Fourth Day Post-Surgery Update

The past 24 hours have been a mixed bag. On the upside, Evie has made significant improvement nursing, beginning with the 11 pm feed last night. Since that feeding, she has been doing a decent-enough job breastfeeding that we have not needed to syringe-feed her…yay! Understandably, it is still difficult for her, so it takes about 45 minutes to complete each nursing session. Since she is not eating as much as she was pre-surgery, after the 45 minutes, I still have to pump for another 15. The way she nursed today is much closer to the way I thought she would nurse immediately after surgery (so…mm yeah, probably a little too optimistic on that front, haha).

I think we finally found the sweet spot with the amount of medication to give her. Throughout the day, we lowered the codeine dosage, and she reacted fine to that. We’ll continue to lower the codeine dosage each time, until we are rotating exclusively between Ibuprofen and regular Tylenol (and then we’ll start weaning her off those as well).

On the downside, I’m not feeling well. I’ve had a headache behind my eye all day, my back/neck are killing me, and I’ve been nauseated on and off. I don’t know if I’m getting sick, if my body is reacting to five days of high intensity with little sleep, or if my body is fatigued from staying in one awkward position for multiple hours per day while nursing her (or a combo of all three). I really hope it’s not the beginnings of a cold, because that would be so awful if I got her sick on top of everything else. Despite not feeling well, I’m encouraged she nursed a lot better today than yesterday. Even though it’s more arduous for me now because I’m nursing AND pumping, I definitely think we turned a corner in her recovery, and I’m willing to take one for the team! Praise God 🙂

So please pray for me to feel better, for Evie to stay healthy and continue on the path of healing, for her to move in the direction of nursing better and eating more, and for endurance for me and Sean.

Here are some photos from today:

Guess she's getting enough to eat...that's some legit spit up, haha!
Guess she’s getting enough to eat…that’s some legit spit up, haha!

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She still has the "I'm really high" look most of the time :)
She still has the “I’m really high” look most of the time 🙂

Next post:

Fifth Day Post-Surgery Update

Pre-Surgery:

Out of Cleft Field: Evie’s Cleft Adventures

Third Day Post-Surgery Update

Last night and today were better than the previous 24 hours, but still not great. The good news is Evie has been wetting diapers consistently since last night, so we’re not concerned about dehydration any longer, which is a huge relief. However, she is still struggling to eat. We had one fairly good nursing session (the best one in 48 hours), in which she probably took about 2-2.5 ounces, but for the other five or six attempts, she either took very little or refused entirely. Fortunately, she’s willing to eat via syringe, and has been taking about 2 ounces every few hours.

Sean and I are a good team and have established a good system together. After working together to encourage her to nurse, I pump while Sean syringe feeds her. I am so thankful to have such an amazing husband who is so involved and helpful. I can’t imagine doing this alone or with anyone else. He’s incredible!

Throughout the day, we increasingly spread out administering the medicine, and are now rotating every 4 hours between Ibuprofen and the Tylenol w/codeine. About midday, we also began halving the Tylenol w/codeine dose and adding regular Tylenol instead. This schedule seems to be working ok – her pain seems to be well-managed, although she is apparently still in too much pain to nurse. I mean, shoot, she has stitches that extend from the inside of her nose and wrap all the way around to the inside of her lip…I wouldn’t want to eat either. I have no idea what the ER doctor was thinking…telling us to stop the codeine cold turkey. What terrible advice!! I guess I’ll know better next time.

The especially difficult thing about all of this, is that she can’t talk to us and communicate what her pain level is. Like I mentioned in yesterday’s post, it’s a catch-22 with the pain meds. We want to wean her off the medicine (especially the codeine), as soon as possible so she can begin nursing better, but not at the expense of her comfort…which also results in her refusing to nurse. It’s been a lot of guess-work and trial-and-error to find the perfect balance between pain control and alertness.

I am thankful today was calmer and less eventful than yesterday. I am still experiencing the “peace of God, which surpasses all understanding,” and have not felt anxious today. Tired is another story, though 🙂 It’s been a demanding schedule with the meds/feedings every few hours around the clock, and it is definitely wearing us down. Syringe feeding is extremely tedious and takes 45 minutes to an hour to complete…and she spits a lot of milk back up. Thankfully, we have amazing friends bringing us meals every night this week, which we are SO grateful for…one less thing to worry about and fit into the schedule. For the last four days, Sean’s parents have been taking care of Caleb almost exclusively and we are very grateful for that as well…there is no way we would be able to take care of him, too, since Evie’s feedings require two people. And if you know Caleb, you know he requires a high level of supervision or our house would burn down! 😉 Please pray for an improvement in nursing in the next 24 hours, and for stamina for us!

Here are some photos from today:

A hug
A hug for dad
Gouging dad's eyes out
Gouging dad’s eyes out
We even got a smile
We even got a little smile
Trying to figure out what the heck is on her arms
Trying to figure out what the heck is on her arms
She got to play a little
She got to play a little
Swelling is down more...especially her lip
Swelling is down more…especially her lip

Next post:

Fourth Day Post-Surgery Update

Pre-Surgery:

Out of Cleft Field: Evie’s Cleft Adventures

Second Day Post-Surgery Update

It was quite the eventful day. I posted a lot of updates on facebook, but I can’t fall asleep and decided to write a detailed summary of the entire day on the blog. Evie continued to refuse to eat (except for a couple of ounces via syringe) throughout the night, and by 7 am she still had not peed, making it 11 hours since she had a wet diaper. We called the Kaiser nurse advice hotline, who said they would get in touch with a local doctor to see what we should do. Kaiser called back a couple of hours later, and told us we needed to go in to urgent care in Pleasanton at noon. Then they called back a half an hour later, and said we should instead go to the nearest hospital’s ER, since they did not have the capability to give her fluids if she needed them at urgent care.

