One Month at Home

It's been a busy first month at home for Lily. I can't believe it's been a month already! The twins are 9 months old now. Crazy. 

Let's start with some good news. Lily's blood clot is gone! She had an ultrasound a couple weeks ago at the hospital and it showed that the clot is gone. The hematologist wants to do one more ultrasound in 3 months just to make sure things still look good. She doesn't think it's related to Lily  having a clotting disorder of some kind, but rather just an unfortunate thing that sometimes happens with central lines. If Lily ever needs another central line (fingers crossed she won't), they would take extra precautions to prevent another one. Otherwise, shouldn't have to worry about clots anymore. So no more lovenox shots!!

Lily is getting stronger and stronger. PT is still coming once a week. Just yesterday and Thursday, she rolled over for the first time! Thursday she rolled back to tummy, and yesterday she rolled tummy to back. Her torticollis is definitely improving. Her head shape is still pretty flat in the back, so on Monday we are getting a helmet from Mary Free Bed. She had the measurements done last week. The Orthotist thinks she will need the helmet for about 4 months. 

OT is going pretty well. We had to take a break from trying food orally for a couple weeks because Lily wasn't feeling good, but she's back at it now and seems to really like tastes of breastmilk. 

Her diarrhea I mentioned in the last blog post lasted for 3 weeks. We have no idea what caused it, but thankfully it finally stopped and her diaper rash is gone. A week ago, she had some dark brown emesis, black stool, and coffee ground black stuff come out of her g tube. All signs of a GI bleed. The worst of it was this past Sunday night/Monday morning. I called the GI office and they didn't think she needed to be seen emergently, but decided to do a scope at the same time she was scheduled for her dilation with the general surgeon on Thursday. Thankfully, she had no more weird symptoms after Monday morning. The GI doctor ordered some labs just to be safe, but those all came back normal. Thursday morning, Joe and I took her to the hospital for her procedures. The GI doctor wasn't available on Thursday, so he asked Dr. Pennington to see if he could see any signs of a GI bleed. Dr. Pennington said he didn't see anything unusual, so maybe it was something that resolved on it's own. We're not sure what that was about. Her esophagus was back to 6mm in diameter which is where she was at the start of her last dilation in Boston just over a month ago. So he dilated it back to 10mm and said we should stretch it again in 2 weeks to try to keep it stretched. So not bad news really. We're glad she didn't stricture way down and that her anastomosis site looked good. Hopefully after a couple more stretches, her esophagus will stay open more.

With everything going on GI wise, we didn't really work on increasing her feeds or trying to condense them. Hopefully now that she's feeling better, we can start working on that again. Right now she's still on continuous feeds for 20 hours a day. 

Cora has started army crawling, so we have to be extra careful with stuff around the house now! She actually got a hold of Roses' milk cup and drank a little bit. She broke out into a rash around her mouth :(  I gave her a little Benadryl and it went away. Hopefully she's like Rose and will outgrow that allergy/intolerance quickly. Cora also got her first two teeth.

We had some family photos with Kim Jarchow a few weeks ago. They turned out amazing! Check out her website, she's the best! http://kimberjphotography.com 

Appointments for Dayyyyyyyyyyyyys

It was a busy week for us. Lily had PT on Monday, OT and visiting nurse on Tuesday, GI specialist on Wednesday, Pediatrician on Thursday, and lab draw on Tuesday and Thursday.

The visiting nurse comes mostly just for weight checks, but also to answer any questions we have about Lily's G tube or other care.

With PT, we are working on a few things. She has something called torticollis. Her neck muscles are stiff and weaker on one side, so she often tilts her head a certain way. We are doing exercises to strengthen her weaker side. We are working on tummy time as well and just over all strength and flexibility. She is starting to bear a little weight in her legs if we hold her up with her feet on the ground which is an improvement since bringing her home.

With OT, we are working on oral motor skills, eating and swallowing. She currently gets all of her nutrition through her G tube, but we want to start teaching her how to eat and drink on her own. She can handle the tiniest little bit of puree and drops of breastmilk. This is going to be a long road I think.

For hematology, she has an ultrasound on the 8th and a visit with the Dr. after that. We are pretty sure we will be able to stop the lovenox shots after that. The Dr. wanted to check a blood level to see if her lovenox was still at a therapeutic dose, so I took her to the outpatient lab connected to the children's hospital. Several people told me to bring her there because they are the best at drawing labs for kids. Unfortunately, they couldn't get it even after 3 tries. We went back again on Thursday and they still couldn't get it! I called the Dr's office to let them know. I didn't hear back yet, and I'm assuming there's no point in trying again with the ultrasound just a few days away. It was so traumatic for her and for me :( 

The GI specialist is part of her team now to help manage her feeds and nutrition. We are going to slowly increase her total volume of milk/formula (currently she's getting 50:50), and also slowly condense her feeds down to boluses instead of continuous feeds. Right now she has feeds running 21 hours a day.

