Patience is a virtue

This seems to be the new theme of this blog which is ironic because neither D nor I are incredibly patient people. Our time in the NICU has definitely been trying in that regard!

E passed her fast with flying colors as I found out when I called the NICU first thing yesterday morning. Her numbers were in the 70s and 80s which for not having eaten for 8 hours is very good. The nurse said she actually slept most of the time and wasn't crying as I had feared.

Then we had to wait for the doctors to do rounds to discuss her case to find out if discharge was certain. I got to the hospital around 10 a.m. and D arrived shortly after noon since they did say at rounds she could go home - thank goodness! Well, discharge is an incredibly SLOW process as I'm sure many know but oh my gosh was it painful waiting and one more test this and review one more thing there. Gaa! Here E and dad wait for news of her discharge.



Finally at around 5:30 pm we got final word and signed the papers that she was coming home. And she got to wear her going home outfit even if it was two weeks late. :) Actually almost close to her due date since she arrived a bit early.



K was thrilled to have "baby ba-ba-beth" home and thinks she is her own personal doll. Hopefully she learns to be gentle! We are working on getting a routine for giving her medicine (3 times/day) and blood draws (before every other feed). We have lengthy instructions from endocrine on what to do if her levels are below certain numbers but hers have been good for quite awhile now which is a relief. She did well last night and now we learn balancing two kids! This is a good problem to have ... finally. Many thanks for all the prayers and positive thoughts. We have a follow up appointment with endocrine (one of many) in August so we'll see how her progress is and we continue to pray she grows out of this condition.

And we wait

Tonight is the night E must do the 8 hour fast to see if she can keep up her blood sugar levels without food. It will be a very long night for her and I know it will be difficult for us to sleep as we thinking about her constantly. Her nurse is prepared and will be holding and rocking her through it. The nurse practitioner who updated us on her status the past day wasn't very optimistic since some of her readings were slightly lower recently. We hope and pray she is able to keep her sugars above 60 so she can come home tomorrow but we are on pins and needles. The fast will start around 9 or 10 tonight so let the waiting begin. This seems like a bad dream we should wake up from soon but it unfortunately continues. We just want our little girl home with us but do understand it needs to be safe for her to leave the hospital.

Please send a few prayers on her behalf if you have a moment.

Sisterly love

Today we took K to visit E in the NICU. Siblings over the age of two are allowed to visit as long as they have up to date immunizations. She made it for about an hour which was longer than we expected. She painted a picture earlier in the week and we hung it above E's crib. Here are a few pictures of the "quiet" time before she started pulling the pacifier in and out of her mouth and nearly shoved her bottle in her eye!

She has hair! So soft I want to pet her.


And such a cute little nose


Aww - kisses.

Look at these cute, tiny little fingers.


E's 8 hour fast will be tomorrow night (prayers she makes it so they don't have to increase the diazoxide) and she can then come home Monday. We are more than ready to have her home.

Pulled the plug on the glucose IV!

I was thrilled when I got to the NICU this morning and found the IV machine that gave E the glucose solution turned off. This is the machine I would check every day to see how the weaning process was going and now she's completely off the glucose solution and maintaining her sugars on her own (with the help of the diazoxide). I just had to take a picture of the turned off machine.


Now that E is off the IV, they want to monitor her blood sugar levels closely for the next 24 hours or so and then she has to fast for 6-8 hours. The point of the fast is to see how she maintains her sugars without the help of food which is helpful information for us to eventually get her sleeping through the night. If she cannot maintain her sugar levels during the fast, they want to keep her a few extra days to increase the dosage of diazoxide which we really hope doesn't happen. If all goes well, we could have her home Sunday or Monday! D and I have been practicing our blood draws just to make sure we've got it perfected for when she is at home.

Another step forward

As I walked into the NICU today, I looked at the machine that feeds E her glucose solution and my heart sunk as the number had gone up to 3.5 mL/hour. I waited an agonizing 20 minutes for the nurse to come back from a meeting (another nurse was covering in her absence) and found out they decreased the concentration of the solution from 25 (not sure what metric this is in) to 10 thus why they bumped up the amount a tiny bit. While I was there it dropped down to 1.7 mL/hour - yippee! The attending and fellow neonatologists stopped by and were very happy with her progress ( as are the endocrinologists) and said she'll most likely be off the glucose drip sometime tomorrow. She does need to fast for 6-8 hours after that just to see if she can maintain her blood sugar levels on her own. Poor thing - that will be so hard considering they've got her on a pretty strict schedule with feedings every 3 hours. But it will make us feel better knowing she is in the safe zone.

That's it for now - thanks again for all the thoughts, calls, emails and prayers. We are trying to get back to everyone but the outpouring of support is overwhelming at times (very good problem to have) and we hope you don't get offended by a lack of a timely response.

