2 Months Evee

Happy 2 Month Birthday Evee

Yes, it has "flown" by, but for the first time in any of my babys' life, I am so glad it has come and gone. I always hate my kids growing up at all, I always love whatever stage they are in and always hate it when they leave one stage for it means I am closer to the time that they will no longer be children - yet I love to see the changes and development and progress that occurs.

With Evee, I have loved seeing her in the "newborn phase", but it has been hard for she has seemed so fragile. Plus, never before have I had a baby's health improve so much when they hit the two month mark. So, in that way, I am grateful to finally have Evee reach two months.

Evee has been such a joy. We all adore her.

My boys absolutely love her, always talking to her. Grant even likes to touch her hand or foot while he sucks his thumb with his other hand.

Todd has informed me that I have created my biggest competition, and I am trailing behind her as far as what he would do for someone he loves.

And I cannot express what a joy it is for me to have this sweet little girl in my presence. She is always in my thoughts for I cannot stop thinking about her. And I am constantly taking pictures of her.

She is such an easy baby, she doesn't cry unless in pain or hungry. At times with her breathing being so laborious and her acid-reflux being painful, I wouldn't have blamed her if she would have been super fussy, but she's actually the opposite, incredibly sweet even though she has to deal with all this extra stuff.

Plus she's already sleeping through the night!

Evee is incredibly happy and social. At 6 weeks she was giving intentional smiles, and what for? For when people talked to her. She loves to talk and listen to people. While being assessed by a specialist, the specialist said, "She just makes you feel good about yourself" for she focuses on people and "listens" and smiles and coos in response.

We love our Evee girl so much. We're so grateful to have her in our home.

The Roller Coaster

I have been on a consistent roller coaster the last two months. I had felt that Evee's breathing had improved, but then I wondered if I was in denial or maybe that I had just gotten use to it. At one of her doctor's appointment, the doctor told me that the nurse freaked out telling the doctor that she needed to see Evelyn for "that baby is not breathing!" and insisted that Evelyn needed to be admitted into the hospital. Unfortunately I had actually felt that Evee was breathing pretty well at the time.

My sister Lyndee came to visit me for a few days to help out. After a bit she told me that when she first got here and heard Evelyn for the first time she was feeling quite panicked for Evee.

On Monday, August 13th, while at an appointment with the pediatrician, Dr. K, I asked him if Evelyn had improved her breathing for Todd and I both felt that she had improved. Dr. K paused, looked at Evee, looked at me, then broke the news to me that I had just gotten use to it. I had to laugh at myself a little bit for having convinced myself otherwise. I had to laugh or else I would cry.

That Monday ended up being a really difficult day. If the fact that Evelyn's breathing hadn't improved had been the worst news that Dr. K. gave me, Monday may have been different. But it wasn't.
Dr. K. told me that there was a good chance that at our upcoming ENT appointment that we had on Wednesday, that the ENT would want to talk about putting a trach into Evee. Dr. K told me that we were fortunate that it was summer time, so Evee's chance of getting sick was lower (if she were to get sick it could be really troublesome for it could cause swelling to her already compromised airway), but that usually someone with laryingmalacia as severe as Evee's would already have a trach put into place. Dr. K felt that the only reason she wasn't already trached was because of the fear that with her hypotonia she may never be able to be un-trached. This was tough, very hard to hear, yet I did appreciate Dr. K being honest and upfront with me.

