20 Weeks Old

Merry Christmas and a Happy New Year!

Abby is now half as old as my pregnancy was long - I'm not entirely sure that sentence made sense, but whatever, I am very tired. Jameson and I are also celebrating our seventh anniversary today! Last year we had to forego any celebrations due to my out of control morning sickness, so we're excited to let my sister and her husband hang out with Abby for a bit while we get out for a fancy dinner.  Hopefully the munchkin will behave herself!

Abby has had a weird week. 

Highlights include:

- Celebrating her first Christmas! She was awarded a brief trip out of the step-down unit to see the hospital in all its decorated splendor. She also received a multitude of lovely things from her many admirers around the continent, thank you everyone!

- Visiting with family in from out-of-town. We had some of Jameson's family here over Christmas, and some of my family are here now. Abby has loved hanging out with everyone, and we haven't minded it too much either ;)

- We've been enjoying lots of sweet smiles, baby babble, and seeing Abby actually show some interest in a few of her toys!

Less awesome things (Lowlights?) include:

- Abby starting a serious puke-fest Christmas afternoon that continued through the weekend and on into today. Turns out her white blood cell count was very high, and a urine culture suggests that she has a urinary tract infection. :( She's been started on antibiotics. 

- She had to have an MRI to assess whether or not the code event caused any noticeable brain issues - while the results came back looking ok, she screamed through the whole thing. It was pretty dreadful. My poor pumpkin.

- The oxygen saturation levels in her blood have been dropping in her sleep (de-satting). We're not sure why this is happening all of a sudden or if it's related to some of her other respiratory issues, but she's on the list to have a sleep study done.

Other things:

- We're working on re-establishing Abby's pacifier sucking skills. Since heart surgery she has wanted absolutely nothing to do with the pacifier or bottle. While this sort of oral aversion is pretty common after a long period of intubation,  for kids like Abby who have never really been able to eat by mouth, it's very important to keep up with the use of these muscles. Little by little she's coming around to it though. She's at least shown lots of interest in her fingers!

- We've also had the opportunity to start working with Abby in something called a tumble form chair. It gives Abby the chance to work on her sitting skills without having to hold her head up completely on her own. She has a very difficult time with head control, so this is great for her.

All in all some ups and downs, but she's stayed pretty happy through everything, and we pray these new challenges will remedy themselves quickly! Our holiday celebrations continue to be odd, but wonderful - we hope all of your holidays have been merry and bright as well!

19 Weeks Old

It's a good thing I have these posts to look back on, otherwise I'm pretty sure I would have lost count of how many weeks old Abby is now - but as it happens, last week was 18, so this week must be 19. ;-)

On Wednesday, Abby finally got to bid the CICU goodbye, and we headed back to our home away from home: the cardiac step-down unit. I can't tell you how happy we were to get back over here. Though we had some wonderful doctors and nurses in the CICU, and had the chance to meet a lot of truly special families, there is a certain tension in the CICU that just doesn't exist in step-down. Just minutes after getting to Abby's new room, we were sitting on the floor with our nurse, NP, and Abby in a bouncer instead of the crib. If we can't be at home, I feel like this is a pretty good substitute. We were laughing and trying to make Abby happy by singing Rudolph the Red Nosed Reindeer - it was like a huge weight had been lifted.

We're getting to see more glimpses of Abby's personality returning, including lots of smiles during the day and even her first sleep laugh! It's been so good to see our sweet girl having happy moments again after such a rough month.

Unfortunately though, Abby is still having some odd spells of being completely inconsolable for hours and hours on end. Before being extubated this last time, she never had anything even remotely resembling these fits - and the doctors all seem to agree that something's up (I know some babies go through periods like this, but nobody seems to think this can be explained by anything "normal"). They don't know that it's all withdrawal related, so Neuro is getting back involved to make sure that everything she went through post-heart surgery (e.g. the code event, cpr, etc) didn't cause some sort of issue. She'll be having another MRI, as well as a sleep study, to try to get to the bottom of her irritability and breathing issues.

We're looking forward to family coming in for Christmas. Though it may be atypical, we're going to make the most of our first holiday season with our little bird!

18 Weeks Old

Abby has started doing much better in the last couple of days. She was able to be weaned off the nasal cannula yesterday morning and finally is able to paw freely at her tube-free face! She has developed a new love of chomping on her fingers, and she still needs to work on not scratching up her sweet little nose and cheeks. 

She's finally happy being held again, and she's spending more and more time awake and not furious. I still wouldn't say she's happy, and she's still fussier than usual, but it's a huge step in the right direction. 

Once we can get her completely off of some of the meds she's on she'll be ready to move back to the step-down unit! After almost a month in the CICU, it will be so nice to get back to our home-base. 

4 Months Old

Dear Abby,

You are 4 months old today! I prayed that today I would be able to tell you that things were so much better, but I can't do that yet, sweet baby. 

Since last month, so much has happened. You have had three surgeries and your daddy, puppies, and I moved to a new house. We also celebrated your first Thanksgiving! Though you were still in the hospital, and recovering from open-heart surgery, we watched the Macy's Thanksgiving Day Parade together and you got to meet some more of your aunts and uncles. 

Some truly scary stuff happened too though, Abby. The day after Thanksgiving I thought we had lost you. The doctors were trying to help you when your lungs weren't working very well, but instead of fixing the problem, your heart rate and oxygen saturation plummeted. I remember looking frantically between your face turning blue and your falling heat rate on the monitors and being overwhelmed with a single thought. She's dying.

