I mentioned before that we lined up a temporary speech therapist to work with Isaac during the month of July. Unfortunately, the speech therapist had to cancel all of our sessions at the last minute as she needed to return to Australia. We immediately tried to see if we can find someone else but it doesn't look like we will be able to find someone till September since most people are gone for the summer. We are hoping and praying that we can be matched up with a speech therapist in September as its becoming more and more apparent that Isaac needs speech therapy.
We did finally find an English speaking Physical Therapist (PT) for Isaac. Apparently, there is another expat micropreemie, a 24 weeker called Isaac in Tokyo who is 5 or 6 years old. I got connected with this other Isaac's mom recently but unfortunately they are moving out of Japan this summer. She did hook me up with her Isaac's PT who is not specialized with working with children/preemies but have been working with her Isaac for the past 3 or 4 years. Isaac has already had about 4 sessions and we can already tell he is getting stronger. The good news is it seems that Jong has been doing a lot of right things with Isaac and has been helping Isaac build his core strength even before we started the PT sessions. I guess its a good thing Jong is so interested in sports and at one point was pre-med wanting to go into sports medicine!
We have not been getting much information from Isaac's eye check-ups from Toho. We are unable to communicate in any detail with Toho's opthamologists as they can only speak Japanese. So everytime we have gone for checkups, they only tell us that "nothing has changed". During the last check up in January, they told us they cannot check Isaac's vision acuity until he can read eye charts and communicate with us as to what he is reading. They also told us Isaac's eyes were doing fine and told us not to go back for a whole year. However, we have been worried about Isaac's eyes for a while as he has been squinting his left eye a lot. We have also been concerned that his development may be further hampered if he has bad vision. So we discussed our concerns with Isaac's pediatrician at St. Luke's during a recent check up and the doctor kindly referred us to the National Center for Child Health and Development (Kokuritsu), the best children's hospital in the area (and probably Japan). (We were not able to get into this hospital without a referral.) Kokuritsu was one of the hospitals highly recommended to us when we were desperately trying to find hospitals with open NICU beds to accept me as a patient when my contractions couldn't be stopped before Isaac and Rachel were born. We visited the Pediatric Opthalmology Department at Kokuritsu last Monday. While they also cannot confirm Isaac's vision acuity, they did confirm that Isaac's vision in his left eye is quite poor. We saw it for ourselves. The doctor showed Isaac a series of flash cards with a rabbit on the cards. Isaac was asked to point to the eyes of the rabbit and the dots that represented the eyes of the rabbit got smaller and smaller. When we covered up his right eye, he completely missed. The good news is he didn't have the same issue when we covered up his left eye. The doctors said that Isaac's ROP on his left eye is severe and that is probably why his vision is poor. However, they said there is nothing that we can do to help his poor vision on his left eye but that we need to monitor his eyes carefully as he is still at risk for retina detachment due to the severity of his ROP. They recommended that Isaac's eyes be followed up by St. Luke's opthalmologist 3-4 times a year and we should return to Kokuritsu in a year to get his vision acuity checked. The doctors also said that Isaac's eyes did not have any refractive errors so at least for now, he doesn't need glasses. I was amazed at how much more we learned about his eyes condition at Kokuritsu. At Toho, we only knew he had ROP III and got laser surgery and were told at every check up that his eyes were fine. We never knew of the severity of ROP in his left eye. I was also very impressed with the facilities at Kokuritsu. I couldn't help feel a twinge of envy that we were not able to get into Kokuritsu back when I had to be transferred out of Aiiku Hospital. I suspect our NICU experience would have been much more pleasant at Kokuritsu.
Jong and I were a bit bummed out after learning about Isaac's poor vision in his left eye. I have also been struggling a little bit with guilt when I see Isaac struggle to keep up with his peers in his development, as he can't really talk that much and can't do things like jumping. While I was struggling with this, a member of my small group shared the following from a study she has been doing about healing:
Psalm 103:1-5
Praise the LORD, O my soul; all my inmost being, praise His holy name.
Praise the LORD, O my soul, and forget not all His benefits –
Who forgives all your sins and heals all your diseases,
Who redeems your life from the pit and crowns you with love and compassion,
Who satisfies your desires with good things so that your youth is renewed like the eagle.”