While at this appointment, Nathan (who was watching my boys for me) called to say that William had hit his head when he ran into a door. That boy is incredibly accident-prone. After communicating with Nathan and then with Todd through texts and pictures, it was decided that I needed to bring William into Todd at the ER.
After the appointment with Dr. K, Lyndee and I ran to my house. I dropped Lyndee off and took William over to the hospital. I went back into the ER where Todd took us into a room and looked at William's head. He said that it could use a staple, but since William was so distraught and I was needing to get to Evelyn's next appointment, he decided to just use the glue.
After we were done, I drove William back home and picked up Lyndee so we could go to another appointment for Evelyn downtown. With the extra time it took to get William's head fixed, I felt hurried and anxious. While driving in Cleveland, I was on an empty road that I had never been on before. Soon I noticed a cop behind me and was pulling me over. Apparently I was speeding on that empty road (that he even admitted was a speed trap), and he gave me a ticket. I was upset. Didn't he understand what I had already gone through that day?! I had been told that my baby's breathing had not improved, that she may have to get a trach, and my 5 year-old cut his head open. Really, Really?!
We went to the next appointment. Thankfully we didn't get any bad news, which is great news. After the appointment we were getting into the car in the parking garage. Evelyn had recently gotten an apnea monitor (which has been such a blessing and peace of mind for me, now I can go to sleep at night for it sounds an alarm if Evee's breathing or heart rate drops). 
As I was trying to get Evee into the car, the monitor malfunctioned and the alarm went off. It was a loud constant beep. I couldn't believe how loud it was. Nothing I did would stop it either. Finally I put it into the trunk of the car, where we could still hear it, but it wasn't as loud.
Needlessly to say, I was so grateful to get home. When we got home, I found a letter in the mailbox from the city of Cleveland. It was a speeding ticket, requiring payment. When my mom had brought my boys to visit Evelyn in the hospital she had been speeding and got caught by a traffic light camera. Though my mom would've been willing to pay the ticket, Todd and I felt so grateful for her help and service she gave us when she was visiting that we felt that it would be ungrateful of us to request that she pay a measly bill. But I will say that when it rains it pours.
It had been a really hard day. When I was able to finally just sit down that evening, I felt so overwhelmed. All of the other difficulties that had occurred that day had added insult to injury, but my main concern was Evee. We didn't want a trach to be placed in her, but at the same time if the doctor felt that if it could save her life, then we were up for it. It just wasn't something that you would ever want to happen for your child though. I was very grateful Lyndee and Nathan were there, not only to go to my appointments with me and to watch the boys, but for the moral and emotional support, plus that evening Lyndee just took charge of the boys, allowing Todd and I to process the information we were given.
The next day Evelyn had two appointments, one of which Todd was able to come with me. It was for cardiology. Though the cardiologist said that everything looked great (which was good news), I felt so very sad and depressed. I hate having to go to so many doctor appointments, not only because of the time, but I hate to think that my baby isn't healthy. Plus I was feeling so anxious about the next day's appointment with the ENT doctor.
Finally the day of the ENT appointment came. Another reason I was apprehensive about the appointment was that the last appointment I had with the ENT, Evee was admitted into the hospital. Todd was able to come, which I was very grateful for. The resident doctor met with us. He had remembered Evee from when she was admitted into the hospital. When the ENT came in he told us that at this time Evee doesn't need a trach......yay!!! He felt that if we could get her acid reflux under control, that her breathing would probably improve immensly for the acid was causing a lot of swelling in her already compromised airway.
Todd and I went home in such good spirits that day. We had such good news, we couldn't believe it. Our emotions had been so incredibly low and then we were riding high. It really was such a roller coaster, and in some ways continues to be.
Since then, we have had some scary moments, moments where you question whether you are making the right choice, questioning if you should take your baby into the ER, questioning if the doctors will be able to help, questioning if your baby will continue to breath. I will not lie, it has not been easy, but as we take each day at a time, we have been able to press on.
Evelyn did have to get another 24 hour pH impedence test to test the acidity of her stomach and throat. I had to spend several hours going downtown to the hospital, watching in agony as Evee cried while this probe was put down her nose, then I had to stand back and watch while she had to be strapped down for an x-ray to check the probe placement. Needless to say, it was not fun. I got home exhausted and wiped out physically and emotionally.
We have been encouraged to give Evee a lot of tummy time for not only does it allow her throat to open up (hypothetically, not sure if it really works) and allows her to strengthen her muscles. After being home for an hour Evee was on her tummy with her head turned away from me. When I went to look at her face I was shocked to find that she had pulled the probe all the way out! I was frustrated that I went through all that for nothing and would have to be repeating it again. At the same time I was proud of Evee for being strong enough to pull the probe out and smart enough to realize what was causing her the discomfort. The rest of the evening I could almost swear she had a "I'll be really good since I'm guilty" attitude.

When we got the probe into place the next day, we covered Evee's hands with socks to keep her from pulling it out again.
 
Evelyn has continued to get stronger and stronger every day. Her breathing has improved so much, Dr. K even verified that her breathing had improved and that she was getting stronger. He did say that her efforts to breath are comparable to us running a marathon all the time, which is difficult, but the good news is that she is doing it and she is still thriving! Plus, I know all about endurance exercise.

First 6 Weeks

Or, should I say the past 6 weeks? Having a newborn is so much fun, and Evelyn has been a lot of fun. But the past 6 weeks has been quite the whirlwind for us.