Almost in response to my thought, the doctors hit the code alarm while a nurse all but dragged me out of the room. I was trying to call your daddy, but I couldn't figure out what to do. The nurse called him while the social worker took me by the shoulders. She asked someone to call the chaplain, and I panicked, "not the chaplain, anyone but them, the chaplain only comes when something terrible has happened." 

I cried and cried while doctors and nurses were running around, calling out different instructions. At one point, somebody yelled for quiet, and the whole pod instantly fell silent. I remember nothing between that and one of the residents coming out to tell me that you were still alive. There had been a point where they couldn't find your pulse and had administered chest compressions, but you were alive. 

It was terrible, Abby, truly terrible, but I am so thankful that you made it through.  If I didn't treasure every moment with you before, I certainly do now.

You were kept on the ventilator from then until two days ago. The doctors prepared you as best they could to be taken off the ventilator, and everyone was very hopeful that this time would be a success. But, as we've come to expect, nothing is ever that simple. You are still struggling with one of your lungs collapsing. It's difficult to pinpoint the root cause, but lots of measures are being taken to try to get it to inflate again, and avoid a repeat of what happened a week and a half ago. I won't lie though, when I walked back in the room yesterday to find them doing lung treatments again, my heart dropped. Not again, please not again. Luckily, so far you're doing ok with them. You're struggling through withdrawal from all of the sedatives they had to have you on when you were intubated, but it seems like like little by little you're getting more comfortable. I think these next few days will be very important in understanding your healing process from here on out.

Though this month has been so so hard, Abby Wren, I am more thankful than ever to get the opportunity to love you. Yesterday marked the one year point from first finding out you were going to be joining our family, and though nothing has happened the way I would have anticipated, I look at your beautiful face each day and am reminded what a blessing you are - an absolute miracle.

I love you, Aberdeen. Keep fighting, baby bird.

Love,

Your Mommy

17 Weeks Old

Abby is now 17 weeks old and has made a lot of progress in the past couple of days! Lots of fluid has come off and she is back to her normal size. Yay! They've started doing pressure trials in anticipation of extubating early this week, fingers crossed. This involves setting the ventilator to mimic being extubated (they can't just turn it off, or Abby would effectively be breathing through a straw) - that way they can see how ready she is to extubate with the security of having the ventilator already in place. So far she's done well enough to make them happy. Another yay!

Hopefully, now that she's had time to heal, she won't face the same respiratory struggles she dealt with previously.  She's been slowly weaning off the sedatives, and we've gotten to see her eyes more and more without her being super agitated. She's been bound and determined to pull out all of her tubes and wires, so she has to wear soft restraints - which at first we were really sad about, but they actually seem to help her stay calmer. We are hopeful that this next extubation attempt will be successful and that we can start looking at moving to the cardiac step-down unit soon!

Thank you for all of your kind words and thoughts in regards to Jameson's post earlier this week. Though these were sentiments we've discussed at length, we're never really sure how other people will react to the feelings we've had to contend with throughout this process. It's really encouraging to hear such positive responses. It helps us lift our heads up a little higher and allows us to be honest in a situation that involves a lot of doubt and insecurity. The love that has been shown our family is truly astounding. Thank you, a million times over.

Abby will be turning 4 months old this week and I pray that I'll be able to update with lots of good news!

Aaaaand, for your viewing pleasure - this is what happens when your kid has heart problems and you get a cold:

General Updates and "Embracing the Suck"

Abby has had a pretty good past 48 hours - though she is still intubated and sedated. A common side-effect of surgery is fluid accumulation and retention, which Abby has been dealing with in spades. Her poor little belly has been puffed up to seemingly twice its normal size, which is putting pressure on her lungs and causing them to work even less efficiently. Before they can talk about attempting extubation again, they have to get the fluid off. This is a very tricky process because of her hypertrophy. Normally they would just administer a ton of diuretics and call it a day, but diuretics increase Abby's outflow obstruction - so they have to try a little of this and a little of that and hope the fluid comes off. 

Normally, I don't have trouble getting through the days here at the hospital. I hold Abby and watch shows on the iPad or play with Abby while she's in the crib. We do tummy time and work on bottle feeding, and generally the days go by pretty quickly. Such is not the case at the moment. You can only stare at your unresponsive child for so long before it gets really really depressing, and there are only so many things I can do in her room to stay distracted - as Jameson would say, I think I have found the end of the Internet.  I understand why she needs to be in the state she is, but it still really sucks.  Which brings us to some thoughts from Jameson about our past week:

___________________________

"Embrace the Suck...."

 

By Jameson Locklear

 

In the immortal words of Col "Curse" Platt (say it fast, it'll make sense), "embrace the suck, gentlemen." Usually delivered after getting news like "you're going to be working 14-hour days until we deploy for four months" or "we're going home, but we have an exercise for 72 hours right when we get there." In other words, it was a challenge to move past your frustration, anger, and embrace the terrible-ness of the situation you're in. It was also a tacit acknowledgement that what he just asked us to do was ridiculous and annoying and shouldn't be happening, which sometimes was all that we needed. And that's where we are now.

 

Aberdeen is super-fluid overloaded right now. So much so, that her mother and I have been hesitant to really take pictures, because maybe we just don't want to remember it. They are slowly getting her to pee out the excess fluid, but it is a painfully awful waiting game. She just looks so uncomfortable laying there intubated and huge with fluid, but she's getting better. Last night was really good and I'm happy about that.

 

I wanted to write about last Friday's "code" and its effect on me. Bethany was kind enough to comply with my request.

