Tied up

My mother said it perfectly when she told me that "If it's not one thing, it's another". Sometimes it certainly feels that way with these two special boys. I brought them to an IBCLC (International Board Certified Lactation Consultant) two weeks ago to try and figure out why Christian is having such a hard time eating (yea, I know, looking at him you wouldn't know it). In the beginning, I attributed it to his prematurity, then to a possible dairy sensitivity. Despite him growing and developing and a dairy-free diet, the issues persisted and some worsened. He would be nursing all the time, unable to sustain a latch, clicking his tongue, swallowing large amounts of air, and fussing and crying while trying to nurse from all the tummy cramps and pain. Turns out, both Christian and Joseph had tongue and upper lip ties! The IBCLC recommended a pediatric dentist in Albany, NY: Dr. Lawrence Kotlow. He does the surgeries with a laser instead of scissors, so no sedation, numbing, or stitches are needed. I did some further research on this doctor and found that he is the best in the country for this type of procedure; people have flown from Hawaii and Canada to have him do the procedures on their children!

We made the drive to Albany, NY and spent the night in a hotel. The following morning, the boys had their procedures. We were in and out within an hour. Christian did better than Joseph. I was under the impression that they would use laughing gas on Joseph but they didn't and when he came back, he was drenched in sweat. We learned about the aftercare, which required us to stretch out both the lip and tongue areas on both boys three times a day to re-open the surgical sites so they didn't reattach. The 6 hour drive home was rough but Joseph seemed to have it the worst. He would wake up about every hour, scared out of his witts, mouth bleeding, and screaming in pain. Christian woke up a couple times but I was able to nurse him for comfort and he was happy with that. That evening the stretching began...

...I used to think that one of the worst pain a mother could feel was watching her child suffer and not being able to do anything about it. I was wrong. It is so muchh worse when you are the one causing your children pain, regardless of it being for their own good. I can't even begin to explain what it feels like to have your husband pin your child down so you can stretch open wounds, with your child bleeding and screaming and crying and choking. To see the look of fearful anticipation flood their eyes every time you go to wash your hands. To feel your child fight with all their strength against what is being forced upon them, to feel them never succumb but continue to fight until it's over. I began worrying that my children would begin to fear me as they associated me with pain. My heart hurt each time I had to do this and I would break down crying, my hands would shake so hard I would loose my grip. It built up a new layer to the callous that I have had to develop with my children. I see it as another scar I wear on my heart. It has become shattered time and again with the pain for my children, yet their love has given it wholeness and the strength to endure anything.

Mommy Brain

Boy do I have a bad case of "Mommy Brain" recently!! This is shaping up to be worse than my previous case of Pregnancy Brain. The majority of my dysfunction revolves around the multitude of doctors and therapists we're involved with. In the last week, I've forgotten to show up for an appointment for myself and have forgotten about Joseph's occupational therapy appointment until she showed up in the kitchen at lunchtime...oops. That one I played cool, like "oh he was hungry "...smooth...the other one didn't go as well - hard to talk yourself around not even showing up. Apologies worked better in that situation. I even have a daily planner with all the appointments listed that I review every morning and apparently forget about by lunch time. I've got to come up with a better system.

Being outnumbered, I've found that surviving (both myself and the kids) has required the development of new skills. For instance, I can now carry two kids up the stairs in such a way that one cannot reach the other and neither gets dropped. I can (usually) catch objects being thrown at me while nursing. I can eat, nurse, and feed Joseph lunch, all at the same time. It's multitasking like I've never known it before. It's difficult when you feel like you have to temporarily neglect one kid to tend to the other when they both need you at the same time. I've caught myself wondering what was I thinking having more than one. Remember that old problem riddle where you have a fox, a chicken, and some grain that all need to get across the river but only one at a time? In which order do you bring them so that the fox and the chicken are not left together and then chicken and the grain do not end up together as well? Taking the kids (and all the stuff you need to survive while out with the kids) in and out of the car is a lot like that problem.

