9 Months Old

It’s hard to believe that our little Super Millie is nine months old already. Time is flying by at an alarming rate.

Health-wise, Millie is doing really well all things considered. In February we took her in a few months early for her cardiology checkup because we have been worried about a barky cough she’s had since the hospital. Also, the cardiologist we had been seeing left so it seemed like a good time to get set up with the new one, who is actually the cardiologist that diagnosed her congenital heart defect (CHD) in utero.

Prior to her appointment we were asked to do a Holter Study, which is a test where Milllie wears a heart monitor for 24 hours and we make notes about her activities. It’s not easy keeping a very mobile, nearly 8 month old (at the time) from removing her own monitor leads. Fortunately, she only succeeded once on purpose and once by accident, so we got a good picture of her heart rhythms throughout a typical day. What we learned is that due to the location of her repair, Millie’s heart is still pacing from a different part of the heart than normal. As a result she has a very low heart rate. Her heart rate ranges from 54-126 beats per minute with an average of 82/min. I believe a normal infant heart rate ranges from 80-160/minute. This is something that may correct itself over time or may not. There is really no way to know. Her cardiologist said its nothing to worry about now, but I find it very unnerving. I find myself checking her breathing A LOT while she sleeps.

The rest of her cardiology checkup and tests went fine. Her repair looked good on the echocardiogram and seems to be growing with her. Her heart function also looked good on both the echo and EKG.

The cardiologist could find no cardiac reason for the cough so she sent us back to Millie’s ENT and arranged for us to see a pulmonologist. We saw the ENT about two weeks ago and he did another endoscopy to check Millie’s vocal cord paresis, which still looks nice and healed. So he gave Millie a two week trial prescription of Zantac to see if maybe reflux was causing the cough. Because her cough isn’t constant, it’s hard for me to say whether that made a difference.

We see the pulmonologist today to have Millie evaluated for primary ciliary dyskinesia. It’s a very rare condition that sometimes occurs in conjunction with the heterotaxy syndrome (her misplaced organs we sometimes refer to as situs ambiguous) Millie has in addition to her CHD.

I’m very nervous for this appointment because I don’t know what to expect. I know there will be blood work. But I’ve heard that there is also the chance of a fairly invasive lung biopsy to diagnose this. I’m worried. (Hence the late night blog post after months of nothing. Sorry about that, by the way.)

Developmentally, Super Millie really lives up to her name. Much like her older brother, this girl is a rock star. She’s been crawling for months now, has been pulling herself up and walking along furniture for close to two months and over the last few days has been standing up straight and balancing on her own. She is VERY close to taking those first steps. Which is alarming for me, because she already gets into enough trouble while crawling. She says Mama, Dada and her own version of Tucker. I think she tries to say dog sometimes when referring to Billy. She’s picked up some baby sign language and can ask for milk and tell me she’s “all done.” Her fine motor and problem solving skills are ridiculously good, which is why she is so very adept and getting into or at pretty much anything she wants. Trouble with a capital “T” for sure!

She plays “So Big,” peekaboo and hide and seek. She claps her hands. She really loves music – both making it herself and dancing to it. This girl’s got some serious rhythm. She “sings” herself to sleep when she’s tired.

Millie’s fifth tooth is coming in now. They’ve been coming in pretty fast and furious. Which for Millie means some general fussiness in the evenings for a day or so, then an hour or even less of pure anger and frustration, and suddenly there’s a new tooth. In addition to using them for eating, she also enjoys chewing on furniture and people’s feet (both her own and others’).

She is eating pretty well considering our rough start in that area. When it comes to baby food, she enjoys veggies over fruits and meats. We’ve just started some finger foods as well as letting her have tastes of some of our more easily chewable foods. She seems to be enjoying that. She did go through a period where she really liked taking bites of mine or Daddy’s M&M cookie ice cream sandwiches in the evenings, but she seems to be over that now. (We’re fine with that. More for us.)

Because we haven’t had to use Millie’s g-tube in months (yay!) we had hoped to get it removed after the cardiology visit if all went well. But with the possibility of more tests by these other docs and who knows what possible procedures, we held off. But boy am I excited to get that thing out soon! Although she hasn’t succeeded since the one time at the end of December, Millie is very persistent about wanting to remove it herself. I also worry constantly that with all her climbing and moving that she’s going to snag it on something and pull it out accidentally. Even though it’s not hard to take care of (I flush it once a day), her desire to tug at it is a constant source of stress for me.