 

When she "coded" last Friday I had just dropped off my brother at the airport and I received a call from Bethany's phone, but instead of her voice it was a nurse telling me that there had been an emergency and Bethany needed me to get there as soon as possible. At the time, I was an hour away and with little information. What's the best thing to do when you don't know what to do? Make more people concerned and worried. So, I started calling people. Once all of my calls were completed I started thinking.

 

At least it's over and she's not suffering anymore. Maybe we can go away for a while. I wish that I had gotten to teach Aberdeen how to throw a softball. I wish I had known how she spoke and what she was interested in. I'm so glad that I don't have to keep going to the hospital all of the time. Please don't let her die...but if she's going to, please don't just torture her for the next few months and then have it happen.

 

I was overwhelmed. I decided to call the hospital and they got me in touch with Bethany. She told me that Aberdeen was still alive and that they had done chest compressions. That was overwhelming as well. I finally got to the hospital and saw both Bethany and Aberdeen. Then the physical exhaustion set in. I don't know if I've been that tired ever.

 

This Monday we found out that the chest compressions separated her sternum and she had to be opened back up. I was so angry. I thought someone had missed something. Turns out they didn’t, but it was the second most difficult day for me of Aberdeen’s life.

 

Now, I'm doing alright. I'm embracing the suck. This is not fun. It doesn't matter that it could be worse, this is bad enough.

 

All I want is to find out what Aberdeen's favorite movie is and why. What food she likes the most. What she believes about herself and her experiences... how has all of this affected her? Someday.

Out of Surgery

Abby's procedure went fine and her sternum has been rewired. The breaks in the wires caused Abby's sternum to separate by an entire centimeter - which multiple cardiologists told us they'd never seen before - apparently she received really good CPR on Friday. Hopefully now that this is fixed she will finally start to heal. Please pray that everything goes smoothly for the next few days so that we don't have to deal with anymore setbacks on Abby's road to recovery. Thanks.

Surgery #4 - Sternal Rewiring

We just found out that when Abby had to have chest compressions done on Friday that the wires that were holding her chest together broke. She will have to go back to the OR to have her chest rewired shut - the procedure will most likely be early this afternoon.

16 Weeks Old

This past week has been the most difficult of my life...and I'm a lot older than 16 weeks.

Our sweet Abby girl is in kind of a rough place, where the doctors don't seem very sure of what is going on or what would be the most helpful for her. She's had a few more "events" that thankfully were caught before they became life-threatening. It appears that when she gets overly worked up, she either holds her breath or her airway closes off, and she stops moving air altogether. It's the same sort of thing that she did the day before her g-tube surgery, but the episodes are becoming more frequent. They currently do not know what is causing this or how to avoid it, but are working on a plan. Part of that plan involves dong another examination of her airways. When she had her bronchoscopy done a week and a half ago, the pulmonary team was unable to complete their scope (due to her desatting and needing to be intubated) and didn't get a full picture of her airways. So, the next time they extubate they may do so in the OR in conjunction with trying another scope. They are also talking about exploring whether or not there may be a neurological component to the episodes. What the team does agree on, is that the issue seems to be multi-factorial and that while they will look for one, there may not be a clear cut answer. Until then though, she has to stay sedated so she doesn't constantly gag on the endotracheal tube or get herself so worked up that she stops moving air again. Seeing her sedated for so long is very hard on us.

This week, just looking at Abby has made me cry. She looks better this afternoon now that some of the swelling in her face has gone down, but for the last few days she has looked more like the baby we saw a few hours after birth, not the spunky Abby we've gotten to know over the last 16 weeks.  I'm thankful that she's starting to look a little more like herself again, and I pray that things start to improve so we can begin attempting to collect answers and hopefully hold our baby girl again soon.

It's been a terrible afternoon

Abby's ok now, but has been intubated again and put back on heavy sedation. Her breathing has been getting progressively worse throughout the day, resulting in the cardiologist recommending they put her on cpap instead of the high flow respiratory support. They think one of her lungs may have collapsed, and when they started the cpap her heart rate plummeted. They called a code and I was ushered out of the room as at least a dozen others ran in. They had to administer epinephrine and do chest compressions, but they got her heart rate back. Though she was able to breathe, she wasn't doing so very well, and they decided to re-intubate her. Her numbers are looking good now, but we are very rattled.

Post-Op Updates

It's been two days since we handed our baby girl over to the cardio-thoracic surgical team to fix her tiny heart. She made it through the surgery beautifully, and though her recovery has been slow-going, everyone has assured us it's going well. 

They have kept her heavily sedated since she returned from the OR, which has been hard to deal with, but we understand that she needs time to rest and heal from such an intense procedure. She came back from surgery covered in more tubes and wires than I could count (even more than after neurosurgery, which I didn't think was possible), and was on more intravenous drips than I would have ever expected. The scariest of these are two chest tubes that are draining fluid buildup from her chest cavity - eventually they will be surgically removed, but it may be a while before they're able to do that. Late last night they finally were able to start removing a few tubes (she was finally extubated and switched to the high-flow nasal cannula for oxygen support), and have started to wean down some of her medications. This has been a much more prolonged period of recovery that after her previous surgeries, but they want to give her the best chance to heal successfully and not put too much strain on her little body. 

Hopefully now that things are progressing, we will get to hold her soon and see some glimpses of Abby's personality returning. 

Thank you a million times over for your continued prayers.

Out of Surgery!

We were just visited by Abby's surgeon, and everything went well and there were no surprises. She was on by-pass for approximately 2 hours (which, if you haven't looked up, do - it's the most amazing thing), and he was successful in closing both the ASD and PDA. It will still be at least an hour before we can see her. 

