Elizabeth's progress

Now that we're home, Elizabeth is gradually improving, though not fast enough for our comfort. She's lost a lot of weight and continues to have severe GI trouble. It breaks our hearts not to be able to make her comfortable. Thankfully Granna Peterson is here and has taken the night shift (as well as day shift!) so Matt and I have caught up on some sleep, and gotten a date. This week we have two appointments (GI & Pediatrician) to follow up on her hospitalization and are hoping that we will see her get better over the next few days.

Elizabeth LOVES snuggling with Granna

 

In a happy moment

 

Baby Girl 2 is definitely growing. Now that my previa is gone, I'm breathing a sigh of relief. I'm 30 weeks now and counting down to her Dec 2nd-ish due date.

 

The Haynes visit to Saint Louis

In the stir surrounding Elizabeth's Hospitalization, we didn't post pics of Matt & Abby's visit to see us. We had a great time in the few days we had together before Matt flew back to California, Abby got Elizabeth's bug and started throwing up, and Elizabeth got admitted to St. Louis Children's Hospital. We loved meeting little Evan for the first time, and were so thankful to have our dear friends here, even though it was a less than ideal weekend vacation.

We're home!

We have good news to report. Elizabeth is home and happy. This afternoon we were discharged from the hospital, and though we're all exhausted, we're so thankful not to spend another night away from home. After a yummy meal from a friend, we're heading to bed to hopefully start getting some rest. Thanks so much for your prayers for us this week and always. We are so grateful. Here are a few pics of our happy girl.

Every 4 hours while in the hospital, Elizabeth has to get her vitals checked. This is not her favorite time of day. However, we've made some progress in helping her to make friends with the stethoscope and now when someone listens to her heart, she says, "Ba-dum, ba-dum, ba-dum"...so cute.

 

So many toys so little time.

 

Saying goodbye!

 

Eliza-bug update

Hi Everyone,
Tonight's update will be quick. I'm home to sleep since my mom arrived this afternoon and I'm wiped out. Elizabeth is clearly improving...less swelling, better lab results showing that the blood transfusion was successful at combating her anemia. She still has "lower GI symptoms" (use your imagination) but was well enough to ask for her Silly Songs video 26 times today and get a little cranky when I wasn't on the ball in keeping her entertained. They're watching her to see if she bleeds again and also to see how she does transitioning to food by mouth (actually by G-tube) and off of her IV fluids. Still no clear answers to all the "whys", but lots of people are still thinking about it so we'll see. We're hopeful that we may be home before the weekend.

Matt's dad's surgery to remove a cancerous tumor on his kidney is scheduled for tomorrow morning and with their support, Matt has cancelled decided that he needs to stay in Saint Louis with Elizabeth and me. His parents are gracious and understanding and we're trusting God to carry them through this, and knowing they'll get lots of love and support from our family that is able to visit and friends nearby.

A few good things to report as we head to bed:
*Elizabeth is improving
*Despite only knowing me for a month, we have experienced overwhelming practical and emotional support from my small group. They have stepped in where our friends in the Bay Area left off and we are humbled by the incredible care they are showing us.
*Granna has arrived and is sleeping with Elizabeth tonight so I can get some rest at home.
*Abby, who extended her trip over the weekend to help me out, ended up with Elizabeth's bug, spent Tuesday vomiting, and but is now on the mend. (please pray that her 10wk old son, Evan, doesn't catch this nasty thing!)
*While one of my small group friends sat with Elizabeth, Matt was able to come with me to my OB apt. and ultrasound, where I learned today that my Placentia Previa is completely resolved. It is out of the way of the cervix, and THAT is a huge answer to prayer. At the very minimum, this means I'm not at risk for early labor, early bleeding or bed rest, ALL of which would have further complicated our already "jam-packed" life.
*Matt's getting great support at work and has been available for a great deal of Elizabeth's hospitalization.

We're exhausted but hanging in there...thanks for your prayers, kind words and thoughts, and your steadfast support through the next leg of the roller coaster we're riding.

Here are a few pics of the Bug.
Love,
Sara (for all of us)

 

 

 

 

Please Pray for Elizabeth

It's already late here in St. Louis, but we wanted to quickly get the word out that Elizabeth has been admitted yet again. Yesterday, she began having severe diarrhea, high fevers and vomitting. Sara took her to the pediatrician's office and was sent from there to the ER for additional testing and intravenous fluids. These showed that she probably has just a viral thing, but her labs showed that she was severely anemic and that her stool contained blood. They are very afraid that her gastric and esophageal varices are bleeding. We have no idea what this might mean for her future, especially since the GI doctor recently told us that the options are very limited at her size and age.

We are grateful that God has allowed this "viral thing" to shed light on the more serious issue of her anemia! But we're getting weary of this routine, especially now that we live 6 miles from the hospital, have no family in town and have to share a room with a Power-Ranger loving kid.

Pray specifically for:

1. Elizabeth's spirit as she goes through more painful procedures and feels lousy overall.
2. Sara as she and our next child try to get rest in a noisy shared room in a noisy new hospital.
3. Me, as I try to decide where to spend the next week. I had been scheduled to fly to California to be with my parents as my dad has urgent surgery. Obviously everyone is as conflicted as I am over where I should be.

Thank you for banding with us yet again.

Matt

Results of Elizabeth's CT

We finally heard from Elizabeth's GI. Basically, he hasn't had a chance to sit down with the radiologist, but his initial review of the report leads him to agree with UCSF's assessment and plan. Since nothing's changed, the bottom line is: she's still too small to shunt (connecting a healthy portion of the portal vein below the clot to a healthy portion -if there is one- above the clot), and at this point in time, since she's not bleeding or having any symptoms that would force our hand, the risks of liver transplant far outweigh any benefits.

