Almost Home...

As I sit by Maia's bedside, here in the hospital, I can't seem to go to sleep. It's Wednesday night and I'm having a sleepover with Maia in the Transitional Care Unit aka 7 North, so I can provide more hands on care, as the nurses teach and guide me along the way... Maia is coming home "soon" so we all have to be prepared! She is more than ready, so now it's our turn!!

Last day with a trach

It's been a very exciting week for us!... Last week's family meeting revolved mainly around the trach. Dr. Cohen, Maia's heart surgeon, and Dr. Chan, Maia's ENT Dr. had been going back and forth for days about whether to take her trach out or not. So Dr. Chan attended our meeting and gave us his input. He let us know that he's on the conservative side and likes to do things by the book, the way he was taught. This way, things are more predictable for a better outcome. He was extremely hesitant to decannulate a baby like Maia, who was only 8 months old. He was taught that it was better to wait until babies are at least 1 year old, so to him, Maia was still very young and may not be strong enough. Opposite of this was Dr. Cohen, who himself handled trachs when he was in London years ago. His approach is to take the trach out and see how the baby does... if the trach needs to be put back in, then they put it back in. So they reached a compromise of taking Maia's trach out again, and watching her closely to check and see how she does. They knew she would be fine for a few hours, but Dr. Chan was worried if after a couple of days, she starts to struggle and need the trach. If that's the case, Maia would need to go down to the operating room and have the trach surgically put back in. The stoma (hole) heals very quickly so they may not be able to just put it back in. So we were all in agreement that we would like to see Maia pushed, to see how she would do without the trach because as her parents, we knew she could do it. 

Waiting for decannulation!

So the following morning, Dr. Chan allowed me to do the honors... I pulled out Maia's trach for what could be the last time! They quickly covered the stoma with some gauze and Tegaderm. Maia usually goes through a mad phase which usually lasts for about 5 minutes, but this time she didn't. She was so calm! She didn't get mad, she didn't show any signs of struggle. She only got angry when they put the nasal cannula in place so that she could get some oxygen. After a while, we all felt confident that she was ok, so the Drs, respiratory therapist, and nurses left the room. Maia looked great! We constantly looked up at the monitors to check her heart rate, respiratory rate, and oxygen saturation. All looked good. She was off to a great start!

No more trach!

A few hours later, Dr. Chan came in to check on Maia before he left for the day. He was very pleased to see her doing so well! He was actually amazed! Dr. Sandrijn van Schaik, one of the critical care specialists told him that some babies just need that extra push, and they can do it. She said that Maia is one of those babies and that she's been unpredictable her whole life, so nobody knows what she's going to do... she's always done things her own way. Then she told him that he shouldn't feel bad because Maia has proven almost every doctor wrong, so he wasn't the only one!

Maia has continued to do well without her trach. The nasal cannula still bothers her, along with any sort of bandage that covers her old trach site. They replaced the gauze and Tegaderm with a band aid today but Maia has taken it off 3 times! So they said the site is healed enough where it doesn't need to be covered. Maia has done so well that she no longer needed to be in the PCICU. Yesterday, she was moved into the Transitional Care Unit... another sign that she's closer to coming home "soon." On her last day at 7 East (PCICU) the nurses got Maia a cake that had "Good Luck Mighty Maia!" written on it. They also made a poster for her with signatures from the nurses and staff... it was so sweet of them! We will surely miss them all!

Making herself feel at home at 7 North

Maia and her "graduation" cake

So today when we came to the hospital, I almost opened the door to 7 East! It was very strange not to go into that unit. We entered 7 North and headed over to see Maia, who was wide awake and watching some cartoons. We met her nurse for the day and then joined the Drs. and nurses for rounds. It was here we got an official discharge date of Friday... 2 days from now! We knew it was going to be "soon" but we didn't think she'd be ready that soon! Maia was doing great and they felt that there was really no reason for her to stay in the hospital any longer! They had weaned her meds to twice a day, her bolus feeds were every 4 hours, she was down to using only 1 Liter of oxygen... we were pretty much just waiting for her feeding pump supplies and oxygen to arrive at home. I was introduced to her new feeding pump earlier today and tomorrow we will be trained on how to care for her G-tube. They're also planning to wean her oxygen down to .5 Liters by the time we leave the hospital. Everything seemed to be set in motion. 