Thank you, thank you, thank you for the amazing amount of prayers that went up for our sweet girl today - she can definitely still use them as she recovers, but we truly appreciate how much love has gone Abby's way already!

Surgery #3 - Open Heart Surgery

They took Abby back for her open heart surgery at about 7:45 this morning, and we just got word that they've gotten started at 9:30am. 

We talked to the surgeon this morning, who said that he'll be closing Abby's ASD and PDA (but leaving the VSDs alone, as that would complicate the surgery greatly, and they don't believe they're causing any problems). In the grand scheme of open heart surgeries, an ASD closure is considered fairly straightforward, but Abby's case is made considerably more difficult by the severity of her hypertrophic cardiomyopathy. They will be taking extra measures to protect her heart during surgery because of this, but the surgeon and anesthesiologist expressed that this was very concerning to them.  They don't necessarily think that this surgery will solve all of her breathing problems, but we hope that it will at least help.

Abby's blood oxygen saturation levels started dropping again last night, so they put her back on oxygen support. Though this wasn't what we were hoping, it did give her a break from working so hard going into surgery today. She was sucking on her pacifier again and seemed pretty content.

Thank you to everyone for your ongoing prayers!

15 Weeks Old

Abby is now 15 weeks old! She's had a less eventful past couple of days and was weaned off of the nasal cannula last night. With that and the NG tube now gone, this is the first Abby hasn't had anything stuck to her face for more than a few minutes! She is very much enjoying pawing at her face sans mittens and is having to learn how not to claw out her eyeballs. We love getting to see her awesomely chubby cheeks.

Though Abby's numbers have evened out considerably since Thursday, she is still working too hard and hasn't completely bounced back to where she was on Tuesday. Because of all this, Abby's open heart surgery is scheduled for tomorrow. If everything goes as planned, we're looking at a late morning start-time and for the surgery to last 4-6 hours. Though we aren't looking forward to tomorrow, we hope that it helps our sweet girl and that she won't have to work so hard to simply exist anymore.

We're praying for the surgical team, the anesthesiologists, the doctors and nurses who will be caring for Abby post-op, and of course, for our baby bird. 

It was a rough night....

Abby girl had a particularly rough night last night.  They were able to get her CT scan done later in the afternoon, but the sedatives they were giving her caused her blood pressure to drop a lot. While they were working on administering extra fluids to bump up her blood pressure, they decided not to extubate. Unfortunately, Abby did not respond well to being intubated once they started weaning her off the sedatives. Her heart rate, respiratory rate, and temperature spiked a few times throughout the night, culminating in a heart rate in the 240s, respiratory rate over 100, and a 105 degree fever. The cardiologist finally just told the respiratory team to pull her tube despite her blood pressures, and she finally started to even out. She's still on high-flow respiratory support and back on sedatives, but she finally seems comfortable. 

Needless to say, nobody was very pleased with how she did overnight, and since pulmonary didn't come back with anything conclusive from the bronch, they're talking open heart surgery in the next week. They want her to be able to go home, and are pretty sure they've exhausted all other options now, so heart surgery it is. 

We don't have a schedule for anything yet, but ask for prayers that things go smoothly leading into what will be a very hard day for all of us. 

Out of Surgery

Abby is out of surgery and everything went pretty well. So far it sounds as though the g-tube placement was uncomplicated and they'll have results from the bone marrow samples in a couple days. The bronchoscopy wasn't entirely successful because of her need to be intubated, but from what they could see, their observations are inconclusive. They saw some things that were odd, but aren't sure whether or not they're concerning at this point. They couldn't do the CT scan of her lungs in the OR, so she is still sedated and intubated while we wait for them to be ready for her. Hopefully after that they will be extubate her, but we don't really know yet. 

Thank you for all of the prayers, hopefully the next few days will be uneventful as she recovers.

Surgery #2 - G-Tube Placement

Though Abby misbehaved yesterday and found herself back in the CICU after going into serious respiratory distress, it looks like everything is a go for today.

At approximately 12:30 this afternoon, Aberdeen will be having her g-tube surgery as well as a bone marrow aspirate and biopsy, a bronchoscopy, and a ct scan of her lungs. We are hopeful that somewhere in there will be an explanation for what is ailing our girl.

We've been appropriately nervous about this afternoon, but after a very restless night (for both me and Abby), I'm feeling especially anxious. Please pray that Abby does well through her procedures and has an uneventful recovery. Thank you.

14 Weeks

Brief update:

We have officially moved. Whew. It was a crazy crazy weekend, but it is done and we're working on getting unpacked. Even though the timing was not ideal, we are very happy with our decision - especially because it's looking like we may be inpatient for quite a while.

Abby's respiratory effort has not improved, and may even be a little worse now. Her white blood cell count keeps climbing, but they can't figure out a concrete reason for it. Hematology has gotten involved, and they are exploring lots of possibilities - some of them pretty scary. We're praying that the lung evaluation she'll have along with her g-tube placement on Thursday will shed some light on what's going on.

Abby still seems herself, and got to meet her Auntie Megan this weekend! Megan was a huge help with the move and is already such a sweet, wonderful auntie. 

Please pray that all goes smoothly on Thursday and that the doctors are able to find some explanation for what is going on with our baby bird.

Cath Complete

Abby did great during her heart catheterization today. Unfortunately, the cardiologist was unable to fix any of her problems in the process. They were able to measure the pressures in different areas of her heart and in her arteries, which was helpful in explaining which issues are the most problematic in Abby's unique case.

Here's where it gets complicated, and I will do my very best to explain everything...