I realized last night that these multitasking survival skills develop at different rates between spouses. I was nursing Christian to sleep for the night and I remembered he needed his medication first, before he fell asleep, so I asked my husband if he could get it for me while I continued nursing. He was in the middle of getting Joseph's medication and didn't understand my reasoning for stopping what he was doing to do what I had asked of him so that Christian got his medication before he fell asleep. "One thing at a time!" was the answer I got. It was in that moment I realized how different our capacities for multitasking have become. I need to make more of a conscious effort to be patient with him and to appreciate the help he gives - in the way that HE gives it.

With school starting this week and Eddie taking 5 classes on top of working 2 jobs to support us, I've been scrambling to figure out how to fly solo with two kids. At this point, a successful day equates to remembering to change and feed the boys, never mind getting the laundry, dishes, housework, or errands completed. Those have all become added bonuses. At the end of the day or in 20 years, which will I remember more: reading the same book 20 times to joyful applause and all those extra cuddles or a clean house with folded clothes?

Catching Up (part 1)

Wow, so much has taken place since my last post and I have a feeling this is going to be a long update!! First of all and most importantly, we welcomed our second miracle baby on June 12, 2012; Christian James was born at 5:38am via emergency c-section 7 weeks early! 4lbs 8oz 17in!

Rewind to the week before he was born. I went in for my 32 week growth ultrasound on Wednesday June 6th. Christian was measuring a little small, around the 32nd percentile. They estimated him at 3lbs 15oz. He was definetly breech. The other concern was that my amniotic fluid level was low. The tech measured it about 5 times and consistantly came up with the same measurement. I had a suspicion that this was the case because A) my belly measurements had been measuring a couple weeks behind and B) I could feel the outline of his bodyparts a little too prominetly. The high risk doctor came in to check the scan. He wanted me to take it easy, drink a lot of fluids, and come back in 2 weeks to check the level again.

That weekend, I came close to paging my OB doctor; I was having braxton hicks contractions that were about 7 minutes apart, lasting about 30 seconds, and were not going away with rest and hydration. It was reminding me a lot of how I felt the evening before my water broke with Joseph. I convinced myself I was over-reacting and I decided to wait and see what happened. Eventually, they either subsided beyond notice after going to bed, or the next day I was just too busy to notice. Monday morning, I went to work and received a call from my OB's office. My doctor had reviewed my ultrasound results and didn't want me to wait 2 weeks before being checked again. He wanted me to have an ultrasound that Wednesday and then he wanted to see me in his office Thursday morning. That evening at home, Joseph was taking his first steps!! We caught it on video and went about our normal routines. I was in bed by 9pm.

At 2am, my water broke. I recall being awake a few seconds before it happened and I knew right away what was occuring. With Joseph, I had questioned peeing my pants, but with Christian, there was no denying the destinct rupture and rush of warm fluid. I jumped out of bed faster than the rush and found myself standing in a puddle BUT - the bed was DRY!! *sigh of relief* "Eddie, Eddie!! Wake Up!! My water broke!!" "Are you serious?!" He jumped out of bed and turned on the lights. I had him fetch me a towel, change of clothes, new underwear, and a pad (we learned the first time that towels and wash cloths really aren't THAT absorbant. I made note that the fluid was clear and then paged my doctor. It was waiting for him to call back and watching my husband rush around to pack the hospital bags that it all caught up to me and I realized how early it was (7 weeks early to be exact) and I started to panic. I was afraid for my baby and I started to cry. Looking back, I chuckle at the image of me standing there in a puddle sobbing while my husband was running around trying to throw random clothes in a bag.