So happy her hair is long enough to braid

Today, Maia had her last echo before being discharged. This echo seemed to take forever! It didn't help that Maia had been fussy to begin with and didn't take her usual late morning nap. So after a few breaks by the tech and Dr. and a dose of Tylenol for Maia, they were able to finish... everything looked good, she was able to take a short nap. Maia is no longer hooked up to many machines, so she's able to be more mobile, especially when she's done feeding. We can take her around the hospital more since she only needs her oxygen for now, and it's much easier to get around. So today, we went on a wagon ride with Helen, her occupational therapist. First we visited 7 East to say hello to all our old friends! They were all so excited to see her! But I think Maia was wondering why everyone was staring at her! Then we decided to take her to the patio on the 6th floor. It was her first time outside! The sun was shining brightly so we found some shade, but it was still really bright. Maia tried hard not to squint and ended up looking so mad in her pics! She wasn't angry or fussy thought, in fact, she was very calm and relaxed. It was nice to go outside for a change and breathe in some fresh air and a nice cool breeze. After about 10 minutes, she started yawning and rubbing her eyes, so we headed back to her room. But once she was back in her crib, she was wide awake and just wanted to watch tv!

I think I could get used to this

Where are my sunglasses

 

For the past few days, Gordon and I have been constantly going over our mental checklist of what needs to be done at home, in preparation for Maia's homecoming. With the help of There With Care, a non-profit organization, that helps families with hospitalized kids, we were able to get the house cleaned, including the vents. We've also rearranged our bedroom to make room Maia. We have the carseat and stroller ready... I think we're ready... I think... then at the end of the day, they decided to change our discharge date to Monday, June 2! That made me feel a lot better! Although we're ready, we could use the extra days to be even more ready. I think we're just a bit nervous... but excited too! It's so hard to believe this is all happening right now! We've waited so long. We've waited 9 months! It will feel so weird to finally wake up and not have to drive to the hospital. I can't help but have flashbacks! Tonight is the first night since Maia was born, that I'm spending the night at the hospital. Tomorrow she will be 9 months old!!

So now we wait for Monday. In the meantime, we busy ourselves with preparations for Maia's homecoming! As I've said before, we are where we're meant to be... and everything happens for a reason!

Forward Progress...

Maia's recovery from her second open heart surgery, the Glenn, has been faster than we all anticipated! We were prepared for complications and expected a much longer recovery but so far everything has been going smoothly. 

Maia in her pigtails

The day after surgery, although Maia was still on the ventilator, her trach tube was put back in, instead of waiting a week like the Drs had originally planned. She was only on 2 heart meds, 1 pain med, 1 sedative, and 3 diuretics. She was also on antibiotics, as a precaution, since her surgery incision was close to her trach site. A few days post op, Maia was already getting chest tubes taken out and her urine catheter removed. Then she was back on her trach collar and completely off the vent. Everything was moving at such a fast pace! Within the next few days after that, she was off the vent and only had a couple of IVs attached. Maia also didn't get as swollen and puffy as we expected her to. I think it's because we remember how big she got after her first surgery, and this was nothing compared to that. The Drs and nurses also commented on how good Maia looked. Just from her appearance, it was almost like she didn't have surgery. By the end of the week she looked like she was back to normal! 

A few hours after surgery

2 days post op

3 days post op

4 days post op

It was such a relief to see Maia doing so well! I constantly asked the Drs about how her kidneys were functioning, but they reassured me that so far, they were working just fine with no signs of any further damage or complications similar to last time. They increased her diuretics to ensure she was peeing out a good amount, but it caused her potassium to decrease since she was constantly peeing it all out. Other than that, she had no kidney concerns!!!