What they found is that the blood flow across her ASD (a hole between the two upper chambers of her heart) is causing a pressure ratio of 1:2.5, when it should be 1:1 - this is a significant difference. This causes an overload of fluid in the capillaries around her lungs, which in turn, leak out, and they have to give her diuretics to expel the fluid. If her only problem were the ASD, they would simply diurese her and monitor her hydration levels. But, it's Abby, so nothing is that easy. The diuretics increase the outflow obstruction caused by her thickened heart walls (hypertrophic cardiomyopathy), so they have to give her more beta-blockers to keep her heart from overworking. This balance is nearly impossible to achieve, and ultimately means that she will have to have open heart surgery to close the ASD. What they are trying to determine now is when that will need to happen. The cardiologists are hoping that when pulmonary does their exam they will find something else that explains the increased pressure in the arteries around her lungs that can be fixed so that they can continue to put off heart surgery. If they don't, the pressure in her arteries could cause pulmonary hypertension - which is irreversible, and we'd probably be looking at heart surgery in the next couple of months. The bigger she is, the better she'll tolerate open heart surgery, so they really really want to put it off as long as possible.  

Though Abby did great during the cath, she had some trouble coming out of anesthesia, so we're spending the night in the CICU. She's just having some temperature fluctuations and increased work of breathing, and they felt more comfortable having her closely monitored overnight. Hopefully we'll get moved back to the step-down unit tomorrow. 

There was some question of whether or not she would be staying inpatient between the cath and her g-tube surgery next week, but now we know she will definitely be staying. Her white blood cell count has been elevated since admission, and it hasn't resolved itself, indicating that they still have some exploring to do to determine the cause.

Whew, that was a lot.  Here's our smiley girl shortly before heading back for the cath today: 

3 Months Old

Dear Abby,

You are three months old today, and it's been as many months since I last wrote to you. I've been, and am still struggling to find the words to adequately describe the time since you were born. Most importantly, I want to tell you that I love you. You are the most beautiful thing that has ever happened to me, and I treasure you more than I could have ever imagined. Feeling so strongly for you makes living our day to day even more difficult.  Because, baby bird, things are really hard right now. I hate watching you struggle, and I hate that I can do nothing to help you. It makes just existing painful. Today we have the nurse that we had your very first night in the CICU. I wasn't allowed to hold you yet, but he encouraged me to lean down over your crib and talk or sing to you - I will never forget that. But I haven't yet found the strength to sing to you without crying, and so many songs I hear make me burst into tears now. I didn't want any of this for you. I just wish that God would heal your tiny body, so that we can leave this hospital with you and never come back.

It has been amazing watching you grow and change over the last three months. After working so hard, you have now surpassed ten pounds and have grown out of your newborn clothes and diapers. You love to kick your legs and take walks down the hallway, but still hate sponge baths. We get to see a little bit more of your personality each day, and I am so proud of you and all of the strides you've made. You truly are miraculous.

We are getting ready for an extremely busy couple of weeks right now. This week, the doctors will look at your heart and lungs to determine whether or not there's anything we can do to be helping you more. Next week you will be having your second official surgery. I wish that I could stand next to you through everything and hold your hand, I wish you could know how fervently we'll be praying for you. Between your procedures we will be moving to a new house closer to the hospital. I didn't think I would care about leaving our current house until I sat in your room yesterday. The room your daddy and I spent so much time making perfect in anticipation of your arrival. The room I'd hoped you'd be spending lots of time in, laughing, smiling, and growing. The room that you've barely even seen. I know that we'll recreate your room in the new house, but something about it just won't be the same. I hope that someday you'll recognize that space as your home, instead of this hospital room.  

Though so many things about these last three months have been utterly heart-breaking, there is nothing in the world that makes me happier than seeing you smile. It helps me to believe that not everything you are experiencing is negative, that between all of the struggles, you still feel loved and cherished. I pray that you do. 

I love you so much, Aberdeen. You are my heart.

Love,

Your Mommy

We're going to have a crazy 10 days

We finally got the dates for Abby's cath and g-tube surgeries set and they are only ten days apart...oh, and we will also be moving within those ten days.  She will be having her heart catheterization this coming Tuesday, we are set to move on Fri/Sat, and she will be having her endoscopic g-tube placement the following Thursday. Because Abby is still exhibiting signs of respiratory distress, the ENT and pulmonary teams are also getting involved to assess her airways. They will be doing this during one of the procedures, so we won't have do another round of anesthesia, which is great.  We won't know whether or not we'll be coming home between procedures (just in time for the move) until after the cath. 

It should be interesting!

12 Weeks Old and working on a plan

Abby is 12 weeks old today! We are still hanging out at the hospital, but we're finally working on a game plan. Basically, despite trying some different things, Abby's work of breathing is still inconsistently labored. Sometimes she seems completely comfortable, while at other times she has a lot of nasal flaring, grunting, and abdominal retractions - indicating that something is just not quite right. In addition, she has developed a nasty cough that seems to be related to her NG tube/reflux. 

Yesterday we started working on a plan for either actually doing something or getting out of here. Firstly, we have decided that it is time to switch to a g-tube. It's been a very difficult decision to make, but her ability to feed by mouth isn't improving, and NGs weren't really designed for long-term use. We don't have a surgery scheduled, but are hoping it will be sooner rather than later, as Abby seems increasingly uncomfortable. Secondly, the attending cardiologist this week thinks it's time they got an actual look at her heart via a catheterization. This will allow them to see how much of a problem the holes in her heart (specifically, the ASD and PDA) are causing and better inform the doctors on what meds she actually needs, instead of just guessing. The procedure isn't considered a surgery, but still requires anesthesia. Our cardiologist is hoping they can coordinate the cath with the g-tube placement, but pediatric surgery doesn't seem to like that idea. Not much happens around here on the weekends, so we'll have to wait until tomorrow to get the ball rolling.  If they can get us in for either procedure this week, we'll stay; if not, we'll probably go home and come back. 