She had her nine-month checkup with the pediatrician last week. It was mostly a non-event. She got a flew booster and the doctor pretty much used her as a teaching aid for a nurse practitioner student that was following him. It’s funny, with Tucker these well-child visits were a huge deal to me. With Millie, they almost seem pointless. The doctors don’t do much when compared to her other checkups and even when I do have questions, I usually forget to ask them.

But it is nice to get her growth stats, which were as follows:

Height: 27.5″

Weight: 17 lb. 4 oz.

Head: 18″

Basically, she’s just under average for height, relatively small as far as weight and has a pretty big head. About what we’d expect given her health issues and genes (Glenn and Tucker have big heads too).

She’s strong and smart, full of personality, and as far as we’re concerned, practically perfect in every way. (But a few prayers wouldn’t hurt as we head to see another new doctor today.)

March 17, 2015 at 1:34 AM Leave a comment

Once upon a dream.

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Millie is doing so well. She’s growing. She’s meeting every developmental milestone. She’s one of the happiest babies I’ve ever met. Her personality is really starting to shine through now too. She’s just too darn cute. I can’t get enough of her.

In my wildest dreams I couldn’t have imagined she would be doing so well after all we’ve been through. But even knowing all that, some days I just can’t shut down the anxiety. Tomorrow is her next follow-up with the cardiologist. I’m sure everything is fine, but I can’t stop worrying that they’ll find something wrong. I’m trying. I’m really, really trying to turn it off.

Last night she was tired and a little fussy before her last bottle so Glenn was cuddling her and walking around the house singing “Once Upon a Dream” to her. Millie is starting to vocalize a lot now, so she was making the cutest little squeaky noises back to him. Overwhelmed by how blessed we are, I started crying (as I tend to do now even more easily than before). I can’t help myself. Everything is still so overwhelming. The joy, the fear, the worry, the sadness, the excitement, the shock, the relief. It’s all just too much some days. Even now.

So, if you think of it, say an extra little prayer tomorrow that Milllie’s checkup goes well and her little mended heart looks good.

October 14, 2014 at 10:07 AM Leave a comment

Living at the hospital.

Millie and I have been living at the hospital for six weeks now. It’s been an exhausting and pretty surreal experience for me. Millie, on the other hand, has never lived anywhere else so this (sadly) is her normal.

In celebration (?) of our six week milestone, here’s a bit of what living in a hospital is like.

First you’re born at the hospital.

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Mom survives her surgery only to get hooked up to instruments of torture every three hours forever (if you’re really committed you’ll pump every two hours).

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Baby Millie also gets hooked up to lots of things. This was just the beginning.

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On the bright side, there’s room service.

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Millie and I have lived in six different rooms so far in the hospital. Sometimes together. Sometimes separately.

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One of my rooms was even in the building above a big landslide during our rainstorms a few weeks ago.

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The monotony and sadness of living at the hospital is sometimes interrupted by enjoyable/memorable moments. Like a visit from the Teenage Mutant Ninja Turtles.

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Or, a date night hosted by one of the volunteer groups.

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(That’s Glenn’s foot in the lower right. And don’t worry, I pumped and dumped after drinking the wine.)

But mostly, living at the hospital is lonely and exhausting and stressful and very often sad. Even though there’s snuggle time, like this, it’s hard snuggling when your baby is always connected to wires and machines.

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Here’s hoping we’ll be home soon.

July 17, 2014 at 12:02 PM Leave a comment

Eat. Sleep. Poop. Repeat.

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That is pretty much what is supposed to happen in the life of a newborn. Apparently, Super Millie didn’t get the memo. She does great with the sleeping part. She had been doing great with the pooping part. But the eating part isn’t coming so easily. And the attempts to help with eating are disrupting the pooping. In short, things are not going as well as we’d hoped and we’re still in the hospital. 

It’ll be three weeks today since Millie’s open heart surgery. As I’d mentioned previously, medically her recovery from the heart surgery is going remarkably well. So the only thing we’ve been working on eating. We had been warned that this is what would keep us here in the hospital and that was no exaggeration. We’ve spent the 2+ weeks since leaving the CVICU trying to do just that. 

Unfortunately, we’ve run into a few road blocks along the way. Millie worked super hard to drink the honey-thick formula by bottle. But it takes a lot of work for a newborn to eat like that (imagine drinking cream of wheat through a bottle) so she’d tire quickly. After working for nearly two weeks we were never able to get her to take much more than 40% of her feeds by bottle. In order to get rid of the NG-tube and go home, she would need to take at least 80% of her feeds by bottle. To make matters worse, the rice-thickened formula was causing her some serious constipation.