Monday, May 12, 2014

Monday was a big day for Maia! A week after the surgery, Maia had been completely weaned off of her heart and pain meds, and was only on diuretics and finishing the course of antibiotics. However, she had been extremely fussy, so she was getting some morphine and/or Tylenol, as needed.... Well, we found out why she had been so fussy.... her two bottom teeth finally broke through! It was very exciting, but at the same time, I felt so bad for her that she's recovering from major surgery and now she has the added pain of teething! So I told them to just give her Tylenol because giving her morphine for teething just didn't seem right! Right now she really isn't in the mood to show off her new little pearly whites, so you can only get a good glimpse of them when she's crying... she will only stick her tongue out when you ask her to show her teeth!

Trying to get Maia to show us her teeth!

That same morning we found out Maia had teeth, it was also the same morning she had a swallow study done. This would determine how well Maia's swallowing coordination is, and to give us an idea of how aggressive to be when it comes to feeding her orally. So she was brought down to the radiology dept. where her occupational therapist, Helen would force feed her different consistencies of barium. Using barium allows them to see the contrast better on the xray, to see where the liquid is going after she swallows it. We want to see that Maia is able to protect her airway while swallowing. So Maia was put in a little chair and tucked in between the x-ray machine and a small wall-like structure, and Helen fed her with a bottle. She had a barium-filled syringe on hand just in case Maia didn't like the bottle. Helen had been stressing about this swallow study because most kids that haven't had the chance to feed orally at this age develop an oral aversion and find it extremely difficult to learn how to eat by mouth. To Helen's surprise, Maia drank from the bottle like she had been doing so all her life! Maia had great coordination swallowing all the different consistencies and did better than anyone expected! So now, before each of her g-tube feedings, Maia is able to drink about 15mL of formula or breastmilk by bottle. A drop of green dye is added just to check and see if any of it gets into the trach, and to see how much of it she actually drinks or spits out. She's been able to take a bottle before most of her tube feedings, however sometimes she's too sleepy to finish all 15mL. The Drs currently have her on bolus feeds every 3 hours, with each feeding lasting 1 hour. The goal is to get her to feed under an hour every 3-4 hours. They have also weaned her off of the special cocktail of fortified breastmilk mixed with a high calorie formula. It was specifically formulated to be gentle on her kidneys, but since her kidneys have proven to be ok with no further complications, she can now have regular formula or breastmilk. She just started taking Enfamil 20 which is similar to breastmilk, mainly because my supply has slowly decreased the last few weeks, so she's mostly taking formula now. I expect to run dry sometime in the next couple of weeks! But I'm still trying to pump out every last drop that I can! Overall she seems to like drinking from a bottle, so we're hoping she continues to do well and eventually work towards eating solid foods just like a normal baby her age. 

Maia waiting to start the swallow study

So sweaty after it was all done

Friday, May 16, 2014

Friday was another big day for Maia... she was temporarily decannulated, for about 30 minutes!!! The Drs had her trach taken out just to see how Maia would react. They first capped her trach, but she took the cap off herself as the Drs all laughed! After the putting the cap back on the second time, she took it off again! So this time the Drs had the respiratory therapist remove the trach and cover the stoma (hole) with some gauze. Maia didn't like it at first and tried to pry the RT's fingers from her neck, but soon after she calmed down and relaxed. She looked good and her heart rate, respiratory rate and oxygen saturation remained normal... "her normal." We were all so happy to see her do so well without the trach. I think she did better than anyone expected.