*I will update once we have a clearer idea of what we're doing*

On a completely different note, Abby got to spend Halloween here, which turned out to be pretty fun. The hospital passed out toys, the staff dressed up, and one of the nurses made hats for the kids in this unit.  I hadn't managed to get anything together for a costume before we were readmitted, but my mom made sure Abby was covered (with two outfits)! She made an absurdly adorable lamb (though I may be biased).   :)

11 Weeks Old and a New Diagnosis

Abby is now 11 weeks old and a whole 9lbs 10oz! While she is gaining weight steadily, we still aren't sure what is causing her breathing problems. They've run a lot of tests and she doesn't have any identifiable viruses or infections, but is still working harder to breathe than anyone would like. She likes to perplex us, this one.  We're hoping we won't be inpatient for too long this time, but who knows. They've been adjusting her meds to see if it makes any difference, but we haven't seen consistent improvement yet.

We did receive some interesting news though...

Shortly after arriving back at CCHMC we were visited by one of the genetic counselors we had met with during our first admission, letting us know that all of Abby's genetic panels had returned. After over six months of waiting and wondering, we finally have an answer: Abby has Noonan Syndrome, caused by a mutation of the KRAS gene. Noonan Syndrome is found in approximately 1 out of every 2,000 people, though only 2-5% of people with NS have the type Abby has, even fewer have craniosynostosis, and it would seem that Abby is the third person ever reported to have multi-suture craniosynostosis - establishing our girl as the super special nugget we've always known her to be.

The diagnosis of Noonan Syndrome explains nearly everything Abby has had to contend with since birth - from her specific heart conditions to her struggles with feeding intolerance. Though craniosynostosis is an atypical finding with Noonan's, it is not without precedent. Having this diagnosis also helps inform Abby's medical team of some things to look out for in the future: for instance, bleeding disorders are very common with NS, so she will need to have special tests run before every surgery to avoid complications. Otherwise, her present conditions will continue to be treated the way they would with any other member of the population. 

For me, it's comforting to know that there is one, over-arching explanation for Abby's medical struggles. One that we did nothing to cause, and could have done nothing to prevent. We've wondered since that first ultrasound what the puzzle would look like once completed - first it was Down Syndrome, and then it wasn't, next it was Pfeiffer Syndrome, and then it wasn't. I feel a lot of peace in finally knowing what it IS. It in no way defines Abby or what her life will be like, as the presentation of Noonan's varies widely, it simply helps us be better informed when considering her medical care. I feel like the puzzle has been solved. There aren't any missing pieces, it all fits, and now we can more fully appreciate the beautiful picture that is Aberdeen.

Along with receiving this news, this admission has been revelatory to us, in that we now feel sure of our need to move. We have found a place that cuts our current drive to CCHMC in half, and we hope to move in the next month or so. Though there are things that will be stressful about moving, we are confident that this is the right decision for our family and are looking forward to it.

As always, thank you for your continued thoughts and prayers.

aaaand...back to the hospital.

Abby has been readmitted to CCHMC after a few days of working very hard to breathe. When we called our cardiologist at the base (who also works at CCHMC), and he suggested that she may need to be admitted, I just wanted to cry. The first time we were home, I had completely reached my breaking point and was almost relieved when we were readmitted. At the time, we couldn't figure out why she wasn't growing or what we were doing wrong, and we knew that we needed help sorting out her feeding problems. This time it felt like we had things under control. We were physically exhausted, but Abby was still growing, so we were succeeding where we had previously failed. It really felt like things were going well, and we were so encouraged! Then, on Tuesday, as we were getting out of the car for a follow-up GI appointment, Abby started gasping for air. Her respiratory rate plummeted and her skin took on a strange, mottled appearance. She eventually recovered, but it was scary enough to send us to the cardiology clinic for observation. After a couple of hours it seemed like, though she was working a little hard to breathe, she wasn't in any acute distress, so we went home. We followed up with the base cardiologist the next two mornings when she continued to display increased work of breathing. Her oxygen saturation levels were lower than normal yesterday morning and it was decided that she would be admitted again. Although we suspect a respiratory virus is at play, there is also the possibility that her reflux is causing her to aspirate her food, which would be very very bad.

She has seemed ok since we arrived yesterday. Her oxygen saturation levels have been great again and nobody seems to know what's going on with her. We're still waiting on her viral screen to come back, but all of her other lab work came back clean. We did get some big news from genetics, which I will discuss in another post, but it doesn't have anything to do with these respiratory issues.

I'm not dealing with this admission well at all. I have to admit that maybe I wasn't doing as well at home as I'd thought either. I was getting irrationally angry with well-meaning people who simply didn't deserve it, but I think it was easier to focus my frustration on them than it was to actually deal with the stress of these last couple of months. Once we found out we were coming back, I had to take some time to work through the feelings I'd been squashing since before Abby's surgery, and I think I'm doing a little better now, but I just don't want to be here - I just want her to feel better so we can take her home.

Hopefully it will be soon. 