So we packed up our things, and headed out to Kaiser Antioch Medical Center. She still hadn’t peed by the time we got there, making it 17 hours since her last wet diaper. She was checked out right away, but there was a long line of people waiting and no rooms available, so we were sent back to the waiting room. While we were in the waiting room, she finally peed (I don’t know if I’ve ever been more excited about pee in my life…well, except for the time when we went through a similar dehydration scare with Caleb as a newborn, ha!). We gave her more ibuprofen and it was time to try and nurse her again, so the hospital staff kindly set us up in an empty room. She ate a tiny bit before she couldn’t stay awake any longer. Soon after that, we were transferred to a room. I thought it was going to take several hours due to the long line of people waiting, but I guess they bumped us up in priority because we only waited for about half an hour, which was a blessing.

The doctor soon came in to see her and said she was dehydrated, but not severely, so he didn’t think it was necessary to hook her up to an IV. He also checked her stitches and said everything looked fine there, so that was reassuring to hear as well. He said there’s really no clear rule when it comes to dehydration, so he instructed us to continue to keep an eye out for signs of severe dehydration, and to take her in to her regular doctor on Monday to be checked on. We also talked about her meds, and he thought we should discontinue giving her the Tylenol w/codeine, since it was making her so lethargic and unable to eat. He also said the codeine was probably making her retain more water, which is why she was not peeing, and could also be making her feel nauseated. He said we should continue the ibuprofen every six hours, and give the Tylenol w/codeine on an as-needed basis.

We left the hospital feeling encouraged that discontinuing the Tylenol would help her begin eating better. When we got home, we were able to get her to eat a couple of ounces via syringe, and then we let her sleep. I took a nap too, and then woke her up at 6 pm to see if she would nurse. Turns out, stopping the Tylenol was a huge fail. She started screaming from the moment I woke her up and adamantly refused to eat, because she was obviously in a lot of pain. It’s a catch-22…give her codeine and she can’t eat because she’s too lethargic, but don’t give her the codeine and she doesn’t want to eat because she’s in too much pain. We decided to give her more codeine, because we figure it’s better for her to not be in pain and not eating much, than to be in pain and not eating anything. After discussing various options with Sean, we’re putting her back on an alternating meds every 3 hours schedule, which is what we were doing until yesterday evening when we were told to up the codeine dosage by a Kaiser nurse. Hopefully this schedule helps her to stay relatively pain-free, but slightly less lethargic. Every time we wake her to give a medication, I will continue attempting to nurse her first, then we’ll move to pumping and feeding by syringe (which is mostly what we’ve been doing).

Today was another difficult one, but aside from bouts of frustration here and there, I feel better than yesterday and less anxious and upset. I know this is due to all the prayers and God at work in my spirit. My mind keeps meditating on Philippians 4:6-7 – “Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” I truly have felt His peace today.

This experience has been harder than I ever imagined it would be, but I know “this too shall pass” and all will be ok, because we are in the hands of our Father who loves us so deeply. It still sucks and is no fun (and it’s still really sad to see her struggling and so miserable), but there is a calm in my soul and it was a tear-less day (which I seriously thank Jesus for, because I hate crying…it always gives me a massive headache).

In the spirit of November and Thanksgiving, I have lots to be thankful for today: her congestion went away, no severe dehydration, no IV, no hospital stay, quick admission, electric pumps that are efficient (and the only way I will be able to continue breastfeeding Evie after all this is over by maintaining my supply), nana and pop pop taking care of Caleb for us, and an amazing husband by my side every moment, who is now a master at syringe feeding 🙂 I am sure there are plenty of others, but I am still exhausted and those came to my mind first. We would be so grateful for continued prayers for Evie to stay hydrated, heal quickly, and return to eating well soon.

Here are a couple of photos from today:

Evie's "is this real life?" codeine face :)
Evie’s “is this real life?” codeine face 🙂
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Swelling is down today

Next post:

Third Day Post-Surgery Update

Pre-Surgery:

Out of Cleft Field: Evie’s Cleft Adventures

First Day Post-Surgery Update

It was a rough night and day today. We woke Evie up every 3 hours during the night to give her medicine and breastfeed her. She did OK nursing overnight and early this morning, but she’s congested which is making it difficult for her to breathe through her nose…making it all that much more difficult to nurse, resulting in her getting worked up and frustrated. Later in the morning and early afternoon, things got worse. She started refusing to nurse, so I pumped and Sean was able to feed her via syringe. Then in the evening, she refused to eat at all. After a couple of hours, she finally drank about an ounce of milk via bottle, and about an hour ago, I was able to get her to nurse and she probably drank another ounce (i.e. barely anything…but just enough to keep her hydrated). We’ve been on the phone with Kaiser asking them what to do, and they gave us some tips on feeding with a syringe, and said we need to monitor her diapers tonight to make sure she’s peeing (i.e. not dehydrated). If she keeps this up and does become dehydrated, we’ll be heading back to the hospital. In the meantime, I’m pumping every few hours to make sure I’m keeping up my supply. On top of it all, our heater stopped working again this morning, so Sean had to spend time fixing it.

Sean and I are feeling exhausted and drained…physically, mentally, emotionally. I knew this was going to be really hard, but I wasn’t expecting to be so emotional about it all. It’s just really difficult as a mom to see my daughter so miserable and struggling so hard to eat (and she can’t talk to me to tell me what’s going on). Compared to yesterday, she’s in a lot more pain, and keeps whimpering in her sleep…it’s really sad. She really hates her arm restraints (“no no’s”), and becomes frustrated with them too. And as strange as this sounds, I’m really mourning the loss of her cleft, and I’m having a hard time with the fact that she’s practically unrecognizable because her entire face is so swollen… she just doesn’t look like my baby girl 🙁

I know God is in control and everything is going to be just fine, but right now it sucks and it’s really overwhelming…and I think it’s ok to feel that way and acknowledge that. I know people experience much worse things in life, but in this moment, I am sad for sweet little 3-month-old Evie Love, and it’s been an upsetting and stressful day with her refusing to eat. These are my raw and honest emotions. I’m also sleep deprived, which always makes everything seem much more formidable.