Maia staring at the oxygen mask while breathing without her trach

The next day, they capped Maia's trach again and she did ok for about 30 mins. Then she started to get sweaty and pale, then her oxygen saturation started to drop... so I went ahead and took the cap off her trach and gave her some oxygen. After that, many of us, including some of her Drs. noticed Maia did much better when the entire trach was taken out and she was forced to breathe on her own... mainly because her airway was clear with no obstruction. But when capping her trach, it seems that the trach tube itself becomes an obstruction and she has a harder time breathing with the trach still in her airway. So this has now led to an ongoing discussion about whether or not to take her trach out (permanently). Dr. Cohen, Maia's heart surgeon believes Maia will do better if the trach is taken out, and she showed that she can breathe on her own through her nose and mouth. However, the Dr. Chan, the ENT (Ear Nose Throat) Dr. believes that Maia is not yet ready to have her trach taken out. In babies, trachs are normally taken out when they are one year old... Maia is 8-1/2 months, so he sees her as being too young right now. The normal way to wean off a trach is by increasing time on the Passy-Muir valve, which Maia has been doing, then to cap the trach and eventually increase the hours of the trach being capped until she can do it continuously, before considering decannulation. If they plan on being aggressive with her weaning, and are able to do so in the next 2-3 weeks, then we would rather have her weaned and decannulated before going home. Why go home sometime in the next few weeks, only to come back a week or so later to be decannulated? We've been at the hospital for this long that a few extra weeks doesn't really make a big difference to us! One thing the Drs were worried about is having Maia go home and something happening to her trach. Since Maia is a single ventricle baby, the amount of time before her oxygen gets too low is decreased considerably, compared to that of a baby with a normal heart. However, with Maia proving to everyone that she is ok and doesn't fall apart when her trach is taken out, some of the Drs are considering sending her home with a trach. 

Maia and her facial expressions

Many of the Drs have voiced their opinion about whether to have Maia decannulated now or later, and this discussion has been going on now for at least 3 days. If you ask us, we would very much prefer to have the trach taken out before Maia goes home. It's one less thing we would have to worry about. Plus, we believe that she will do better without the trach... we know she can breathe normally on her own. Either way, whatever they decide, we are prepared. We've been pretty much doing most of the trach care since January. 

For now we continue to enjoy spending time with Maia. Each day she is more interactive. We are also able to bottle feed her a few times a day. She is smiling more and laughing more and even likes to High-5! Since the Drs mentioned the words "coming home" just a few days ago, we're now somewhat scrambling to get the house ready! The furniture in our room will need to be rearranged to fit her crib (which is still in the box!) We also need to get our vents thoroughly cleaned along with the carpets... it's not a requirement, but the house certainly needs it. Plus, we can never be too careful when it comes to cleanliness! 

Feeding time with big brother Marcus

Feeding Maia her green milk

It's been such a joy to watch Maia recover from this last heart surgery. It seemed to happen so quickly and each day she looks more and more like a healthy baby. She is still delayed when it comes to some of her milestones, but that is expected, considering what she's been through... and she's been through a lot! A lot more than some of the adults I know! But we are ready for her to finally come home. Whether it happens with or without a trach, it looks like her homecoming will be happening sooner rather than later! We can't believe it's really happening... we are truly blessed!

The Day of the Glenn

Monday, "CINCO DE MAIA"... surgery day!

The day started out early since the night before it was hard to go to sleep with so much on our minds. We kept thinking about the good and bad of what can happen, and what has already happened since her first surgery, the Norwood. We don't want any of these bad things to happen again, such as the kidneys failing and having to keep her chest open. We kept our focus on the good, the positive, and praying to God that all goes well, whatever the outcome may be. We started our morning getting up a little after 5am and then got ready and headed out to Philz coffee in the Mission. We got there when they opened and got our "cups of love." Then we headed to UCSF which is just over the hill from Philz. We arrived in Maia's room around 6:30am and started cheering her on. She was a little confused mainly because she's never seen us there that early! Maia was already up and smiling, ready for the day, ready for her Glenn.