Together with the speech therapists and her cardiology team, we determined that it was time for Millie to get that G-tube so we could start working towards going home. We met with the surgeon last Wednesday to discuss risks and gave the go ahead for the surgery to happen Friday morning.

On Thursday, Millie had her pre-op upper GI test to make sure her stomach and intestines were working right prior to the surgery. They were. The surgeon came in later that day to go over the procedure with us. Even though I’m sure it was mentioned to him, he seemed a bit surprised that Millie’s abdominal organs are in the wrong locations. (Not a surprise to us.) Because of this he also casually mentioned that he might take out her appendix while he was in there. Um… what?!

His reasoning was that because it wasn’t in the right place and you don’t really need one, it was better to just get rid of it now than to risk her getting appendicitis and not catching it because the symptoms presented on the wrong side of her abdomen. We said we’d have to think about that. 

The night before surgery was a restless one for me and Millie. She couldn’t eat after midnight so she was hungry and fussy. Since her surgery wasn’t scheduled until 11 a.m., our nurse was able to convince the docs to let Millie have one more feeding at about 3 a.m., which settled her down  bit and we both got a little bit of sleep. 

Friday morning was equally stressful. I was so nervous about Millie undergoing another surgery and all that goes with it (intubation, anesthesia, blood loss) so soon after her open heart surgery. Truly, I was a mess. I cried plenty and couldn’t stop looking at her, holding her, touching her, before they finally wheeled her down to pre-op. 

To add to the stress, Millie’s IV had blown in the middle of the night so her poor little arm was really swollen and she needed a new one. By the time it was all said and done I think she had to have 3 or 4 IVs before she finally got a good one they could use during surgery. It all felt like a very bad sign.

When we got there the pre-op nurse introduced herself as Erin, a friend of my longtime friend Kate. What a welcome surprise! She told me Kate had told her about Millie and sent her a link to this blog so she had been following our story. I was so relieved to run into a familiar face who would take care of our Millie that I calmed down a little.

Surgery started late. And once we were in the waiting room it seemed like it took a lot longer than they had told us it would. Fortunately our friend Stacy and her daughter Katie came to keep Glenn and I company while we waited. Tucker was with our other friends, the Cosgroves, which kept him happily occupied outside of the hospital while we fretted.

After what seemed like hours we finally got the call that they had begun and so far everything was going fine. Then, finally, the surgeon came to get us and chat. The surgery had gone really well. He did look for the appendix, but didn’t find it, so he skipped the appendectomy. But the G-tube was in place. 

Millie was really groggy for the rest of the day after surgery, but recovered well. On Saturday, they started her on Pedialite through the G-tube for a continuous feed, increasing the volume every few hours. She seemed to tolerate that well. Glenn and I both gave her medicines through the tube and practiced setting up and starting the pump. We were on the right track and hoping to be headed home today or tomorrow. 

Then Sunday happened. Millie had done fairly well Saturday and overnight with the continuous feed so it was decided to start her on breast milk. But she had been sounding really gurgley all morning and seemed to be having trouble clearing secretions out of her throat. Just before we were going to start the breast milk, she started gagging, projectile vomited and got so worked up she stopped breathing for about three seconds. Thank God our nurse was in the room. Poor Millie turned red, then purple and almost blue. It was the longest three seconds of my life. So scary.

The nurse vented her G-tube and that seemed to help calm her down. She had quite a bit of gas in her gut. Throughout the day we had a couple of more (though much less severe) similar incidents. Her blood pressure was also a bit higher than it normally is, which was concerning. By last night Millie had had a chest x-ray (which looked good and normal) and an abdominal x-ray to see what was going on. The abdominal x-ray also looked good, but showed some extra gas and poop in her intestines.  

Between the doctors last night and the surgeons this morning, they’ve decided that Millie has post-operative ileus, which means that her bowels have stopped moving things along. She is constipated again. It’s a fairly common occurrence after abdominal surgery and was likely caused by her surgeon moving her intestines around while he looked for that damn appendix. 

She’ll be fine and things should start moving again soon. We’re starting the G-tube feedings up again this morning (a little more slowly) and hope to get back on track. But this has set us back at least another day or two, so we won’t be leaving the hospital today or tomorrow. 

Millie also blew through several more IVs yesterday, so she has been poked again a lot more than usual. (My poor baby.) She still needs the IV to get her fluids since she hasn’t been eating again for almost 24 hours. Now she has an IV in her head. It’s not attractive, but at least it’s working (for now). 