And on that note…I am going to bed. I am so thankful for all the support and especially the prayers, keep them coming! Pray that she would start nursing better throughout the night tonight, and tomorrow (and if not, that she would at least take some milk via syringe/bottle). And a special thank you to Robyn Schlichter, who allowed me to have a pitiful meltdown in her arms earlier today 🙂

Since they say a picture is worth a thousand words, here’s some photos that pretty much sum up our day:

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Next post:

Second Day Post-Surgery Update

Pre-Surgery:

Out of Cleft Field: Evie’s Cleft Adventures

Out of Cleft Field: Evie’s Cleft Adventures

IMG_2013-08-02-8257Evie’s cleft lip was a birthday surprise. Though some parents are informed of their child’s cleft at the 20 week ultrasound, I saw it when she was laid in my arms for the first time (birth story to come)! I knew something was wrong with her lip right away, but I was just so relieved to be done laboring to care much at all. Within ten minutes of her birth, she was examined by a pediatrician who diagnosed her with a unilateral incomplete cleft lip (unilateral meaning it is only on one side, and incomplete meaning it does not extend all the way up into her nose). He determined she most likely did not have a cleft palate, and then left us with reading material all about clefts.

When the pediatrician said she had a cleft lip, my absurdly naïve initial thought was “wait…I thought clefts were only a third world problem.” I guess I had this impression due to the “Operation Smile” commercials asking for donations for children in third world countries who need cleft repairs (I’m sure you’ve seen them), and because up until that point, I had never personally known anyone with a cleft. Obviously this isn’t the case 🙂 I later learned that clefts are actually the fourth most common birth defect, and 1/700 children are born with a cleft lip and/or palate.

Truthfully, the moment I received her diagnosis, I really wasn’t very concerned about it and felt at peace (although I haven’t always felt that way over the last few months). I’m sure this was partly due to the hospital staff’s promptness in educating us about it, and partly because she was already breastfeeding before I even had the opportunity to consider she might not be able to – so I never spent any time worrying about that. Ironically, she nurses WAY better than Caleb ever did…and he had no excuse!

The pediatrician told us she was going to need surgery at some point, but I tried not to dwell on that because I wanted to focus on being present in the moment and bonding with her – not stressing about the future. I wasn’t bothered by how the cleft made her look, and proudly announced her arrival to family and friends with a photo. I guess I’d like to think that physical appearance just doesn’t matter…she was and is beautiful to me inside and out, and I’m ok with how God made her. I mean, sure, I’ve had moments when I’ve wondered “why her?” or “did I do something to cause it?”, but I know that as far as medical problems go, a cleft lip is really pretty minor (especially hers).

When we got home from the hospital, I’m pretty sure I read every single internet resource on clefts to get informed (and then some). I learned that a child can be born with a cleft lip only, a cleft palate only, or both. Clefts occur when tissues in the baby’s face and mouth don’t form properly. Normally, the tissues that make up the lip and palate fuse together in the second and third months of pregnancy, but in babies with cleft lip and cleft palate, the fusion never takes place or occurs only partially, leaving an opening (cleft).

The goals of treatment for cleft lip and cleft palate are to ensure the child’s ability to eat, speak, hear, and breathe, and to achieve a normal facial appearance. Treatment involves surgery to repair the defect and therapies to improve any related conditions. Researchers believe that most cases of cleft lip and cleft palate are caused by an interaction of genetic and environmental factors, but in many babies, a definite cause isn’t discovered. Evie falls into this category because she defies every known association (no family history, Caucasian, female, no exposure to alcohol/drugs/smoke, I’m not obese, I don’t have diabetes, I didn’t take medicine while pregnant, and I took prenatal vitamins).

Our first week home from the hospital was fairly low-key, but life soon became filled with phone calls with Kaiser, doctor’s appointments, and pre-surgical treatments. We met with Evie’s plastic surgeon when she was just a week and a half old, and the appointment went really well. We thought Dr. Yokoo was very friendly, and took the time to answer each of our questions in-depth (she spent over an hour with us, which I think is a first in the history of all doctor’s appointments)! She has been doing cleft surgeries for a long time, and that boosted our confidence a lot. She thoroughly examined Evie’s mouth and confirmed that her palate was intact. We were so relieved to receive that news, because a cleft palate is really an entirely different animal requiring additional surgeries, and carries with it a host of likely complications including chronic ear infections, hearing loss, feeding difficulties, dental abnormalities, and lasting speech difficulties.

At the conclusion of our appointment with Dr. Yokoo, she took pictures of Evie and sent them to a orthodontist specializing in clefts for review. When the surgeon mentioned orthodontist, we were really confused as to why one would be involved (when I think orthodontist, I think teeth and braces). Two weeks later, we met with the orthodontist at Santa Clara Kaiser when Evie was 3 weeks old, and discovered it is because of a pre-surgical treatment called nasoalveolar molding (NAM) that is sometimes used with cleft infants, which utilizes orthodontic-like devices and is characterized by small adjustments to these devices over time.

NAM for babies with a cleft lip and/or palate is the fancy name given to the effort during the first few months of life to attempt to reduce the size of the gap in the mouth, stretch the lip muscles and bring the lip segments together, and to make the nose more symmetrical. This is supposed to be accomplished through the use of lip taping and a nose molding device. At our first appointment, the orthodontist gave us a power point presentation about NAM and showed us several before and after pictures depicting great results, so we were excited to go ahead with the treatment. He had us begin by doing lip taping only, which is a 5-10 minute procedure that must be repeated two to three times per day. Here’s what it entails: first, we use a q tip to apply medical adhesive (glue) onto her lip, next we cut a piece of medical tape to size, and lastly we lay the tape down on one side of her lip and squeeze her cleft together as we press it down across the other side. To remove the tape, we use another q tip with adhesive remover to get it off without ripping her skin.