In a few weeks, we have an appointment with a neurodevelopmental specialist. I'm not exactly sure what they will be doing. Dr. Raj, her pediatrician also wants her to follow up with an opthamologist because she had strabismus in the NICU. Although, we don't ever see her eyes wander anymore.

Some good news! I talked to our surgeon here in GR, and he talked to the Boston surgery team and they decided that Lily can have her next dilation here! I'm so glad we don't have to fly back out there. We scheduled a dilation for Oct. 22.

As far as her reflux goes, it's still much better than when we first brought her home although she has the occasional bad day. The GI doctor pointed out something interesting though, and that's that her anatomy is such (as is with all babies) that reflux will happen. But she's on 2 different antacids that prevent the reflux from damaging her esophagus. That was encouraging to me. The reflux itself isn't all bad, it's the acid that can be truly harmful. She will most likely have acid reflux for her whole life because of the esophageal atresia, but hopefully as she grows and gets older it won't be nearly as bad and she will be able to eat and drink normally. The doctor told us that she will learn how to adjust by eating slowly, taking small bites, drinking lots of water with meals,.. that sort of thing. 

She was on a very low dose of an antibiotic to help with gut motility. Apparently, the EA team prescribes it for a lot of kids with reflux. I think it may have been causing her to have diarrhea, and she has a horrible diaper rash now, so we decided to stop the erythromycin to see if her diarrhea stops. Hopefully it will, and hopefully it doesn't affect her reflux. 

In other news, Cora is doing well. She loves to eat, and the contrast between her and Lily sometimes strikes me as sad. Cora is sitting up on her own, rolling and scooting around (not crawling yet), and loves every food we offer her. Rose is handling all the changes really well. Sometimes she a little extra clingy, but overall she is her happy self. She also needed some labs drawn this week for her allergist appointment coming up soon. She has an egg allergy that we are hoping she will outgrow. She was so brave at the lab, and I took her to the park and got her a happy meal afterwards. It was really fun to have some Mom and Rosie time. Big thanks to my Aunt Mary and Uncle Dick for watching the twins. 

Hopefully the appointments will start to be less often and we can start getting settled into some new routines. We have the twins in the same room now at night, and it's been a week of little sleep for us. We're hoping that they will start getting used to each other and start sleeping through the night, pronto! :)

 

Homecoming Continued

 It's been a crazy few days adjusting to home life with 3 girls. Discharging from the hospital went pretty smoothly. Joe and I got to the hospital about 7am Saturday morning. We packed up as much of her things as we could into our suitcase. We didn't realize how much stuff Lily had, so we couldn't fit it all! Thankfully, the hospital offered to have it shipped home for us, so we left a couple bags of clothes and decorations for them to send us. We went through some discharge instructions with the nurse, and we were officially discharged at 9am. We headed for the front door and ordered a Lyft to the airport. Our social worker at BCH set us up with something called MassPort, and it was so helpful! A man met us right outside the Southwest entrance. He walked us through checking in and brought us to security where we had special treatment to get Lily and all her equimpent through. Then he walked us to our gate just to make sure everything went smoothly. Big shout out to Scott, our social worker for setting this up for us and for all of the other great resources he connected us with. 

Unfortunately, it was downhill from there. Shortly after we sat down at our gate, Lily threw up. Like a lot.. until her stomach was empty. We used every burp rag we had packed in our carry on. It was on her, it was on us, it was everywhere! The poor thing passed out after that. Once we boarded the plane, we tried to put on her nasal cannula for the half liter of O2 she was supposed to wear during the flight. She HATED it. I don't know if was because she was already upset from throwing up so much and all the change in scenery or what. We tried for a while, and then just turned up the rate and held it to her mouth for a while. She hated that too 😞. Thankfully, she didn't seem to mind take off or landing at all. When we landed in Baltimore, we went to our next gate and set up camp for the couple hour wait. Unfortunately, there are no direct flights from Boston to Grand Rapids. Lily fell asleep and it was going well. Then just before we boarded our second flight, she threw up again. We had her feeding pump and formula in a little back pack hooked up to her throughout the day since she is on continuous feeds. 

The second flight went much better! She was even being very social. She was leaning over Joe's arm so she could watch all the people board the plane :) My dad picked us up in GR and we got home about 6pm. I had reached out to our church family about a month ago with a request for help with decorations. I wanted to have something special for Lily's homecoming, but I knew I wouldn't have time or energy to work on it. Several ladies from our church stepped up and made, delivered, and set up some beautiful and fun decorations in our house and outside the house. It was really special and I'm very grateful for this. Rose was SO excited to see Lily and give her stuffed animals. She was very interested in Lily's "tubes" but has done a great job listening to us and not playing with them. Lily has continued to struggle with refulx. She has thrown up or spit up several times every day since being home. Today is going much better so far (knock on wood). My mom is staying with us this week, which has been wonderful! My dad was here last week, and he's coming back next weekend. 