One thing you should know about me (if you don't already) is that I am not a dramatic person. I actually have a difficult time being the center of attention and prefer to be in the background. I don't usually share (or have?) many emotions, and I find that I am a lot more expressive of my emotions on my blog than I am in person.
But in the last 6 weeks, I have felt many emotions and felt like I have been on a roller coaster. I have cried more than I have in a long time. Especially after a particularly bad day, I have found myself, usually occurring in the shower, and I just start crying. The experience of seeing Evee (pronounced like Eve+ee) being resuscitated affected me more than I realized. It was a moment of sheer fear. It doesn't haunt me as much anymore, but for the first couple of weeks the feelings and memories of it was still very real.
I wish that I could say that the memory of Evee being resuscitated was my biggest concern, or biggest reason for "drama', but unfortunately, it is not. I'll try to explain, for the most part, of what has been going on in our home:

After only being a few hours old, Evelyn was transferred downtown to Rainbows Children Hospital where she could be admitted to the NICU there. The reason for this was because her pulse-ox went down to 42%, Todd said that if he saw a patient in the ER with a pulse-ox that low, he would assume that the person was a goner. But Evelyn is a strong fighter.

I obviously don't have much experience with hospitalization for I had assumed that if you were admitted to a hospital, it was a lot like being in the ER: doctors and nurses rushing in, performing procedure and test one after another, everyone in a panic to keep the patient alive. In reality, it's a lot slower pace. You get one, maybe two tests or procedures done a day, and the rest of the time is spent waiting for results, waiting for the next procedure, waiting for the next specialist to come and give their two cents, or just monitoring the well-being of the patient. (I realize being married to a doctor, I should have understood these things, but like they say, "The shoemaker's kids go shoeless")

The NICU, though no fault of it's own, was a little tough for me. I was still trying to recover from a very difficult delivery. I was sore and very tired. We talked to so many doctors and so many specialist, but I only vaguely remember any of them for I was so tired and there were so many with so much information.

It was difficult to see my baby strapped with so many wires and monitors. During her first night of life, I woke up to her soft, sweet cry. I got off the sofa bed, being careful to move slowly for I was sore and light-headed, and moved to her crib. There wasn't much I could do, I couldn't pick her up, and I definitely couldn't feed her. But I knew that she needed human touch, human connection, so I gently stroked her arm while I talked and sang to her. I felt that she recognized my voice. They were worried that her airway may be blocked by hemangioma tissue, so for the first couple of days she got her fluid from an IV and I wasn't allowed to feed her. Whenever she was upset, I had to find another way to soothe her rather than by feeding her. This was very different from any newborn experience I have had, yet there was something special about the only way to soothe my baby was through connecting or comforting her.

The second evening, Thursday, we were in the NICU my mom brought my boys to see their sister for the first time. They were very excited, and they loved her. They were excited to see me too, and I them. Mikey said to me, "You guys need to come home...you've been away from us for two days already!" It was so hard to be away from them, but there was no way I was going to leave my baby.

We even got a visit from Ruth D

After the second day, Evee was off oxygen and seemed to be doing well. She had started having a stridor (noisy breathing), which they found to be caused by laryngomalacia, but everyone said that it isn't much of a problem, just makes the infant have noisy breathing, and they just grow out of it.  All of her tests were coming back good, and after finding that she didn't have any hemangioma tissue in her throat I was able to feed her. She hadn't needed any interventions during our stay, so we started itching to go home.

Todd's parents visited

Loving Grandma

Aunt Kim visited as well

On Sunday, our fifth day in the hospital, we were discharged to go home. We were so relived. It was so nice to finally bring my baby to our home. The boys were excited to have us home, and I was grateful to sleep in my own bed.
The boys came and visited us just before we were discharged. They got to hold Evee for the first time.

 

Grant didn't want to hold her, but he was very intrigued by her, especially during her car seat test

With Beautiful Grandma Patti

Mikey was very interested in the monitors. Can we say "Future Doctor"?

I cannot express how grateful I am for my mom. She put her life on hold for a month for me. Then for the last week of that month, she was the stable person in my children's lives. She gave them structure and love and made it so that Todd and I were able to focus on our little baby.

When we were discharged, we were given a list of doctors that we needed to follow up with. We were also instructed to have her seen by her pediatrician within the first couple of days. I called my boys' pediatrician, who is very knowledgeable and nice, but we wouldn't be able to get in until the middle of August---6 weeks later! So we were scheduled (since it was just a routine check-up) to see a family practice guy that was helping cover for our doctor. I couldn't believe that we couldn't get into our pediatrician, especially since I have 4 children that go through him already - but in reality I don't take my kids to the doctors all that often, so maybe he was avoiding me. Todd called the office and was able to get us in to see a different pediatrician.
We went to this pediatrician, Dr. K. One thing he mentioned was Evelyn's low muscle tone. We had noticed that she looked rather floppy, she laid spread out rather than scrunched in tight like most newborns.