At our next appointment with the orthodontist one week later, we added a nose molding device (see below) in addition to the lip taping, which in theory would push up on the cartilage of the flat side of her nose, gradually making her nostrils more symmetrical. This required us to first complete the taping routine described above, then apply more adhesive on top of the tape, attach a piece of floss to the nose molding device to prevent losing it since it’s so small, place the nose molding device *precisely* into her nose, apply more adhesive, apply another piece of tape to hold it in place, apply adhesive to her cheek, and apply another piece of tape to hold the floss down so she couldn’t pull the NAM device out. Whew! So with the NAM device added to the routine, it took about 15-20 minutes to complete and required two people…one to hold her arms down and keep her head straight, while the other did the actual application. We were instructed to change the whole get-up three times per day.

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Evie with lip taping and NAM
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At Kaiser Santa Clara
NAM Device
NAM Device

At this same appointment, we discovered that the particular type of NAM being used with Evie was experimental. Interestingly, this information wasn’t volunteered by the doctor, and only surfaced after I asked the orthodontist how long he had been doing it for. He admitted that he invented the device, is the only orthodontist in the world using it at this point, and it has only been used with a handful of other kids. Though NAM has been in existence a long time and used on kids with cleft palates with great success, this is the first NAM for kids with cleft lip only. This was news to us and we were a bit surprised, however, we figured there was no harm in trying it out.

After diligently attempting to do NAM for about five days, it became clear it was not going to work. It was difficult enough to get the device perfectly situated in the first place, and then over time as Evie nursed and the tape got wet and loosened, the device would inevitably shift and no longer be in the proper position. Since we were told it only needed to be changed two or three times a day, we thought we might be doing something wrong. Sean talked to a nurse about it, who said “oh yeah, that happens a lot”, we “just” need to change it after every time she breastfed. Um, what!?! When Sean told me what she said I literally laughed out loud. I don’t know if that nurse is aware of how often a newborn breastfeeds, but I certainly do not have the time or ability to perform a 20 minute treatment routine 8-12 times a day that requires two people when I have a husband who actually has a job, I don’t have a nanny, and I do have a (crazy) 2-year-old boy who I also have to take care of. Oh and did I mention they wanted us to return weekly for adjustments in Santa Clara, and the only available appointment time was on Friday afternoons? Between heavy traffic, the appointment itself, and stopping to nurse Evie, this was a six-hour round trip extravaganza. Believe me, it’s difficult enough to care for a newborn (and 2-year-old) without adding anything like that to the insanity!

After realizing it was completely unrealistic to continue with NAM, I still felt a great deal of guilt over discontinuing it, because as a mom, I obviously want to do everything I can to help my daughter. Part of me still wanted to make it work, but after discussing it with Sean and praying about it, we decided it was the right thing to do (although we have continued to do the lip taping, because we felt that was doable and actually effective). With the combined factors of the NAM treatment still being in the experimental phase, the inordinate investment of time, Evie’s hatred for the procedure, and our conscious rejection of the obsessive pursuit of physical perfection (in simple terms…we just didn’t think her nose was that bad), it became clear that it was not the right path for our family.

Tina, the orthodontist’s nurse, on the other hand, decided it was indeed the right path for our family, and made that very clear. LOL! But seriously. When we informed her of our decision, she literally yelled at us and accused us of not putting our daughter first and doing what was best for her. She told us no one else was experiencing the problems we were describing, and that we were giving up too soon (maybe they were too afraid to tell her)?? She also implied we were ungrateful for the orthodontist and his awesome treatment. So…that was an interesting experience.

On September 25th, when Evie was just shy of two months old, we took her to the craniofacial clinic at Kaiser Oakland. This clinic happens once per month and it was truly the mother of all doctor’s appointments – it was three hours long and she was seen by ten medical professionals: an ear/nose/throat doctor, head and neck surgeon, social worker, speech pathologist, nursing coordinator, medical assistant, geneticist, genetics counselor coordinator, orthodontist, and plastic surgeon. There were a number of other kids with clefts there (each in their own room), and the entire team of cleft specialists rotated through each patient’s room to do an examination and provide more information and resources. After all the kids were seen, the entire team met together to discuss each child and developed an individualized treatment plan. Although it was a long appointment, it was incredibly efficient and we were grateful to be seen by all these professionals at once. By the way…did you notice the orthodontist on the list of specialists? Yeah, that was kind of awkward.

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Taking a snooze in the middle of her appointment

During this appointment, we learned from the geneticist that we have a 3-5% chance of having another child with a cleft, and Evie’s children will also have a 3-5% chance of being born with a cleft. He also confirmed that she does not have any syndromes associated with clefts. She’ll continue to be monitored by the craniofacial team through skeletal maturity at 16-17 years of age, and she may need (or rather, want) nose straightening surgery when her face is fully grown since her nostrils are asymmetrical (i.e. her nose is a little flat on one side). After her upcoming surgery on November 21st, her next group examination will be at two years old, when she will have a comprehensive speech and language evaluation, as well as a hearing evaluation from the team audiologist.

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You can see her nose is a little flat on the cleft side, but it’s really not that bad in my opinion

Although it is not anticipated that Evie will have any speech or hearing difficulties, we were told that some children with cleft lip only may have a submucous cleft palate, which means the skin covering the palate is intact and everything looks fine, but the muscles are not completely attached. The only way to detect this is by analyzing speech and resonance patterns after she starts talking. Also, since the palate muscles control opening and closing of the Eustachian tubes, her hearing will be monitored.

With Evie’s surgery just a few days away, it’s becoming more real that it’s actually happening. She will undergo general anesthesia (i.e. she’ll be fully asleep), and the surgeon will make an incision along the edges of her cleft lip extending up into her nose. She will then use stitches to bring the cut edges together to shape Evie’s upper lip and nostrils. Most children stay in the hospital for 1 or 2 days after surgery, and it usually takes about 3 to 4 weeks for the incision to fully heal. After surgery, it will be easier for Evie to nurse and breathe (and eventually, talk). The incision will leave a scar that will fade and become softer and flatter in the months and years after surgery. Since everyone heals differently, she may need an additional surgery around 5 years of age to address scar tissue.