So it's still a wait and see game. That is unless something comes up in his conversation with the Radiologist. Praise God for no imminent surgeries and for a stable clot. We're also thankful to hear she has developed some collaterals to decrease the pressure on her verices. How strong these collaterals are, and how long they will last...only God knows, and time will tell. We're certainly happy to take "transplant surgery" off our list of to-do items for before BGH2's arrival this fall.

Thank you so much for your prayers and encouragement. Last week was a big challenge, as Elizabeth got the Roto Virus for the 2nd time, and was miserable, with high fevers and serious GI issues. We are SO grateful for the antibiotics she was put on after her last bout that landed her in the hospital in January. Those antibiotics prevented her from getting a UTI and complicating things this time around. I was able to care for her entirely at home and that, honestly, was therapeutic for me. Too often I've had to hand over the care of my daughter to other people, so to be able to comfort her all by myself was just precious to me.

She's completely well now, and we just said goodbye to my good friend Jillana who flew in over the weekend to offer me some help and respite, and our VERY FIRST date night (read: TWO HOURS ALONE) since arriving in Saint Louis in July. Elizabeth got to practice being a "big sister" to Jillana's daughter and when we dropped them off at the airport this afternoon, we had meals in our freezer, cookies on our counter, organized bins of baby clothes in our basement and hearts full of gratitude.

Here are a few pictures of our week:

Elizabeth playing with her very first tea set...thanks Sophia!

 

Just a sweet smile

 

Matt practicing for TWO! (for reference: Eleni is SIX months old, weighs only 3 lbs less than Elizabeth, and can eat her under the table...though our Peanut can SCHOOL her on her ABC's.) :)

 

Elizabeth and Sara with our sweet friends, Jillana and Eleni

 

Elizabeth's CT Angiogram

Thanks so much for your prayers today. God's grace was evident and we are so thankful to be sending this email from home and not a hospital room right now! Elizabeth hated every minute of the experience, but was a champ. Although she spiked a fever just before the procedure, she handled the anesthesia really well. The timing worked out perfectly and allowed Matt to step away from clinic at ALL the critical times. As a result, I didn't have to handle everything on my own, which was a huge blessing. We're again seeing the benefits of Elizabeth's hospital being integrated with Daddy's workplace.

We don't expect to hear from the GI until the middle of next week, but Matt was able to do a little "investigation" (read: pulling up of her chart). The bottom line is this- nothing has changed since her last CT scan one year ago. The portal vein is still completely closed off, but her spleen hasn't enlarged any more and there is no ascites. We're not sure what this means for any potential surgeries, but we'll keep you informed.

Thank you again for your prayers and concern! Here's a kiss from Elizabeth to say THANKS & "Ni-night"!

Elizabeth's August Update...in September :)

In the weeks since our last update, Elizabeth has been doing well! Matt's parents came to visit over a long weekend and the extra attention (that only Grandmas can sustain for 4 days straight!) enabled Elizabeth to make huge progress in her language and gross motor development. Okay that's the "medical-ease" way of saying, she's learning all sorts of new words and phrases ("ByeBye Daddy" and "Hi Daddy" being among her favorite) signing her colors and ABCs and taking her first steps! Of course we're so proud and at the same time, SO thankful to see her doing things that we at one time didn't let ourselves dream about.

Her feeding is improved as well, though in the last week it's taken a downturn, and she's gagging on almost everything I give her. Ugh! It's the roller coaster that I never become fully accustomed to. SUSTAINED forward progress is what I want, but 2 steps forward...1 and sometimes 3 steps back, is what we get, and I still struggle not to feel defeated every time I see that backward slide.

Two weeks ago I had a phone consultation with the "Feeding Guru" in the Bay Area. We'd sent her video of Elizabeth eating and she was able to give me some VERY specific feedback, as well as helpful suggestions. (For the mommys on this list who have kids with feeding disorders, let me know if you want the details, I'm happy to email them out. All of her suggestions have been really successful in their application) The conversation was a total answer to prayer. I feel encouraged about what I've been doing and now have some more tools in my belt. For the time being we're going to work on implementing her suggestions, and if we reach a point where we need her help teaching Elizabeth to chew (nothing comes naturally to these kiddos...it's all a process of teaching her how to use her muscles..."waking them up" so to speak) we can schedule an intensive 5 day intervention on a visit to the Bay Area.

Finally, and the issue most immediately in need of prayer, Elizabeth's GI is eager to "deal" with the clot in her liver. Though she's still not a perfect candidate, he wants to investigate the options of a shunt to bypass the clot or a liver transplant. To that end, we'll be undergoing a CT Angiogram & Liver Biopsy at St. Louis Children's Hospital on Thursday (8/6). This will be our first time overnight at a new hospital and I'll admit, I'm a little anxious about a totally new group of people. I'll miss our VIP treatment from the folks at UCSF Children's Hospital (Michael, could you call and suggest they test her for Roto Virus so we can get a private room??) and will DEFINITELY miss the support of friends and family. We'd really appreciate your prayers for a complication-free procedure. Additionally, we don't know what is best for Elizabeth at this point. We need God to give wisdom to her Dr.s so they can make the wisest decisions in caring for her.

I'll send out an email to let you know how things go. Meanwhile, here are a few pics from our last few weeks.

Elizabeth loves to help me unload the dishwasher. Can you imagine why?? Eventually these utensils made it into the drawer.

 

This is the easiest way to call her grandparents these days. It's just the right size for little hands!

 

An Elizabeth Sandwich.

 

Our new Missouri license plate, and evidence that BGH Deux is growing.