In verse 3, where is written that God heals all our diseases, the word “heals” in Hebrew also has an additional meaning (found in The New Strong’s Exhaustive Concordance of the Bible) which is “to mend (by stitching)”. That brings the thought of God bringing wholeness and restoration to a life as someone would mend by stitching. A seamstress cannot mend a fabric she does not hold in her hands. Likewise, God cradles us in His hands as He stitches our broken pieces back together again, forming a new and far more beautiful garment. This can be like a process…sometimes the healing works God has accomplished are processes, stitch-by-stitch so that we will learn to appreciate being continually in His hands.
That was such a beautiful reminder to me. Thinking back to the early days when Isaac was just born, he was so fragile like a very old worn piece of fabric. God definitely had Isaac in his hands and healed him stitch by stitch. Now that Isaac's life is not at jeopardy, its easier for me to lose sight of this and start to worry. But God is still holding Isaac in his hand and is continuing to heal Isaac. We don't know how God will heal Isaac and Isaac may never completely "catch up" or be the same as his full term peers. But God created Isaac exactly as He wants him to be. Isaac is who he is today because of what he went through and will be who God means for him to be because of what he will have to go through. As a mother, its so hard to have to see our children struggle but God uses those struggles to mold us and shape us into what He wants us to be. So I will have to keep reminding myself of this when I start to worry too much or start to feel guilty again about his early birth.
I also have to confess that I had some difficult times after Abigail was born. Some of you may recall that Toho did not allow us to do kangaroo care for Isaac and was not supportive of breastfeeding either. By the time Isaac came home, he was not able to breastfeed from me so I ended up pumping for a year for him. Pumping while Isaac was in the hospital was VERY difficult for me as I spent the pumping time feeling the pain and guilt that Isaac was struggling in the hospital and it felt like I was wringing all the blood out of my heart. Also, the week after Rachel's water broke, during the first time I was allowed to get up to go to my daily checkup by myself (but we still didn't have much hope that Rachel or Isaac were going to make it), the nurse led us down this corridor where there was a poster of a woman breastfeeding her baby hanging on the wall. I saw the poster and started weeping. My heart just ached to be able to do what that woman was doing - to breastfeed my babies. So this time around, I really, really wanted to breastfeed Abigail. Unfortunately, as many moms will know, breastfeeding a newborn is not easy, especially during the first few weeks and especially when there are people who are not committed to support breastfeeding around the new mom. It was a difficult experience and while I was able to breastfeed for a while, it was a constant struggle. As I approached the end of my maternity leave (I returned to work full time last week on July 1st), I became quite emotional because I knew in my heart that it was over. Each time Abigail got a bottle (and I knew that was not a good thing to do but there were other forces at work), she was less cooperative with breastfeeding as sucking from the bottle was so much easier for her. So I knew that once I went back to work and she was getting bottles all day, it was highly likely that she would reject my breasts all together. So I was very sad. My supply also went low so on top of that I was worried about not being able to pump enough for her. Fortunately, my supply improved after my breasts got used to pumping. However, Abigail is no longer willing to bf from me. Fortunately, I have been able to accept this reality and have now moved on and am happy that at least I am still able to provide her with my breastmilk.
In retrospect, I now realized that I probably did not process my grief from losing Rachel and Isaac being born so early properly. I tried too hard to "be strong" and to keep going for Isaac 2 years ago and never allowed myself to really grief. So this time around, I tried too hard to "make things right" by trying to have the "perfect" newborn experience and to me that meant breastfeeding. I was so fixated on being able to do it and was so hard on myself. I had so many days when I ended up in tears because Abigail didn't bf well from me. Jong reminded me that Abigail is her own special person and it is not fair to try to use her to make up what I lost from last time. In fact, I have been so unfair to her because at times I would get angry at her because she wouldn't feed from me. I am so relieved and glad that I have been able to let this go. Abigail is becoming so cute now I want to really be able to enjoy her without stressing about breastfeeding. She loves "talking" to us (something which Isaac never did) and will actually yell at us if we ignore her. She is also smiling more and more.
So anyway, I have been working full time again for over a week now and things are actually going okay. Isaac is going to summer school 5 days a week for the first 4 weeks in July and is loving it. Also, I almost forgot to mention this. Praise God it must have been everyone's prayers because Isaac has been eating better since I last posted. Apart from potato chips we also found out he will eat McDonald's french fries. So that is a variation from rice though its still just starch. Its funny how seeing Isaac voluntarily stuff french fries in his mouth made Jong and I so happy.
Jong has been very busy and traveling a lot and away for most week days but fortunately he is able to make it home on most weekends and is spending really good quality time with Isaac when he is home.