Here are some pictures of Abby being adorable at home even while not feeling well:

10 Weeks Old - Big Decisions

Abby is now 10 weeks old and we're working on figuring things out here at home...again. We've gotten to experience a lot of firsts these past few days: Abby had her first real bath in the baby bathtub - prior to this admission she still had her umbilical stump and needed sponge baths. She also spent her first night in her crib - she slept in the pack n play in our room last time she was home, and we're trying something different this time around. Gracie and Boone are very interested in her (Gracie seemed especially concerned during bathtime), and as long as Boone isn't barking, Abby is tolerating them pretty well! 

We're attempting to get a feasible routine going, since there's no such thing as a routine in the hospital, but we have to schedule pretty much everything around Abby's feeds. This can be complicated. I'd like to paint a picture for you of Abby's daily feeding schedule.

6am - start feed

8am - stop feed

9am - meds and start feed

11am - stop feed

12pm - start feed

2pm - stop feed

3pm - meds and start feed

5pm - stop feed

6pm - start feed

8pm - stop feed

9pm - meds and start feed

11pm - stop feed

12am - start feed

2am - stop feed

The idea is that she is being fed every three hours, which is fairly typical for a two-month-old. However, she cannot tolerate large volumes in the half-hour or so it would take other babies to eat, so instead she is fed over two hours, leaving only one hour between feeds. Eventually, the hope is that her tolerance will improve and she will be able to receive her food in less time. 

While Abby is on a feed she is connected to the feeding pump, which is on an IV pole. We can move her from room to room, but pretty much anything more than that is quite difficult. Which means that unless absolutely necessary (i.e. medical appointments), Abby (and thusly, one of us) stays at home during her feeds. When she is on one of her one hour breaks, we try to fit in everything that might make her sick while on a feed, like bathtime, tummy time, and sitting in the swing. We are also supposed to try bottle feeding to develop Abby's oral skills. It doesn't leave time for much else. 

When we're in the hospital, the nurses set up and stop all of her feeds, which allows us to just attend to Abby during the night. At home we take care of both, and Abby hasn't figured out how to coordinate her many nightly wake-ups with times that the pump is beeping/needs attending to (come on kid, get it together, right?). This means even less sleep than parents would normally get with a two-month-old. Hence, moving Abby into her room, and us taking turns sleeping in there with her. At some point one of us has to get some sleep.

I dealt with Abby's neurosurgery at five weeks fine. I've dealt with her ongoing heart problems and the prospect of impending surgeries fine. I've dealt with nearly two months in the hospital fine. For whatever reason, this feeding thing is where I crack. 

I know that compared to what some of our CCHMC friends are going through, this really isn't that dire, but like I said a couple of weeks ago, sometimes we have to admit when things are hard for us - this is hard.

There is also the stress associated with Abby's current feeding tube. What she has now is called an NG (naso-gastric) tube. The tube goes through her nose, down her esophagus, and empties straight into her stomach. This type of tube is not-ideal for many reasons:

1. It can move out of her stomach fairly easily if she vomits (which she does forcefully and frequently) and accidentally end up dumping the food into her esophagus, which is not safe. There is no way for us to know if the tube has moved without an X-Ray unless we figure it out the hard way (a dramatic increase in vomiting). 

2. It impedes development and will become a greater issue as she becomes more mobile. She currently has to have her hands covered much of the day to keep her from grabbing and pulling out the tube. This is discouraged by all of her therapists, but...

3. Replacing the NG is a traumatic experience for her that requires multiple people to achieve. Soon I will be home by myself with Abby a lot and I physically cannot drop a new tube on my own.

4. It must be taped to her face. Part of the downside to this is purely aesthetic, but it is also simply not good for her skin. The tape cannot get wet or it starts to peel off, which makes bathing difficult. It also gets disgusting if we don't catch her vomiting in exactly the right way. Replacing the tape is also an ordeal. 

5. It may be exacerbating her vomiting and reflux.

So what other options do we have? We can switch to a G-tube (which we'd planned on doing before we had to have our surprise neurosurgery). The G-tube is  implanted through her stomach, but can eventually be removed If she grows out of her need for it. The G-tube really only has one downside we can come up with, but unfortunately it may be a big enough one to cancel out all of the pros: it requires surgery and thusly, anesthesia. Cardiac patients, like Abby, are at much higher risk for complications due to anesthesia than the general public. We already know that Abby is going to have to have a number of absolutely necessary surgeries, can we in good conscience put her through another one?  It's something we're really struggling with.

While we were still in the hospital I was pretty sure I didn't want to risk getting the G-tube, but now that we're home, I'm leaning more toward thinking that we may need to. I want to do what's best for Abby, and I am having a really hard time figuring out what that is.

The other big decision we need to make is whether or not to move. Moving would put us closer to CCHMC and ensure that one of us could still get home to take care of the dogs if we end up inpatient again. We discovered during this admission that the dogs do not fare well if one of us is not there daily, and it's important to us that they not be forgotten in all of this. Unfortunately, moving would mean distancing ourselves from the great community of friends we have developed up here and would require the stress of, well, moving. 

Please join us in praying about these two decisions, as they are weighing heavily on us. 

As always, thank you for all of the prayers, help, and support.

2 Months Old and Going Home!!!

So, I wrote an entire post on Abby's two-month birthday that accidentally got deleted, so we're playing a bit of catch-up today, but it's worth it because we are going home!!!!

At two months old, Abby loves smiling at lights and windows, playing with her ears and hair, and taking long naps! She very much dislikes having her nose suctioned out and still doesn't care for diaper changes. She has become much more interactive lately and is starting to develop quite the little personality.