Sitting up with daddy

We were told they were thinking of taking her within the next 1/2 hour (before 7:00am), but that turned into a little over an hour. It worked out great because we had more time to spend with her before walking her down to the operating room. I gave her a pep talk, letting her know "you got this, handle it, you're strong, you're mighty."  As she grabbed onto her trach I told her "if you want this completely out after the surgery, you have to show the staff you can do without it, show them with your stats, with your breathing and hopefully we will not have to have a trach again!." She looked into my eyes the whole time and I know she understood me, I know she heard me. The time was coming as the anesthesiologist came in to prep her and take her down to the operating room. They were talking to Maia and reassuring her that she is safe and listening to us talk to her as we kept telling her "you got this!!!"  Nurses, Drs and other staff members stopped by periodically to cheer Maia on and tell her we will see you later today, with big huge smiles...
The time came to walk her out of her room. She was slightly asleep at the time, then opened her eyes when she felt the bed rolling. We walked down the hallway, through the double doors and then into the elevator. We were by her side the whole time, talking and cheering her on. We got into the elevator and as she held my finger I kept telling her "show us all how strong you are." The doors opened and we were on the surgery floor. We walked with her until we reached the double doors leading into the operating room, then stopped to tell her our goodbyes, kiss her and tell her we will see you later and we love you... Then they wheeled her off into the operating room section of the hospital and we headed back up to her room.

She fell asleep right before heading down to the OR

Now the waiting starts. We kept ourselves busy by helping clean her room and going through all her toys, blankets, headbands and all the stuff she has collected over 8 months. Six full bags later and her favorite stuff set aside, we stepped out so the staff could finish mopping her room up. After taking down the bags to the car and coming back we sat and rested as we waited for two of her God parents, Frank and Lydia Ibarra to arrive. Thank you for enduring the traffic and the long drive... We love you guys. After they got here we went to brunch and got much needed fuel for the day. It was really nice to get away for a couple hours and rest our bodies and minds from what has been going on. During brunch Rizza was sitting next to me and her phone rang, it was UCSF calling. As everyone at the table got quiet and tried to listen in, I stared at her face and expressions to see what I could figure out without hearing the conversation. When she first picked up the phone and looked at who was calling and getting on the phone, she did not have a worried look but a look of "why are they calling so early?" We have been preparing for the worst but praying and hoping for the best, so to us this was still an early call, only a few hours had passed since we left Maia's side... The call, let's get back to the call... Okay. As Rizza listened and we noticed her facial expressions were all good and all positive. She got off the phone to tell us they are close to being done and that Dr. Gordon Cohen, Maia's surgeon, was going to come talk to us in about 1/2 an hour. We told them we went out to eat and would be back in about an hour or so since we had not even got our food yet. We were all delighted that we were already called, being we were thinking the worst that we probably would get a call around 5pm. So we all got our food and ate and then made our way back to UCSF. We get back to 7 East and they call Dr. Gordon to come and talk to us. A short time later he comes in all smiles with his broad shoulders upright. He goes on to tell us everything went great, better than expected. We all say that because as you all know, Maia has not followed what is normal, she is on her own timeline and does what she wants. So Dr. Gordon went on to tell us about the some details of the surgery and answered any questions we had....

Then we just sat and waited for the 1/2 hour call, that lets the staff know that she is ready to come up. During that time, nurses and Drs circled outside her room checking on when is she coming up. The call came in and everyone started getting ready and then it was time... she was coming up. We then exited her room and went to the family lounge to wait until she was all settled into her room and ready for some visitors, for us to give her a kiss, for us to keep cheering her on. As we sat patiently and happily waited, Uncle Bobby and Auntie Violie showed up. It was really nice of them to come cheer on Maia and they even had there Maia Knows Heart shirts on. We all just hung out. Then we see the surgical team and anesthesiologists wheeling Maia by in her crib, so we knew the time to see her was coming closer. About 15 mins later anesthesiologist, Dr. Hung Nguyen, came in and updated us that she did great, she is such a warrior and she did better then expected since we all remember how she did after the Norwood surgery. He told us she should be ready for us to go in about 15 more minutes so we waited 20. Rizza went in just as one of the nurses was coming to get us. Rizza and Rommel went in first and then Rommel came back to get me and I went in. So happy to walk down the hall, so happy to go through the double doors and then to make the left turn into her room. I see her laying there with the tubes and wires all in and coming out of her. Did not bother me one bit as I know this is part of the healing process and this will make her better. I did look to the right side and saw that she already had peed in the little collection case. Yaaaaah! That was a concern at one point, but when I talked to Dr. Gordon, he was not concerned since he knew that she would do great, and like always, he was 110% correct.