The surgery will take approximately 2-3 hours, and we will not be able to see her until she wakes up. Immediately after surgery, she’ll be very groggy and probably won’t want to eat for a while. Evie’s particular surgeon allows breastfeeding right away (some surgeons require special bottles), so hopefully I will only need to pump four or five times before she returns to breastfeeding. However, from what I’ve read on an online cleft community group, I should expect her to have a difficult time breastfeeding for the first week post surgery since she will be groggy from painkillers, plus her lip will obviously be sore. It basically sounds like I should expect to nurse her all day long, since she will eat so slowly (I’m having flashbacks of newborn Caleb, ahhh)! She will also need to wear arm restraints (“no-no’s”) for two weeks to keep her hands away from her mouth and messing with her stitches. I think it will be difficult to see my sweet-natured, mellow baby girl experiencing such a hard time. Who knows though, maybe she’ll surprise me and her recovery won’t be as awful as I’m imagining, but I figure if I expect the worst, I can only be pleasantly surprised 🙂

In a strange way, I’m a bit sad to see her cleft go. I’ve become attached to her wide smile and it’s just uniquely her. Not a single person has made a rude or insensitive comment about it, which I’ve been thankful for (apparently lots of moms of cleft babies are asked what they did to cause it)!? How awful! I’ve also read online on cleft forums that there are some people, (usually dads), who want to abort after finding out their child has a cleft at the 20 week ultrasound, which absolutely breaks my heart. Maybe I’m sheltered or something, but that blows my mind that anyone would even consider killing their child over a purely physical problem like a cleft. Ugh! Anyways, I know we need to have Evie’s cleft repaired for medical reasons and not just for appearance, but I think she’s beautiful and perfect as is 🙂 Not to mention she has the sweetest little personality!

Stinkin' cute, right!?
Stinkin’ cute, right!?

As we head into surgery, we’d really appreciate prayers for a smooth operation and recovery period. I would especially appreciate prayers for her to resume breastfeeding quickly and with relative ease, because I’m feeling anxious about that. Also pray for our family’s health – that none of us would get sick before or immediately after the surgery, since that would result in the surgery getting rescheduled (if she’s sick), or make it more difficult on us to care for her as she recovers (if we’re sick). It’s been an intense and busy few months, and I’m looking forward to getting past the surgery and for life to slow down and “normalize” a bit (whatever that means)!

So just in case this blog post wasn’t long enough for you (ha!), click here if you are interested in reading more about clefts!

And here’s a few more pics of Evie, plus a video, because I just can’t resist:

2 Days Old
2 Days
2.5 Weeks Old
2.5 Weeks
1 Month with lip tape
1 Month with taped lip
2.5 Months
2.5 Months
2.5 months with lip tape
2.5 months with taped lip
3 Months
3 Months

And just a few days ago, Evie laughing at 3.5 Months:

Evie’s Cleft Adventure Continues:

Evie’s Surgery Day Recap
First Day Post-Surgery Update
Second Day Post-Surgery Update
Third Day Post-Surgery Update
Fourth Day Post-Surgery Update
Fifth Day Post-Surgery Update
Days 6-10 Post-Surgery Update
3 Week Post-Surgery Update
1 Month Post-Surgery Update

37 Weeks & Anti-Nesting

36 Week Pic
36 Week Pic

I haven’t made a post in a few months, so I figured it was about time to do some sort of update. First, I apologize to all my dear friends I have completely slacked on calling/emailing/hanging out with in the last 8 months. I guess something about feeling like death makes me fiercely anti-social and brings out the extreme introvert in me :/ I still love you and I’m not avoiding you, I promise!

I was 37 weeks pregnant on Monday (my official due date is July 29th), and we’re ready for baby girl at any time. Much like my pregnancy with Caleb, my body is beginning to give me the dreaded blue screen of death, and I’m positive it’s just going to stop working entirely at any point in time. Everything hurts – my back, pelvis, crotch, legs, feet, ribs, esophagus, etc. I wake up approx. 8-10 times per night due to pain and/or to empty my bladder, and beginning a couple of weeks ago, I haven’t been able to make it through the day without napping when Caleb does. The 100+ degree weather for a while there didn’t help much either…or the constant chasing of a highly active, little daredevil of a 2-year-old boy. Ah, the joys of making a human being!

Even though I’m in a lot of pain at the moment, this pregnancy really has been much better overall than the last, which I am very thankful for (there is hope, Alyssa)!! The “morning” sickness disappeared within a reasonable time frame (and I didn’t have to take medicine this time), and most of the unpleasant symptoms of pregnancy haven’t been quite as bad. I also had better expectations of what pregnancy is like this time around, so I wasn’t as caught off guard by the difficulties. Plus Caleb and his awesomely crazy shenanigans keep me occupied, so this pregnancy feels like it went by a lot faster…although at this very moment, it feels like time is standing still as I wait for her! I’m getting antsy to finally meet her after 9 long months, and I’m really hoping she arrives a little early like Caleb did.

Unlike most pregnant women at 37 weeks (or so it seems), I am definitely not in nesting mode. I did go through a period of time when I was highly motivated to finish projects and get task list items accomplished, but that ended weeks ago. I don’t know if it was the heat that jump started my laziness, but all I want to do these days is eat food (prepared by someone else), sleep, be massaged, and watch tv/movies in my free time. This is pretty unusual for me since I typically enjoy being productive, but I’ve fully surrendered to my inner sloth. I must insert here that Sean has been simply amazing during my pregnancy, and deserves best-dad-of-the-year award. Not only is he the exclusive financial provider for our family, he has done almost all the cooking, cleaning, house projects, AND takes care of Caleb when he’s not at work and Caleb’s awake. Incredible!!!

