Appointments Update

Last week was less than ideal. We had to cancel the audiology/ENT appointment because Isabel was in the hospital. On Monday, we saw the surgeons about her G tube, and they were concerned that it may be infected, so she was admitted right from clinic. We did not anticipate that. They wanted her to get IV antibiotics. They also said that her G tube would need to be moved because, as I suspected, it was now too close to her pacemaker. Long story short, we had them remove the G tube. (She is fed through her separate J-tube so no worries about that). The stoma is healing up, slow and steady. She came home last Friday on oral antibiotics. That was earlier than expected because they could not get an IV in her...and that is very scary. Her veins have had so many picc lines and IVs in the past year that there aren't any left in decent shape right now. In a life threatening emergency, there are things that they could do, but it is still not good. :( So we continue to wait for all to heal and will be rescheduling the ENT appointment. We have a follow up with the surgeons in a couple of weeks for them to see how the G stoma is healing and to discuss plans moving forward.  On a positive note, she remained happy and well all week and we all got to visit with a lot of old friends.  She was happy to come home though...and that made us very, very happy.

September, Already?

Hello. Happy Fall. I hope that you had a good summer. Ours was good. It was nice to have Dan home so much. We even went to Greenfield Village with Isabel. It was overwhelming, but we did it.
Isabel has been growing and developing like crazy. She is rolling all over the place. Sometimes she seriously just won't stay still. She is getting into everything within reach, which includes her feeding to tube...:/ Conversations are often punctuated with "No Please" or "Isabel, No." I find myself excited that she's exploring her environment and figuring things out, and, at the same time, slightly terrified. :) She's working on tummy time, and waving, and has been sitting up quite a bit in her Bumbo seat and now her high chair. She also turns the pages when we read books, loves her toes and blowing raspberries. She is such a content and happy girl. We're so proud of her.  She weaned off of two of her medications (one of the diuretics and a vitamin supplement) and has had many clinic visits. She is doing very well medically and several of her specialists are quite excited about her growth. She is now about 15 pounds and over 25 inches long. It's hard to find clothes for her sometimes though because they have to accommodate her feeding tube and she has a really long torso and short little legs. She has 6 teeth now and number 7 is on its way. Her hair is crazy and untamable. Daddy loves that.

We have a couple of important appointments this week. We're seeing the audiology and ENT docs again. It was previously determined that Isabel has mild to moderate hearing loss at the worst, and that she has some fluid in her ears. This visit will reassess her hearing and the fluid to decide if she would benefit from getting tubes in her ears. The other appointment is with the surgeons and pacemaker docs. Everything is working fine, but as Isabel has grown, her pacemaker has moved a bit...or her body has moved around it.  It is now within an inch of her G-tube. The docs know about it and don't seem to be immediately concerned, but we want them to take a look just to make sure that the proximity of the device and tube won't cause any problems. Both of these visits could amount to nothing, or they could both possibly mean procedures or interventions of some kind. We really have no idea, but we're nervous, especially me. She is so much healthier and stronger than she ever was, and if she needs to have something done, I know she'll be just fine, but the thought of her going back in the hospital again makes me anxious too. We would really appreciate any extra prayers, good vibes, or warm feelings about all of this. We'll keep you updated.

Until then, we're enjoying our goofy, feisty, little monkey girl and are looking forward to some nice Fall walks and our first Halloween at home. Spoiler alert: she's gonna be a lady bug!

P.S. We don't really call her Izzy very much anymore. She is mostly just Isabel...or Isabelly...or Belly...or Bug, thus the costume. :)

April-May

Long time no update...

As many of you know, Isabel came home on April 1. The transition has been stressful, but overall we are all adjusting to our new lifestyle. Dan and I were both off of work for the first several weeks, but have since returned to work. Dan is teaching full time and I am working part-time. We have home care nurses during the day on the days that we both work, and because Isabel requires constant supervision, we also have nurses who come to our house and work the night shift so that we can get some sleep.