Maia post-op pic, 3 chest tubes, 4 IVs, catheter, breathing tube

We continued on with the day by Maia's side, cheering her on with all the nurses and Drs. At about 7:30pm it was time to go home and get some much needed sleep and most importantly, update Marcus and check if he had any questions and show him we love him so much. We get home and he is so happy to see us, as we are to see him. Big hugs all the way around... We talk to him and see how his day went, at school, at Lala's work and back at home. He had a good day. He was not ready to ask how Maia was and I did not push it, then after a bit he asked how is Maia. We talked to him about how good she is doing, but at the same time we held back a little because she is going to get puffy from the surgery much like what he saw before, after the Norwood, or at least that is what we were thinking. We let him know that all the DRs and nurses are so happy baby sister Maia is doing so good. Then we went on to tell him we think the best day to come would be Thursday, on bingo day (normally he comes Tuesday which would be tomorrow). We as parents were thinking the day after the surgery may not be the best day, since we do not know how puffy she is going to be. We put Marcus to bed and then we also went to bed soon after as our adrenaline from the day went south and we were exhausted.

Tuesday, first day post-op

A little swollen, but looking good

We left early Tuesday (this morning) stopped to get our cup of love at Philz in the Mission, and I got my large "Anesthesia" and made our way over the hill to UCSF. Today is a Marcus day, so I come to see Maia and then take off to pick him up from school. He does not know that I am picking him up and does not know I am taking him to DB (that is Dave and Busters) to play games and to have fun. We support this little big guy as much as possible. As much as we went through the past couple years, so has Marcus. We always remember and take into consideration that as adults we can express and talk about what are feelings are and it is harder for kids Marcus' age. This gives me and him time alone together and time to talk and just concentrate on daddy-Marcus time. We as parents always want the best for our kid(s) and through experimenting, talking, watching his behavior, have found that he needs daddy days, mommy days, and needs to be shown that through all the turmoil that is going on, he feels loved, liked, appreciated, and that he is the first born (only child syndrome), I say this because it is a characteristic kids have and we recognize it, and make sure he knows we are always, and will be, by his side no matter what. We all love this lil guy so much and as he grows we want the best for him mentally, physically and emotionally.

The past couple of days have been crazy, but for now we can relax a little bit. It's such a big relief to know that so far she is doing great. Again, we want to thank everyone. This all wouldn't be possible without all the love, support and prayers we have received, and continue to receive, from family, friends, and the caring strangers that pray from near and far. We've been through so much already and we know there are more ups and downs to come in this adventure we call life. We're so blessed and grateful to have everyone be a part of the Mighty Maia Fight Team!!!

Cinco De Maia

Maia's next open heart surgery, the Glenn, is scheduled for Monday, May 5. This will be the second heart surgery out of three, and will allow for blood from her upper body (mainly the head), to reach her lungs without being pumped through the heart. This relieves her heart's right ventricle of having to pump all the blood to both the body and lungs. The key is for the pressure in her lungs to remain low, allowing for passive aggressive blood flow into the lungs. Blood to her lungs will no longer be pumped and will "free fall" down her right and left superior vena cavas straight into her lungs. Although this surgery is not as complex as the first one (Norwood), Maia is not the typical heart baby so the Drs are being extremely cautious. Maia's heart surgeries are all on the complicated end of the spectrum... she is a unique case and they've reserved Monday's surgery schedule just for her, so she is the only heart baby having surgery that day. 