The next few hours and days of my life still stir up too many emotions for me to be able to put them into words. In short, we got to the hospital and eventually it was determined that I was already 4cm dilated and the doctor could feel feet. This is a very dangerous situation because there is nothing blocking the cervical opening and then baby's cord could slip out and cut off blood flow to the baby, resulting in death. Emergency c-section it was. I felt so defeated as I signed the consent forms. This was the ABSOLUTE LAST thing I wanted, especially when my doctor explained the type of incision he would need to use: a vertical uterine incision, also known as a classical c-section. My heart broke because I know that a VBAC after this type of incision was out of the question, and my hopes of having a large family were disinigrating before my eyes.

Christian was born at 5:38am. I was able to see him quickly before he was taken to the NICU. I saw him briefly as I was moved from the recovery room to my hospital room and then I wasn't able to see him again until that evening because my recovery was so difficult. I couldn't move my head without extreeme vertigo and vomiting and every time, it felt like my insides were being ripped apart. I would rather go through unmedicated labor a million times than face recovering from another c-section.

*sigh* All of this recall is a bit too overwhelming and I need a break. To be continued...

From April

Life has been pretty busy trying to balance a special child's needs, work, moving, family life, and pregnancy! Joseph had another developmental evaluation earlier this week and some of his motor skills are still delayed. He continues weekly Occupational Therapy and bi-weekly Physical Therapy. He will also need to start Speach Therapy because he is having oral texture processing issues, which isn't a surprise from all the oral trauma he sustained while vented for the first 3 weeks of his life and then force-fed for the following 3.5 weeks. This is causing him to have some eating issues (gagging and vomiting) that, if not addressed now, could become major eating issues in the near future. This, in addition to his food allergies, is making it challenging to feed him. For the most part, he's only eating fruits and veggies and "puffs" (I found an organic brand that is dairy and soy free). I've literally spent 20 minutes in the baby asile reading ingrediants and putting food back on the shelf because it seems like everything contains soy. We're also finding it challenging to transition him to a sippy-cup. He can't seem to figure out how to get the water out intentionally and when he does manage, he chokes on it. I found a sippy cup with a spout that is very similiar to a bottle nipple but he still can't (or won't) figure it out. All we can do is keep trying. From a GI prespective, he has been doing amazing since having the procedures in February. I don't know what that doctor did when she was inside of him but whatever it was, since then, he has been doing perfect! No more diarrhea, blood, or mucous in his stool! He is still having reflux and continues his medication for this.

Getting Better

Joseph had his procedures done at the hospital on the 9th and has recovered so nicely. Since then, we have seen such wonderful improvements in him! The prescription formula finally seems to be working and his intestines are finally healing. We've even been given the green light to start introducing baby food! We have to go slowly, only one new food every 5-7 days to monitor for allergies. We tried rice cereal but his tummy didn't seem to like that very much so we switched to pears. He loves pears and is doing so well learning to eat them. In a few more days, we're going to be able to add a veggie. Not quite sure how he'll accept it after 5 days of sweet pears...

Joseph has changed so much in the past month! His 2 bottom teeth that have broken through and he can crawl now! He's still mastering the coordination and balance and isn't very good at it, but wow is he thrilled that he can move forward towards something he wants! It's amazing to see all changes and pregress, especially considering where he started from! He's finally getting a little too long for his 6 month clothes. We've gotten so much use out of all his baby clothes because he stays in a size for so long. And now we're going to be reusing everything for our next little boy!