Other than simply adjusting to having a "mini-hospital" in our house, the first couple of months were very busy. We had lots of follow-up clinic visits back at Mott and to the pediatrician, and a couple of trips to the ER for what ended up being minor issues. The first time didn't seem minor initially, and we all got to ride in an ambulance together. She ended up having a respiratory infection, stayed in the ICU for a few days, and was sent home on some antibiotics. The second trip was very similar, but thankfully, without the ambulance ride. Both visits to the ER were very, very scary at the time, but ended up being alright. Short hospital stays are not very unexpected for Isabel since she is very vulnerable to illness, as many infants are. The difference is that when she gets sick, she gets really sick. This should hopefully get better as she gets bigger, stronger, and older.

In general, she is slowly getting bigger and stronger. She has gained about half a pound plus since she came home, is getting much longer, and thanks to some good physical therapy and regular home life, she is rolling over and gaining strength. She has been a happy, smiley girl, who loves to play with all of the toys that sat for so long waiting for her. She's smart and stubborn too. She plays possum by pretending to fall asleep with the physical therapist when she doesn't want to work. Little stinker! Her condition has also been improving medically. We have started weaning her diuretics AND some of her ventilator settings ahead of schedule. Currently, it seems that her teeth are catching up and she is teething...not fun, and yet glad to be worried about "normal" baby things. Looking forward to her 1st birthday...

Almost There

Isabel has finished her antibiotics and recovered from the infection. She has been a happy, smiley, snuggly girl. It's very early Saturday morning and we are currently on our 24 hour care shift with her at the Med Inn. This is the last big step before we can take her home. It gives us a chance/test at caring for her all on our own while still being within the hospital complex. She is sleeping and so is Dan, after he took the late night/wee morning hours shift. We are tired, but doing well. It's a good tired. It feels so good to not be in a hospital room, and for the first time ever, it's just the three of us. I was so nervous for this, but have already gained so much more confidence that "we can do this," and are ready for her to come home. We have received a lot of training and have spent so much time in the hospital becoming comfortable with her care, that it now just feels normal and we almost don't have to think about it. We know her and love her well, and are feeling so blessed to be at this point in the journey. In a few hours we'll be taking her back to the hospital, and in a few short days we'll be bringing her home! It almost doesn't seem real. There will be many challenges to adjusting to life at home with Isabel and with the home care nurses that will be there to help us, but we're so ready for the next phase. Thank you all for your love and support.

Amy, Dan, and Isabel

Yes, Yes, Without the Oops

Let's try this again. So I'm sure that many of you are wondering "what's been going on with the Bumfords?" Well, as many of our stories start, everything was going really well. We were moving forward with our plans to get Isabel home. We'd hit some small bumps since our last post but nothing major. Then last Thursday we hit a pot hole sized appropriately for all of us michigan drivers.

 Izzy had been fussy for a longer than normal time in the afternoon. We were assuming that her gums/soon-to-be teeth were bothering her as they often do. However, as time went on it became obvious that something else was wrong. I'll spare you the details but Isabel was not in a good state so her nurse called the rapid response team. Within a few minutes there were about 20 people working in and around her room trying to get her stabilized. Needless to say, Amy and I were a mess of fear and sadness. Worried again about what all of this would mean for Izzy and us.

They were able to stabilize her and then transported her down to the PCTU (cardiac ICU) where we had been before. It was a long night but we were comforted by Izzy's continued stabilization and the fact that Erin, Isabel's night primary nurse, came on duty shortly after we were transfered. On Friday the doctors did more testing to see what could have caused her to have such a scary episode. It was all a big mystery until her blood culture came back positive for bacteria. An infection. That explained her drastic change on Thursday and why she was able to bounce back so quickly after her first dose of antibiotics. Over the weekend she continued to improve and as of today has moved back to the Stable Vent Unit (SVU). We are still unsure of our timeline moving forward but feel that we are back on track to get out of here soon. 

We continue to be blown away by the amount of love, support, and prayers that we've received during this challenging time. We can't thank you all enough, no words exist that would give our feelings any justice. Thank you from the bottom of our hearts. May God's love and grace be ever with you all.

Love,

Dan, Amy, and Izzy

Prep for the Next Step

Hi everyone. I know... It has been forever since our last post. Sorry about that. I can't tell you how many times I've sat down and started or intended to start writing a new post and it has been derailed by a number of things. Most of the time the "distractions" have to do with Isabel and her care but we've also had a lot of distractions from other parts of life. For instance, our dog, Otis, has taken to jumping the fence to go play with neighboring dogs. He is certainly assisted in this pursuit by the outlandish piles of snow in our backyard but he is physically capable of jumping the fences without all of that snow. Enough of that though, on to what you're really here to read.