Maia laughing

One of Maia's nurses came up with "Cinco de Maia" and it fits well as May 5 will be her surgery day. It's not only a big day for her, but for the nurses and Drs too. In their own way, they've all developed a relationship with Maia and they all want nothing but the best for her. Similar to her post-op care last time, they've set up a team of nurses for her, during this critical time in her recovery. These nurses have cared for her often and are very familiar with Maia's needs and wants. Maia has been very cheerful and ready the last few weeks... we all have! 

Maia in her "Rizzo" from Grease look!

This has also been a stressful week leading up to her surgery. We've known going into the surgery, the complications and difficulties involved regarding Maia's condition, and that the odds we're up against have always been high. As we pray along with everyone and hope for the best, we're still scared and well aware that anything can still happen... anything is possible. After the Glenn, we hope, pray and wish that Maia's recovery goes smoothly without any difficulties. We've learned to always take the average recovery time we're given, and double and sometimes triple it. Either way, as long as Maia is in good hands, to heal and recover, we don't care how long it takes or if she's in the hospital or at home.  We just want the best for her.  

Showing off some chubby rolls

Maia recently turned 8 months old on April 29! It's still hard to believe she's been in the hospital this long, and that we've been driving to the hospital every single day and Gordon started going in the morning, then back home and getting Marcus from school and coming back!! She continues to grow and amaze us all... just this past week, she's added a new facial expression to her repertoire. I call it "scrunchy face" when she crinkles her nose! Sometimes she looks mad, sometimes she looks funny, and sometimes she looks like a pirate!! She's been making this face often but we're not quite sure what she means by it!! But it's very funny and makes everyone laugh and smile! She's also started playing with a baby gym, which looks like a mini swing set frame where rings and toys can hang from it. At first she would play with the hanging rings and toys but we weren't sure if she liked it. She didn't show much expression her first day playing with it. However, now she loves grabbing the rings and playing around with the different toys... not as much as she loves watching tv though! For now the tv is still her all-time favorite "toy!"

Not quite sure what to think of this...

"scrunchy face"

Unfortunately, not everything Maia's been doing is necessarily "good." She has also continued to rub and scratch her right eye, so now there is a very noticeable rash on her eyelid. She seems to do it more when she's tired, but we're not always by her bedside so we can't stop her. She actually rubs and scratches both her eyes, but since the nail on her left index finger hasn't grown back completely, she can only rub it with her fingertip, so her left eye doesn't have a rash. For now I've just been putting some Aquaphor ointment on her eyelid to help it heal. We've thought about putting some mittens back on her, but this would also prevent her from sucking on her favorite fingers! Plus, I'm sure she would find a way to take it off! Which leads me to another thing Maia has started doing... she is much more active now with both her hands and feet! When she gets mad, she's able to grab her trach collar and pull it away from her, but it's tied around her neck with elastic, so it snaps back at her! (Ouch!) She's also able to pick at her trach ties, which kind of scares me. We really don't need her tugging at her trach ties and possibly taking her trach out!!! She's also been exploring more with her hands and touching all the different wires and tubes connected to her. She hasn't really pulled on anything, but she likes to feel around and rest her hands or hold on to the tubes. She's also been able to reach the PICC line on her left thigh. Thankfully it's taped down really good so she can't really mess with it too much, but she seems to be more curious about it... either that or she's just itchy from all the tape! Lately, it hasn't been just her hands that are more active, but her legs and feet too! Changing her diaper is no longer as easy as before... it can now get quite challenging at times. If I'm not holding her at the ankles tight enough, she's able to kick wildly and break free from my hold, which can make for some challenging changes!

Her poor lil eye is all dry and rashy

Just a few days away, Maia will be having another major surgery, the Glenn. We ask that you all continue to pray for her and that she's able to recover. We also ask that you pray for her Drs and nurses, and everyone that cares for her. We also ask for prayers for ourselves... that we may continue to have the strength to help her through this.

Once again, we want to thank all of you for choosing to join our family's journey. We can't thank you enough for all the kind thoughts, supportive words, and the endless amount of prayers.