In non-pregnancy news, I love that Caleb is talking more and more. Even with his 2-year-old ‘tude and mischievousness (which I secretively and oddly kind of adore), I really am enjoying the toddler stage much more than the baby stage. I just think it’s becoming more fun to parent as he becomes more verbal and interactive, and demonstrates his own mind and personality. He is absolutely obsessed with tractors right now, and I have watched this 25-minute educational tractor video he loves probably 100 times now (more if you consider the fact that it accounts for at least 60% of my dream content). My favorite time with him is reading and praying with him before bedtime, and I just love the simple prayer he prays the same exact way every night – “thank you Jesus…AMEN!” He really is such a sweet boy, and even though he may gauge his little sisters’ eyes out, I know he will be a fantastic and loving big bro 🙂

Other than taking care of an existing small human being and creating a new one, I’ve also been working on a personal project (up until my anti-nesting phase of course), that I first conceptualized a year ago. With Sean’s help, I’ve been building a baby product reviews and recommendations website to help other parents make intelligent, confident, and faster buying decisions. If you know me well, you know I research products obsessively before purchasing them and spend an unreasonable amount of time doing so. It’s strangely enjoyable to me, and I decided a website like this would be really useful (especially for overwhelmed first-time parents), in determining which baby products to register for/buy. I think it’s coming together really well, and I’m almost finished with my first complete review. I’m hoping to publicly launch the site sometime this fall after I’ve finished a few more reviews, so stay tuned! …Although this whole taking care of a demanding newborn 24-7 thing (plus a toddler) may set me back a bit…so we’ll see what actually happens 😉

16 Week Update

16 1/2 Weeks Pregnant

I’m nearly 17 weeks along (almost halfway, yay!) and anticipating the reveal of our baby’s sex on March 4th! I’m definitely showing and can feel baby move from time to time. I still get nauseous every now and again, but I am feeling much better at this point (unlike last time, when I was sick the whole darn pregnancy). I think I had a more “normal” experience with morning sickness this time around – I was nauseous often and vomiting about once per day, but none of this seven-times-in-one-day business. Fortunately, this time I usually felt the worst at night, which is when I had Sean’s help with Caleb. In general, I found the morning sickness bearable, and didn’t need to take medicine this time (…could this mean it’s a girl!?!?) I am SO grateful it’s been manageable this time, because I have no idea how I would have survived taking care of a *very* active little boy if I had been as sick as last time. I do know women who have done it and are still alive, though, so I suppose it’s possible 🙂

While the morning sickness has been better this round, I’ve had back pain since my first week of pregnancy (last time I didn’t experience back pain until after giving birth), and the pelvic pain that began during the third trimester last time, began near the end of the first trimester this time. The pain is still at a bearable stage if I limit movement, but I can no longer exercise (even just walking)…unless I want to be immobile and popping tylenol for the rest of the day 🙂 When I spoke with my doctor about it, she unhelpfully said: “hm, that’s bizarre…it’s obviously not due to weight…it’s probably a nerve…are you planning on having more kids?” Ha!

I feel less depressed than last time, largely due to the great support system we have here in Livermore, and all the wonderful “mom friends” I have who can relate to what I’m going through and are so encouraging to me (plus feeling less sick doesn’t hurt either). However, between the physical pain, wacky hormones, and unending exhaustion, I’ve definitely been struggling in all areas (physical, mental, emotional, spiritual). I feel extremely unmotivated to do anything beyond the bare essentials, and find myself taking things just one day at a time. I guess I just don’t feel much like “myself” when I’m pregnant. I can’t focus or remember squat, I’m obsessively and frustratingly indecisive, I’m easily irritated, and I have a hard time emotionally connecting with God and others, among other things. I keep reminding myself that this won’t last forever, and will be over before I know it.    …And then I’ll have two kids and different problems 🙂

In more positive news, I’m eating better than last time (and started off 10-15 lbs. lighter at the beginning of this pregnancy, compared with last time), I have not drenched myself in urine, and I have not used a suppository yet…good thing I have 24 more weeks left for such entertaining blog material 😉

In non-pregnancy news, Caleb keeps me on my toes. Although he can be a very sweet boy, he is extremely strong-willed and knows exactly what he wants. He is highly independent, has never exhibited stranger or separation anxiety, has no fear of getting hurt, is always pushing physical limits, and has never cared much for cuddles. He will not take ‘no’ for an answer without a “nuclear meltdown” as we call it, and absolutely cannot comprehend why on earth you would not give him what he wants, if he prefaced it with “please”. I thought this wasn’t supposed to start until kids turned 2!? Such an overachiever. Anyways, instead of giving in, we usually attempt to distract him from such tantrums with absurd tactics such as armpit farting, mooning him, pretending to throw a tantrum ourselves, etc. Hey – if it works, it works…don’t judge.

Here are a few recent stories of typical life with Caleb:

About a month ago, I took Caleb for the first time to the library for toddler story time. It went about as well as I expected…which was an epic fail. He refused to sit down, he kept walking up close to the woman telling the story and blocking the book from everyone, he ran circles around the group, weaved in and out of the table and easels up front (nearly knocking them over), kept going in and out of a storage closet I couldn’t fit into, practically demanded another child’s snack even though he had his own (the kid was Asian, so of course he very politely obliged), and ran out into the library yelling…multiple times. There were about 30 other kids there, and I am not exaggerating when I say he was the only one pulling such shenanigans. All the while, I’m getting hot and nauseous from chasing him around and desperately trying to keep down my breakfast. When we were leaving, Caleb got away from me (yet again), and the librarian said “oh…it’s you.” Haha! I took a pretty awesome nap that afternoon.

Two days later, Caleb made a mad dash straight towards a 45 mph street and got about halfway into it before I could catch him (by God’s grace there weren’t any cars coming at the moment)! I hadn’t cried/hyperventilated so hard since Caleb was an infant and wouldn’t eat…it was a really scary experience. After I wrestled Caleb into his car seat, I spent 10 minutes calming myself down before I could manage the drive home. Of course he just thought it was the most hilarious experience and couldn’t stop laughing! ????????????

More recently we were at a park, when Caleb made a mad dash (darn those mad dashes…the kid is FAST) straight towards a clearly agitated, unleashed dog. Again, I ran as fast as my (pained) body could go, and scooped him up before disaster struck. Seriously? I cannot catch a break! All I can say is hopefully this mad-dash-straight-towards-impending-doom nonsense ends before I’m 8 months pregnant. I swear I’m gonna have a heart attack one of these days!