So, friends, please pray for poop and a quick adjustment to the feedings once they start. (And hopefully no more IVs!) We want to come home!

July 14, 2014 at 8:28 AM Leave a comment

Grateful hearts.

20140709-011015-4215887.jpgThank you. Thank you. A million times, thank you. We can’t say these words enough right now. This has, without question, been the most challenging time of our lives and we are so grateful for the support all of you have given us. We are overwhelmed and humbled by your kindness and generosity, dear friends.

You started praying for us and our little Millie months ago when we first learned of her possible congenital heart defect and abdominal situs inversus and you’ve never stopped. Thanks to you, there are people praying for her that we’ve never even met. It been truly amazing and we believe these prayers have helped immensely.

More than anything else, we are grateful that Millie is doing so well. Thank God she truly is a strong little fighter and that we live at a time when it’s possible to fix a heart defect like hers. It has been just over two weeks since Millie’s open heart surgery and she’s doing great. By all accounts her little heart is completely repaired and she won’t need any more surgeries on it. In the words of Jim, the echocardiogram guy, “It’s all good under the hood.” Amazing. Our prayers have been answered.

Our friends and family came to the hospital to be with us the day she was born, during my c-section, and on the day of her heart surgery. That moment when Glenn and I came back to a waiting room filled with our loved ones to share the news Millie’s surgeon had just given us that her surgery was a success is one I’ll never forget. You could feel a collective sigh of relief as the whole room cheered for the good news.

It was the happiest moment of my life. I was so scared something would go wrong and I’d never see that beautiful face or hold her in my arms again. (I can say that now, because it’s not what happened.)

And your kindness and support didn’t stop there. Many of you have visited us here at the hospital, which has helped us get through our long stay here more than you know. We love having visitors, but we hope that soon you’ll be able to visit us at home instead of the hospital!

You’ve taken Tucker (& Billy) for a day or a night or more, which has given him some much-needed time away from the stress to just be a kid this summer and allowed Glenn and I to focus on Millie when we need to most.

You’ve sent us flowers. You’ve brought us food or taken us out to dinner. You’ve mowed our lawn. A few sneaky garden gnomes even snuck into our yard to plant our vegetable garden for us. (Wow!) And when he gets home at night, Glenn texts me pictures of gifts and cards we have received in the mail. These are totally unnecessary, but are much appreciated.

You’ve commented on our Facebook and Twitter posts or sent us messages of encouragement and support. And if we haven’t posted an update in a while (which sometimes happens when we get tired or overwhelmed), you inquire about how Millie and the rest of us are doing.

In fact, thanks to social media, we’ve heard from friends who we’ve lost touch with over the years and even friends of friends we hardly even know. Truly, so many people are thinking about and praying for Millie, it’s overwhelming.

We’re not sure what we’ve done to deserve your kindness and generosity, but we are definitely feeling the love. From the bottom of our hearts, thanks to each and every one of you for all you have done to support us. Every prayer, every kind word, every visit, every gift, every thoughtful gesture has helped make an unbelievably difficult experience just a little bit easier for us.

It is with grateful hearts that we send much love and thanks to each and every one of you from Super Millie and her family. XOXO

July 9, 2014 at 1:09 AM Leave a comment

Learning to eat…

Little miss Millie is recovering beautifully from her open heart surgery. Medically, she is basically ready to go home. Our tough little girl isn’t even taking pain meds anymore. The only thing keeping us in the hospital now is the fact that they won’t send us home while she is being fed through an NG tube. So she needs to learn to eat.

It sounds pretty simple, right? So you might be wondering why we are still living at the hospital. I know it might be hard to understand why this one seemingly simple task is keeping us here. But you have to understand that Millie is almost four weeks old and she has never once eaten food like a normal baby. Since the day she was born she’s received her meals either through an IV or through the NG tube in her nose. We tried nursing a couple of times while we were in the NICU in the weeks before surgery, but at the time she was working so hard to breath that nursing was too stressful for her. She had never even been given a bottle until a couple of days ago when we moved up here to the sixth floor from the CVICU.

Millie’s feeding issues are completely normal for a newborn who has just had open heart surgery. So we have been working with a team of speech therapists who are evaluating her situation and trying to help us teach her how to eat.

Unfortunately, Millie seems to be having a hard time taking food by mouth. Although she roots around and shows interest in nursing or feeding, when we give her the bottle she either loses interest and shuts down or ends up forgetting to breath and coughing. So on Tuesday the speech therapist recommended we do a swallow study to see if there is another underlying problem.