It's been busy with doctor appointments and visits too. We had a visiting nurse come for our initial appointment, we had a physical therapist come to the house, our regular nurse, and we will have OT come tomorrow. Tomorrow is also her appointment with her pediatrician. Joe and I took Lily to Helen DeVos for a hematology appointment yesterday to follow up for her blood clot. She will continue on the lovenox for 3 more weeks, have an ultrasound, and then stop the lovenox as long as the clot is unchanged. She will have a lab draw to check the lovenox level next week. Giving the lovenox shots is going ok. She doesn't like it and neither do I, but hopefully it's just for a few more weeks. 

Today, the Boston EA team is having a conference call with our surgeon here, Dr. Pennington to discuss Lily's care and follow up. We're hoping they might be ok handing Lily off to the team here in GR, but they may decide that Lily should go to Boston for one more EGD in a couple months. 

Lily has a lot of developmental things to work on. She's understandably behind in a lot of skills and milestones. We are working on tummy time, but she will likely need to get a helmet too because of her head shape. She is rather flat in the back from all her time in the hospital. Getting home was a huge hurdle, but she still has a long way to go for recovery and growth. We are so grateful for all the support so far, and we appreciate your prayers moving forward as well. It's a huge adjustment having Lily home, but we are so glad to be all together for the first time!!

Lily is Home!!

We will post more about it later, but just wanted to let everyone know that we made it home safely this evening. It was quite the adventure. We came home to fabulous decorations from some of our church family. We will post pictures tomorrow. Thanks for all your love and prayers!

Going Home?!

 Hello Friends,

Heidi and I arrived back in Boston yesterday evening. Heidi’s parents are back home taking care of Rose and Cora for us. So as much as we miss them, our other babies are in good hands.

Lily had her 3rd (technically 4th) EGD today and is doing well. They measured her at 6mm, which is a step forward from last week when she was 5mm. They were pretty happy with everything they saw. They decided not to do the steroid injection this time, so it was just a dilation up to 10mm. And the best news..she won’t need another EGD for around 2 months! So far Lily is doing very well. Unless tomorrow is a very bad throwing up day, or some other major unforeseen event, we are free and clear for flying home on Saturday! I just booked our flight home, so fingers crossed.

Tomorrow will be a very busy day with lots of “training” for us, and discharge paperwork and such for Lily. Saturday morning Lily will discharge, and the hospital will set us up with a Lyft to the airport. Once there, through a program called “Massport” we apparently get some sort of expedited escort through TSA, and then we hike to our gate. We’ll be flying out at 11AM on Southwest, ETA at home 5:05PM. So by roughly 6PM Lily will officially cross our home threshold for the first time at 243 days old!

/Joe

Resting up for her last operation before going home.

“Let’s get this thing done!”

Lily was so happy to finally see Mommy again!

Maybe This Time It’s Real?

 Hello Friends,

Heidi and I will be traveling back to Boston this week together. Heidi’s parents are coming to town to take care of Rose and Cora for us, so it’ll be a weird change for both of us to be with Lily and our other two be somewhere else.

Lily had her 2nd EGD on Friday and the results were better than the last one. She measured an even 5mm at her stricture, which seems to mean the steroid injection did its job at helping the esophagus respond to the dilation. However she’s having more issues throwing up now. I’m fairly certain it’s related to her getting the steroid injections. She didn’t have any throw up issues before the EGD’s, or even after her first EGD (no steroid injection), but these last two within a day or two of the steroid injection she starts throwing up a lot and then over the next days/week the throwing up wears off. So that’s going to make our taking her home the day after her last EGD a little more tricky.

On that note, more drama in terms of her discharge date. After her 2nd EGD the doctor told Heidi that Lily’s 3rd EGD would be scheduled for 2 to 3 weeks out. Uuuuh...what?! We’ve been told all along that it would be a series of three, each one week apart. Not that we would leave for a couple weeks and then have to come back again right away. After some mild freaking out, calling our hospital social worker, and a few emails, we think we’re back on track for her 3rd one to be this coming Friday. As of last night our bedside nurse told us the schedule still shows her on the schedule for October 2, but we expect that on Monday that will be getting changed. If all goes well we should, hopefully, theoretically, potentially, maybe?!?!? finallly be bringing Lily home next weekend!! 

We’re not looking forward to leaving Rose and Cora, but Rosie loves her time with Oma and Papa so I think she’ll be just fine. And in the mean time, we will try and enjoy a little Heidi and Joe time while we’re there. 

/Joe

Just Another Day In Boston

 Hello Friends,

Not too much to update today. Yesterday they tried to condense her feed schedule down from 60ml over an hour and a half to 60ml over an hour and fifteen minutes. She didn’t like that at all, and had several large spit up’s throughout the day. Last night they went back to the hour and a half and she “only” had one bigger spit up event. Other than that, it was a really good day. She was happy and playful, so I guess she got all the sedatives from her operation Thursday out of her system on her sleepy Friday. Also, she got to go outside for the first time, ever! Not including when she was transported from hospital to airport to hospital to get to Boston. She wasn’t too fond of it, so we’ll have to work on that.