Though it’s true Caleb is a handful (for which I apparently have myself to thank…my mom says he is just like me when I was his age), he also has many wonderful qualities. For starters, he’s hilarious…and maybe a little OCD. He is always pointing out dirty spots on the carpet or trash outside, and exclaiming “EWWW! GROOOOSSSS!” He’s always asking to dust or vacuum, and I’m telling you, he really gets into it (video included below). Hopefully his fondness towards cleaning lasts until he’s at least 18 🙂 Whenever someone farts, he reliably yells “poop!”, which is pretty funny. He hates wearing clothes (he’s constantly discarding his pants), and loves running around naked after his bath. He’s flirtatious and particularly into blonde-haired girls, and likes to tell them they’re “pretty.” He had his dream come true this Valentine’s day when he was fed chocolate covered strawberries by (blonde) Tanza Lewis, while groping her leg (reference below picture).

Let’s see…whenever he has seen me dry heave or barf, he starts to imitate me. He has an “evil laugh” that inevitably surfaces when he is trying to pull out my earrings. He loves babies, and usually tries to hug and/or kiss them, and becomes very concerned if they are crying. Our friends with dogs know they have to put the dog bowl up before Caleb comes for a play date, because without a doubt, he will flip it. He typically plays very well with other kids, and is especially fond of his friend Isaac. His laugh makes me happy, and in the rare moments he concedes to giving me a hug or kiss, I’m even happier 🙂

Should We Seek God’s Will For Our Lives?

[I began writing this post several months ago, but life happened (literally, haha), so I haven’t been writing much lately. It may seem a bit outdated now, but I think it’s a good post and worthy of publishing.]

When we announced that we would be housing a homeless woman and her newborn twins, many people said to us: “Wow, that is so amazing you were called by God to do this.” While we found the support encouraging, those words also struck us a bit funny. It seemed like people thought we had either a) received a very specific, unique leading from God to do that, and/or b) that God had given us certain gifts/strengths to be involved in this type of ministry. In actuality, neither are true.

Many Christians desire to know God’s will for their lives and spend a great deal of time attempting to discover it. We pray and wait for that moment when God reveals his mysterious and secret “plan” for our lives. We hope it will be obvious and perfectly clear, like a billboard on the freeway, an angel appearing in the night, or an audible voice that tells us specifically what to do. In the absence of such spectacular works of God, we find subtler methods of grabbing at any available glimpse of that step-by-step road map He seems to be keeping just out of our reach. However, in our case with this woman, and in most cases, there was no supernatural guidance directing our path. The way we sensed “our calling” was simply this – we read in the Bible we are to love and serve those in need, and we have extra rooms in our house. Period. The End. There was no billboard, no angel, and no voice. Just doing what Jesus said to do.

A couple months ago at church, my pastor, Steve Madsen, put it this way – “Each of us has already been given a big portion of our life assignment. It’s in the scriptures. 90% of your life assignment has already been given to you…You’re only waiting for the local application of what God said to do.” Too often, we over complicate the assignment God has given us. Sadly, all the time we spend searching for God’s specific plan for our lives could be used to accomplish the aspects of His plan that have already been very clearly communicated in the Bible.

In his book Forgotten God, Francis Chan has the following to say about searching for “God’s will”:

There are very few people in the Scriptures who received their life plan from God in advance (or even their five-year plan, for that matter!). Consider Abraham, who was told to pack up his family and all his possessions and start walking. He didn’t know where he was going. He didn’t know if he would ever be back. He didn’t know any of the details we consider vital (e.g., his destination, how long the venture would take, what the cost/rewards would be, whether he’d receive a 401(k) or health insurance). God said to go and he went, and that’s pretty much all he knew.

I think a lot of us need to forget about God’s will for my life. God cares more about our response to His Spirit’s leading today, in this moment, than about what we intend to do next year. In fact, the decisions we make next year will be profoundly affected by the degree to which we submit to the Spirit right now, in today’s decisions.

It is easy to use the phrase “God’s will for my life” as an excuse for inaction or even disobedience. It’s much less demanding to think about God’s will for your future than it is to ask Him what He wants you to do in the next ten minutes. It’s safer to commit to following Him someday instead of this day.

I believe there are two central barriers that have blinded us from the obvious – fear and pride. It is scary to take the commands of Christ seriously, and it is costly to live as He lived. We are afraid of losing the things we have worked so hard for in this life, so we rationalize our avoidance of obedience by convincing ourselves that the simple (yet difficult) commands must be “somebody else’s calling.” In our pride, we would like to believe that God’s plan for our life is more advanced than what He has already laid out in His word. In essence, we are thinking: “Why would God waste such an awesome and gifted individual, like myself, by calling me to the same stuff as everyone else?” The real question is: “Why would God entrust us with special, specific tasks, if we are not obedient to the basic commands we already know?”

Now before you start thinking: “But I’m sure you must have certain giftings and strengths that equipped you to take this woman in” – let me assure you, my strength finders score says otherwise 🙂 I’m a planner, and in this situation, plans were changing more rapidly than I could have imagined. Prior to this experience, we knew little to nothing about drug addiction. I am an introvert, and highly value my personal space and alone time. Hospitality is not one of our strengths and it typically stresses me out. You get the picture…this was one of those times when we were way outside our comfort zones and definitely operating out of our weaknesses. Honestly, it was a painfully stretching and difficult experience for me, and I was literally forced to rely on God every few minutes for wisdom and strength. At the same time, it was a wonderful experience because we knew we were living out what God called Christians to do by loving those in need. God gives each of us unique strengths that he expects us to use, but that does not mean we will always be operating in those strengths in following His call to love Him and others.

Lest you are now under the impression we are so great at following God’s will as laid out in His Word, I assure you, we are not. I often miss the mark and even deliberately choose to ignore His will, but I am trying, and I think I’m moving in the right direction. It is a continual process of growth as I choose to submit to Him.

