 3 days!). Goes to show you how quickly that hole closed up. The urine in his abdominal cavity had mostly been reabsorbed by his body (which is what our doctor thought and hoped would happen) so this part was good. Essentially, we were now in the same position as the previous week, i.e., deciding whether or not to go ahead with the bladder tap (called ‘vesicocentesis’). We decided to go ahead with it and were scheduled for Monday, July 3rd (with our doctor’s promise that he would scan me before anyone put in an IV J).

July 3rd, Monday – Our doctor (Dr. Ball, by the way) scanned me and the bladder was still huge and so we went ahead with the tap. Everything went as well as it possibly could have. The Baby “didn’t complain”, according to the doctors, and stayed still while they drained his bladder completely, a process that took about 15 minutes. Let’s just say that we’ve yet to meet anyone who can wrap his or her head around how much fluid was actually removed. Here’s some perspective: According to our doctors, the average adult feels the need to empty his or her bladder at about 350-400 ml. The bladder, in normal condition, is pretty much stretched at about 500ml. Our son had 650ml removed from his bladder and he was only about a foot long at 29 weeks!

Here is a picture showing how much fluid was in the bladder.

See if you can fill a bottle this size after your next road trip!

We were at the hospital all day so they could monitor the baby, and me and also give me another ultrasound. I was scanned about 3 hours after the procedure and the bladder had about 55ml in it. The kidneys looked a little less stretched, which is good, but didn’t “snap back to normal” as our doctor put it. The best news, however, was that the doctor got the test results back on the urine and the electrolytes and protein reads are “stone cold normal”! This means that, even though the kidneys are significantly stretched, they appear to be functioning well, and our doctor is much less inclined to think the baby will need dialysis, let alone a kidney transplant, at least when he’s young.

July 4th, Tuesday - I returned the next day for another scan and the bladder was at 65ml (still very good).

July 5th, Wednesday - The bladder size had roughly doubled over night (about 120ml) but this didn’t concern the doctor at all. He said he didn’t need to see me for a week. (We settled on 6 days, as I’ve managed to hone a few negotiating skills over the years J.) Our doctor is hoping that, since the bladder was decompressed completely, that it will toughen up and not get as large again. If it does get as big as it did before, he’s not concerned if it ruptures again, since we know now that the hole will likely close up quickly and the urine will be reabsorbed by his body. (Scott and I feel like this was one of the blessings in the bladder rupturing the first time. Now we know what will happen and so we have more information to help us make a decision regarding what to do in the future.)

July 11th, Tuesday – I went back for another ultrasound and things looked good! The bladder measured at roughly the same size as the last visit and the doctor said that the kidneys looked less stretched! He could see a bit more of the kidney tissue (as opposed to just the fluid) and the tissue didn’t appear to be damaged. Our doctor said that he thinks we have “been positively reinforced for procrastinating” on the vesicocentesis (bladder tap) and that the outcome has “far exceeded his expectations”. Thank God! We got a phone message from our doctor at 9:45 pm that night, telling us he had just received an email and that the chromosome count had also come back normal. The good news seems to be flowing steadily this week!

*********************************************************

My next ultrasound appointment is scheduled for Monday, the 17th. We’ll keep you all posted as things move along.

Finally, thank you, thank you, thank you for all of your prayers and support. Again, we appreciate it all beyond words. We feel the strength and it has really helped us to accept whatever comes our way. It seemed as if just when we were really surrendering to whatever outcome God had planned, things started to improve. We know that this is not a formula for “how to get what you want” but just happened to occur this way in this particular situation. We still don’t know what to expect ahead but are so grateful for every day we have with our little guy!

Please feel free to humor us proud parents by looking at the attached ultrasound “head shot”. We've also attached an earlier photo for those of you who didn't receive it. It clearly shows the enlarged bladder, which when it was drained was double the size you see in the photo.

Much love and gratitude,
Adrienne, Scott and…(drum roll please)…

Dominic Bohan Segerblom

Our Enigmatic Son

2006-08-03T22:28:00.000-07:00

The following was originally sent by Adrienne as an email on June 27th

Hi again, everybody,

Thank you all for your incredible support. It’s been overwhelming (in a good way) and we’re beyond grateful. You really have no idea how helpful you’ve all been.

Well, we had quite an interesting morning. We were at the hospital early for a long morning. I signed a lot of papers, got hooked up to an iv, was given some antibiotics in case of infection, talked to a lot of doctors and, finally, went into the operating room for the procedure. Just before they gave me some anesthesia, the radiologist who was scanning me (doing the ultrasound) pointed out the screen to our main doctor who immediately informed us they wouldn’t be doing the procedure after all.

As it turns out, the Baby’s bladder ruptured and the bladder went down on it’s own. The fluid that was in there is now in his abdominal cavity (the condition is called ‘urinary ascites’) but our doctor doesn’t think that this, in itself, is going to be a problem (and also doesn’t regret going in earlier, nor do we). Essentially, we’ll be able to see now if some pressure starts coming off of the kidneys, as this is the primary goal. The good news is that we’ll obviously be able to do this now without having gone into the baby and risking complications to find out. They’ll be watching carefully to make sure that the amniotic fluid doesn’t go down (due to a now more likely blockage) as well so I’ll still be getting ultrasounds two times per week up at UCSF. The bottom line is that we’re far from out of the woods and are still not going to know all we need to until he’s out, but we’re really glad that he’s still with us today!

Scott and I feel like we got what we asked for: clarity. As we’d said numerous times in the past, including 5 minutes before going into the operating room today “God, if you don’t think we should do this, then please hit us over the head with it.” What more can I say?

Thank you, thank you, and thank you again! We’ll keep you posted.

Much love,

The Segerbloms

Baby Seger

2006-08-03T13:30:00.000-07:00

The following was originally sent by Adrienne as an email on June 25th

Hi everyone,

First of all, thank you so very much for all of your prayers and other supports. We feel so blessed to have such an incredible family and community. Truly.

For those of you who don’t know already, we’re going to UCSF at 7am tomorrow (Monday) for a procedure that will start at 10am. This was decided after noting that the Baby’s bladder doubled in size over the course of four days last week (it was already nearly 10 times the size it should have been). The kidneys were also significantly more stretched.

So, Baby Seger’s bladder is going to be drained of all the urine with the hopes that this will relieve some pressure on the kidneys. The risk of complication (i.e., hitting a blood vessel, pre-term delivery), while typically around 5% for this procedure, is higher in our case because of the high bladder and amniotic fluid volume (they think the percentage may be more like 10-15%). We’re praying that the baby doesn’t move around too much because the needle used to drain for the procedure will have to be in there for about 10 minutes. They may give me more anesthesia so he’s less likely to squirm or may give some directly to him before the procedure.

When I have more time, I’ll send another email with more detail about possible diagnoses that the doctors have considered, in case any of you are interested. The prognoses range from mild (unlikely) to the worst-case scenario. The bottom line is that we’re just not going to know everything until after he comes out (i.e., when we can get a good read on kidney and intestinal functioning).

I’m attaching an ultrasound photo for those of you who would like to see it. It seems to have helped many people get a better grasp on what’s going on. The photo is dated June 13th and his bladder, which you can see as a large black circle, is twice as big as you see in the picture. More importantly, though, you get to see an incredibly adorable face. Yes, we’ve fallen for him. We’re so in love.

Again, thank you all SO MUCH for everything. We feel your prayers and appreciate your calls, emails, and words of support. We feel incredibly blessed.

Our Loving God’s will be done,

Scott, Adrienne, and Baby Seger