Since our last post Isabel has been doing great! She reached her goals of being on full feeds and getting all of her medications to oral (through her feeding tube). She did all of that and remained stable and happy for long enough that the doctors felt comfortable transferring her to the Stable Vent Unit (SVU) on February 25th. We finally made it! One day short of 8 months we triumphantly (and a little nervously) left the ICU.

 It has been a really good transition for all three of us but not without its bumps, bruises and nervous moments. The scariest and most notable came on Wednesday (the day after we moved) when I changed a dirty diaper and found some blood in with her poop. Immediately my heart and Amy's heart sunk like rocks. Was this her body telling us that she wasn't up for or able to eat enough food to sustain growth and life? Was this the NEC that she had to fight and recover from back in January? What does this mean?!? From there the docs stopped her food and ran some tests including an x-ray and a contrast dye study. It was a LONG 24 hours of waiting, worrying, and praying but nothing was found to be wrong and there was no reoccurrence of bleeding so she was again given the go ahead to start back to eating.

Other than that issue things are really coming together for us. Amy and I have both started long leaves from work. Not working allows us to be at the hospital with Izzy during the day and for many more hours which enables us to improve our competence and confidence in preparation for taking our girl home. One of the big highlights recently is that we were finally able to take Izzy on a walk by ourselves (just the 3 of us). It was a great time and we were even able to visit Jen (one of her NICU primary nurses). We're looking forward to more walks at the hospital (visiting the PCTU, cafeteria, and anywhere else that we'd like. All of that in preparation for even more adventurous walks out in the "real" world. We also completed our 12 hour block of care where we did everything that Isabel needed for the entire twelve hours. It went really well. Now our last requirement is the 24 hour leave on pass where we go to the Med Inn (the hotel in U of M Hospital) and take care of Isabel for an entire day. After we complete that next Saturday, the 15th, we'll be ready to take Isabel home on Tuesday, the 18th. A day that we have been dreaming about long before Amy was even pregnant with Isabel.  I'm unable to describe the excitement or the fear that comes as we approach this next step in our adventure. We continue to ask for your prayers and thank you all for your prayers, love and support over what has been one of the longest, hardest, and most rewarding periods in our lives. 

With love,

Dan, Amy, & Isabel

Update 1/22/14

All of her tests were normal, so Isabel has started to get some food back in her belly very slowly. So we shall see how she does. It will take about two weeks to get up to her total amount by making very small increases each day.

Update 1/20/14

Isabel is still on all IV fluids and nutrition. We have yet to start putting any food in her belly because the docs wanted to do one more test, a dye contrast study of her small intestines, beforehand. They started that test this morning, and she will continue to have x-rays throughout the day and then we should be good to go. 

Otherwise, she looked so good last week and over the weekend. She was one happy, comfortable baby and FULL of smiles. We even went for a stroller ride yesterday all around the unit. It was only her second time out of her room. She got lots of attention. Her respiratory therapist even played a "theme song" on her cell phone as we were walking around: "Paparazzi" by Lady Gaga. ;)

Feelings

This may sound strange, but Dan and I are doing alright. We wrote that last post together. We want to be on the same page with everything and remain strong together. Of course, this is extremely hard, sad, and heartbreaking, and we have been having a lot of good conversations about life, love, and our little lady. We know that no matter what happens, we will all be OK. Either scenario will be harder than we can possibly imagine, but also OK. We truly do want what is best for Isabel. She has battled infections, surgeries, procedures and issue after issue. She has been so strong, and if she still has it in her to keep on fighting, we'll be with her all the way, and if not, she will be free. She'll be free of all of the tubes and medications, and free of all of the pain and struggle and illness in her body that was never supposed to be. We're holding onto her, open-handedly, and focusing on the gift that the last 6 months has been. We have gotten to know our little girl. We have seen her smile and play. For a long time, we never thought we would.
We have been operating "one day at a time" for months. It has been exhausting.We are now about to make moves forward and it feels good. Some day soon we will be going home as a family, and Isabel will get to meet her puppy brother. It may not be on our terms, but it will happen. We are so scared. We're scared to lose her and face life without her, and scared for how challenging her long-term care might be. In the end, we are not in control, and we place all of our lives in the hands of God. When I was pregnant, a verse kind of found me and stuck with me. "Before I formed you in the womb I knew you, before you were born I set you apart..." (Jeremiah 1:5) It is Isabel's verse. It's on the wall in her room at home, and I think about it a lot. She has always been, as we all are, a child of God. While she is here on earth we get to be her parents, and whenever she leaves us she'll be well taken care of. We love you so much, Isabel Ann.