Abby has tolerated her goal feeding regimen for a few days, and they've decided that whatever changes we make from here on out can be done at home (as long as she's doing well, of course)! She has surpassed 9lbs now, showing consistent weight gain for the last two and a half weeks - which is amazing considering that she gained almost nothing for six weeks.

We are more confident going home this time around, since (with the exception of, you know, neurosurgery) this admission has been all about getting to understand Abby. Jameson and I feel like we get her quirks and eccentricities better and have a better idea of when to be concerned and when to let things slide. Going home is still nerve-wracking, but we're optimistic that things will go more smoothly this time around! We'll have lots of doctors appointments coming up, so Abby will still be closely monitored without having to be inpatient, which helps ease our worries a little.

Once we're home and settled in, I'll update more on our short and long-term plans!

Thank you for all of your thoughts and prayers!!!!

8 Weeks Old - Put a Bow On It

How Aberdeen is Doing:

She has finally gained some weight! Abby is now a whole pound above birth weight!!! She is still vomiting a fair bit, but now that she is actually putting on some weight, the doctors aren't quite as worried about it. She has started smiling a lot this week and even rolled from her tummy to her back during PT! It's been a week full of milestones! The doctors will want to make sure she can consistently gain weight on what will be our home feeding regimen before letting us leave, but it seems like that is now in the foreseeable future.

How We're Doing:

Okay.

After waiting for three and a half weeks, we finally got into the Ronald McDonald House on Thursday. Which, if we weren't already, officially makes us "hospital people."  For those not familiar with this wonderful program, RMH is an apartment-like set-up for people whose kids are in an adjacent hospital. They provide housing and some meals free of charge and really go out of their way to make things a little easier for families in difficult situations. Next time you see one of their donation boxes, I encourage you to drop in some change, as what they're doing is invaluable.  

Because getting back to the house has been so hard, we've started discussing the prospect of moving somewhere in between Cincinnati and the base. So far, family and friends have been caring for our dogs (I've seen them a total of three times in the last four weeks), and we really miss them.  Not being able to get home on a regular basis is taxing, and we simply don't think it's feasible to continue operating this way long-term.  We're early in the process of looking into moving, but wouldn't mind help if anyone knows of opportunities to rent in the Springboro to Mason area. 

Emotionally, this admission has been very different than our first. Getting Abby's feeds and failure to thrive under control has been a painstaking process, that has ultimately required a switch to straight formula. While it was something I suggested trying, and am thrilled is working, it's also very hard to accept that, as her mom, I couldn't provide her with what she needed. I already struggle with feeling like I somehow failed her while pregnant, and that I'm continuing to fail her even now. Genetics has assured us that this isn't the case, that her conditions were just something that happened, but I can't help but assign myself some blame. It's just hard. Both Jameson and I do our best to put a positive spin on things, as much for other people's benefit as our own, but sometimes we have to admit that it's just hard.

Jameson did some cathartic writing this week that he requested I share. It's hard for even me to read, but it's an accurate description of how we often feel, and especially how he feels as he tries to navigate splitting his time and attention between here and work.  He's been an amazing dad and husband through everything, but I know the stress is starting to take its toll. If you pray for Abby, please pray for him as well. 

________________________________________

From Aberdeen's Father

My daughter has craniosynostosis, hypertrophic cardiomyopathy with an outflow obstruction, a large aortic septal defect, a persistent patent ductus arteriosis, and a small ventricular septal defect. She had neurosurgery at 5.75 weeks of age. She has been fed through a feeding tube or an IV since birth. Her endurance is so limited by her heart condition that she cannot feed by mouth enough to live. She has lived in a hospital for 43 days of her 53 day life. My wife has lived in the hospital with her the vast majority of that time, which has involved CT scans, an MRI, dozens of echocardiograms, and screaming IV placement sessions, 0400 heel pricks for blood we know will hemolize before the test can be run, vomiting while food is pumped into Aberdeen's stomach, and other instruments of pain. I cried in the parking lot yesterday after telling my friend that I will likely be moving 35 minutes south of where we live to be closer to the hospital. I’m a grown man. My adrenaline is wearing off.

Everytime I am asked "how is your daughter doing?" "how is her mom doing?" all of the above runs through my mind. How do I give you a 25 second answer that ends on a happy note? How can I be honest about how we are doing 37 times a day without completely losing my ability to function in a work environment? "Well, she had brain surgery two weeks ago and we've been in the hospital for 3.5 weeks. Nope, her heart condition won’t be healed anytime soon.” Awkward pause, while the person figures out what to say… “But her head looks good,” I say to give them an escape. Then, rinse and repeat everyday hour of everyday for the longest 7.5 weeks of my life. 

Aberdeen isn’t going to die tomorrow or this week, nor is she going to get better tomorrow or this week. I can’t put a bow on this situation for you that allows for a five-second CNN positive soundbite. Am I angry at God? Nope, not really. I knew (better than most) that this was a chance when we decided not to adopt and try to have a biological child. I’m fine with learning from this situation for the rest of forever. Did I push Bethany to have a biological kid? Sure did. Do I feel like it was my ego that contributed to Aberdeen’s problems? Definitely. Had I just been alright with however long it took to adopt we may not have been in this place right now. Does my lack of control (perceived or otherwise) make this even more difficult? Yep.

I was good at my job, but I am getting worse. I am like a drug addict who can’t shoot-up for ten hours a day, while dealing with billion dollar decisions. My temper is getting shorter.

And yet, like a high school student wanting to add a killer conclusion to my five-paragraph essay, I still want to give you a happy ending.

Jameson took this picture while driving back and forth from the hospital. Seemed appropriate.