Do we dare say the "d" word?

Today our neonatal nurse actually started talking to us about discharge and everything we need to do before we take E home. I hate to jinx things by discussing the "d" word but it is a positive sign. She is currently receiving only 2.8 mL/hour of glucose solution and her blood sugar levels have continued to be good. We are required to watch two videos (car seat safety and shaken baby syndrome) and take a 30 minute CPR class. I swear leaving the NICU is more challenging then simply leaving the hospital with the baby! But interesting information either way I guess and at this point I'll do whatever they want to take Elizabeth home. However, I know I'll be a total nervous nelly for awhile watching her every breath and making sure her levels are high enough. Not sure how often per day we'll be testing her blood or how often she will receive her medication. Right now they test her sugars every 3 hours and she's getting medicine every 8 hours. We'll see if that stays the same for home.

After spending hours in the NICU just holding her and rocking and staring at our beautiful baby, I had to take some pictures and captured these today. Ahh don't they look peaceful sleeping?


Here she's thinking "yeah I might get to go home soon and meet this sister and dog my mom and dad keep telling me about!"

This picture is pretty much our day today (she must be going through a growth spurt) because she ate literally all day and this is the face she gives me when she's hungry. She's now weighing in at 6 pounds, 7.9 ounces. Growing indeed!

No news is good news

Today continued with another good day for E and the doctors are very happy with her progress. Her glucose solution levels were down to 4.2 mL/hour and they will continue to drop that as long as her blood sugar readings are above 60 which they have been. Her appetite is increasing as they decrease the amount of glucose she's receiving and she has surpassed her birth weight and is now 6 pounds 5.1 ounces (born at 6 pounds, 4 ounces). She is as cute as ever and had a nice, cuddly visit with her today.

We are so thankful to be so close to Children's as D shot over there this evening after dinner to visit and it takes about 15 minutes to get there. To think we had our house up for sale for 10 grueling months with such hopes of being out of the city in the suburbs and settled by the time E was born. As my mom always said, everything happens for a reason and we are thankful to be so close to the hospital instead of an hour away like we would have been if we moved.

Trying to practice our patience

Today was another good day for E with her blood sugar readings being in the 90s and even a few 100s. They also continue to drop the frequency she gets the glucose solution - we're now at 5.1 mL/hour and about a day ago it was about 9.5 mL/hour. So making good progress on how her own body is regulating her insulin output and her decreased need to supplement her with glucose. We continue waiting now that we're nearly through day #2 on the drug to see how the next few days go with hopes that her levels continue to be good.

We were encouraged that a nurse from endocrinology met with us to explain how to test E's blood with a machine that diabetics use. This included how to use the machine, putting in the needles for each test and recording results. We also went over how to use an emergency shot of glucagon in case her levels ever get so low we have to call 911 (ugh). I joked that all I need is one more thing in my purse (since this shot looks somewhat like an epi pen) and the nurse joked back that I was now a medical mom. This is a term I guess I'll be getting used to and this process will hopefully become second nature but right now it is completely nerve racking. We did take it as a positive sign that they want us to know how to do these regular blood draws this since is a step in a direction that she will be coming home. One of the neonatologists did say to expect a hiccup because there is always a hiccup. Thus far things are going smoothly and we're patiently waiting to see how these next few days go.

Here's a picture from today of our cuddly little girl. I could kiss those cheeks all day long and can't wait until I can.

Visit from the W grandparents

I didn't have a chance to post pictures of a special visit from E's grandparents from up North- Papa and Nana. They took the train down for the day to love on her and boy did she get love.




And of course there was a visit with K who took a dip in the pool for her audience of grandparents in her cute strawberry swimsuit. Of course nothing but pure sass from this girl.

Holding our breath

E is responding well to the Diazoxide as her glucose readings continue to rise and they continue to decrease the amount of glucose solution she receives by IV each hour. However we continue to hold our breath as we get through the two day "honeymoon period" the physicians referred to where all patients tend to respond well to the drug. We are anxious to see if she continues to respond well to the drug in days 3, 4 and beyond. The heavens are receiving many, many prayers as we've heard from friends and family far and wide and of course are sending many ourselves. Thank you for all the positive thoughts all surrounding this little girl.

Starting with drug therapy

After dropping E's glucose solution concentration for a day now, she had a low reading today where they were able to gather the second critical sample for verification of this illness. Those labs will be sent for testing and we will begin treating this as if it is hyperinsulinemia (HI) unless the test results find otherwise. She received her first dose today around noon so we wait to see how she reacts. The doctors told us the first two days are somewhat of a "honeymoon" period where her glucose readings are really great and then the third day is the true test of if the drug will work for her. They can play around with dosage, etc as well. We are praying this drug works at a low level since the side effects at higher doses are a bit hard to swallow but we don't want to go there yet.