When I held her, I was very careful with her head for she didn't hold it up at all. I knew newborns were weak, but this was different. I had just assumed that this was all either because of the epidural drugs in her system, her body being sore from the delivery, or from the weight of her head being too much. Her having low muscle tone now explained this condition.
When I first looked back on the midwife cutting the cord and Evelyn being resuscitated at the hospital, I was a little upset. If Evee had been born at home, the cord would not have been cut immediately. It is a common homebirthing practice to not cut the cord until it stops pulsating, about 15-20 minutes. This is extremely healthy and helpful for if the baby has not adjusted to breathing oxygen air on it's own, it still is getting oxygen from it's mother through the cord. I was disappointed in myself that I wasn't strong enough to keep going through the pain to deliver her at home, to keep her from being resuscitated. Now, I am not sure if Evelyn would have needed to be resuscitated if she was born at home, but I believe the reason she wasn't breathing was because her lung muscles weren't strong enough to push all the fluid out and get the oxygen on their own. I know that I made the right choice to go to the hospital, even if it was just to get the ball rolling with all the medical care.
I was also very frustrated with how late in my pregnancy Evelyn came. My body felt ready to deliver her at least 3 weeks before she came, yet she came 11 days after my due date. Now I am so grateful that she came late for I know that every minute that she was able to stay in the womb she was getting bigger, getting stronger, more ready to come into this world. It is so funny how we get things in our mind about how we want our lives, yet the Lord loves us enough to provide a different way that actually is the better way. God is good.

Dr. K noticed her stridor and assured us that it was normal to sound like that with laryngomalacia, and that there really was no cure, just growing out of it. I was really impressed with Dr. K. He seemed very knowledgeable, sincerely concerned and working on the next step. For example he talked about starting the paper work for Evelyn to get the RSV vaccine for if Evee got RSV with her compromised breathing, it could be very problematic.
Evee's breathing seemed to continue to get worse. It sounded terrible, and she kept making chest contractions. Todd said that if a baby came into the ER with a stridor like hers, he would have her admitted into the hospital immediately, yet I felt as though the medical professionals were telling us that it was normal.
I told my mom my concerns about Evee's breathing and she made me feel that I was overly concerned. The next time I talked to her on the phone, my mom asked me what the sound in the background was. I informed her that she was hearing Evee's normal breathing. Suddenly even my mother (who never goes to the doctor) was nervous. 
Evelyn's breathing would get worse and she would turn purplish/blue if she got upset, so I would do everything I could to make sure she didn't cry too much. I felt like a first-time mother with my monitor and rushing to hold her if she even whimpered. I hold her all the time, and if I am holding her and her breathing is more silent, you know that there isn't much that will make me move from that position.
Nights were the worse, and still are. Her breathing sounds louder and appears to be more labored. I will just watch her, making sure she's still breathing. It doesn't help that she will have apneaic episodes, moments where she won't breathe for 10-15 seconds. Scary.
On Evee's 4 week birthday, July 25, I took her to her follow-up appointment with the ENT. The appointment was at Rainbow's and since Todd had to work that afternoon and not knowing if we would be home in time, I took her to the appointment alone. Previously Dorothy, a wonderful woman, had called me and asked if there was a day she could take the boys. We had settled on that day, that she would meet Todd at the boys' swim lessons and take them home with her while he went to work. She really was inspired, for while at the appointment the doctor told me that he wanted to have Evelyn admitted to the hospital.
The doctor, Dr. A, had put a scope down Evee's airway and confirmed that she had the laryngomalacia, a severe case, but he also saw milk coming up. He was guessing that she had reflux, which could be really bad for it could cause swelling in her throat and further compromise her airway. That, coupled with the fact that I told him that Evelyn will have apneaic moments, he decided that it would be best to have some tests run and to have her monitored in the hospital.
Having her admitted to the hospital seemed a little extreme to me, so I called Todd, wanting to do what he felt was best. He too thought it may be a little over-kill, but then just the night before he had stayed awake for several hours just watching her, worried about her breathing.He sided with the doctor and Evee got admitted.
I started crying on the phone. I was full of emotions. I was scared for Evelyn; I didn't want to do another hospital stay. I was feeling unprepared, not only did I have nothing with me but a diaper bag, but I had left my other four children thinking I would return in just a few short hours.
I was also concerned about what to do with the boys, knowing Todd had to go to work. Thankfully I have some incredible friends. When I had called Todd, he was at the swimming pool. When he got off the phone, my friends Missy and Susan immediately offered to watch the boys and right then and there set up the times and schedule. These are really incredible women, both having at least 3 kids of their own. I was so touched by their willingness to help.