And now onto some lighter updates with pictures.
Isaac loves his pacifier but we only give it to him for his nap and when he goes to bed at night. So there are 2 things our resourceful guy has been doing:
(1) he hides his pacifiers and goes back to find them later. So all of a sudden, we will see him running around sucking on a pacifier he used a day or so before.
(2) he eyes Abi's pacifiers like a hawk and sneaks in to steal them when he can. In fact, I think he might be only interested in Abi because he can take her pacifier!
I guess we are not weaning him off of his pacifiers any day soon. Or he will end up stealing Abi's ALL the time! Here is a picture to illustrate:
Here is a picture we took on Jong's birthday (the big 4-0!) with Isaac showing his true feelings for his new baby sister:
Isaac's preschool held a graduation ceremony for finishing out the year. He was in the Bumblebee class hence the costume. The kids were so cute and sang for us.
Here is a funny picture of Abigail and Isaac after the festivities:
We dedicated Abigail at church on June 15, Father's Day:
Isaac's hair was getting long so we decided to give him a summer cut.
We chopped it all off! Its amazing how much has grown back already though!
Here is a picture of Abigail laughing:
And a very cute picture of Abigail wearing a hat. I think she looks cute in a hat due to her lack of hair. :-)
And last but not least, our boy wishing a belated Happy July 4th to everybody!
If you made it this far wow thanks for reading my ramblings!Take care and God bless,
Sonia
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7 comments:
I can't believe how your kids are growing. You have an amazing family!
I made it to the end and really enjoyed your update. I love your testimonies of God's goodness and direction!
Lord Bless YOU!
wonderful update sonia! the kids are beautiful!
Hi Sonia, Just want to encourage you that a friend of mine has 3 children and she had trouble with breastfeeding with all 3 of them. She end up pumping for all 3. Both Isaac and Abi are looking wonderful and very cute. Can't wait to see them in person when I visit in Dec.
Know what? I also noticed that Abigail likes to point her finger like Isaac did when he was a baby. :)
Sonia Ty's left eye is not working either but it's due to his brain hemorrages. We are patching and he is in glasses now. Glad you went to another opth because they can get an idea of their vision issues despite them being able to read a chart. Also, Ty didn't jump until he was over 3 years old but he can do it now:). That picture of Abigail laughing is sooooo cute!!! Love it!
On the BF note...I hear you. I really struggled with that with Tanner because I didn't know if I would ever be pregnant again and I wanted everything perfect to. The Dr.s insisted I quit nursering when he was 4 months old because he was losing too much weight. I cried and cried. BUT truth be told, not having to fight with a baby over breast feeding and having little option but to use formula with Ty and Tori - resulted in a much less stress ridden mommy and they are no worse for the wear. :) Much love friend. :)
Sonia,
One book I'd recommend that gave us some good ideas for helping Hallie with her speech is a book called Becoming Verbal with Childhood Apraxia: New Insights on Piaget for Today's Therapy and I know that Amazon carries it. It was great in terms of helping us understand the mechanisms behind creating a conversational framework for a child who doesn't speak (and back in February, that was where Hallie was at with speaking) and I think it did help her, too. I have heard good things about the Speech Therapist, Pam Marshalla, who wrote the book from our Early Intervention speech therapist. Anyway, maybe it'll give you a few ideas for what to do to help Isaac along until a ST gets into the picture. And if you can't get it easily in Japan, I'll dig up our copy, xerox it and send it to you or order you a copy and mail it to you from here---just let me know via email if you want me to do that.
Self-feeding fries is great. Hallie loves her fries (she gets a bunch every day, and it helps with calories). We just started to cut up slices of banana into 6 pieces (each slice into little pie shaped chunks), put them on a fork for her (baby fork---she likes to put them on the fork herself, too, but sometimes is a bit less than efficient at this) and eat them that way. Slowly but surely, these kids are coming along. The other thing you might try to work on Isaac's oral motor skills is the red chewy tube thing that they sell on various therapy websites. Apropos of this, I have heard that the binky isn't a bad thing necessarily for non-verbal kids with poor oral motor skills and muscles---it helps them work on their oralfacial muscles and these are needed for speech. Maybe your new PT knows something about this. I can also ask our EI ST when she gets back from her summer vacation in early August if she knows any good exercises that you can do to strengthen his facial muscles (blowing on horns, and recorders, and harmonicas helped us a lot, so you can definitely try that).
Jong totally does not look 40, btw!
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