The good news is that in order to take Millie to the swallow study they disconnected her from telemetry for a bit and I got to carry her downstairs to the radiology department. We went for our first walk together! It was so nice (and nerve-wracking) to carry her without a bunch of wires connected to her.

Millie is not super happy about being studied while she eats.

Millie is not super happy about being studied while she eats.

The bad news is that during the swallow study they discovered that Millie was silently aspirating (meaning she doesn’t necessarily cough when it happens) liquids of the same consistency as breast milk. When they tried the next higher liquid consistency (nectar) the same was happening. However, she did better when they tried a honey-thick liquid so the speech therapists recommended giving her formula thickened with rice cereal by bottle in small amounts to see how she tolerates it and continuing to use breast milk via NG tube for now.

They also recommended having the ear, nose and throat doctors (ENT) come by to take a look at her throat to see if her vocal cords had been damaged either by the intubation or the heart surgery. So early yesterday evening a couple of ENT docs came by with their scope. This was a difficult procedure for both of us. I held her on my lap and restrained her hands while the docs put the scope down her throat. Millie was very uncomfortable and I felt terrible to have to put her through yet another miserable procedure.

What they learned is that Millie’s left vocal cord was in fact damaged at some point and is paralyzed. This is not that surprising given that Millie’s cry has not returned as strong as it was prior to intubation and does not seem to be improving much since she was extubated a week ago. Her cry is very quiet and hoarse still.

While the paralysis is likely not permanent and will improve over time (could be a couple months to a year), it does complicate the feeding issues we are currently having. It means that she may not be able to adequately prevent herself from aspirating liquids while she feeds. This can lead to complications like pneumonia.

Moving forward it is very important that we not give her liquids that are easily aspirated, which means that nursing is pretty much out of the question. After a month of pumping every three hours and only ever having been able to attempt to nurse her twice, this is hitting me pretty hard. The promise that at some point I’ll be able to nurse her is the only thing that’s kept me motivated to suffer through the pumping for all these weeks.

20140703-012824-5304931.jpgI’ve pumped so much that last night they asked us to take some of my frozen breast milk home so they could make more room in the freezer. It’s quite ridiculous. And now, because there’s no way to thicken breast milk, I’m not even sure we’ll be able to use all of it. If we can increase her to full feeds by mouth, which is the goal, she’ll be getting all formula thickened with rice cereal.

However, today the cardiology team was discussing how realistic it is to expect her to take all of her feeds by mouth with the damaged vocal chord. There’s a possibility that if she doesn’t increase her volume of feeds by mouth in the very near future, they may recommend giving her a G-tube. The thought being that it would be temporary and would give her vocal chords time to heal.

While it would probably get us home sooner, I have a lot of questions and concerns about putting off feeding by mouth even longer. But I missed afternoon rounds and will have to wait to talk to the team tomorrow morning. So for now, Millie and I will just continue to work on her eating skills throughout the night. (And I’ll be hoping for some miraculous improvement that will get us on the right track to safely take our baby home.)

July 3, 2014 at 12:39 AM Leave a comment

Tired.

I have so many pictures and updates to share with all of you about our adventures here but I am just so dang tired.

After 24 days in the hospital with Millie and I moving between the maternity ward, NICU, CVICU, a couple of different boarding rooms and now a regular hospital room, I have hit a wall.

This last move from the CVICU to our regular room should have been the least stressful, but I feel like it has taken the most out of me. I’m physically and emotionally drained.

I’m tired of living in the hospital. I’m tired of feeling like I need to ask permission to hold my baby. I’m tired of our family being divided in half. (I miss Tucker so much and worry constantly about the effect all of this is having on him.) I’m tired of worrying about every bell and beep and number on a monitor. I’m so, so, so tired of pumping every 3 hours. I’m tired of hospital and restaurant food. I’m tired of wearing my maternity/nursing clothes over and over and over again. I’m tired of being inside so much. I’m tired of feeling so completely and utterly helpless and our of control.

I can’t wait to go home. (I may never leave again.) I can’t wait to sit on my couch snuggling with our whole family together. I can’t wait to put some clothes on this naked baby. I can’t wait to go to the farmers’ market every weekend as a family of four. I can’t wait to grill out and eat a real meal. I can’t wait to run a normal errand, like grocery shopping at Target. I can’t wait to either nurse or bottle feed my baby for real. I can’t wait to wear real clothes again. I can’t wait to wake up every three hours in my own bed instead of random hospital beds/cots.

I can’t wait for our new normal to begin.

June 29, 2014 at 10:58 PM Leave a comment

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