To wrap this post up, here are my thoughts for those who want to discover what God’s will for your life is:

  1. Read the Bible. Makes sense, right? We can’t know what God’s heart or will is without going directly to the source and reading what His heart and will is.
  2. Pray for the Holy Spirit to give you the will and ability to follow through on what Jesus calls us to do in the Bible.
  3. Consider the resources God has graciously given you, for example: money, time, a home with vacancies, your spiritual gifts, general strengths, etc., and ask Him how you can use them to glorify Him now.
  4. Act! You don’t have to take on all the world’s problems at once, but simply begin by tackling one thing that God has put before you.

2012 Year-In-Review

I’ve been absent from the blogosphere for awhile because I’m pregnant (i.e. sick and tired), and have no motivation to do anything right now that isn’t absolutely required of me (and even then, it’s iffy) 🙂 I did, however, muster up the will to write out 17 notable events of 2012…in no particular order:

1. 2012 was a year of detoxing after our crazy and highly transitional 2011. It was the most stable year of our lives since graduating from high school – we lived in one place for the entire calendar year!

2. Celebrated our 5 year anniversary.

3. Became pregnant with our second child.

4. Caught viruses from “Caleb the Carrier,” 10 of the 12 months (he was sick himself only two or three times).

5. We survived Armageddon.

6. Caleb learned to walk, talk, understand what we’re saying to him, and ignore us.

7. Started blogging again and wrote 57 posts. I had the most fun writing about my pregnancy with Caleb, his birth, and my recovery, and found the process very therapeutic! 🙂

8. In July, Great Grandma Kay Fox passed away 🙁 I only met her once at our wedding, and sadly, she never met Caleb, but I know she was a wonderful woman! She will be missed.

9. November 9th, 2012, marked 10 years since Sean’s close brush with death.

10. Housed a woman struggling with meth addiction and her newborn twins.

11. Made a lot of great friends through our Church, who we are excited to do life with in 2013.

12. Two of my best friends married each other (finally)!

13. Caleb met his great-grandma Jane and his great-grandpa Jim, who traveled all the way to CA from IL.

14. We hosted some wonderful house guests including my sister Allison, my mom, the Dods’, and the Cook’s.

15. Sean was interviewed to be a juror on a murder case, but was dismissed for being too weird.

16. Completed work on Caleb’s room, the family room, and are nearly finished with our kitchen and guest room (photos to come).

17. God did an amazing redemptive work in the marriage of our friends Liana and Jeremy, whose vow renewals we were privileged to attend. Blog post coming – stay tuned!

 

Overall, 2012 was a great year full of blessings. We have much to be thankful for and are so grateful to the Lord for His unconditional love and grace in our lives. Looking forward to meeting Baby Felks #2 this year!

 

Baby Katie Beth Update

Author: Kevin Schlichter

Last February Melissa wrote an entry on Upstream Swimming about our daughter, Kathryn, and asked all of you to be praying for our family. Perhaps you’ve been wondering how that all turned out, so here’s a Thanksgiving update on her situation.

To recap, a few weeks before birth Kathryn Elizabeth (heretofore known as Katie Beth, KB, Kat, Kitty, Katie, or The Reason I’ve Been Super Angry and Not Sleeping for Nine Months) was diagnosed with ventriculomegaly, then born with congenital defects in her ears, nose, and mouth, and a couple of days later she was unofficially diagnosed with Zellweger Syndrome and tested positive for Human Cytomegalovirus (HCMV). Off the record we were told by one of her specialists that she had no more than six months to live—at the absolute longest. That’s when word started to spread. First our friends started to pray and word quickly spread to others in our church, then relatives, and then their friends and churches started to pray. We were getting cards, flowers, and e-mails from people we didn’t know all over the country telling us they were praying for us. And I don’t know why—I don’t know why He does anything that He does—but God answered those prayers in a way we didn’t expect.

Three days after she was born her ears had moved into a normal location and, although we had originally been told to expect difficulty, she was breathing and eating on her own. After a lot of blood samples, an MRI, and two months of waiting for genetic testing at the Mayo Clinic, her official diagnosis was made: Katie does not have Zellweger Syndrome—or any other known genetic defect. We had been praying for strength to get through the trial, hoping that the loss of a child wouldn’t ruin our marriage and that we’d be able to try again, but He had healed our daughter instead. She still has some brain damage and there may be other long-term effects from the HCMV, but so far she is doing well. In fact, she has been developing perfectly normally. She excels in her intelligence and fine motor skill tests at physical therapy (yeah, infant physical therapy) impressing her doctors with her ability to manipulate a pacifier into the correct position before putting it in her mouth, and her ability to hold her own bottle to feed herself. Kitty has been doing both of these for several months now. Her strength continues to lag, but not by a concerning amount and Robyn and I aren’t muscular anyhow. KB’s head is even a normal size—it was supposed to be disproportionately small as a result of the HCMV.

So this Thanksgiving we’re thankful for our daughter. We’re thankful that she’s here with us, but also for the experience—we grew as a couple and our relationship was affected positively by it. We’re stronger as a team; have a healthier perspective on certain things; opened up to each other and gained a level of intimacy we’ve never shared before. I wouldn’t wish an experience like this on my worst enemy, but I wouldn’t trade it for anything. Like everything else we do with God, it isn’t easy but it’s very worthwhile.

We’re thankful for our church family, friends, and relatives who supported us in very material ways. We fed not only ourselves, but at least one other family with the food that was brought to us at home and in the hospital. Our dogs were cared for, and we almost had our yard re-landscaped as well. Being around people like the Felkers pushes us to live our lives for God in tangible and meaningful ways. We’re thankful for the example you’ve all demonstrated for us.

Finally, and this is last because I want it to be remembered first, we’re thankful for your prayers. I don’t know why He healed Kathryn and not the other kids in the NICU, but seeing the People of God care for each other always encourages me immensely and provides the best witness I know of. So thank you for taking the time out of your day to pray for us, whom you’ve never met. You can’t fix everything, but you’ve made a difference to us.

http://kathrynelizabethschlichter.shutterfly.com/