The hospital stay felt long and lonely. Todd was able to only come for a few hours on Thursday, for the rest of the time he worked and spent the nights at home with the boys. The first time Evee was in the hospital, Todd and I didn't even turn on the TV, even warranting the nurse to ask us if it was broken. This time, since I had no one to talk to, I watched it a lot and was reminded of why we don't have cable nor watch TV much.

They ran some tests and monitored Evee. They did confirm Dr. A's suspicion, she had reflux, a severe case of it (I hate the word severe). They also confirmed that she had apneaic episodes of 10-15 seconds at a time, but her pulse-ox never dropped, so they weren't too concerned.

Evee was discharged Friday evening, on her 1 month birthday and once again I was happy to be going home.

I felt so up and down (and still do). When we were in the hospital, I felt that Evee was too healthy to be in there, yet once home and she was having some episodes of really hard breathing I was thinking enough wasn't being done for her. I was unsure of what point to take her into the ER for this type of breathing, though normal for her, did not seem normal at all for a baby.

At the pool the next week, I was telling Missy my concerns. A mom nearby came over. She introduced herself, Bonnie, and said she couldn't help overhearing but being a PICU nurse (and fellow mother of 5) she understood my concerns.

Bonnie was such an answer to my prayers, for I had been concerned about Evelyn yet sort of felt that by the doctors' and nurses' reactions I was over-reacting. I felt crazy. But Bonnie helped me feel sane. She agreed that I had a lot to be concerned about. She pointed out many things about Evelyn that were not good signs, and agreed with me that having laryngomalacia and weak muscle control was not a good combination.  She stressed to me how important it was to keep Evelyn from getting sick. She said that as a mom of many children, she knew that kids get sick, but that the same sickness that would just put my other kids down for a day or two could be disastrous for Evee. She gave me some good input and advice on what to discuss with Evee's doctors, and when I went into Evee's next appointment, I felt more prepared.

When I visited Dr. K (the pediatrician) he too got real with me. He said that sometimes doctors are just trying to find the balance of what a patient needs to know and what they are ready/not ready to know yet. He confirmed that they are all concerned about Evelyn, but right now there isn't much they can do but monitor her. He told me some of the realities we were facing and things to be prepared for. He stressed the importance of making sure that she was getting enough nutrition and watching her weight gain, for she was expending so many calories by just breathing. He said she could come to the point that she would be too tired and exhausted from breathing that she wouldn't be able to eat even though she was starving. And he too stressed that we do all that we can to prevent her from getting ill. He ordered Evelyn an apnea monitor, which gives me so much peace of mind. He also told me to enjoy Evee and continue loving her.

The last 6 weeks has been so stressful, constantly worrying about my girl, questioning what to do next. I've been spending a lot of time making appointments (didn't realize it could take 20 minutes just to make an appointment), even more time going to them, all while trying to be a mom to 4 boys and a newborn. But, I will say Evelyn is more than worth it.

Evelyn is such a good baby. She really doesn't cry without reason. By 4 weeks old, she has been smiling on cue. She loves to be talked to, especially when told she is a princess. She recently started to coo. She has the most expressionate face for a baby her age. She will give a "thinking scowl" that is so cute.

She has gotten so strong, improving her muscles and movements every day.

She loves her brothers, and they are nuts about her. I feel bad for the boys aren't allowed to do much with her, only occasionally allowed to hold her, and even though she takes me away from them, they do not hold a grudge against her at all. Instead they are very sensitive to her. They do their best not to wake her when sleeping, and they love to talk to her when she's awake. One thing that is really cute, yet at the same time very sad, is that in every prayer they will say "Please bless that Evelyn won't die". (A little disturbing, yet a child's prayer is very potent, so I don't intercede). Mikey even fasted for her on Fast Sunday and was convinced that he helped her by doing so.

I know a lot of people are praying for Evelyn and are concerned about her. I know that many of them are wondering what is going on, but I really don't exactly know either except that she is having breathing problems. We are really trying to do our best to care for her and to keep her from getting sick. But most of all, we are loving this incredible little girl in our home.

We love our girl!