More worries

Joseph had his appointment with his GI doctor on Wednesday and I shared my worries with her: for the first two weeks since switching Joseph to the new formula, he was golden. Then week 3 he started to have diarrhea, and then week 4, the mucus started up again. He would poop up to 8 times a day and it was all liquid and mucus. Joseph seemed to have developed an allergy to this hypoallergenic formula. My worry is that he is going to develop an allergy to any food item he is exposed to and she seemed to think along those same lines. He's still not on any solid foods. She had me switch him to a prescription formula called Elecare and we postponed his procedures and intestinal biopsy until January 31st. We started the Elecare on Wednesday and I have yet to see any improvement - when we had switched him to the previous formula, the improvement was almost instantaneous. He just seems to keep getting worse; the past couple days, his reflux has gotten so bad to the point where he chokes on it and it reeks of a very strong acid. I can tell it's burning him because he'll twitch and make faces. It's different from his normal spit-up. They all day today, his poop was dark green and sticky. This evening, he started having blood in his poop. I called the GI on-call and he seemed to think that he can't have a reaction to the Elecare and it was probably left over from the previous formula and that I should just keep an eye on him and he'll get Joseph's GI doctor a message for tomorrow. I'm not so sure I agree with him, but I'm just going to have to sit with it. Joseph's acting fine and doesn't seem to be in distress at all; I'm just worried because we haven't ever actually seen blood in his poop until the last two this evening. I really hate this awful feeling of worry that is just twisting my stomach into knots. There's nothing I can do to help my baby boy, I'm just watching him get worse and worse. I have to wait and see what his doctor thinks tomorrow. It's out of my hands and this is a difficult feeling to sit with. I keep trying to remind myself that it may be out of my hands but God still has his hands all over it. I just can't wrap my head around why my baby must suffer like this. Whenever I start to wonder why God allows this, I am reminded of the answer I received so many months ago: We had just brought Joseph home from the hospital and I was still having a difficult time processing through all the trauma of what we've been through with him. I was lying awake, just wondering why God would allow such horrible suffering to an innocent baby. I was reliving all the horrible pain he was in and I could recall offering up all of his surgeries and his suffering. I was overtaken with a sense of calm understanding and I just knew the answer, as though it had been whispered to my heart. God allowed this to happen to my son so that his suffering could save souls that would have otherwise not made it to Heaven. Now each of these souls who are rejoicing in Everlasting Life are devoted to praying for Joseph and guarding his soul for all his life. It's still so difficult to accept my child's suffering, but I do find peace in knowing that God has him cradled safely, regardless of what happens.

Two steps forward, one step back

I'm worried Joseph's improvements have been short-lived...his GI system is starting to act up again. He did so well for the first couple weeks of the new formula but now his poops have become more diarrhea than not and recently more mucous is showing up. His breath is starting to take on that fermented odor again, he's starting to choke on his reflux, and he's pooping 7-8 times a day. I'm praying it's something simple like teething, but it just doesn't explain away all these resurfacing symptoms. The skin of his bottom is so raw, there's patches where there is no skin left and it bleeds. I've started using wound care dressings that his visiting nurse provided when we had to deal with this after bringing him home from the hospital. They're helping to the point where he is not screaming in pain with each diaper change.

Joseph has his appt with the GI specialist on the 11th. I really doubt she'll want us to start food with him, especially with this recent turn. I imagine she may want to do another stool study to see if there's still blood in his stool and then, depending on that, she has mentioned doing an endoscopy and colonoscopy and doing biopsies of his intestines. She may just skip to that, or she may suggest a different formula for starters. You know you have a special-needs baby when you look forward to doctors appointments and specialist appointments. The stress of not having a handle on how to help my son is very wearing. I find my strength through my husband and the prayers of family and friends. Thank you everyone, for giving us the continued prayers from which we draw our strength and perseverance. Even though our journey has been two steps forward, one step back, in the end, we're one step ahead of the last.

On a brighter note, Joseph is 8 months old today! What an amazing gift he continues to be! He's getting so good at sitting on his own (for 30 seconds, until he gets excited and forgets to balance!) and he can roll side to side. His newest achievement is the baby sit-up: if I hold down his legs, sometimes he can pull himself right up to a sitting position without grabbing onto anything - his abs are definetly doing better and getting stronger. He's almost rolling from his back to his tummy but his arm keeps getting in the way. We can tell he wants to crawl so badly! We're still working with OT and PT every week to help with his hypertonicity and development. He's still pretty stiff and still having a lot of trouble grabbing and holding things and sometimes he forgets to use his right arm.

Weight check on Wednesday!

Happy New Year!