Had a great visit with her today since she was awake nearly the entire time we were there! The weekend seems to be a quiet time to be in the NICU which was nice.


K went out to cousin Lilly's for a sleepover this weekend so we could go to the NICU together without worrying about who was staying with K. Looks like she had a nice time and enjoyed the warm weather!

Closer to a diagnosis

We met again with the pediatric endocrinologists about E's case and they have decided to start lowering her glucose levels to see if they can't control them at a low point to gather their "second critical sample" as they call it. They are almost certain she has hyperinsulinemia (this link takes you to the Children's Hospital of Philadelphia site where we were directed for a wealth of information) which is basically the opposite of diabetes (as we understand this and are clearly still learning and gathering tons of data). E's body over produces insulin that consumes the glucose/sugar cells thus making her blood sugar levels go critically low as we've seen. She's on a regular IV of glucose solution and the blood draws they're gathering (in the 50s, 60s and 70s - some 90s) aren't even that high. To give some context, if another baby were on this dose of glucose, their levels would be around 160 or 170.

Before making an official diagnosis, they do still want to gather that second critical sample but they are close to wanting to start trying out the leading drug (diazocide) used for this on E. Dosage will be trial and error in starting with this drug and the first course of treatment would be to try the two drugs typically used to treat this (either independently or together) and if they don't work surgery to remove part of the pancreas might be needed. That is a long way down the road, but at least we're getting some information we can wrap our heads around. One bit of information that gave me hope was that kids can outgrow this illness (be "cured" if you will) and there are rarely adults who have it.

There is so much for us to learn and the scary part is still obviously the unknown, but we're trying to take it one day at a time. We are so thankful this was caught very early and her sugars have been monitored every since that low time at the Women's Hospital. We are also incredibly thankful we are so close to a world renowned Children's hospital who has experts on staff who treat this very rare disease.

We have been spending much time in the NICU and I think I was in denial not wanting to take many pictures since I kept telling myself she would come home soon. Well, not only is the poor girl a second child and won't have many pictures in general but now that we know she'll be in the NICU awhile I need to take more picture to capture the beginning of her life as much as I don't want it to be in the NICU. Her neonatal nurse said it so well today in that E looks like a typical, healthy baby except she can't maintain her glucose levels which is why she's in the NICU. So here's some pictures today.






And of course we don't want to overlook the person who starred in this blog for so long Miss K.

What a difference a week can make

Can't believe a week from today E was born. What a fast week it has been. Didn't write a post last night because we were able to sneak away to the NICU last night after K went to bed (and Grammy Abbey kept a watchful eye). It was nice being there when no one else was really there since it was quiet, dimly lit and somewhat peaceful. I was able to make it for the 8 pm feeding to nurse E which was a nice bonding moment. The NICU is filled with beeping and the buzzing of machines which somewhat lulls you to sleep. Once E comes home she probably won't be able to sleep in complete quiet! In the grand scheme of things, we are so lucky since there are tiny, tiny babies in these incubators struggling for every breath and here we have this healthy, pink cheeked baby who looks so healthy. I just want to scoop her up in my arms and take her home. That is the most heart wrenching part of this entire ordeal is walking away from her crib, going home and leaving her behind.

So for the update. Yesterday we had an appointment with the pediatric endocrinology team at Children's - our first meeting with them face to face. They have been consulting/studying her case since she was at the Women's Hospital with me and have been looking at the result of every blood draw, test and breath she takes basically. We met with them for an hour (total information overload) and in a nutshell they are trying to build a case for a diagnosis by piecing together results from various tests that are coming back from her stay at the Women's Hospital as well as Children's. The round of tests they did at the Women's Hospital when her blood sugar was so low is the only data they currently have from labs (and not just heel pricks from glucose tests which they do every 3 hours before she eats) and they would like to run the exact same series of tests at Children's to compare/contrast information. Yesterday she had a glucose level of 44 (again quite low) and they quickly tried to gather all the necessary samples from E to basically capture that moment but they were unable to do it all through her current IV line through her umbilical cord stump. For that reason, she was scheduled to have a PICC line inserted yesterday to help them be able to act more quickly next time. So frustrating because we've been waiting to lower the glucose solution levels to get a reading at this low level, she goes to the low level on her own (which isn't a good thing) but tried to take advantage of the moment and the moment passed. (Sigh).