On a separate note, thank you. Thank you, thank you, thank you to all of you who read this blog and Facebook and share your support. It gives us a way to share this experience. Being vulnerable and open about all of this, the good and the bad, has been very healthy for us. It means more than you know to feel that we are not carrying the weight of this alone. Your messages of support have been overwhelming.      

New Year

It's been a while. Isabel is doing pretty well, but is still in the ICU. We had a good Christmas together. Not quite what we had hoped for since we were in the hospital, but we had a tree set up in her room and spent the night with her on Christmas Eve so that we could be there when Santa came, and see her first thing in the morning. It was great to all be together, and made us that much more anxious to get her home. The rest of Christmas break was filled with lots of family time and a very happy and comfortable Isabel.
However, on New Years Day, things got a bit more complicated. Seemingly out of nowhere, Isabel developed signs and symptoms of an intestinal issue. X-rays confirmed that there were tiny pockets of air throughout the lining of her small intestines. No idea what the exact cause was and we may never know, but possibly due to an infection. The treatment for this is to let her bowels rest (not feed her) and treat with antibiotics for 14 days. Today is day 12. During the first few days of this, she was very uncomfortable and had a very hard time settling down without the help of medication. Since then, the abdominal X-rays have shown that the air is gone, her intestines appear to have healed, and she has been very comfortable, happy, and playful - back to her old self.
Isabel has had many setbacks and complications, but this one sticks out to us and the doctors as being more concerning because she had been doing so well, there was not a clear cause, there is no real "fix" for this, and there was no way to anticipate this kind of thing. Other than an infection, one possible explanation is that her belly may not be getting sufficient circulation and oxygenation, which points back to her heart. Isabel's heart, though repaired, still does not function at 100%. In light of the belly issue, and because it had been a couple of months, she had another echocardiogram. The results were mainly consistent with what we already knew, but also indicated that her heart may be struggling a bit more to pump blood out to her body. This was and is all very hard news to swallow at this point considering all that she has been through and all that she has overcome.
With all of this in mind, we had a couple of meetings with her care teams this past week. Through those meetings we've gained more insight into Isabel's current situation and how it will most likely affect her moving forward.  The doctors talked to us about each of her organs that has had trouble during her 6+ months of life and told us best and worst case scenarios for each. The short story is that she has experienced or is experiencing failure (not proper function) in four of her major organs (heart, lungs, kidneys and intestines).  Of all of these failures, her potential intestinal failure is the most dangerous/scary.  Her heart and kidney disease can be treated with medication,  but it is much more difficult if she can't absorb the meds with food through her intestines.  Likewise, if her intestines are not able to work properly, then she is not able to take in the amount of nutrition that is required to sustain growth or even the life of her small body. Isabel has shown us time and time again that she is one tough little girl. Not even the doctors can deny that. However, with all of these serious complications, she is not likely to have a long life, but no one can say that for sure. So, we are waiting to see what she can do when we start to feed her again later this week. It all seems very up in the air right now. She has made so much progress, but just doesn't seem to be able to get all the way to where we'd like her or need her to be. We are working on a plan to get her home sooner than later no matter what, so that we can just be home together as a family. It will likely be a least another month before that happens so that we can see just how much food she can digest, and if we can get her back on a stable regimen of oral medications. We love her beyond words and are just praying for whatever is best for her in the long run. We have incredible families and friends and a team of doctors, nurses, therapists, and social workers helping us every step of the way and do not feel in any way alone in all of this.

Thanks for you continued love, support, prayers, and good thoughts,
Dan, Amy & Izzy