Probably the hardest item we had to swallow from yesterday's meeting was that she'll be there for quite a few weeks it sounds like (a month, more than a month? can't really say). I think both D and I were really hoping and expecting to come home much sooner than that and we're trying to recover from that news. It is challenging balancing getting to the hospital and a very active toddler who can come to the NICU with us but for very short periods of time since she isn't very quiet these days and is so active. She hasn't been for a visit yet, but the NICU social worker recommended it so we're working on getting her immunization records sent from our pediatrician so she is cleared for visits.

As I quietly rocked E to sleep last night, I couldn't help notice she was wearing a little green flowered Carter's outfit that her sister K was wearing in this photo:


My cousin Erin Elizabeth cuddled K (at probably one month old in this picture) the weekend of her high school graduation. Unfortunately Erin was taken from us much too early from Ewing's Sarcoma at the tender age of 18. Erin Elizabeth (for whom E was named after) was so strong and independent and I can only hope E has received some of her characteristics to help her (and us!) through this. Interesting and mysterious how interwoven life is at times.

Today's update

We went to the hospital twice today - once in the morning and once in the afternoon. That schedule seems to work out well with our schedule with K. Thankfully the Abbey grandparents have been able to help us with K as well as our wonderful nanny Olga.

E had a good night with strong feedings and steady blood sugar levels. We thought today would be the day they start lowering glucose solution levels but she had one lower (not terrible but still low) reading this morning. To be cautious, they waited to lower glucose levels until tomorrow but every other drawing today was great.

We had a reassuring conversation with the lead neonatologist on her case who talked strategy with us on how they want to be cautious with someone as young as E and how they wanted her to have two days of steady glucose levels before changing anything around. We appreciated the approach and the conversation. He said she would probably be there for quite a few more days and wanted to be absolutely sure she was safe before being discharged. He also said she was on the smaller side for her gestational age when she was born so there is a possibility that they might not find a reason for why this happened which would actually be the best case.

Here are two pictures from the day with a visit from Aunt Trish and E in one of her own outfits all cozy resting. They told us we could bring some outfits from home for her to wear and K sent one of her stuffed animals to keep E company in her crib which is quite sterile at this point. I was also able to nurse her twice today instead of having to exclusively pump which was a nice moment to have with her. She definitely gets the hang of it so hope to do more of it in the days ahead.




That is the update for now and hope to have encouraging news to report tomorrow. Thank you for all the kind messages of support and prayers - keep them coming please!

Unexpected turn of events

Unfortunately E has not come home with us as planned. On Sunday night she went to the nursery so mom could get some rest and would be brought to my room for feedings. While in the nursery, one very attentive nurse realized E wasn't responsive and was quite lethargic so called the pediatrician who recommended a blood glucose test. This was done and the reading was a 11 when a normal reading should be at least 50. She was brought to my room at 3:30 a.m. and I was told she needed to go to the NICU immediately and I should kiss her good-bye. My was that a wake up call. Thankfully the woman's hospital has a state of the art NICU and she was in great hands. They were able to stabilize her glucose levels with a glucose solution but didn't know why this was happening. It was at that point the Prentice team decided to transfer her to Children's so she could be monitored by a pediatric endocrinologist. With that, I quickly got discharged from the hospital so I could be with her. The transfer in an ambulance happened on Monday evening and we met E at Children's which is thankfully even closer to our house than the Women's Hospital.

(picture of E in NICU)

At Children's they were able to stabilize her glucose levels even more and get her up into the range of 60, 70 and even some 90 readings. She started eating again (mom's milk tastes so yummy!) and today was stable. She is being evaluated by an endocrinology team at Children's who is waiting for numerous test results to come back that Prentice ordered. Tomorrow they will scale back the glucose solution and see what her readings do. If she falls below the 50 range, they will run the same battery of tests that the Women's Hospital ordered and compare/contrast results and hopefully draw some conclusions. She is definitely in the right place with an amazingly talented medical team just being patient trying to figure out why this happened. And we were told by one person on the team that there just might not be a medical answer and she bounces back on her own. We'll see what tomorrow and the next day bring. Until then, we'll try to update the blog regularly with updates since the information comes slowly some days and rapidly on others.

Here's two pictures of E in the Children's NICU:

Baby girl Abbey has arrived!

On Friday, July 7th I was scheduled for a version to turn baby girl Abbey from a breech position to head down. Well, she really didn't want that to happen and I ended up having an emergency c-section later that day since I had pre-eclampsia and the attempted version lowered baby's heart rate. Scary time for mom and especially dad, but she was born on Friday, July 7 at 3:02 p.m. Her stats were 6 pounds 4 ounces, 17 1/2 inches long and she was beautiful. K is thrilled that "baby" has arrived and is very curious about her every move. She even took home the little pink stocking cap and a newborn diaper to dress up her own baby. Here are some pictures: